tag:blogger.com,1999:blog-21522118001190762892024-03-13T08:07:09.650-07:00Living with Periodic Paralysis: The BlogThis blog was created and designed to educate the world about Periodic Paralysis a rare, inherited, hard to diagnose, debilitating and cruel mineral metabolic disorder. I have two variants of this condition and my life is filled with constant challenges as I attempt to manage my symptoms to stay alive. My husband and I are co-founders of the Periodic Paralysis Network, Inc. This blog is an extension of our educational and support network at www.periodicparalysisnetwork.com .Susan Q.Knittle-Hunterhttp://www.blogger.com/profile/14423032446507636527noreply@blogger.comBlogger186125tag:blogger.com,1999:blog-2152211800119076289.post-44275262061610651492022-02-07T15:16:00.001-08:002022-02-07T15:16:30.466-08:00Happy 11th Anniversary Periodic Paralysis Network!!!<p style="text-align: center;"> <b><span style="font-family: helvetica; font-size: medium;">Happy 11th Anniversary Periodic Paralysis Network!!!<br /></span></b><br /><span style="font-family: helvetica;"><b>Providing HOPE to individuals with Periodic Paralysis for eleven years!!!</b></span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEiwPfzEcfgPU4u9OzhW7CFE7sxaZH1H2YztjJf8z718gPq0IDWFe__22q_HdEN47AS0luYoHS_QvgjmzI6h8qALEaYEkDl7jBClpXq7oaulRyquuGQBnBpSw9r1mNQr9E4OP8RmM5PDXXgINeSgqCIfo_ERPqnsNy7ESLf1PRtm_UjhUpjvPDOA1LtMwQ=s960" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="960" height="213" src="https://blogger.googleusercontent.com/img/a/AVvXsEiwPfzEcfgPU4u9OzhW7CFE7sxaZH1H2YztjJf8z718gPq0IDWFe__22q_HdEN47AS0luYoHS_QvgjmzI6h8qALEaYEkDl7jBClpXq7oaulRyquuGQBnBpSw9r1mNQr9E4OP8RmM5PDXXgINeSgqCIfo_ERPqnsNy7ESLf1PRtm_UjhUpjvPDOA1LtMwQ=s320" width="320" /><div class="separator" style="clear: both; text-align: center;"><br /></div></a></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEhPgihZ4KgUUu6eCqtDapKehFKRqIXFpoG-oOK9So5gjNw18IlwJvvuRiIbqnctS0b9HwNTqQHxhUSNXZJZa2e6yDiF_Ykl1E4VLF2-mLwh48yBUBSvWGLLpLXAMMy4F0C9if8MJGgmvrMBn8ykahmJFG-tXvdkAGPHgAXPfhjPhY0mdpN8F20Ks8D2RA=s960" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="960" height="239" src="https://blogger.googleusercontent.com/img/a/AVvXsEhPgihZ4KgUUu6eCqtDapKehFKRqIXFpoG-oOK9So5gjNw18IlwJvvuRiIbqnctS0b9HwNTqQHxhUSNXZJZa2e6yDiF_Ykl1E4VLF2-mLwh48yBUBSvWGLLpLXAMMy4F0C9if8MJGgmvrMBn8ykahmJFG-tXvdkAGPHgAXPfhjPhY0mdpN8F20Ks8D2RA=w359-h239" width="359" /></a></div><br /><p><br /></p>Susan Q.Knittle-Hunterhttp://www.blogger.com/profile/14423032446507636527noreply@blogger.com0tag:blogger.com,1999:blog-2152211800119076289.post-3414541038576483552022-02-07T15:02:00.001-08:002022-02-07T15:17:01.283-08:00 Osteoporosis and Periodic Paralysis<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEgflITIqaLfaSBqOic-nFeUEHfOtliwd0-xioRuwa4-pJgksmZxflPynD0IPIGaQrsB4XFttuQH7iPXd_dBjlEOJqWcP9RDV4rE4uRrckFX_EgTPkuTsuYRrGf7_7gUY7EBRlKPCnZJLdC8xwuUZg7U_omkj-R7Kk7iz154EeESKpw_xJjA-imtgvQf2A=s777" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="720" data-original-width="777" height="297" src="https://blogger.googleusercontent.com/img/a/AVvXsEgflITIqaLfaSBqOic-nFeUEHfOtliwd0-xioRuwa4-pJgksmZxflPynD0IPIGaQrsB4XFttuQH7iPXd_dBjlEOJqWcP9RDV4rE4uRrckFX_EgTPkuTsuYRrGf7_7gUY7EBRlKPCnZJLdC8xwuUZg7U_omkj-R7Kk7iz154EeESKpw_xJjA-imtgvQf2A=s320" width="320" /></a></div><div style="text-align: center;"><span style="font-size: medium;"> <b><span style="font-family: Arial;">Osteoporosis and Periodic Paralysis</span></b></span></div><p></p><div><br /></div><p class="MsoNormal"><span style="font-family: Arial;">
<b>Periodic Paralysis is a 4th Class Mineral Metabolic Disorder.</b> <br />
<br />
"In general, the genetic metabolic disorders are caused by genetic defects
that result in missing or improperly constructed enzymes necessary for some
step in the metabolic process of the cell.<br />
<br />
The three largest classes of metabolic disorders are:<br />
<br />
Glycogen storage diseases -- disorders affecting carbohydrate metabolism<br />
Fatty oxidation disorders -- disorders affecting the metabolism of fat
components<br />
Mitochondrial disorders -- disorders affecting the mitochondria which are the
central "powerhouses" of the cells.<br />
<br />
**<b>A fourth class, the channelopathies (some of which cause periodic
paralysis and/or malignant hyperthermia) could be considered to be metabolic disorders
as well, though they are not always classified as such. These disorders affect
the ion channels in the cell and organelle membranes, resulting in improper or
inefficient transfer of ions through the membranes." **</b><br />
<br />
<a href="https://sites.google.com/site/metaboliccare/metabolicdisorder">https://sites.google.com/site/metaboliccare/metabolicdisorder</a><br />
<br />
<a href="http://www.encognitive.com/node/1181">http://www.encognitive.com/node/1181</a><o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-family: Arial;"><a href="https://ufhealth.org/mineral-metabolism-disorders">https://ufhealth.org/mineral-metabolism-disorders</a><o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-family: Arial;"><br />
<br />
<b>How does this relate to osteoporosis?</b><br />
<br /><b><i>
Periodic Paralysis is a mineral metabolic disorder, due to that, chronic
metabolic acidosis can develop in many of us with Periodic Paralysis. As such,
it can affect our bones.</i></b></span></p><p class="MsoNormal"><span style="font-family: Arial;"><br />
<br />
"Metabolic acidosis may effect changes in bone by directly inducing
dissolution of bone,..."<br />
<br />
"...As a consequence, in some patients with normal renal function,
osteoporosis and osteomalacia have been reported that are linked in part to
metabolic acidosis. ..."<br />
<br />
<a href="https://pubmed.ncbi.nlm.nih.gov/7614335/">https://pubmed.ncbi.nlm.nih.gov/7614335/</a><br />
<br />
”</span><span style="background: white; color: #2a2a2a; font-family: Arial; mso-bidi-font-size: 7.5pt;">Metabolic acidosis has been shown to lead to calcium loss
from bone (</span><span style="font-family: Arial;"><a><span style="background: white; border: 0in none windowtext; color: #006fb7; padding: 0in;">7</span></a></span><span style="background: white; color: #2a2a2a; font-family: Arial; mso-bidi-font-size: 7.5pt;">, </span><span style="font-family: Arial;"><a><span style="background: white; border: 0in none windowtext; color: #006fb7; padding: 0in;">8</span></a></span><span style="background: white; color: #2a2a2a; font-family: Arial; mso-bidi-font-size: 7.5pt;">), to inhibit osteoblast function and stimulate osteoclast activity (</span><span style="font-family: Arial;"><a><span style="background: white; border: 0in none windowtext; color: #006fb7; padding: 0in;">9</span></a></span><span style="background: white; color: #2a2a2a; font-family: Arial; mso-bidi-font-size: 7.5pt;">, </span><span style="font-family: Arial;"><a><span style="background: white; border: 0in none windowtext; color: #006fb7; padding: 0in;">10</span></a></span><span style="background: white; color: #2a2a2a; font-family: Arial; mso-bidi-font-size: 7.5pt;">), and to impair bone mineralization (</span><span style="font-family: Arial;"><a><span style="background: white; border: 0in none windowtext; color: #006fb7; padding: 0in;">11</span></a></span><span style="background: white; color: #2a2a2a; font-family: Arial; mso-bidi-font-size: 7.5pt;">).”<br />
<br />
<a href="https://academic.oup.com/jcem/article/98/1/207/2823184">https://academic.oup.com/jcem/article/98/1/207/2823184</a><o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-family: arial;">“Metabolic acidosis increases urine calcium excretion
without an increase in intestinal calcium absorption, resulting in a net loss
of bone mineral.”</span></p><p class="MsoBodyText"><span style="font-family: arial;"><a href="https://pubmed.ncbi.nlm.nih.gov/14629607/#:~:text=Metabolic%20acidosis%20increases%20urine%20calcium,net%20loss%20of%20bone%20mineral">https://pubmed.ncbi.nlm.nih.gov/14629607/#:~:text=Metabolic%20acidosis%20increases%20urine%20calcium,net%20loss%20of%20bone%20mineral</a>.</span></p>
<p class="MsoNormal"><span style="background: white; color: #2a2a2a; font-family: Arial; mso-bidi-font-size: 7.5pt;"><!--[if !supportEmptyParas]--> <!--[endif]--><o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-family: Arial;"><!--[if !supportEmptyParas]--> </span><span style="font-family: Arial;">”</span><b><span style="background: white; color: #636363; font-family: Arial; mso-bidi-font-size: 9.0pt;">When your electrolyte levels are out of balance (Low)…, you
experience an acid/base (pH) imbalance.</span></b><span style="background: white; color: #636363; font-family: Arial;"> Specifically, your pH
levels decrease, creating metabolic acidosis. Symptoms include confusion,
fatigue, headache and increased heart rate. <b>If your electrolyte levels are
out of control (High)</b>…, your pH levels increase, causing metabolic
alkalosis...”</span></p><p class="MsoNormal"><span style="font-family: Arial;">
<br />
<a href="https://www.multicare.org/services-and-departments/nephrology/conditions-we-treat/electrolyte/#:~:text=When%20your%20electrolyte%20levels%20are,headache%20and%20increased%20heart%20rate">https://www.multicare.org/services-and-departments/nephrology/conditions-we-treat/electrolyte/#:~:text=When%20your%20electrolyte%20levels%20are,headache%20and%20increased%20heart%20rate</a>.<o:p></o:p></span></p>
<p class="MsoNormal"><br />
<br />
<span style="font-family: Arial;"><b><i>Here is one study that touches on the
relationship between potassium levels and osteoporosis (from Korea):</i></b><br />
</span><br />
”<b><span style="background: white; font-family: Arial;">The western diet including high meats and cereal grains
produces a low-grade metabolic acidosis [</span><span style="font-family: Arial;"><a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6997142/#B11"><span style="background: white; color: #2f4a8b; mso-bidi-font-size: 8.0pt;">11</span></a></span></b><span style="background: white; font-family: Arial;"><b>].
The continual release of alkaline salts from bone for acid-base balance would
cause bone loss and osteoporosis </b>[</span><span style="font-family: Arial;"><a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6997142/#B13"><span style="background: white; color: #2f4a8b; mso-bidi-font-size: 8.0pt;">13</span></a></span><span style="background: white; font-family: Arial;">].
Fruit and vegetable intake could balance this excess acidity by providing
alkaline salts of potassium [</span><span style="font-family: Arial;"><a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6997142/#B14"><span style="background: white; color: #2f4a8b; mso-bidi-font-size: 8.0pt;">14</span></a></span><span style="background: white; font-family: Arial;">].
<b>Thus, the alkaline potassium salt is thought to prevent bone resorption for pH
homeostasis [</b></span><span style="font-family: Arial;"><a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6997142/#B15"><span style="background: white; color: #2f4a8b; mso-bidi-font-size: 8.0pt;"><b>15</b></span></a></span><span style="background: white; font-family: Arial;"><b>].
In addition, increasing potassium intake increases urinary retention, reducing
loss of calcium and thus creating a more positive calcium balance and
inhibiting bone resorption</b> [</span><span style="font-family: Arial;"><a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6997142/#B16"><span style="background: white; color: #2f4a8b; mso-bidi-font-size: 8.0pt;">16</span></a></span><span style="background: white; font-family: Arial;">,</span><span style="font-family: Arial;"><a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6997142/#B17"><span style="background: white; color: #2f4a8b; mso-bidi-font-size: 8.0pt;">17</span></a></span><span style="background: white; font-family: Arial;">].
The potassium bicarbonate, but not sodium bicarbonate, reduced urinary calcium
excretion in healthy men [</span><span style="font-family: Arial;"><a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6997142/#B18"><span style="background: white; color: #2f4a8b; mso-bidi-font-size: 8.0pt;">18</span></a></span><span style="background: white; font-family: Arial;">],
and the potassium citrate reduced urinary calcium excretion in men with uric
acid nephrolithiasis [</span><span style="font-family: Arial;"><a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6997142/#B19"><span style="background: white; color: #2f4a8b; mso-bidi-font-size: 8.0pt;">19</span></a></span><span style="background: white; font-family: Arial;">].
<b>It suggests that the positive effect of potassium could be through either
suppressing calcium resorption or bone mineral dissolution or both</b> [</span><span style="font-family: Arial;"><a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6997142/#B20"><span style="background: white; color: #2f4a8b; mso-bidi-font-size: 8.0pt;">20</span></a></span><span style="background: white; font-family: Arial;">].”<br />
</span><br />
<span style="font-family: Arial;"><a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6997142/">https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6997142/</a><o:p></o:p></span></p>
<p class="MsoNormal"><span style="font-family: Arial;"><!--[if !supportEmptyParas]--> <!--[endif]--><o:p></o:p></span></p>
<span style="background: white; font-family: Arial; font-size: 12pt;"><b><i>If
people with Periodic Paralysis, experience low potassium for long periods of
time, without a diagnosis or being wrongly diagnosed or mistreated,
osteoporosis can develop. Thus it can be a complication related to Periodic
Paralysis. </i></b></span>Susan Q.Knittle-Hunterhttp://www.blogger.com/profile/14423032446507636527noreply@blogger.com1tag:blogger.com,1999:blog-2152211800119076289.post-48440563705948367852022-01-21T08:44:00.000-08:002022-01-21T08:44:33.002-08:00<p> </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEh01-tzw927SI7bzcobHAN4Knh_DeGG1pf5IkOwhyiawhcveuzzBS0zsFB47e9BYgGCgRQcnBfju0iTWRIiPBSmzjPHSwo5RP7ytNNgPLtqQGYbBk_l0XzhlD_AppxmRZaydOOTyO3eHYMccAegFIhm8vP_azoo6UUE6EuiXXHqy84Y49t9ihERCiiy1Q=s960" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="960" height="266" src="https://blogger.googleusercontent.com/img/a/AVvXsEh01-tzw927SI7bzcobHAN4Knh_DeGG1pf5IkOwhyiawhcveuzzBS0zsFB47e9BYgGCgRQcnBfju0iTWRIiPBSmzjPHSwo5RP7ytNNgPLtqQGYbBk_l0XzhlD_AppxmRZaydOOTyO3eHYMccAegFIhm8vP_azoo6UUE6EuiXXHqy84Y49t9ihERCiiy1Q=w400-h266" width="400" /></a></div><div style="text-align: center;"><span style="font-family: arial; font-size: medium;"><b><br />The Periodic Paralysis Network Support Group:<br /><br />https://www.facebook.com/groups/periodicparalysisnetworksupportgroup/members<br /><br /><br />The Periodic Paralysis Network Website:<br /><br /></b></span></div><div style="text-align: center;"><b><span style="font-family: arial; font-size: medium;">periodicparalysisnetwork.com</span></b></div><p></p>Susan Q.Knittle-Hunterhttp://www.blogger.com/profile/14423032446507636527noreply@blogger.com0tag:blogger.com,1999:blog-2152211800119076289.post-68828070795113161222021-04-25T11:05:00.000-07:002021-04-25T11:05:50.904-07:00True Periodic Paralysis or Periodic Paralysis-like?<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCXnqH99sQ6pU06pb2TeMFAcaDLpzG5q-LEALYEUXbz0ZcB5L5i2RPWT5fs5Mxnxjr2JXQ1EvVtlxU6fDk6s-qqsq-quyXH8BYD6nLP8yY8MqUuw5hsdFmaUmJapY_tR5umUcE0Ckk0Lgv/s626/genetic-engineering-science-concept-illustration_160308-3116.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="417" data-original-width="626" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCXnqH99sQ6pU06pb2TeMFAcaDLpzG5q-LEALYEUXbz0ZcB5L5i2RPWT5fs5Mxnxjr2JXQ1EvVtlxU6fDk6s-qqsq-quyXH8BYD6nLP8yY8MqUuw5hsdFmaUmJapY_tR5umUcE0Ckk0Lgv/s320/genetic-engineering-science-concept-illustration_160308-3116.jpg" width="320" /></a></div> <br /><br /><span style="background-color: white; color: #050505; font-family: inherit; text-align: justify;"><b>True Periodic Paralysis or Periodic
Paralysis-like?</b></span><p></p><br />
<p class="MsoNormal" style="text-align: justify;"><span style="background: white; color: #050505; font-family: inherit;"><br />
A question was asked this week in the PPNI Support Group about the connection
to Periodic Paralysis and kidney disease and another question was asked about
certain drugs causing Periodic Paralysis. I would like to explain this here to
make sure all are able to see the answer.<o:p></o:p></span></p>
<p class="MsoNormal" style="text-align: justify;"><span style="background: white; color: #050505; font-family: inherit;">Periodic Paralysis (PP) all forms: Hypokalemic PP and some forms of Thyrotoxic
PP (symptoms from low potassium); Hyperkalemic PP and Paramyotonia Congenita
PMC (symptoms from high potassium); Normokalemic PP (symptoms within normal
levels of potassium); and Anderson-Tawil Syndrome ATS (symptoms from low, high
and normal ranges of potassium) are all ion channelopathies, also called
mineral metabolic disorders and are the result of genetic mutations and only
genetic mutations. This means you have a predisposition to the medical
condition due to faulty genes. Because of the faulty genes, when the body is
exposed to certain conditions such as heat, cold, pain, drugs, anesthesia, IVs,
food additives, fillers and dyes, chemicals, stress, different phases of sleep,
exercise, exertion and much more, the symptoms of muscle weakness and paralysis
are triggered. If this is not the case...you do not have Periodic
Paralysis...you have a periodic paralysis-like condition. <o:p></o:p></span></p>
<p class="MsoNormal" style="text-align: justify;"><span style="background: white; color: #050505; font-family: inherit;"><!--[if !supportEmptyParas]--> </span><span style="background-color: white; color: #050505; font-family: inherit;">You may have hypokalemia (low potassium) or
hyperkalemia (high potassium) from other things, that cause symptoms like those
of us with Periodic Paralysis, but the real cause of the symptoms is not from PP,
but possibly a kidney issue, diabetic ketoacidosis or taking beta-blockers or
other drugs and much more.</span></p>
<p class="MsoNormal" style="text-align: justify;"><span style="background: white; color: #050505; font-family: inherit;">That being said, if you have been genetically tested and the results were
negative and the doctors say you do not have PP it may just mean that they did
not test for the form you have. Only about 50% of the genetic mutations for the
varying forms of PP have been discovered as of yet. That means only 50% of us
could have a positive test with a known mutation. The testing that is being
done for free only tests for a few of the forms of PP. They are looking for
specific ones. This means the likelihood of getting a positive diagnose through
genetic testing is even less than 50%. So a negative result means that they did
not test for the form you likely have, that was not yet been discovered or not
tested for. So, we do not get true Periodic Paralysis from anything other than
being born with the genetic mutation for it, but it may not yet have been
discovered or tested for. <br />
<br />
Certain drugs, do not cause it...they trigger our symptoms if we have the genetic
mutation. Kidney disease does not cause PP, but it may and does affect our
kidneys and we can have kidney disease existing with PP. Certain medical
conditions like thyroid conditions can cause low potassium and symptoms like
those of us with PP, but they do not cause the mineral metabolic disorder known
as Periodic Paralysis. <o:p></o:p></span></p>
<p class="MsoNormal" style="text-align: justify;"><span style="background: white; color: #050505; font-family: inherit;"><!--[if !supportEmptyParas]--> </span><span style="background-color: white; color: #050505; font-family: inherit;">It is essential for each and every one of us to
understand just what Periodic Paralysis is and why we have it. We have it, a
mineral metabolic disorder, also known as an ion channelopathy, from a genetic
mutation that affects the way potassium flows in and out of our muscle cells,
which is affected and triggered by many things, but not caused by them.</span></p>
<p class="MsoNormal" style="text-align: justify;"><span style="background: white; color: #050505; font-family: inherit;"><!--[if !supportEmptyParas]--> </span><span style="background-color: white; color: #050505; font-family: inherit;">Below are articles with lists of causes of
hyperkalemia and hypokalemia.</span></p>
<span class="py34i1dx"><span style="background: white; font-family: inherit; font-size: 12.0pt; mso-ansi-language: EN-US; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US;">https://www.mayoclinic.org/symptoms/hyperkalemia/basics/causes/sym-20050776</span></span><span style="background: white; color: #050505; font-family: inherit; font-size: 12.0pt; mso-ansi-language: EN-US; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US;"> </span><span class="py34i1dx"><span style="background: white; font-family: inherit; font-size: 12.0pt; mso-ansi-language: EN-US; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US;">https://www.mayoclinic.org/symptoms/low-potassium/basics/causes/sym-20050632</span></span>Susan Q.Knittle-Hunterhttp://www.blogger.com/profile/14423032446507636527noreply@blogger.com1tag:blogger.com,1999:blog-2152211800119076289.post-53295017720981258872021-02-07T09:11:00.000-08:002021-02-07T09:11:21.262-08:00Providing HOPE for Ten Years!!<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9_y9VmOVbuMIpsKEIxP045vU_3Uj9ItAFe7GxLtZMB1xDbEdgrK7t9gAAszO2W9TUw7JIi7BbuTdkXIaH9IAzgjMF7QS5r5L-4efpGEM3ciQPMnM6Gx7XQ8e2Gfu_56svg9YZ_05-jRu3/s960/PPN+10th+Anniversary+2021.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="960" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9_y9VmOVbuMIpsKEIxP045vU_3Uj9ItAFe7GxLtZMB1xDbEdgrK7t9gAAszO2W9TUw7JIi7BbuTdkXIaH9IAzgjMF7QS5r5L-4efpGEM3ciQPMnM6Gx7XQ8e2Gfu_56svg9YZ_05-jRu3/w320-h213/PPN+10th+Anniversary+2021.JPG" width="320" /></a></div> <br /><span style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; font-weight: 600;"><br />Today is the 10th anniversary of Periodic Paralysis World Awareness Day. We chose this date because February 7th 2011 is the day I got my Andersen-Tawil Syndrome diagnosis, after over 50 years of symptoms and searching for answers. We then created our Periodic Paralysis Network Forum!!<br /><br /></span><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjeakVV1BbhxmivYwaXuIKhDhTJ_yXhTWxoZ26SSq8aYXLP_Lbitc2L5DOrq0f6BFg9KpHOxqLnuKVzhQAv3ErQiKO3Tne9JQc3VCWenKzyKBqZOEwxkQcyNUNVr_IjoG9-ZI5ggmZ4GHtg/s960/PPN+Awareness+Day+1+2021.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="960" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjeakVV1BbhxmivYwaXuIKhDhTJ_yXhTWxoZ26SSq8aYXLP_Lbitc2L5DOrq0f6BFg9KpHOxqLnuKVzhQAv3ErQiKO3Tne9JQc3VCWenKzyKBqZOEwxkQcyNUNVr_IjoG9-ZI5ggmZ4GHtg/s320/PPN+Awareness+Day+1+2021.JPG" width="320" /></a></div><br /><br /><a href="https://livingwithperiodicparalysis.blogspot.com/2020/07/providing-awareness-of-periodic.html">https://livingwithperiodicparalysis.blogspot.com/2020/07/providing-awareness-of-periodic.html</a><p></p>Susan Q.Knittle-Hunterhttp://www.blogger.com/profile/14423032446507636527noreply@blogger.com1tag:blogger.com,1999:blog-2152211800119076289.post-87815278600660727522021-01-22T10:23:00.000-08:002021-01-22T10:23:22.014-08:00Providing HOPE for over 1,100 members!<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6BSG-oBn7c5qvno7hpHeDpNhXKiOO4qjmMwj_sf5OWqWzoUIygSQPEEZ_czRegLLfYBHimM4fmEp6HqP1RFokqg7eN7ONjOqs2dtENS0ZXxtB6Hkq_E0knDYY7z-z9imaTW9DpLS6R9Ad/s960/PPN+Support+Group+1%252C100.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="960" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6BSG-oBn7c5qvno7hpHeDpNhXKiOO4qjmMwj_sf5OWqWzoUIygSQPEEZ_czRegLLfYBHimM4fmEp6HqP1RFokqg7eN7ONjOqs2dtENS0ZXxtB6Hkq_E0knDYY7z-z9imaTW9DpLS6R9Ad/s320/PPN+Support+Group+1%252C100.JPG" width="320" /></a></div><br /> <p></p>Susan Q.Knittle-Hunterhttp://www.blogger.com/profile/14423032446507636527noreply@blogger.com0tag:blogger.com,1999:blog-2152211800119076289.post-33839052524286672712020-12-10T10:00:00.002-08:002020-12-10T14:25:32.201-08:00The Digestive Tract and Periodic Paralysis<p> </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiljvDlktM1fIBrfF0cqiqsCkDtU3D67tovo7U15FqAeAxIWuIUzoxRO0twM7Naicg5O4Fv8hdXHFiVMqcsgKhcuPyDrnZr61lqnq2rPY8mw1RAey-cpP322mwFXUxUN2rhYMtjpDXEhB-p/s296/12641389531288784077Digestive_system_diagram_en.svg.med.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="296" data-original-width="207" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiljvDlktM1fIBrfF0cqiqsCkDtU3D67tovo7U15FqAeAxIWuIUzoxRO0twM7Naicg5O4Fv8hdXHFiVMqcsgKhcuPyDrnZr61lqnq2rPY8mw1RAey-cpP322mwFXUxUN2rhYMtjpDXEhB-p/s0/12641389531288784077Digestive_system_diagram_en.svg.med.png" /></a></div><br /><br /><div style="text-align: center;"><span style="background-color: #f0f2f5; font-family: Arial;">The Digestive Tract and Periodic Paralysis</span></div><span style="background-color: #f0f2f5; font-family: Arial;"><br /><br />We
were asked in our Periodic Paralysis Network Support Group today if anyone with Periodic Paralysis (PP) has ongoing
digestive problems. My answer is YES; I do have severe gastric/digestive issues,
as do many of us in this group with Periodic Paralysis. It seems the PP can affect our digestive tract.
We can have issues from acid reflux, constipation and gastritis to paralytic
ileus* (malfunction of the muscles in the intestine) and the acidity issue can
also be related to PP because we tend to have chronic metabolic acidosis of which
acid reflux can be a symptom.</span><p></p><p><span style="background-color: #f0f2f5; color: #050505; font-family: Arial;">I have ended up in the ER/hospital twice in the past three
years with digestive issues and am going through the cycle again right now. Over one
year's time, my daughter was in the hospital 9 times with the longest stay 40
days and she lost 90 pounds during that year, dealing with paralytic ileus and Cyclic Vomiting
Syndrome (CVS).</span></p><p class="MsoNormal" style="background: rgb(240, 242, 245);"><span style="background-attachment: initial; background-clip: initial; background-image: initial; background-origin: initial; background-position: initial; background-repeat: initial; background-size: initial; color: #050505; font-family: Arial;">We control our acid reflux with a pH balanced diet which keeps our acidity levels in balance. Diet and managing our potassium/electrolyte levels is especially important for those with PP for many reasons, to include managing our digestive tract, from beginning to end.</span></p><p class="MsoNormal" style="background: rgb(240, 242, 245);"><span style="font-family: Arial;">*“Paralytic
ileus is the occurrence of intestinal blockage in the absence of an actual
physical obstruction. This type of blockage is caused by a malfunction in the
nerves and muscles in the intestine that impairs digestive movement. Causes of paralytic ileus include electrolyte imbalances… "</span></p><p class="MsoNormal" style="background: rgb(240, 242, 245);"><span style="font-family: Arial;"><a href="https://www.healthgrades.com/right-care/digestive-health/paralytic-ileus#:~:text=Paralytic%20ileus%20is%20the%20occurrence,intestine%20that%20impairs%20digestive%20movement." target="">https://www.healthgrades.com/right-care/digestive-health/paralytic-ileus#:~:text=Paralytic%20ileus%20is%20the%20occurrence,intestine%20that%20impairs%20digestive%20movement.</a></span></p><p class="MsoNormal" style="background: rgb(240, 242, 245);"><span style="font-family: Arial;"><a href="https://livingwithperiodicparalysis.blogspot.com/2013/12/periodic-paralysis-and-metabolic.html">https://livingwithperiodicparalysis.blogspot.com/2013/12/periodic-paralysis-and-metabolic.html</a></span><a href="https://livingwithperiodicparalysis.blogspot.com/2013/12/periodic-paralysis-and-metabolic.html"><br style="font-family: Arial; font-size: 16px;" /></a></p><p class="MsoNormal" style="background: rgb(240, 242, 245);"><br /></p><span style="font-family: Arial; font-size: 12pt; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US;"><br />Until later...</span>Susan Q.Knittle-Hunterhttp://www.blogger.com/profile/14423032446507636527noreply@blogger.com0tag:blogger.com,1999:blog-2152211800119076289.post-5116126051144882912020-11-12T08:56:00.017-08:002020-11-12T09:05:16.667-08:00Happy 7th Anniversary to Our Blog!!<p> <br /><br /><br /><b><span style="font-size: medium;"></span></b></p><div class="separator" style="clear: both; text-align: center;"><b><span style="font-size: medium;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjW3hYDF9yWFTKfW1N0NW1Gzi6kePJaBtfxdwyFOqWOXh00fOSHBE7UQO4cHea6-dsi0TDTSNbu3IlMQ0SOBYiQxzatKoOaB55oAEdBESULICI4Qz3HzNlvUeujCo7D2BSn3TMtOt-FPiQ/s960/PPN+Blog+Banner+New+3+2019.JPG" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="960" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjW3hYDF9yWFTKfW1N0NW1Gzi6kePJaBtfxdwyFOqWOXh00fOSHBE7UQO4cHea6-dsi0TDTSNbu3IlMQ0SOBYiQxzatKoOaB55oAEdBESULICI4Qz3HzNlvUeujCo7D2BSn3TMtOt-FPiQ/s320/PPN+Blog+Banner+New+3+2019.JPG" width="320" /></a></span></b></div><b><span style="font-size: medium;"><br /><div style="text-align: center;"><b><span style="font-size: medium;">Happy 7th Anniversary to <i>Livi</i></span></b><b><span style="font-size: medium;"><i>ng With Periodic Paralysis: The Blog</i>!!! </span></b></div></span></b><p></p><p><b><span style="font-size: medium;"><br /></span></b><span data-offset-key="4ede5-0-0" face=""Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif" style="background-color: white; color: #050505; white-space: pre-wrap;"><span data-text="true" style="font-family: inherit;"><span style="font-size: medium;"><b>It has been 7 years since we posted our first Blog Article!! Since that day we have had over 156,497 total page views!! We now have nearly 180 articles!!</b></span><b style="font-size: 15px;">
</b></span></span></p><div style="text-align: center;"><b style="font-size: 15px;"><b style="color: var(--blue-link); font-family: inherit; font-size: large;"><a href="https://livingwithperiodicparalysis.blogspot.com/">https://livingwithperiodicparalysis.blogspot.com/</a></b></b></div><p></p><div style="text-align: center;"><br /></div>Susan Q.Knittle-Hunterhttp://www.blogger.com/profile/14423032446507636527noreply@blogger.com0tag:blogger.com,1999:blog-2152211800119076289.post-33567688681824488572020-08-31T10:18:00.000-07:002020-08-31T10:18:38.113-07:00'What Is Periodic Paralysis? A Disease Like No Other' ~ Fourth Anniversary!<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQZymqqUKNNMFObXsLu1MOyqjGTpfHbjbX8ocsI_A1L7317pOXGIqtsnapU0WDtpXE31ZPJO_8BvsWIEc16UTF-dlnXpLr6svEUCsV-8o-C6I9VeZVdEPbv2cihueTnlNwGqmnjtZHLTrW/s2000/What_Is_Periodic_Par_Cover_for_Kindle.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2000" data-original-width="1333" height="410" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQZymqqUKNNMFObXsLu1MOyqjGTpfHbjbX8ocsI_A1L7317pOXGIqtsnapU0WDtpXE31ZPJO_8BvsWIEc16UTF-dlnXpLr6svEUCsV-8o-C6I9VeZVdEPbv2cihueTnlNwGqmnjtZHLTrW/w274-h410/What_Is_Periodic_Par_Cover_for_Kindle.jpg" width="274" /></a></div><br /> <span style="background-color: white; color: #050505; font-family: inherit; font-size: 15px; white-space: pre-wrap;">Hello All,</span><p></p><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;">This week we celebrate the fourth anniversary of publishing our fourth book, "What Is Periodic Paralysis?: A Disease Like No Other."</div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;">I am including some information about it; the Table of Contents and the Preface.</div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;">Table of Contents</div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;">About A.S.E.A. vi</div><div dir="auto" style="font-family: inherit;">Preface viii</div><div dir="auto" style="font-family: inherit;">Acknowledgments ix</div><div dir="auto" style="font-family: inherit;">Introduction 13</div><div dir="auto" style="font-family: inherit;">What Is Periodic Paralysis? 17</div><div dir="auto" style="font-family: inherit;">What Are The Symptoms Of Periodic Paralysis? 29</div><div dir="auto" style="font-family: inherit;">What Are The Triggers Of Periodic Paralysis? 43</div><div dir="auto" style="font-family: inherit;">Relieving The Symptoms Of Periodic Paralysis 53</div><div dir="auto" style="font-family: inherit;">Handling The Episodes Of Periodic Paralysis 65</div><div dir="auto" style="font-family: inherit;">Diagnosing Periodic Paralysis 77</div><div dir="auto" style="font-family: inherit;">Complications Of Periodic Paralysis 91</div><div dir="auto" style="font-family: inherit;">Prognosis For Periodic Paralysis 121</div><div dir="auto" style="font-family: inherit;">Conclusion 129</div><div dir="auto" style="font-family: inherit;">Resources 140</div><div dir="auto" style="font-family: inherit;">About the Authors 141</div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;">Preface</div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;">The Preface of a book gives the reader information about how the book came to be, where the idea originated. In the case of this book, my own family and the members of the ‘Periodic Paralysis Network Support, Education and Advocacy Group’ inspired, What Is Periodic Paralysis? A Disease Like No Other.</div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;">The members, now over 900 (update) worldwide, share daily their heart-breaking and frustrating experiences. They relate frightening symptoms, years of painful and costly testing, a lack of being believed and abuse by doctors, denial of diagnoses and denial of proper treatment. These courageous and very ill people are under-recognized; under-diagnosed, misdiagnosed, misunderstood and mistreated by the medical professionals with whom they must deal and depend upon for their care. But to add insult to injury, this same treatment is also received from family members and friends who also tend to disbelieve the existence of the rare medical condition, Periodic Paralysis.</div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;">This booklet has been designed and written to share with family members, friends, teachers, coworkers and others who should know about and may want to know, the truth about this cruel disease.</div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;">For these reasons this booklet answering the question: “What is Periodic Paralysis?” has been created and written, by the PPN. The information used to describe and explain this disorder is referenced and can be found at the Periodic Paralysis Network, Inc. Website, Blog Articles, Discussion Groups and Books, to include: Living With Periodic Paralysis: The Mystery Unraveled, The Periodic Paralysis Guide And Workbook: Be All You Can Be Naturally, and A Bill Of Rights For Periodic Paralysis Patients.</div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;">It can be purchased from our PPNI Website Bookstore:</div><div dir="auto" style="font-family: inherit;"><span style="font-family: inherit;"><a class="oajrlxb2 g5ia77u1 qu0x051f esr5mh6w e9989ue4 r7d6kgcz rq0escxv nhd2j8a9 nc684nl6 p7hjln8o kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x jb3vyjys rz4wbd8a qt6c0cv9 a8nywdso i1ao9s8h esuyzwwr f1sip0of lzcic4wl py34i1dx gpro0wi8" href="https://periodicparalysisnetwork.com/bookstore/?fbclid=IwAR0706w3arZ-opYY_qGDYzwnqM1NsIcNubHKrxcbCpORqmHEOniGrL-lcFI" rel="nofollow noopener" role="link" style="-webkit-tap-highlight-color: transparent; background-color: transparent; border-color: initial; border-style: initial; border-width: 0px; box-sizing: border-box; cursor: pointer; display: inline; font-family: inherit; list-style: none; margin: 0px; outline: none; padding: 0px; text-align: inherit; text-decoration-line: none; touch-action: manipulation;" tabindex="0" target="_blank">https://periodicparalysisnetwork.com/bookstore/</a></span></div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="background-color: white; color: #050505; font-family: "Segoe UI Historic", "Segoe UI", Helvetica, Arial, sans-serif; font-size: 15px; margin: 0.5em 0px 0px; overflow-wrap: break-word; white-space: pre-wrap;"><div dir="auto" style="font-family: inherit;">Or at Amazon:</div><div dir="auto" style="font-family: inherit;"><span style="font-family: inherit;"><a class="oajrlxb2 g5ia77u1 qu0x051f esr5mh6w e9989ue4 r7d6kgcz rq0escxv nhd2j8a9 nc684nl6 p7hjln8o kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x jb3vyjys rz4wbd8a qt6c0cv9 a8nywdso i1ao9s8h esuyzwwr f1sip0of lzcic4wl py34i1dx gpro0wi8" href="https://www.amazon.com/Susan-Q-Knittle-Hunter/e/B00HVEBSSQ/ref=dp_byline_cont_pop_book_1?fbclid=IwAR1OzaaVa2ZX4Yh68dsRPbow4cCH45DtOPTA0fKO788iNF355F1BxYwMgBs" rel="nofollow noopener" role="link" style="-webkit-tap-highlight-color: transparent; background-color: transparent; border-color: initial; border-style: initial; border-width: 0px; box-sizing: border-box; cursor: pointer; display: inline; font-family: inherit; list-style: none; margin: 0px; outline: none; padding: 0px; text-align: inherit; text-decoration-line: none; touch-action: manipulation;" tabindex="0" target="_blank">https://www.amazon.com/Susan-Q-Knittle-Hunter/e/B00HVEBSSQ/ref=dp_byline_cont_pop_book_1</a></span></div></div>Susan Q.Knittle-Hunterhttp://www.blogger.com/profile/14423032446507636527noreply@blogger.com0tag:blogger.com,1999:blog-2152211800119076289.post-60103737861255929792020-08-19T12:08:00.003-07:002021-04-10T14:44:01.756-07:00Those of us with Periodic Paralysis are each totally individual and unique!!<p style="text-align: center;"><b><span style="font-size: x-large;"><br /><br /></span></b><img border="0" data-original-height="723" data-original-width="961" height="308" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNFauTOxF-o_2BrAOMc44T_KWjlFxuRp0xYoO-b0-hePNSdXgoU4rrisIBN44loPwKCXMpKNQvlnG_O07OmZDUt5st908h3Hp7dPM6Yl7tsjkYTSNo-P3mDY8vMut3xnfMxjiBre7vpeRH/w410-h308/Unique.jpg" width="410" /><b><span style="font-size: x-large;"><br /></span></b><b><span style="font-size: x-large;"><br /></span></b></p><p style="text-align: center;"><b><span style="font-size: x-large;">Those of us with Periodic Paralysis <span style="background-color: white; color: #1d2129; font-family: inherit; white-space: pre-wrap;">are each totally individual and unique!!</span></span></b></p><div class="_2cuy _3dgx _2vxa" style="background-color: white; color: #1d2129; direction: ltr; font-family: helvetica, arial, sans-serif; font-size: 14px; margin: 0px; padding: 0px; white-space: pre-wrap;"><span class="_4yxo" style="font-family: inherit; font-weight: 600;"><br /><div style="text-align: center;"><span style="font-family: inherit;">No two of us are exactly alike. We each experience our PP differently. Our episodes and symptoms are individual and unique to each of us.</span></div></span></div><div class="_2cuy _3dgx _2vxa" style="background-color: white; color: #1d2129; direction: ltr; font-family: helvetica, arial, sans-serif; font-size: 14px; margin: 0px; padding: 6px 0px 0px; white-space: pre-wrap;"><br /><div style="text-align: justify;">Our episodes are based on three things: the form or forms of PP we have, the trigger or triggers causing them and any other co-existing conditions we may have.</div></div><div class="_2cuy _3dgx _2vxa" style="background-color: white; direction: ltr; margin: 0px; padding: 6px 0px 0px;"><div style="text-align: justify;"><span face="helvetica, arial, sans-serif" style="color: #1d2129; font-size: 14px; white-space: pre-wrap;"><br /></span></div><span face="helvetica, arial, sans-serif" style="color: #1d2129; font-size: 14px; white-space: pre-wrap;"><div style="text-align: justify;">So our episodes will happen as often as we introduce our triggers to ourselves.</div></span></div><div class="_2cuy _3dgx _2vxa" style="background-color: white; direction: ltr; margin: 0px; padding: 6px 0px 0px;"><div style="text-align: justify;"><span face="helvetica, arial, sans-serif" style="color: #1d2129; font-size: 14px; white-space: pre-wrap;"><br /></span></div><span face="helvetica, arial, sans-serif" style="color: #1d2129; font-size: 14px; white-space: pre-wrap;"><div style="text-align: justify;">They will last as long as that trigger somehow determines (some triggers may cause short episodes, some longer) and be as severe as that trigger determines, for instance, they may be as simple as a twitch of the eyelid for a few hours, a numbness or tingling of an arm or a full, total-body (from head (including the inability to see) to toes), extreme episode with heart, blood pressure, breathing and choking lasting many hours. (I have had these lasting 7 hours...most were about 4 hours several times a day.)</div></span></div><div class="_2cuy _3dgx _2vxa" style="background-color: white; direction: ltr; margin: 0px; padding: 6px 0px 0px;"><div style="text-align: justify;"><span face="helvetica, arial, sans-serif" style="color: #1d2129; font-size: 14px; white-space: pre-wrap;"><br /></span></div><span face="helvetica, arial, sans-serif" style="color: #1d2129; font-size: 14px; white-space: pre-wrap;"><div style="text-align: justify;">If we have coexisting conditions symptoms and episodes can be more severe, depending on how the trigger also affects the other condition and how the coexisting condition affects the PP.</div></span></div><div class="_2cuy _3dgx _2vxa" style="background-color: white; color: #1d2129; direction: ltr; font-family: helvetica, arial, sans-serif; font-size: 14px; margin: 0px; padding: 6px 0px 0px; text-align: justify; white-space: pre-wrap;"><br /></div><div class="_2cuy _3dgx _2vxa" style="background-color: white; color: #1d2129; direction: ltr; font-family: helvetica, arial, sans-serif; font-size: 14px; margin: 0px; padding: 6px 0px 0px; text-align: justify; white-space: pre-wrap;">It is usually quite easy to detect the triggers/causes. If you keep a journal or keep track by writing down everything you do, eat, drink and more, and then keep track of when your symptoms occur and what they are, you will see a pattern emerge and be able to figure it out. You can eliminate or modify the triggers to eliminate the episode/symptoms.</div><div class="_2cuy _3dgx _2vxa" style="background-color: white; direction: ltr; margin: 0px; padding: 6px 0px 0px;"><div style="text-align: justify;"><span face="helvetica, arial, sans-serif" style="color: #1d2129; font-size: 14px; white-space: pre-wrap;"><br /></span></div><span face="helvetica, arial, sans-serif" style="color: #1d2129; font-size: 14px; white-space: pre-wrap;"><div style="text-align: justify;">I went from 4 or 5 severe episodes a day to 1 or 2 a year, much less severe and lasting a much shorter time (except for at night) by charting everything, eliminating the trigger/s, changing my diet and by staying in total balance.</div></span></div><div class="_2cuy _3dgx _2vxa" style="background-color: white; direction: ltr; margin: 0px; padding: 6px 0px 0px;"><div style="text-align: justify;"><span face="helvetica, arial, sans-serif" style="color: #1d2129; font-size: 14px; white-space: pre-wrap;"><br /></span></div><span face="helvetica, arial, sans-serif" style="color: #1d2129; font-size: 14px; white-space: pre-wrap;"><div style="text-align: justify;">None of us will have the same triggers, the same types of episodes, the same number of episodes and the same length and degree of episodes. Each of us is very unique...this even applies to those in the same family. My family members with PP are totally different in how our episodes present themselves and our triggers are not the same. We each have different coexisting conditions as well.</div><div style="text-align: justify;"><br /></div><div style="text-align: justify;">
The following Blog Article has a group of articles and links to help each person understand how to create their own Individual Management Plan (IMP).</div><div style="text-align: justify;"><br /></div><div style="text-align: justify;">
<a href="https://livingwithperiodicparalysis.blogspot.com/2017/10/how-to-manage-our-periodic-paralysis.html" style="color: #1d2129;">https://livingwithperiodicparalysis.blogspot.com/2017/10/how-to-manage-our-periodic-paralysis.html</a></div></span></div><div class="_2cuy _3dgx _2vxa" style="background-color: white; color: #1d2129; direction: ltr; font-family: helvetica, arial, sans-serif; font-size: 14px; margin: 0px; padding: 6px 0px 0px; text-align: justify; white-space: pre-wrap;"><br /></div><div class="_2cuy _3dgx _2vxa" style="background-color: white; color: #1d2129; direction: ltr; font-family: helvetica, arial, sans-serif; font-size: 14px; margin: 0px; padding: 6px 0px 0px; text-align: justify; white-space: pre-wrap;"><br /></div><div class="_2cuy _3dgx _2vxa" style="background-color: white; color: #1d2129; direction: ltr; font-family: helvetica, arial, sans-serif; font-size: 14px; margin: 0px; padding: 6px 0px 0px; text-align: justify; white-space: pre-wrap;">Until later...</div>Susan Q.Knittle-Hunterhttp://www.blogger.com/profile/14423032446507636527noreply@blogger.com2tag:blogger.com,1999:blog-2152211800119076289.post-2073709887804641012020-08-17T08:09:00.001-07:002020-08-17T08:09:48.788-07:00Our New and Updated Periodic Paralysis Network Inc Website<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLs2Zz2XglQju0cYJlTMEpDnofGyhhlJyXAT7Si-1nrIhEABsTDl4mW9J_tjEvNQAqHdFMrDGaCEUwrD3Bt-w-ozmUONUtQlB0XmGwEg1PA66nWrJYDktCrZwynNJszeXic_TyyuOqlBYb/s921/PPNI+New+Website+2.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="706" data-original-width="921" height="393" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLs2Zz2XglQju0cYJlTMEpDnofGyhhlJyXAT7Si-1nrIhEABsTDl4mW9J_tjEvNQAqHdFMrDGaCEUwrD3Bt-w-ozmUONUtQlB0XmGwEg1PA66nWrJYDktCrZwynNJszeXic_TyyuOqlBYb/w513-h393/PPNI+New+Website+2.jpg" width="513" /></a></div> <p></p><p></p><div style="text-align: justify;"><span face="" style="background-color: white; color: #1d2129; font-family: helvetica, arial, sans-serif; font-size: 14px; font-weight: 600; white-space: pre-wrap;">We are previewing our new and updated Periodic Paralysis Network Inc Website today!! Please go in and have a look. We are now offering our books in Ebook format in our new book store, as requested. Our Google Blogger can now be accessed through the website as well. We have a new Announcement Page to keep everyone updated. More new features are in the planning stage. Check out the Menu Bar for information about the PPNI Company and Website. </span></div><div style="text-align: justify;"><a data-lynx-mode="asynclazy" data-lynx-uri="https://l.facebook.com/l.php?u=http%3A%2F%2Fwww.periodicparalysisnetwork.com%2F%3Ffbclid%3DIwAR1W0PJvLZySf1joQ2U681Lq8cediC7bvDSf8NHoX6PomUOn0Ngg8rpUsgs&h=AT1kuRxdSZfs9fvLfix_s_B_DQSOrmbv00YaxeI65lgi9QVsv7VW3jlx2kXATNwVG6N2wKLVSHCzyguTKe5rt4sQVvarSGizjDGzY7r2j3ENsA4ASIq6mUj6yVdy69bqqNN7j0JDLcwz_24faWN5M8J7k3628OnXzJYbWg" href="http://www.periodicparalysisnetwork.com/?fbclid=IwAR1W0PJvLZySf1joQ2U681Lq8cediC7bvDSf8NHoX6PomUOn0Ngg8rpUsgs" rel="noopener nofollow" style="background-color: white; color: #385898; cursor: pointer; font-family: helvetica, arial, sans-serif; font-size: 14px; text-align: left; text-decoration-line: none; white-space: pre-wrap;" target="_blank"><span class="_4yxp" style="font-family: inherit; font-style: italic;">www.periodicparalysisnetwork.com</span></a></div><p></p>Susan Q.Knittle-Hunterhttp://www.blogger.com/profile/14423032446507636527noreply@blogger.com0tag:blogger.com,1999:blog-2152211800119076289.post-80042132064572917502020-08-15T14:15:00.004-07:002020-08-15T15:12:43.225-07:00Providing HOPE to over 1,050 members!!!<p> </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_fFd0CAHy0581D2MflkqtBmsWk2PaB_a8xB8hUsPrtPunKrpgratT8GzwjtUMTRfhmQPSWAjcLuj1pcNJlHvdyhMsPiIrM7XWjDSodwAswXaaXGaqy2p9hopAeAhrVjTxmq-HAtY6ptQ-/s960/PPN+Banner+1%252C050.JPG" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="960" height="274" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_fFd0CAHy0581D2MflkqtBmsWk2PaB_a8xB8hUsPrtPunKrpgratT8GzwjtUMTRfhmQPSWAjcLuj1pcNJlHvdyhMsPiIrM7XWjDSodwAswXaaXGaqy2p9hopAeAhrVjTxmq-HAtY6ptQ-/w410-h274/PPN+Banner+1%252C050.JPG" width="410" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://www.facebook.com/groups/periodicparalysisnetworksupportgroup/"><b>Periodic Paralysis Network Support Group</b><br /></a><br /><br /></div><p></p>Susan Q.Knittle-Hunterhttp://www.blogger.com/profile/14423032446507636527noreply@blogger.com0tag:blogger.com,1999:blog-2152211800119076289.post-141212757216825102020-08-12T10:54:00.002-07:002023-09-11T11:40:44.522-07:00IEP (Individualized Education Plan) or 504 Plan for Periodic Paralysis <p><span style="background-color: white; color: #1d2129; font-family: Helvetica; font-size: 10.5pt; text-align: justify;"><br /></span></p><p><span style="background-color: white; color: #1d2129; font-family: Helvetica; font-size: 10.5pt; text-align: justify;"></span></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbtT4JcKTDgF0vTY9ablNMummgaDTx24r-CBAFRu26ub8CQPEIBqtro_A-J3ZJQa-8Tdgb5OYFILLIbx_E8yduLMMBRJFiTAhkyoP4vME6pGmwCncyaNQbc50Kxxo22befk3KI4S7E3ATC/s960/education-1545578_960_720.webp" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="573" data-original-width="960" height="306" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbtT4JcKTDgF0vTY9ablNMummgaDTx24r-CBAFRu26ub8CQPEIBqtro_A-J3ZJQa-8Tdgb5OYFILLIbx_E8yduLMMBRJFiTAhkyoP4vME6pGmwCncyaNQbc50Kxxo22befk3KI4S7E3ATC/w512-h306/education-1545578_960_720.webp" width="512" /></a></div><p><span style="background-color: white; color: #1d2129; font-family: Helvetica; font-size: 10.5pt; text-align: justify;"><br /></span></p>For all of the parents who are sending
their children with PP back to school, this may be helpful. It is written for
those in the USA and to help to outline and write either an IEP (Individual
Education Plan) or a 504 Plan (both legal and binding documents in the USA). I
am a retired Special Education Teacher. <p></p><p><span style="background-color: white; color: #1d2129; font-family: Helvetica; font-size: 10.5pt; text-align: justify;">(This may or may not be applicable at this
time in dealing with Covid-19.)</span></p>
<p style="background: white; margin-bottom: 4.5pt; margin-left: 0in; margin-right: 0in; margin-top: 4.5pt; margin: 4.5pt 0in; text-align: justify;"><span style="color: #1d2129; font-family: Helvetica; font-size: 10.5pt;">I wrote this for a parent awhile back...I
have meant to post it as a Blog Article, but have never quite finished it
before...I hope this can be helpful.<o:p></o:p></span></p>
<p style="background: white; margin-bottom: 4.5pt; margin-left: 0in; margin-right: 0in; margin-top: 4.5pt; margin: 4.5pt 0in; text-align: justify;"><b><span style="color: #1d2129; font-family: Helvetica; font-size: 10.5pt;"><!--[if !supportEmptyParas]--> <!--[endif]--><o:p></o:p></span></b></p>
<p style="background: white; margin-bottom: 4.5pt; margin-left: 0in; margin-right: 0in; margin-top: 4.5pt; margin: 4.5pt 0in; text-align: justify;"><b><span style="color: #1d2129; font-family: Helvetica; font-size: 10.5pt;">IEP (Individualized Education Plan) or 504
Plan for Periodic Paralysis at School<o:p></o:p></span></b></p>
<p style="background: white; margin-bottom: 4.5pt; margin-left: 0in; margin-right: 0in; margin-top: 4.5pt; margin: 4.5pt 0in; text-align: justify;"><span style="color: #1d2129; font-family: Helvetica; font-size: 10.5pt;"><!--[if !supportEmptyParas]--> <!--[endif]--><o:p></o:p></span></p>
<p style="background: white; margin-bottom: 4.5pt; margin-left: 0in; margin-right: 0in; margin-top: 4.5pt; margin: 4.5pt 0in; text-align: justify;"><span style="color: #1d2129; font-family: Helvetica; font-size: 10.5pt;">Each plan is individualized to your
child's needs, accommodations and restrictions. The biggest difference in them
is how it is funded and who will be in charge of the plan.<o:p></o:p></span></p>
<p style="background: white; margin-bottom: 4.5pt; margin-left: 0in; margin-right: 0in; margin-top: 4.5pt; margin: 4.5pt 0in; text-align: justify;"><span style="color: #1d2129; font-family: Helvetica; font-size: 10.5pt;">The best place to start is to have a copy
of the information about your child’s form of Periodic Paralysis and how it
affects him or her. No one will know what it is or be able to understand it
without some background information. <o:p></o:p></span></p>
<p style="background: white; margin-bottom: 4.5pt; margin-left: 0in; margin-right: 0in; margin-top: 4.5pt; margin: 4.5pt 0in; text-align: justify;"><span style="color: #1d2129; font-family: Helvetica; font-size: 10.5pt;">Next, you will need to come up with a list
of the needs, accommodations and restrictions, etc that are necessary for your
child. You can do this with your doctor or come up with them and then ask the
doctor to put them on his/her letterhead for you. The school will have a better
time believing and following through this way. This should include the issues
related to his heart, breathing, blood pressure, cognitive issues, muscle
weakness, and/or paralysis as the potassium shifts.<o:p></o:p></span></p>
<p style="background: white; margin-bottom: 4.5pt; margin-left: 0in; margin-right: 0in; margin-top: 4.5pt; margin: 4.5pt 0in; text-align: justify;"><span style="color: #1d2129; font-family: Helvetica; font-size: 10.5pt;">How to recognize an episode? What to do in
an emergency? Teachers and nurses should be trained to recognize signs of an
episode and know what to do.<o:p></o:p></span></p>
<p style="background: white; margin-bottom: 4.5pt; margin-left: 0in; margin-right: 0in; margin-top: 4.5pt; margin: 4.5pt 0in; text-align: justify;"><span style="color: #1d2129; font-family: Helvetica; font-size: 10.5pt;">Triggers and how/what to avoid? If any
type of exercise causes an episode, then he or she should not have PE, or can
he do some simple things like walking, but not running or swimming? <o:p></o:p></span></p>
<p style="background: white; margin-bottom: 4.5pt; margin-left: 0in; margin-right: 0in; margin-top: 4.5pt; margin: 4.5pt 0in; text-align: justify;"><span style="color: #1d2129; font-family: Helvetica; font-size: 10.5pt;">Food restrictions, or does he or she need
to eat and or drink something every few hours?<o:p></o:p></span></p>
<p style="background: white; margin-bottom: 4.5pt; margin-left: 0in; margin-right: 0in; margin-top: 4.5pt; margin: 4.5pt 0in; text-align: justify;"><span style="color: #1d2129; font-family: Helvetica; font-size: 10.5pt;">Does he or she need more time to get from
class to class? Does he or she need help to get from class to class? Should he
or she have a friend with him at all times in case he or she goes into an
episode? Elevator rather than walking up and down stairs? Can he or she walk from class
to class but not out to the football field?<o:p></o:p></span></p>
<p style="background: white; margin-bottom: 4.5pt; margin-left: 0in; margin-right: 0in; margin-top: 4.5pt; margin: 4.5pt 0in; text-align: justify;"><span style="color: #1d2129; font-family: Helvetica; font-size: 10.5pt;">Due to the time length of episodes or
abortive attacks, does he or she require more time to complete assignments? Or
does he or she need homeschooling/instruction from time to time? Do the
district days of absences allowed need to be changed? Are days added for him?<o:p></o:p></span></p>
<p style="background: white; margin-bottom: 4.5pt; margin-left: 0in; margin-right: 0in; margin-top: 4.5pt; margin: 4.5pt 0in; text-align: justify;"><span style="color: #1d2129; font-family: Helvetica; font-size: 10.5pt;">Does he or she need adaptations such as
using a computer rather than writing with a pencil or pen or doing his or her
work orally or verbally?<o:p></o:p></span></p>
<p style="background: white; margin-bottom: 4.5pt; margin-left: 0in; margin-right: 0in; margin-top: 4.5pt; margin: 4.5pt 0in; text-align: justify;"><span style="color: #1d2129; font-family: Helvetica; font-size: 10.5pt;">Can he or she carry his or her books from
class to class? Too many books at a time? Can he visit his or her locker more
often or leave books and supplies in the classroom with the teacher?<o:p></o:p></span></p>
<p style="background: white; margin-bottom: 4.5pt; margin-left: 0in; margin-right: 0in; margin-top: 4.5pt; margin: 4.5pt 0in; text-align: justify;"><span style="color: #1d2129; font-family: Helvetica; font-size: 10.5pt;">Does he or she need a special chair or
wheelchair at times in which he or she can recline due to weak trunk muscles?<o:p></o:p></span></p>
<p style="background: white; margin-bottom: 4.5pt; margin-left: 0in; margin-right: 0in; margin-top: 4.5pt; margin: 4.5pt 0in; text-align: justify;"><span style="color: #1d2129; font-family: Helvetica; font-size: 10.5pt;">Does speech/talking in the classroom need
to be limited to short periods of time due to weak mouth and throat muscles?<o:p></o:p></span></p>
<p style="background: white; margin-bottom: 4.5pt; margin-left: 0in; margin-right: 0in; margin-top: 4.5pt; margin: 4.5pt 0in; text-align: justify;"><span style="color: #1d2129; font-family: Helvetica; font-size: 10.5pt;">Eyes/eyelids may become too weak to read,
etc. Can lectures be recorded or can a friend share notes?<o:p></o:p></span></p>
<p style="background: white; margin-bottom: 4.5pt; margin-left: 0in; margin-right: 0in; margin-top: 4.5pt; margin: 4.5pt 0in; text-align: justify;"><span style="color: #1d2129; font-family: Helvetica; font-size: 10.5pt;">Another critical issue to consider is
whether the child's symptoms may require him or her to remain at home
permanently using homeschooling, attending school remotely or possibly a
combination of the two.<o:p></o:p></span></p>
<p style="background: white; margin-bottom: 4.5pt; margin-left: 0in; margin-right: 0in; margin-top: 4.5pt; margin: 4.5pt 0in; text-align: justify;"><span style="color: #1d2129; font-family: Helvetica; font-size: 10.5pt;"><!--[if !supportEmptyParas]--> <!--[endif]--><o:p></o:p></span></p>
<span style="color: #1d2129; font-family: Helvetica; font-size: 10.5pt; mso-ansi-language: EN-US; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US;">**Purchasing
a copy of our book, <i>What is Periodic Paralysis? A Disease Like No Other </i>and
completing your child’s individual, important information related to Periodic
Paralysis at the end of each chapter is an excellent way to share the data and
instruction for the teachers, nurses and administrators. This is why this book was
created, for sharing and teaching others about Periodic Paralysis.<br /><br />The following are example pages from the book:</span><div><span style="color: #1d2129; font-family: Helvetica; font-size: 10.5pt; mso-ansi-language: EN-US; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US;"><br /></span></div><div><span style="color: #1d2129; font-family: Helvetica; font-size: 10.5pt; mso-ansi-language: EN-US; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US;"><br /></span></div><div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTcRUz2eO0XP8ZiYpMOXKSXDwScv26dVvg0khuFXHivlbYHNKnAY4D5y9AYrFjqLxXTkPf8gWlDsoLxumb38dsWyDG0zI_BOecktMpf8bx6cyfhMbTm7l7GqGnghGYImLB4GtG-uJA2Prl/s427/WIPP+1.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="217" data-original-width="427" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTcRUz2eO0XP8ZiYpMOXKSXDwScv26dVvg0khuFXHivlbYHNKnAY4D5y9AYrFjqLxXTkPf8gWlDsoLxumb38dsWyDG0zI_BOecktMpf8bx6cyfhMbTm7l7GqGnghGYImLB4GtG-uJA2Prl/s0/WIPP+1.jpg" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaqF1HWl9mATPwxUu9ZqAodqlWICBV07dYZxm6n4SRT294u7J7eOP2jKUlVHpLJ2CzwvukN8qmLduh_kQVnn7XQJXh0SXvXVx2JGQX0uxCIsdjgM5DrFPPzICgd6Mzz381vWuEXNCn9ufh/s421/WIPP+2.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="200" data-original-width="421" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaqF1HWl9mATPwxUu9ZqAodqlWICBV07dYZxm6n4SRT294u7J7eOP2jKUlVHpLJ2CzwvukN8qmLduh_kQVnn7XQJXh0SXvXVx2JGQX0uxCIsdjgM5DrFPPzICgd6Mzz381vWuEXNCn9ufh/s0/WIPP+2.jpg" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_zLGSXmLpocbQlGwGLS7R5KLucNPEeJqyault1s-buGeOQSN0ia9Z1KWBAqw4eqM0lAVgG-5eDmtD8Tb2Nw-8s0b0a2gJuSbSPTwNJ1qmRBF1QbF0hsuIsEfWlH5LEtefZgRceI_aZg4u/s422/WIPP+3.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="171" data-original-width="422" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_zLGSXmLpocbQlGwGLS7R5KLucNPEeJqyault1s-buGeOQSN0ia9Z1KWBAqw4eqM0lAVgG-5eDmtD8Tb2Nw-8s0b0a2gJuSbSPTwNJ1qmRBF1QbF0hsuIsEfWlH5LEtefZgRceI_aZg4u/s0/WIPP+3.jpg" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /><i>What is Periodic Paralysis? </i>May be purchased at Amazon:<br /><a href="https://www.amazon.com/gp/product/1536851736/ref=dbs_a_def_rwt_hsch_vapi_tpbk_p1_i1">https://www.amazon.com/gp/product/1536851736/ref=dbs_a_def_rwt_hsch_vapi_tpbk_p1_i1</a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><span style="color: #1d2129; font-family: Helvetica; font-size: 10.5pt; mso-ansi-language: EN-US; mso-bidi-font-family: "Times New Roman"; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US;"><br /></span></div>Susan Q.Knittle-Hunterhttp://www.blogger.com/profile/14423032446507636527noreply@blogger.com0tag:blogger.com,1999:blog-2152211800119076289.post-64989898704344975212020-07-31T12:58:00.005-07:002020-08-15T10:27:10.922-07:00Providing Awareness of Periodic Paralysis through A.S.E.A.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghemKN2g647dKWF66S6do9MYRSWATASnYmQtzV0blUnvCGNnFYekJFAj_qICu2J_59lZ8loEFPSs9f1uFg_FVOxmcwUrEsIwTKfsOfTGH8UtVuFDzRhC61KBkv045iDl9SRpH3QRxSLl9j/s1600/Awareness.JPG" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="960" height="133" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghemKN2g647dKWF66S6do9MYRSWATASnYmQtzV0blUnvCGNnFYekJFAj_qICu2J_59lZ8loEFPSs9f1uFg_FVOxmcwUrEsIwTKfsOfTGH8UtVuFDzRhC61KBkv045iDl9SRpH3QRxSLl9j/w200-h133/Awareness.JPG" width="200" /></a></div>
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Awareness is a
sense of understanding, knowing, recognition or mindfulness of something. At
this time, among most people in the world, doctors, medical professionals and
government entities, the term Periodic Paralysis has no meaning. It is not
recognized, known about or understood by those in authority who should be aware
of it. This needs to be changed worldwide and we are here to do it.</div>
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Since realizing
I had a form of Periodic Paralysis (PP), after over fifty years of searching
for the cause of my unusual, debilitating and progressive symptoms, I knew
there was very little information available about this rare medical condition.
It was obvious that few doctors knew about or understood the condition either.
Through my research, I discovered it takes nearly a decade of graduate school
to become a doctor. During those years of training, unfortunately, Periodic
Paralysis is mentioned in one or two paragraphs and in those paragraphs it is
described as so rare that a doctor will never see a patient with it in his or
her lifetime or years of practice. This is a serious disservice to those of us
who have the condition. As I researched
and learned more, I also discovered most all of the information found on-line
was old, out-dated, misleading or wrong. Sadly, this is the information being used
by many doctors.</div>
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Too many
individuals are suffering needlessly and even dying due to this misinformation,
under-recognition, under-diagnoses and misdiagnoses. When someone suffering the
effects of the cruel condition of Periodic Paralysis mentions the term
‘Periodic Paralysis’ blank stares, and lack of understanding are the norm,
especially by medical professionals. Very few people on earth have heard of it
or know about it. This has to be corrected.</div>
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Periodic
Paralysis is a serious mineral metabolic disorder, which everyone should be
aware of and understand. However, at this time, among most people in the world,
doctors, medical professionals and government entities, the term Periodic
Paralysis has no meaning. It is not recognized, known about or understood by
those in authority who should be aware of it. Change is necessary worldwide. </div>
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When the terms
multiple sclerosis, muscular dystrophy, ALS (Lou Gehrig’s disease), cancer or
leukemia are heard someone automatically visualizes an individual whose health
is compromised, probably in some pain, maybe in a wheelchair and unable to go
about normal daily duties, unaided. The futures of these individuals are
uncertain. Most people are moved to sadness and concern for those individuals.
Family, friends, churches, and even entire neighborhoods and communities
readily offer help and support. This, however, is not the case for people with
the varying forms of PP, however, it should be.</div>
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It was our hope
that someday when the words “Periodic Paralysis” are heard everyone would
understand and instantly visualize the seriousness of this condition…an
individual becomes severely weak from muscle weakness or tightness or are
suddenly totally paralyzed, unable to walk or talk and in fear because his or
her heart is racing and beating irregularly, blood pressure is dangerously high
or low, breathing is difficult and may stop, oxygen may be very low, choking
may occur, and he or she may die during the episode from a heart arrhythmia
and/or respiratory or cardiac arrest. He or she may look asleep or unconscious,
they can hear everything going on, but cannot say a word. The individual is
vulnerable and at the mercy of others and ‘totally alone in the dark.’ Over
time, gradual, permanent muscle weakness sets in and the person becomes
disabled. The future of these individuals is as uncertain as in the other
severe medical conditions. </div>
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As it turns out,
after nearly a decade of providing, support, education and advocacy for people
with all types of Periodic Paralysis around the world, we know that PP is not
all that “rare,” but rather, as mentioned previously, it is under-recognized,
under-diagnosed and misdiagnosed. It takes an average of twenty years for an
individual to receive a diagnosis. (My own diagnosis took over 50 years!) Many
die before they ever receive a diagnosis or even after due to inappropriate
care. This is unconscionable and unnecessary. This would not be the case if all
medical professionals understood Periodic Paralysis and knew how to recognize
this condition.</div>
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More education
and training is needed for students in medical school and for all other medical
professionals including nurses, EMTs, paramedics, social workers, teachers, lab
technicians and more. Periodic Paralysis needs to be as commonly understood as other
medical conditions such as multiple sclerosis, muscular dystrophy,
fibromyalgia, heart disease, diabetes, and Lou Gehrig’s disease.</div>
<span style="font-size: 12pt;">We created the Periodic Paralysis Network hoping to
provide the correct and vital information for people with PP, their family
members and caregivers and all medical professionals. We hoped as well to bring
awareness to everyone in the world. We are here and doing this through our
A.S.E.A Program. We are bringing Awareness to everyone in the world through
Support, Education and Advocacy. </span><br />
<span style="font-size: 12pt;"><br /></span>
<span style="text-indent: 0.5in;"><b>Our features and services providing Awareness of Periodic
Paralysis include:</b></span></div>
<br />
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<b>Our Periodic Paralysis Network Inc Website:<o:p></o:p></b></div>
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<a href="https://periodicparalysisnetwork.com/">https://periodicparalysisnetwork.com/</a><b><o:p></o:p></b></div>
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After receiving
my diagnosis for Andersen-Tawil Syndrome on February 7, 2011, my therapist, Rosie,
who was instrumental in helping me to get diagnosed and supported me through a
few years of uncertainty, hospitalizations and hell, suggested that we write a
book about Periodic Paralysis and all that we experienced before getting the
diagnosis. She thought that the world should know about PP and what we went
through; perhaps we could help others in the same situation. We decided after
much discussion about our education, skills and teaching experience, to create
the Periodic Paralysis Network first to do just that and then later set out to
write our first book. We have now grown into a large forum with many features
and services, each created as the need arose.</div>
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<b>Our Periodic Paralysis Network Inc Books</b><br />
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<i>Living With
Periodic Paralysis: The Mystery Unraveled<o:p></o:p></i></div>
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<i><br />
The Periodic Paralysis Guide And Workbook:<o:p></o:p></i></div>
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<i>Be All You Can Be
Naturally<o:p></o:p></i></div>
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<i><br />
A Bill Of Rights For Periodic Paralysis Patients<o:p></o:p></i></div>
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<i>What is Periodic Paralysis?:
A Disease Like No Other<o:p></o:p></i></div>
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<i><br /></i></div>
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<a href="https://www.amazon.com/Susan-Q-Knittle-Hunter/e/B00HVEBSSQ/ref=dp_byline_cont_pop_book_1?fbclid=IwAR0LndOjJ1mejPgB3EvrUZV-9SH3qNX0qiVlsDSkR6QwgughDo4FFSqNSCs">https://www.amazon.com/Susan-Q-Knittle-Hunter/e/B00HVEBSSQ/ref=dp_byline_cont_pop_book_1?fbclid=IwAR0LndOjJ1mejPgB3EvrUZV-9SH3qNX0qiVlsDSkR6QwgughDo4FFSqNSCs</a></div>
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We
created and published our books, taking years to research and write, with the
hope that students in medical school, all medical professionals, including
nurses, EMTs, paramedics, social workers, teachers, lab technicians, other PP
organizations, and more would read the information to better understand,
diagnose in a timely manner, and treat patients with all forms of Periodic
Paralysis more appropriately and with compassion.</div>
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Of
course the information in the books is mainly for anyone who has this condition
to be able to fully understand everything about Periodic Paralysis from what it
is, to how to get diagnosed, to how to manage the symptoms. Every issue related
to Periodic Paralysis is covered in the books.</div>
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One
of them, <i>What Is Periodic Paralysis?: A Condition Like No Other</i>,
was written especially to bring awareness of the condition to others. It
was designed for those with Periodic Paralysis to be given to doctors,
teachers, neighbors, babysitters, family members and more to inform them about
the condition.</div>
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The sale of our
books (and donations) is how we fund our organization. Every penny from the
purchases goes right into PPNI to cover our fees, licenses and expenses.<br />
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</div>
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<b>Our Periodic Paralysis Network Inc Blog</b><br />
<a href="https://livingwithperiodicparalysis.blogspot.com/">https://livingwithperiodicparalysis.blogspot.com/</a></div>
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In the beginning
the members asked that our Periodic Paralysis Network Support Group be private
due to the medical nature of the issues that would be discussed. They also
asked that no professionals of any type; doctors, nurses, social workers, etc
be admitted to the group as observers. They desired the group to be a ‘safe’
place where they could discuss their feelings, thoughts, ideas and more without
the judgment of professionals. Due to this, we wanted a place where Family
members, friends, doctors, nurses, teachers, and more could go to learn more
about Periodic Paralysis. We created the public <i>‘Living With Periodic
Paralysis: The Blog’</i> in order to share our information and discoveries with
everyone around the world. It has a translator so anyone can read the content
and learn.</div>
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<b>Our Periodic Paralysis Network Inc Facebook Page<o:p></o:p></b></div>
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<a href="https://www.facebook.com/PeriodicParalysisNetwork/">https://www.facebook.com/PeriodicParalysisNetwork/</a><b><br />
<!--[if !supportLineBreakNewLine]--><br />
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The ‘<i>Periodic
Paralysis Network Inc Facebook Page</i>’ was also designed to bring about more
awareness of Periodic Paralysis. Anyone can join. Many articles and posts are
shared about Periodic Paralysis as well as other issues related to it such as
chronic illness, invisible diseases and co-existing conditions. Inspirational
posts are included as well. </div>
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<b>Our Periodic Paralysis Awareness Day Page<o:p></o:p></b></div>
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Periodic Awareness Day Feb 7</div>
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<a href="https://www.facebook.com/PPAwarenessDay/">https://www.facebook.com/PPAwarenessDay/</a><br />
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Several years
ago, one of our members inquired about an Awareness Day for Periodic Paralysis.
One did not exist, so we set out to create one. We decided to use the date of
February 7, the day I finally received my diagnosis after over 50 years. We
created the <i>‘Periodic Paralysis Awareness Day Page.’ </i>Each year for a
month before that date, we share posts designed to bring awareness of Period
Paralysis on that page. Anyone can join it and the posts are meant for sharing
by our members to bring awareness of it to their family and friends.</div>
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Susan Q.Knittle-Hunterhttp://www.blogger.com/profile/14423032446507636527noreply@blogger.com2tag:blogger.com,1999:blog-2152211800119076289.post-37690866028048677512020-05-28T19:29:00.002-07:002020-05-28T19:29:39.085-07:00Providing Hope to Over 1,000 Members!!<div class="separator" style="clear: both; text-align: center;">
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<br />Susan Q.Knittle-Hunterhttp://www.blogger.com/profile/14423032446507636527noreply@blogger.com0tag:blogger.com,1999:blog-2152211800119076289.post-16053950228123722802020-02-19T09:10:00.003-08:002020-05-28T19:35:58.069-07:00Self-image With Undiagnosed Illness? How To Rebuild Image When You Can't Do Anything?<br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><b><span style="font-family: "arial" , "helvetica" , sans-serif;">Self image with undiagnosed illness? </span></b></span></div>
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<b><span style="font-family: "arial" , "helvetica" , sans-serif;">How to rebuild
image when you can't do anything?</span></b></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Last week I asked the members of our Periodic Paralysis Network Support Group
to name a few ideas that they would like to have me write some new blog
articles about, related to Periodic Paralysis (PP). One member asked me to
write about ‘self-image with undiagnosed illness' and ‘how to rebuild
self-image when one cannot do anything?’ I needed to think about this for a
while, because I myself have struggled with these issues, especially as my own
condition continues to decline. I also continue to struggle, even now, with my
own self-image nearly a decade after receiving my diagnosis for Andersen-Tawil
Syndrome (ATS). The timing on this was more than coincidental, however, because
I just finished reading a book that was given to me as a gift that holds some
answers to these questions and I will discuss it in this article. I have done
some research on this as well and hope the ideas I have come up with may be
helpful to my fellow Periodic Paralysis sufferers and myself.</span></div>
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The Oxford Dictionary describes ‘self-image' as “<span style="color: #222222;">the
idea one has of one's abilities, appearance, and personality." The example
it uses for how to use the term is: </span><b><i>"Sickness is an affront
to one's self-image and dignity."</i></b><i> </i>Those words are very true
for anyone who is sick with any illness, medical disease or condition, but they
are especially poignant for those of us with Periodic Paralysis. PP is an
especially cruel and rare mineral metabolic disorder that is difficult to
diagnose and understand and most often mistaken for mental illness (It is the
“all in your head syndrome”). Diagnosing is not straightforward. It can take an
average of 20 years (my own took over 50 years) because diagnosing PP is
exclusionary; which means it is arrived at after all else is ruled out by
testing for other conditions. Testing will always come back negative. If
someone does not know they have PP and doctors do not recognize it, this is
especially difficult to deal with.<o:p></o:p></span></div>
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PP is not a neurological condition but we are sent to neurologists because the
symptoms look neurological. They give us drugs to treat our symptoms. The
drugs, in turn, cause new or worse symptoms. Then we receive diagnoses for
things we do not have and cycle of 'diagnosing insanity’ continues until they
harm or kill us or we are lucky enough to find a doctor who understands. Many
of us have had to diagnose our self and then set out to get a diagnosis. At
this point we look even more mentally ill to the arrogant doctors who do not
understand or care enough to try to figure it out with and for us.<o:p></o:p></span></div>
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Through all of this we get sicker, weaker, our muscle weakness progresses, we
develop exercise intolerance and much more...all with no diagnosis. Our family
members do not believe us they think we are faking. (If the doctors do not
believe us why should anyone else?) We lose friends, some of us lose our
marriages, employment or an education becomes more difficult and some of us
must give up our careers…all with no real answers and no diagnoses. Who would
not have a poor self-image of themselves while they are going through decades
of illness, not being believed and tremendous loss???<o:p></o:p></span></div>
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A large majority of us who then finally do get a diagnosis are classified as to
whether the diagnosis is ‘clinical,' which is based on the symptoms or
‘genetic’ based on DNA testing results. This is a new set of problems that
really takes us even lower. We are discriminated against in the PP community.
Just 9 years ago, I was looked down on for not having a diagnosis and then
actually scoffed at me when I finally got my clinical diagnosis because I had
‘only' a clinical diagnosis for ATS based on my symptoms. Those with genetic
diagnoses and the support group that was available at that time only allowed
those with a diagnosis to join their group, but believe me, they wanted it to
be a genetic diagnosis. I got no help and could get no answers for my serious
questions. (This is why PPN now exists. We are here for everyone and especially
to help with getting diagnoses and helping everyone naturally, not pushing the
drugs, which are harmful to many of us.)<o:p></o:p></span></div>
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Many, regardless of a diagnosis or not, are still shunned by family members who
do not understand, medical professionals who have never heard of Periodic
Paralysis, co-workers, teachers, friends, neighbors. We are mistreated by
doctors who do not understand and so much more. All that being said, it is not
difficult to understand that those of us with symptoms of Periodic Paralysis
whether diagnosed or not, have issues with our self-image or how we see
ourselves. I am one of those people!<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">While I was researching this subject I found a really
simple but informative article written in <i>Psychology Today </i>by Katie
Willard Virant MSW, JD, LCSW published on August 10, 2018. It is entitled <i>Self-compassion
in Chronic Illness: A Dose of kindness for improved health. </i>The author
discusses three important components that make up ‘self-compassion,' which can
be used to help us rebuild a positive self-view of ourselves. <o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">They are: self-kindness, common humanity and
mindfulness.<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><b>The three components of self-compassion:</b></span></div>
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Self-kindness </b></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">When we are chronically ill, we tend to be
negative and use self-blame and self-criticism often. We did not make ourselves
sick nor is it our fault that we cannot do things that others can or that
others think we should be able to do. We may even think of ourselves as
‘stupid’ or lazy at times. Instead we need to change the self-dialog and treat
ourselves with acceptance and understanding. It will not come easily, but with
practice we can begin to feel better about ourselves.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><b>Common Humanity</b></span></div>
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<span style="font-weight: normal;"><span style="font-family: "arial" , "helvetica" , sans-serif;">We need to remember that
we are not alone in our suffering. Others are going through the same things we
are experiencing. Others also have Periodic Paralysis. Our journeys are much
the same. Painful experiences are a part of everyone’s lives.<o:p></o:p></span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><b>Mindfulness<br />
</b>We need to take a balanced look at
our emotional negative states, rather than becoming caught up in them. However,
we should not ignore or deny the feelings, instead we need to notice and look
at them, but not get immersed in them. For instance if we feel sad or angry, we
can feel it and recognize it and then let it go.<b> </b>We should not feel
guilty for having the feelings.<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">You can read more details in the article below.<o:p></o:p></span></div>
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From Psychology Today<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Self-compassion in Chronic Illness<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><a href="https://www.psychologytoday.com/us/blog/chronically-me/201808/self-compassion-in-chronic-illness">https://www.psychologytoday.com/us/blog/chronically-me/201808/self-compassion-in-chronic-illness</a><o:p></o:p></span></div>
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</b>Seeking advice on this subject from
my daughter who is a therapist, she suggested a self-help workbook that may be
helpful. It is titled, <i>Get Out of Your Mind & Into Your Life </i>by
Steven C Hayes, PHD. The cover explains “You can learn step-by-step how
mindfulness and acceptance can help you: overcome depression, transform
emotional pain, free yourself from negative thinking and self-judgment, commit
to what you care about and live a life you value.” It teaches how to use the
new Acceptance and Commitment Therapy; how to repair our mind after it has
turned on us.<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">As I mentioned in the opening paragraph I received a
truly remarkable book for Christmas and just finished reading it last night as
I was contemplating writing this article. I want to mention it here because I
think it may be helpful in rebuilding ones self-image. It is <i>Man’s Search
For Meaning </i>written by Viktor E, Frankl, a Holocaust survivor and the
creator of Lgotherapy.<span style="mso-spacerun: yes;"> </span>It has helped me
tremendously in how I look at my life with chronic illness, which has caused me
great loss. It is one man’s story about how he found meaning in every moment of
his life despite losing everything including every member of his family and
suffering in unimaginable and heartbreaking ways. It was inspiring and filled
with ideas of how to change our way of thinking about, and looking at, our
life. One of his important quotes in the book is “suffering is not necessary to
find meaning, only that meaning is possible in spite of suffering.”<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Another thing we must have in order to re-build and
maintain our own self-image is to awaken each day with <b>HOPE</b>. That can be
very understandably difficult for us.</span></div>
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<span style="color: black;"><span style="font-family: "arial" , "helvetica" , sans-serif;">What is <b>hope</b>?
According to Longman Dictionary of Contemporary English <sup>1 </sup><b>hope</b> is
“a feeling of wanting something to happen or be true and believing that it is
possible or likely.” Another dictionary states <b>hope</b> is a
"feel[ing] that something desired may happen". <b>Hope</b> is
a sense or desire that things will turn out for the best. The word <b>hope</b> may
be used as a noun or a verb. <sup>2</sup><o:p></o:p></span></span></div>
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<span style="color: black;"><span style="font-family: "arial" , "helvetica" , sans-serif;">In terms of my
life with Periodic Paralysis, many doctors, including the specialists, have
told me that there is nothing they can do for me. I can take no medications,
have no surgeries and I am in a gradually declining physical state. I would be
dead now if it were not for my husband, Calvin’s research and fight for the
things that now keep me alive and were giving me a better quality of life. He
found that preparing and feeding me a pH balanced diet with needed supplements,
providing me with oxygen therapy, helping me to discover and avoid my triggers,
sheltering me from stress, keeping me hydrated, monitoring my vitals and
remaining optimistic brought me back from the brink of death and reduced my
paralytic episodes from four or five full body attacks a day lasting several hours at
a time to one or two less severe episodes a year!<o:p></o:p></span></span></div>
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<span style="color: black;"><span style="font-family: "arial" , "helvetica" , sans-serif;">He had <b>hope</b>.
He had a desire that things would turn out for the best. He was correct in what
he did and how he did it and was optimistic that I would get better. He
maintained <b>hope</b> that I would improve in all ways and the truth
is that I did. Since that time, because of his <b>hope</b> and
optimism, which I now share, we wrote and published, four books about Periodic
Paralysis and maintain our PPNI Forum and our Blog. We share all that we have
learned to help others with PP.<o:p></o:p></span></span></div>
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<span style="color: black;"><span style="font-family: "arial" , "helvetica" , sans-serif;">I post
something about <b>HOPE</b> each day in the Support Group as a reminder to each
of us. Please do not give up <b>HOPE</b>.<o:p></o:p></span></span></div>
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</span>The final ingredient I have chosen to
discuss, which I believe can help us to rebuild and maintain our self-image is
about having something to look forward to. No matter how large or small it may
be, we must look to the future. I have little to look forward to each day as I
sit in my recliner, but I find little things. For instance right now, as I look
out my windows I see our beautiful but bare forest. Although it is slightly
above freezing, the sun is shining. I am hopeful that spring will soon be here
with warmer temperatures and blossoms and leaves on the trees and bushes. It
will be warmer and I am looking forward to getting in my power wheelchair and
going for a “walk“ down our road. We have no family that lives near us so I am
also looking forward to some of my family members possibly visiting later this year. <o:p></o:p></span></div>
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I <b>hope</b> I have presented some ideas that may be helpful for each of us to
rebuild or repair our self-image and enjoy each day.<o:p></o:p></span></div>
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Until later…<o:p></o:p></span></div>
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References:<br />
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Oxford Dictionary<o:p></o:p></span></div>
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<span style="color: #222222;"><span style="font-family: "arial" , "helvetica" , sans-serif;">the idea one has of one's abilities,
appearance, and personality.<o:p></o:p></span></span></div>
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<i><span style="font-family: "arial" , "helvetica" , sans-serif;">"sickness
is an affront to one's self-image and dignity"<o:p></o:p></span></i></div>
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Wikipedia<br />
<span style="color: #222222;">Self-image is
the mental picture, generally of a kind that is quite resistant to change, that
depicts not only details that are potentially available to objective
investigation by others (height, weight, hair color, etc.), but also items that
have been learned by persons about themselves, either from personal experiences
or by <a href="https://en.wikipedia.org/wiki/Internalization#Psychology_and_sociology" title="Internalization"><span style="color: #0b0080; text-decoration: none;">internalizing</span></a> the judgments of others.<o:p></o:p></span></span></div>
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<span style="color: #222222;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Self-image may consist of four types:<o:p></o:p></span></span></div>
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<!--[if !supportLists]--><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="color: #222222;">1.<span style="font-size: 7pt; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><!--[endif]--><span style="color: #222222;">Self-image resulting from how an individual sees oneself.<o:p></o:p></span></span></div>
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<!--[if !supportLists]--><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="color: #222222;">2.<span style="font-size: 7pt; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><!--[endif]--><span style="color: #222222;">Self-image resulting from how others see the individual.<o:p></o:p></span></span></div>
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<!--[if !supportLists]--><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="color: #222222;">3.<span style="font-size: 7pt; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><!--[endif]--><span style="color: #222222;">Self-image resulting from how the individual perceives
others see them.<o:p></o:p></span></span></div>
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<!--[if !supportLists]--><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="color: #222222;">4.<span style="font-size: 7pt; font-stretch: normal; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span><!--[endif]--><span style="color: #222222;">Self-image resulting from how the individual perceives the
individual sees oneself.<o:p></o:p></span></span></div>
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<span style="color: #222222;"><span style="font-family: "arial" , "helvetica" , sans-serif;">These four types may or may not be an accurate representation of
the person. All, some, or none of them may be true.<o:p></o:p></span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><a href="https://en.wikipedia.org/wiki/Self-image">https://en.wikipedia.org/wiki/Self-image</a><br />
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What is Self-image and How Do We Improve It?<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><a href="https://positivepsychology.com/self-image/">https://positivepsychology.com/self-image/</a><br />
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From Psychology Today<o:p></o:p></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Self-compassion in Chronic Illness<o:p></o:p></span></div>
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<a href="https://www.psychologytoday.com/us/blog/chronically-me/201808/self-compassion-in-chronic-illness"><span style="font-family: "arial" , "helvetica" , sans-serif;">https://www.psychologytoday.com/us/blog/chronically-me/201808/self-compassion-in-chronic-illness</span></a><span style="font-family: "arial";"><o:p></o:p></span></div>
<br />Susan Q.Knittle-Hunterhttp://www.blogger.com/profile/14423032446507636527noreply@blogger.com0tag:blogger.com,1999:blog-2152211800119076289.post-88236026799297427462020-02-16T12:38:00.000-08:002020-02-16T13:03:30.591-08:00Finding or Holding Down a Job With Periodic Paralysis??<br />
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<b><br />Finding or Holding Down a Job With Periodic Paralysis??</b></div>
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I was asked to write a blog article about jobs suitable for those
of us with Periodic Paralysis (PP). As I contemplate this issue, I know that
there is more than one answer and many things to consider. </div>
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Periodic Paralysis is a mineral metabolic disorder with varying degrees of
symptoms depending upon the form of PP that one has and the stage of PP that
one is in at any given time and any other medical conditions that may be
coexisting with PP. Important to also consider is the degree with which one’s
symptoms are being controlled.<span style="mso-spacerun: yes;"> </span>Periodic
Paralysis is a progressive disease, so most people will get worse or at least
weaker over time and this must be factored in as well.</div>
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The symptoms of PP are not stable; they change over time depending on the
trigger or triggers we may be exposed to in any situation. The triggers can and
do change. For instance, sometimes a food we eat may send us into full-body
paralysis, but at other times it may not. There can be a delayed reaction to a
trigger, so we may be fine today after exercising, but when we wake up the
following morning we may not be able to move. We may have eaten a high
carbohydrate dinner the night before and it may cause symptoms the next
afternoon.</div>
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Periodic Paralysis is unpredictable and must be factored into any type of job
or career we may be planning on seeking or studying for in the future.</div>
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Our age must be considered as well. Some of us do not develop severe symptoms
until we are older, but some of us have symptoms beginning as children. This
being said, are we able to attend college or a trade school? Maybe we can do
that now, as any other normal people can, but will we be able to hold down a
job or a career that we are seeking when we finally compete our studies? Will a
trade we want to learn, like mechanics, be something we can do in five years?</div>
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Will you be able to find a company with management that will be able to work
with you to accommodate your needs such as, coming in to work late some days or
the need to leave early, or maybe resting in the middle of the day? Missing
several days in a row? Will they allow you to work from home?</div>
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There is so much to consider.</div>
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In my case, I had symptoms very early in life, but did not know I had Periodic
Paralysis until I was 60, much later in life, but I was deemed totally disabled
at the age of 50 for other reasons which we now know were the PP. I had four
children and raised them without much difficulty, though there was always a
medical issue or problem with keeping up, etc. My symptoms got worse with each
passing year. However, I did push my way through college (started at 34) and
working and raising my family until I graduated with two degrees, Special
Education and Psychology, a month after turning 40!<br />
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I was able to teach for nearly 10
years, but each year got harder and more difficult. I got weaker and more and
more symptoms developed. I was given drugs for the symptoms, which made me
worse. I finally had to retire half way through my 9<sup>th</sup> year of
teaching. I had to fight for disability, which I did not get for three more
years. They finally approved my date of disability as the last day I was able
to teach, three years earlier.</div>
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I continued to go downhill in all ways… I first needed a cane, then a
self-propelling wheelchair and then finally a power wheelchair. I was put on
oxygen and spent, and still spend, most all of my time in a recliner due to
permanent muscle weakness (PMW) and exercise intolerance.</div>
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However, all of that being said, I have been able to do many things right from
my recliner. I have the world at my fingertips. I created the Periodic
Paralysis Network Forum. I have written and published six books. In the early
years of PPN, I was spending most of my waking hours on-line in real time
working on the support group and writing. <br />
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Another story I can tell you is about one of my daughters. She started college
late like I did and has been sick like I was as she worked full time and went
to school. It took her 16 years. Some of her work was done on the computer from
home. By the time she finally graduated with two Masters Degrees (Psychology)
and a Bachelors Degree, she has become even more ill. She tried working
full-time jobs as a therapist for a few companies but had a great deal of
difficulty keeping up. She missed many days and finally gave up. She has,
however, found that she can work from home, as a therapist for a company that
does all of their therapy on-line. She can make her own hours; rest as much as
she needs, eat better, does not have to drive anywhere and much more. She is
thriving now and making nearly the same as her salaried jobs.</div>
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Why did I tell you these stories? I wanted to let you know that there are
things you can do for employment, despite having Periodic Paralysis. However,
there are many things to consider before you move ahead with your plans,
because there are many things you may not be able to do, at least in the way
others do or what you may want to do.</div>
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I wanted to be a teacher working with special needs children. I was able to do
it but for only a few years. As disappointing as that was for me I realize that
I am still a teacher and still working with individuals with special needs. I
am still able to use my psychology and writing skills. As small as the impact
may be, I am making a difference in other people’s lives and I feel
satisfaction in that.</div>
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So, considering all of the things discussed above; what do you want to do? What
are you good at? What special skills do you have? What are your limitations or
what might they be in the future? Will you need to go to college, trade school
or obtain special training? Will you be able to manage the training? Can you
create a plan to look for the job you think you can do or find the training you
need to do it? Is there help available? Can you do the college work or training
on-line?</div>
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More and more jobs are being done at home. My son-in-law works from home
everyday in IT. He must stay home to help my other daughter who has severe
medical issues from PP. My son works some days at the office and some days at
home in communications.<br />
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All is not lost when it comes to employment and working if we have Periodic
Paralysis. We must think outside of the box, however. Our desire and new
technology in today’s world are making it easier to make a living from home,
where we can arrange our own hours. Colleges offer degrees that can be earned
from home as well. Laws are also in place to assure accommodations for
individuals with disabilities.</div>
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You must decide what will work for you based on what you want to do and with
the understanding of your limitations and possible limitations in the future.</div>
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Until later…..</div>
<br />Susan Q.Knittle-Hunterhttp://www.blogger.com/profile/14423032446507636527noreply@blogger.com0tag:blogger.com,1999:blog-2152211800119076289.post-84274212979379811292020-02-11T10:58:00.001-08:002020-02-11T10:58:26.302-08:00Now over 975 Members!!<div class="separator" style="clear: both; text-align: center;">
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<br />Susan Q.Knittle-Hunterhttp://www.blogger.com/profile/14423032446507636527noreply@blogger.com0tag:blogger.com,1999:blog-2152211800119076289.post-59086542010227160352020-02-11T10:40:00.000-08:002020-02-11T13:54:29.105-08:00Family Dynamics and Periodic Paralysis: An overview<div class="separator" style="clear: both; text-align: center;">
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<b><br /><span style="font-size: large;">Family Dynamics and Periodic Paralysis: An overview</span><br /><br /><br /><o:p></o:p></b></div>
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I have a family with many members who do not believe that I have a rare, hereditary, mineral metabolic disorder called Periodic Paralysis. They believe I am faking and making it up. I am severely affected by the disease and it has reduced the quality of my life, however I am more affected by having doubting family members who should be there to provide help and support to and for me. There is a huge division in my family, between the believers and the nonbelievers. I am in contact with many people who also have Periodic Paralysis whose family is much like mine.<br />
<br />Periodic Paralysis is a cruel disease. It is one that is difficult to diagnose, though it does not need to be. Doctors, for the most part, who do not understand it, look at patients with it as hypochondriacs, malingerers or faking it. If the doctors treat us that way, is it any wonder our families may feel the same?</div>
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Some family members stay away or are very limited in their interaction with you, because they cannot face watching your decline. They may feel helpless. Some just do not know what to do or say. Some do not care or are in denial.</div>
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Others may not understand, for whatever reason. They may not have read about it. They may misunderstand. They may be stubborn about issues such as hereditary. They may not want to know. They may not care.</div>
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Many family members are living in fear that it may begin to manifest in themselves or their children. Others actually have the symptoms but are afraid to face them. They will have to sooner or later. I will be there for them or my website with all the information they may need.</div>
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I thought perhaps when I finally got my diagnosis that I had become vindicated and validated to my family. I thought they would believe me and thank me. Except for a few members who already believed me and supported me, I was wrong. The silence remains disheartening and deafening.</div>
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The way I handle it is to provide as much information as I can to them. I have the papers with my diagnosis and am happy to share them with those that are trying to get diagnosed. I have developed a website for them and others to refer to as they have questions. I have also written four books about it mainly for them. I try to maintain communication with them, however strained it may be. I am here for them and let them know. Beyond that, I can do no more.</div>
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The loss of our families seems to be another cruel reality of Periodic Paralysis, and as one of my brothers says, “It’s just that simple!!”<br />
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(This was taken directly from my book <b style="font-style: italic;">Living With Periodic Paralysis: The Mystery Unraveled)</b><br />
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Until later.......</div>
Susan Q.Knittle-Hunterhttp://www.blogger.com/profile/14423032446507636527noreply@blogger.com0tag:blogger.com,1999:blog-2152211800119076289.post-12531934833610359002020-02-07T10:23:00.001-08:002020-02-07T10:26:37.757-08:00Happy 9th Anniversary PPN Feb 2, 2020<div class="separator" style="clear: both; text-align: center;">
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<b><span style="font-size: x-large;">Happy 9th Anniversary </span></b><br />
<b><span style="font-size: x-large;">Periodic Paralysis Network!</span></b></div>
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<span style="font-size: medium;"><br /><b><span style="font-size: x-large;">How I got my diagnosis </span></b></span></div>
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<span style="font-size: x-large;"><b>and </b></span></div>
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<b><span style="font-size: x-large;">created the Periodic Paralysis Network</span></b></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I am 71 years old and was diagnosed with an extremely rare, hereditary, debilitating, genetic disorder called Periodic Paralysis on February 7, 2011 at the age of 62. The form I have is a variant of Andersen-Tawil Syndrome (ATS). I was misdiagnosed for over 50 years. How could such a thing happen in today’s world with all of the modern medicine and technology? The following is my story, information about this cruel disease and how and why I control the symptoms.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><br />I have had episodes of partial and total full-body paralysis for much of my life. Due to a series of misdiagnoses and mistreatment with improper and inappropriate medications and treatments, I have become totally and permanently disabled with weak muscles throughout my body including those involved with my vision, digestion, breathing and my heart. I must be on oxygen constantly and cannot exert myself in any way. I have had a heart loop monitor inserted in my chest to monitor the tachycardia and arrhythmia, which include life-threatening long QT interval heartbeats. I sit in a recliner for most of my day and can walk (with a walker) only from one room to another or stay on my feet only short periods of time to do simple tasks like brushing my teeth. I must use a motorized wheelchair if I leave home or need to go any distance. If I did not have the help of my husband, I would have to live in an assisted living program.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Through the past years of my physical decline, I have had to give up my career as a special education teacher, my hobbies to include hiking, walking, swimming, exercising, fishing, camping, traveling, shopping, cooking and baking. I had to sell, and move away from, a beautiful home in the mountains of Utah. I can no longer drive. I have lost many friends, because I could not keep up with them or entertain any longer. I have lost contact with family members who did not understand or did not want to watch my decline or who thought I was a hypochondriac. I have lost the connection I once had with my grandchildren because I can no longer keep up with them or continue a meaningful relationship with them. The relationship with my husband has changed from husband and wife to caregiver and patient. Most of the over 30 doctors I had seen in those 6 years have treated me poorly and as if I were mentally ill.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I have spent several years working diligently to get a diagnosis and treatment for the ailment that cruelly stole the quality of my life. The most difficult part of this, for me, is knowing that I may not have became this seriously ill if just one of the over 30 doctors I have seen in the last 6 years in Oregon and the many years before, would have taken me seriously.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">One Sunday morning after recovering from yet another full body paralytic episode, I searched once again on my computer for “periods of paralysis”. I was shocked and dismayed to read about a disease, which actually had all of the components many of my family members and I had been experiencing for so many years. Once I realized what I actually had, the struggle became even more difficult trying to convince my doctors. By this point, everything else had been ruled out, but no one wanted to diagnose me. I heard I was “too old” to have it. I was ignored. I was dismissed and told to go have a “good time” as long as I was in Portland, after driving 250 miles for the results of a muscle biopsy (The test did show myopathy (muscle disease), change in shape and size of muscle fiber but I was told it was normal). I was given lidocaine after telling my primary care physician (PCP) I could not have it during a mole biopsy. It caused an episode of paralysis but I was treated as if I were a naughty child behaving badly. I was left alone in the room in paralysis. I was in metabolic acidosis, twice in front of my PCP and sent home rather than to the hospital. My heart was in tachycardia and I could not breathe. After discovering that I was having long QT interval heartbeats on a Holter monitor (a marker for ATS), this was dismissed by my PCP, even after being told it meant I could go into cardiac arrest at any given moment. After two months, I had to request a referral to an electrocardiologist. The referral took two more weeks to get from my PCP and the insurance company.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">During this time, I continued to decline as I had more and more severe total paralytic episodes. I had tachycardia and palpitations of my heart and I was having difficulty breathing. Sometimes my breathing would actually stop for a few seconds at a time. It felt like an elephant sitting on my chest. It was very frightening. Soon the difficulty of taking breaths in and out began to happen when I was not in paralysis. I found it more and more difficult to breathe. Every time I stood up, ate a meal or exerted myself in anyway, the breathing got worse and my heart would speed up until it was beating 130 to 140 beats per minute, even while I was eating.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"> My husband became so concerned with the lack of caring being displayed by my PCP and our insurance company, that he walked into a medical supply company and told them what was happening and asked if they could help me to get oxygen because I could not breath. After speaking with him for a few minutes, the manager told my husband that she would give all of the information he had carried in with him, to one of the technicians and that they would see what they could do for us. She told my husband that they find it is best to get all the information together and then, “Hit them (doctors) between the eyes with the facts”.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">They hooked me up with a recording oximeter. It was discovered that my oxygen saturation levels were dropping dangerously low during my episodes of paralysis and it was apparent that they were low every time I exerted myself in any way. The technician took the information to my PCP and she had no choice but to sign a referral for me to get oxygen. At that point, we began to look for another PCP and decided to change insurance companies to avoid the need for referrals.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">A month or two before this point, I was in despair over trying to find a doctor who knew about Periodic Paralysis. Then on the evening news, I saw their weekly feature of offering direct calls to doctors with any medical question. I quickly picked up the phone. After a wait of only a few minutes, I was speaking with one of the physicians. I asked her if she had heard of PP or knew of any doctors who might know about it. As luck would have it, she herself had a patient with it. She gave me the name of the neurologist the patient sees.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I went to my PCP with this information and talked her into giving me yet another referral. The neurologist eventually diagnosed me with “probable” Periodic Paralysis. He wrote a letter telling my PCP that I needed to see an electrocardiologist right away. It was several months before I got the referral. He described my heart condition, by that point, as serious with no treatment, but insisted I needed to have a heart monitor implanted. He also set up a renal specialist to help diagnose what he believed was Andersen-Tawil Syndrome based on all the information being presented to him by my PCP, the neurologist and me. I did get the diagnosis while in the hospital for the implant after going into paralysis and being observed by the doctors. The paralytic episode was caused by a mistake. They gave me a saline drip and lidocaine during the procedure. My diagnosis was actually based on an accident.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Since my diagnosis nine years ago, my husband and I have created and now manage the Periodic Paralysis Network. We are an organization with an online community of nearly 1,000 people who are affected by Periodic Paralysis. The Periodic Paralysis Network provides a hands-on approach to understanding the disease, getting a proper diagnosis, managing the symptoms, and assisting caregivers and family members. Our focus is on educational resources and self-reliance. Our approach to treatment focuses on the self-monitoring of vitals and the management of symptoms through all natural methods. We continue to do research and provide the latest information to our members. Everyone is welcome. Members will receive encouragement, support, sympathy, empathy and validation. Members will also gain information and knowledge about all aspects of Periodic Paralysis. Members ask questions and share ideas. We are usually on in real time, answering questions and providing support as needed for our members.</span><br />
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<span style="background-color: white; font-family: "arial" , "helvetica" , sans-serif; font-size: 14.85px;">We have also written and published the books,</span><span style="background-color: white; font-family: "arial" , "helvetica" , sans-serif; font-size: 14.85px;"> </span><b style="font-family: arial, helvetica, sans-serif; font-size: 14.85px; text-align: start;">Living With Periodic Paralysis: The Mystery Unraveled, The Periodic Paralysis Guide and Workbook: Be All You Can Be Naturally,</b><b style="font-family: arial, helvetica, sans-serif; font-size: 14.85px; text-align: start;"> A Bill Of Rights For Periodic Paralysis Patients </b><span style="background-color: white; font-family: "arial" , "helvetica" , sans-serif; font-size: 14.85px;">and</span><b style="font-family: arial, helvetica, sans-serif; font-size: 14.85px; text-align: start;"> What Is Periodic Paralysis?: A Disease Like No Other. </b><span style="background-color: white; font-family: "arial" , "helvetica" , sans-serif; font-size: 14.85px;">If you wish to know more about Periodic Paralysis, you may visit the</span><span style="background-color: white; font-family: "arial" , "helvetica" , sans-serif; font-size: 14.85px;"> </span><b style="font-family: arial, helvetica, sans-serif; font-size: 14.85px; text-align: start;"><a href="http://www.periodicparalysisnetwork.com/" style="color: black; text-decoration-line: none;">Periodic Paralysis Network.</a> ( periodicparalysisnetwork.com )</b></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><b> </b></span><span style="font-family: "arial" , "helvetica" , sans-serif;">***** I have now been diagnosed genetically with Andersen-Tawil Syndrome </span><span style="font-family: "arial" , "helvetica" , sans-serif;">(ATS) KCNJ5 and Hyperkalemic Periodic Paralysis (HyperKPP)/Paramyotonia Congenita (PMC) SCN4A *********</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif; text-align: start;">Until Later...</span></div>
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Susan Q.Knittle-Hunterhttp://www.blogger.com/profile/14423032446507636527noreply@blogger.com0tag:blogger.com,1999:blog-2152211800119076289.post-41896327287159231222019-12-04T09:25:00.001-08:002019-12-04T09:26:59.775-08:00Congratulations!! 950 members now!!<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiItUhF_nnQZxvcGUKez9AE8_F9iyr2hH-XpLd9ueUaf3jfRbWyjXDHLvlaCl0RX9zJqumSUFW0kNL_3GOZaBgV6DiGAlGooxfXKMb88zhDX7ZGjuyK8XpJb2JaCcf3b8xELxmB5KurP0V3/s1600/PPN+950.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="960" height="425" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiItUhF_nnQZxvcGUKez9AE8_F9iyr2hH-XpLd9ueUaf3jfRbWyjXDHLvlaCl0RX9zJqumSUFW0kNL_3GOZaBgV6DiGAlGooxfXKMb88zhDX7ZGjuyK8XpJb2JaCcf3b8xELxmB5KurP0V3/s640/PPN+950.JPG" width="640" /></a></div>
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<span class="_4yxo" style="color: #1d2129;"><span style="font-family: inherit;"><span style="font-size: 18px; font-weight: 600;">The following are some of the services and features of our PPN Forum:
</span><span style="font-family: inherit; font-size: small;">PPN Support Group:
<a href="https://www.facebook.com/groups/periodicparalysisnetworksupportgroup/announcements/" style="font-weight: normal;">https://www.facebook.com/groups/periodicparalysisnetworksupportgroup/announcements/</a></span><span style="font-size: 18px; font-weight: 600;">
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<span class="_4yxo" style="color: #1d2129; font-family: inherit; font-weight: 600;">PPN Blog:</span> We have over 160 blog articles written about all aspects of Periodic Paralysis. The Blog was created to provide information to all of our members, as well as, family members, friends and medical professionals who want to know more about Periodic Paralysis.</div>
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<a data-lynx-mode="asynclazy" data-lynx-uri="https://l.facebook.com/l.php?u=https%3A%2F%2Flivingwithperiodicparalysis.blogspot.com%2F%3Ffbclid%3DIwAR0HxsH9Fyufk9TZ30OTK_td1Ey47xUy15GcL2hhxfmqtkfRwX4YT0heQbk&h=AT2dPlHZhPao6U55dWXMAzNlG1jZ1u8tc40XV_iEx5Eb3K0nI8LxdiBl9n-C3GxI966etnrl1NuPydQf0ceRdlI8bNp3OvvWvXN5a46gPES1N4RoUOczIdGXHtzY7vcNr8w7IzBCqwcp5qkJjmMfpAqB9chQWaBbDQs" href="https://livingwithperiodicparalysis.blogspot.com/?fbclid=IwAR0HxsH9Fyufk9TZ30OTK_td1Ey47xUy15GcL2hhxfmqtkfRwX4YT0heQbk" rel="noopener nofollow" style="color: #385898; cursor: pointer; font-family: inherit; text-decoration-line: none;" target="_blank">http://livingwithperiodicparalysis.blogspot.com/</a></div>
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<span class="_4yxo" style="font-family: inherit; font-weight: 600;">Our Website, other discussion groups/boards, books and activities available through PPN:</span></div>
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<span class="_4yxo" style="font-family: inherit; font-weight: 600;">PPN Website:</span> <a data-lynx-mode="asynclazy" href="https://l.facebook.com/l.php?u=http%3A%2F%2Fwww.periodicparalysisnetwork.com%2F%3Ffbclid%3DIwAR3XkNmfxds-j94ftQYVydMCopmdsP-bL_gNA0ArlkW5Cnkc30cFVkQHGEw&h=AT1tqIMmU-weD6li8LTM7w8JXVbWrkGwURp_kfg59ZRQ9WBC1VlTndE-FGuDOfvTgjkMsAVkY26usZ9vbvgkebC2mkJQM83q0bXr6qmZiDDtgrBRg1gtdJlDSuyitCYPhb_5_Scoe7B_JZIC4F5T1wbyOyyIRxg3OF4" rel="noopener nofollow" style="color: #385898; cursor: pointer; font-family: inherit; text-decoration-line: none;" target="_blank">www.periodicparalysisnetwork.com</a></div>
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<span class="_4yxo" style="font-family: inherit; font-weight: 600;">PPN Books:</span></div>
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<span class="_4yxo _4yxp" style="font-family: inherit; font-style: italic; font-weight: 600;">"Living With Periodic Paralysis: The Mystery Unraveled"</span></div>
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<span class="_4yxo _4yxp" style="font-family: inherit; font-style: italic; font-weight: 600;">"The Periodic Paralysis Guide And Workbook: Be The Best You Can Be Naturally"</span></div>
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<span class="_4yxo" style="font-family: inherit; font-weight: 600;">Video about this Guide and Workbook:</span> <a href="https://www.facebook.com/sqkhunter/videos/10153659957417014/" style="color: #385898; cursor: pointer; font-family: inherit; text-decoration-line: none;">https://www.facebook.com/sqkhunter/videos/10153659957417014/</a></div>
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<span class="_4yxo _4yxp" style="font-family: inherit; font-style: italic; font-weight: 600;">"A Bill Of Rights For Periodic Paralysis Patients"</span></div>
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<span class="_4yxo _4yxp" style="font-family: inherit; font-style: italic; font-weight: 600;">"What Is Periodic Paralysis?: A Disease Like No Other"</span></div>
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<span class="_4yxo" style="font-family: inherit; font-weight: 600;">Our books are found on Amazon.com:</span></div>
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<a data-lynx-mode="asynclazy" data-lynx-uri="https://l.facebook.com/l.php?u=https%3A%2F%2Fwww.amazon.com%2FSusan-Q-Knittle-Hunter%2Fe%2FB00HVEBSSQ%2Fref%3Ddp_byline_cont_pop_book_1%3Ffbclid%3DIwAR1AThRNyrpdyXXkEPop2TdfQM6EJlNswPPmYt1PEAcYrOWUdmDwv_4waeg&h=AT1oySJ_trAn2d0aBcCenZTWekJsQI0POu1eWYoLvcTXmc-nXuE7dlD8ljWUECmgSRXwdBJ_CbMjp-0JdPHSCIsrbbJzl2z4cd4WS7suniLCSHGM2U0J-ZWiEK8AQW22qGWpSxiOgL5k_XvoqLXIM8Su72ohhli_ews" href="https://www.amazon.com/Susan-Q-Knittle-Hunter/e/B00HVEBSSQ/ref=dp_byline_cont_pop_book_1?fbclid=IwAR1AThRNyrpdyXXkEPop2TdfQM6EJlNswPPmYt1PEAcYrOWUdmDwv_4waeg" rel="noopener nofollow" style="color: #385898; cursor: pointer; font-family: inherit; text-decoration-line: none;" target="_blank">https://www.amazon.com/Susan-Q-Knittle-Hunter/e/B00HVEBSSQ/ref=dp_byline_cont_pop_book_1</a></div>
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and our PPN website:</div>
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<span class="_4yxo" style="font-family: inherit; font-weight: 600;">Email:</span> periodicparalysisnetwork@gmail.com</div>
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<span class="_4yxo" style="font-family: inherit; font-weight: 600;">Video about Periodic Paralysis: </span><a data-lynx-mode="asynclazy" href="https://l.facebook.com/l.php?u=https%3A%2F%2Fwww.youtube.com%2Fwatch%3Fv%3DYSRVOkdFRQc%26fbclid%3DIwAR3AwyWV4DPDdHD7BCQNQuiQ3VngZvNFWHsKN8HjNpHuo2T77sCF4Dv_Pf0&h=AT0s_x4VA7OuUkDqUlAyndaGT_sPC_AS_cfrTVH5kAmY0WK4bx1AXZt5PpPElLG8QU-cSPbYDIC_v4HBK8vyRMLF0cnqXKvsqtx62XZ94qsQEssrjipdNUrkQOLXD06RQbsKuoL6yVjcscsnzzSgYwNVBpkZv-VG_qA" rel="noopener nofollow" style="color: #385898; cursor: pointer; font-family: inherit; text-decoration-line: none;" target="_blank">https://www.youtube.com/watch?v=YSRVOkdFRQc</a></div>
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<span class="_4yxo" style="font-family: inherit; font-weight: 600;">Periodic Paralysis World Awareness Day Page:</span> This page was created to bring awareness to the world about Periodic Paralysis. We have declared and observe 'Periodic Paralysis World Awareness Day' February 7th each year! </div>
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<a href="https://www.facebook.com/PPAwarenessDay/" style="color: #385898; cursor: pointer; font-family: inherit; text-decoration-line: none;">https://www.facebook.com/PPAwarenessDay/</a></div>
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<span class="_4yxo" style="font-family: inherit; font-weight: 600;">Please check out our PPN Members World Map:</span> Let us know if you want to be added to our map! </div>
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<span class="_4yxo" style="font-family: inherit; font-weight: 600;">Thank you all for your support</span></div>
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<span class="_4yxo" style="font-family: inherit; font-weight: 600;">Calvin Hunter and Susan Q. Knittle-Hunter</span></div>
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<span class="_4yxo" style="font-family: inherit; font-weight: 600;">Co-Founders, Co-Creators, Co-Managers</span></div>
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<span class="_4yxo" style="font-family: inherit; font-weight: 600;">Periodic Paralysis Network, Inc.</span></div>
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<span class="_4yxo" style="font-family: inherit; font-weight: 600;">Sequim, Washington U.S.A.</span></div>
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<span class="_4yxo" style="font-family: inherit; font-weight: 600;">All rights reserved.</span></div>
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<span class="_4yxo" style="color: #1d2129; font-family: inherit; font-weight: 600;">Copyright © 2013-2019 Periodic Paralysis Network</span></div>
Susan Q.Knittle-Hunterhttp://www.blogger.com/profile/14423032446507636527noreply@blogger.com0tag:blogger.com,1999:blog-2152211800119076289.post-35641031758868096722019-11-12T10:34:00.000-08:002019-11-12T10:34:00.256-08:00Happy 6th Anniversary to Our PPN Blog!!<div style="text-align: center;">
<span style="font-size: large;"><b>Happy 6th Anniversary to our PPN Blog!!</b><br /><span style="background-color: white; color: #1d2129; font-family: Helvetica, Arial, sans-serif; text-align: left; white-space: pre-wrap;">Six years ago today we created our PPN blog called 'Living with Periodic Paralysis: The Blog' and posted our first Blog Article. We now have posted over 160 Blog Articles related to Periodic Paralysis!</span><br style="background-color: white; color: #1d2129; font-family: Helvetica, Arial, sans-serif; text-align: left; white-space: pre-wrap;" /></span><span style="background-color: white; color: #1d2129; font-family: Helvetica, Arial, sans-serif; text-align: left; white-space: pre-wrap;"><span style="font-size: large;">Below is a list of the articles and their links.</span><span style="font-size: 14px;">
</span></span><br /><br /><span style="background-color: white; color: #1d2129; font-family: Georgia, serif; font-size: 36px; white-space: pre-wrap;">List and Links of PPN Blog Articles</span></div>
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<span class="_4yxo" style="font-family: inherit; font-weight: 600;">(This begins with the most recent articles and scrolls down to older articles)</span></div>
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An Overview Of Fighting For And Receiving A Diagnosis For Periodic Paralysis</h3>
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<a data-lynx-mode="asynclazy" href="https://l.facebook.com/l.php?u=https%3A%2F%2Flivingwithperiodicparalysis.blogspot.com%2F2019%2F06%2Fan-overview-of-fighting-for-and.html%3Ffbclid%3DIwAR0OkwlxigGBf-BPc14jYi5njTdSI4siFpVIxrqCJBPsugU9lYCA_3s_PYk&h=AT2L9SZWiQH-KjYz7_-gWmAbG6fkko4rlk9uc4uduZBLFHtZAroUvTntRRkIRD0T-_xnUV3fhYFwHznS5nYN3GWj3stRtgIam6jNfUJRFHCvdO1wAGy1xwa7tmIl_kDGLQWPNDjHkGQPGUUq2co" rel="noopener nofollow" style="color: #385898; cursor: pointer; font-family: inherit; text-decoration-line: none;" target="_blank">https://livingwithperiodicparalysis.blogspot.com/2019/06/an-overview-of-fighting-for-and.html</a></h3>
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Not Everyone With Periodic Paralysis Needs To Be Taking Potassium Supplementation</h3>
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<a data-lynx-mode="async" data-lynx-uri="https://l.facebook.com/l.php?u=https%3A%2F%2Flivingwithperiodicparalysis.blogspot.com%2F2019%2F05%2Fnot-everyone-with-periodic-paralysis.html%3Ffbclid%3DIwAR2QTCBUMjbYfwtbBsEyFYPfN3ebPGtQ9fYcm3ztAc1DkMVaQqIM0EtuLmQ&h=AT3azGi_YeDL5buakfrzmWQwnSBm2Xn8vizQsJHBF3Ao9aGZ1qVpH2-HWFr60ZlAMlsl4SzIWl41ECDC5hNEC1XV86CZ6vQRiXHfqggEZKr1V52AmEs3s82t4WLYs6mA3teamV5vWq0stvdPMQ8N6nWfMXmJjpzb" href="https://livingwithperiodicparalysis.blogspot.com/2019/05/not-everyone-with-periodic-paralysis.html?fbclid=IwAR2QTCBUMjbYfwtbBsEyFYPfN3ebPGtQ9fYcm3ztAc1DkMVaQqIM0EtuLmQ" rel="noopener nofollow" style="color: #385898; cursor: pointer; font-family: inherit; text-decoration-line: none;" target="_blank">https://livingwithperiodicparalysis.blogspot.com/2019/05/not-everyone-with-periodic-paralysis.html</a></h3>
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I Repeat: No Drugs, People With PP Should Not Even Take Over-The-Counter Drugs</h3>
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What Is Periodic Paralysis? (2) (For Those Who Are Interested And For New Members)</h3>
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Periodic Paralysis IS Life Threatening</h3>
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<a data-lynx-mode="asynclazy" href="https://l.facebook.com/l.php?u=https%3A%2F%2Flivingwithperiodicparalysis.blogspot.com%2F2017%2F12%2Fperiodic-paralysis-is-life-threatening.html%3Ffbclid%3DIwAR106Jnb8SSMhY-QP4JeIxB1V7YzfD4Kqw1Fbiki16YTJnbdUL3183hsNHw&h=AT0dkmbOF69J99XicgCRgYDnckY3-WXhDFNIod44OTUNX-y1VwwD5PQEqdLyAdlMM9tfPmdWWpbXo776U-4w8HcUqEssstz8ajsr_hnudO-3JA9sUJgU6EPJcheS-WxiwNLSLM4FydG_Qa-3JBI" rel="noopener nofollow" style="color: #385898; cursor: pointer; font-family: inherit; text-decoration-line: none;" target="_blank">https://livingwithperiodicparalysis.blogspot.com/2017/12/periodic-paralysis-is-life-threatening.html</a></h3>
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How Many People Really Have Andersen-Tawil Syndrome?? More than 100!! </h3>
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How To Manage Our Periodic Paralysis Symptoms Naturally: Total Balance And Proper Diet</h3>
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Periodic Paralysis: Secondary Causes???<span class="_4yxo" style="font-family: inherit; font-weight: 600;"><br /></span><a data-lynx-mode="asynclazy" href="https://l.facebook.com/l.php?u=https%3A%2F%2Flivingwithperiodicparalysis.blogspot.com%2F2017%2F10%2Fperiodic-paralysis-secondary-causes.html%3Ffbclid%3DIwAR3w8oXL-sOPKzMIrYErrmj03bqyNiqJ4O-VFkFUMGy6ddBm0QSdhfrNLhg&h=AT2mHo4uLKgg0JBRwpJnKNtpzTAWZkTWqTBLlIfmWoDbbkL21f8N_oyTk1laibBL7j4fWWNIX29M_Z1w-HvaX30-6oCRKNITwYc7ANO32LajcXaJYEsBEwczZxcB27FqwPm7e4wQSzJbFth_EhM" rel="noopener nofollow" style="color: #385898; cursor: pointer; font-family: inherit; text-decoration-line: none;" target="_blank">http://livingwithperiodicparalysis.blogspot.com/2017/10/periodic-paralysis-secondary-causes.html</a></h3>
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Balance and Periodic Paralysis<br /><br /><a data-lynx-mode="asynclazy" href="https://l.facebook.com/l.php?u=https%3A%2F%2Flivingwithperiodicparalysis.blogspot.com%2F2017%2F10%2Fbalance-and-periodic-paralysis.html%3Ffbclid%3DIwAR1XEyWq__nuefpOYfrq90mEvkzV_no9cnaxOmGw7dKHAENMUtW-IIDSY4g&h=AT1Y1B2YM-7DyQASW3BfnKHQvGo15v7qQnwdKqWrGJZgbAV-yLVezFq-tIo9eX3INILNB_HwHsJIlC2gBHIdx5slh0zundUvHAXPTywhU_njXc05j7TdYu1iV8NEV7FiIIXrcpQVYcqHbq7eee8" rel="noopener nofollow" style="color: #385898; cursor: pointer; font-family: inherit; text-decoration-line: none;" target="_blank">http://livingwithperiodicparalysis.blogspot.com/2017/10/balance-and-periodic-paralysis.html</a><br /> </h3>
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Warning About Free Genetic Testing For Periodic Paralysis</h3>
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<br />Hope And Living With Periodic Paralysis, A Chronic Illness</h3>
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Now providing HOPE, SUPPORT, EDUCATION and ADVOCACY to over 700 members worldwide!!!</h3>
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RARE Champion of Hope Award</h3>
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Providing HOPE, SUPPORT, EDUCATION and ADVOCACY to over 650 members!!</h3>
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Rare Disease Day February 28, 2017</h3>
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Best Way to Share Awareness of Periodic Paralysis With Others</h3>
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Periodic Paralysis World Awareness Day 2017</h3>
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PPN Sixth Anniversary of Providing HOPE!!!!</h3>
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Providing HOPE to over 625 Members Now!!!</h3>
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Bringing Hope To Over 600 Members Now!!</h3>
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Over 575 Members!! </h3>
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Congratulations Periodic Paralysis Network!!! Over 50,000 views!!!!! </h3>
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550 Members!!! </h3>
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Over 525 Members!! </h3>
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<a data-lynx-mode="asynclazy" href="https://l.facebook.com/l.php?u=https%3A%2F%2Fwww.blogger.com%2Fblogger.g%3FblogID%3D2152211800119076289%26fbclid%3DIwAR3CkkteNXituzW9lTPXXhkX6U-m6RXd1RRf9HytqMh5S5hbjpMMr3m4GQ0%23editor%2Ftarget%3Dpost%3BpostID%3D703250946331019780%3BonPublishedMenu%3Doverview%3BonClosedMenu%3Doverview%3BpostNum%3D5%3Bsrc%3Dpostname&h=AT3PE7bwWvd5vnfLcQ7zQ-_RUDJd3OBcY1ajP1D8lUatcQcVjog9sIvVMfgC3Q1BE_BbcjIZCDw1XdePptrokwFyEDQEEYh7hNZAN_K_ZxqlZINg-LK6ACyTx8ZnWB-eQZ8vxBUf2YS5bPnbbJg" rel="noopener nofollow" style="color: #385898; cursor: pointer; font-family: inherit; text-decoration-line: none;" target="_blank">This is good news and bad news!!! We now have over 500 members!! </a></h3>
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Rare Disease Day Photo </h3>
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What is Periodic Paralysis?? For "Rare Disease Day" </h3>
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Happy 5th Anniversary PPN and Periodic Paralysis Awareness Day!! </h3>
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Periodic Paralysis Awareness Campaign!! </h3>
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475 Members!!! <br /> <a data-lynx-mode="asynclazy" href="https://l.facebook.com/l.php?u=https%3A%2F%2Flivingwithperiodicparalysis.blogspot.com%2F2016%2F01%2F475-members.html%3Ffbclid%3DIwAR3YrtX9Mtid0AI9zH4AXZG0Sc_9YM_tiha0Fal12IZfllmVMPcAg98YHNg&h=AT31uW5G4wFDhDTIV4BIz9cBBYsY4B7MPW5HdC1gllogK2arNWijQGQbcBX96zDqfsoDgu-tqVd2Hrln_x2dePuCv0KcBVDN64MfQWiZBvGQgAig8e4qaH4C67b9mk494N9-75-OdJ6Up-4NUEg" rel="noopener nofollow" style="color: #385898; cursor: pointer; font-family: inherit; text-decoration-line: none;" target="_blank">http://livingwithperiodicparalysis.blogspot.com/2016/01/475-members.html</a></h3>
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Average Number of Paralytic Attacks Per Year? </h3>
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Normokalemic Periodic Paralysis Update </h3>
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Periodic Paralysis World Awareness Day February 7, 2016 </h3>
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Periodic Paralysis And Co-existing Medical Conditions </h3>
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450 Members!!!! </h3>
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Happy Second Anniversary For Our PPN Blog!! </h3>
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Permanent Muscle Weakness (Revised) </h3>
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Invisible Illness Week!! Periodic Paralysis Awareness!! </h3>
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Our Latest Book: "A Bill Of Rights For Periodic Paralysis Patients" the first in our A.S.E.A.Series </h3>
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"New" Drug For Periodic Paralysis $163.80 For One 50mg Tablet!! (Revision) </h3>
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Over 425 Members Now!!! </h3>
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The Truth About The “New” Drug For Periodic Paralysis: It Is Not New </h3>
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A New Drug For Periodic Paralysis? Helpful Or More Of The Same? </h3>
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Bill of Rights for Periodic Paralysis Patients </h3>
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Scandinavian Periodic Paralysis Support Group </h3>
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Identify And Eliminate The Triggers Of Periodic Paralysis: Part Two </h3>
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Identify And Eliminate The Triggers Of Periodic Paralysis: Part One</h3>
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Trying To Balance My Life-Periodic Paralysis! Guest Blog Article from Julie Nielsen Cabitto</h3>
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Periodic Paralysis and Depression</h3>
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Over 400 Members!!!!!</h3>
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Doctors Not Being Held Accountable: The Periodic Paralysis Diagnosis By Guest Blogger Maureen McCutcheon</h3>
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375 Members!!!</h3>
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A Poor 'Product' That is Being Called 'Medical Care': By Maureen McCutcheon</h3>
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How To Get A Periodic Paralysis Diagnosis: “Hit Them Between The Eyes With The Facts”</h3>
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Periodic Paralysis and "Post Traumatic Medical Stress Disorder" (PTMSD)</h3>
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Phishing Scam Using Our Book...Please Beware.....</h3>
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Periodic Paralysis and the EMG (CMAP)</h3>
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350 Members!!</h3>
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Happy Periodic Paralysis Awareness Day and Happy Fourth Anniversary for PPNI!!!!</h3>
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Compilation of Articles Written About Drugs and Periodic Paralysis</h3>
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325 Members!!</h3>
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The Survey Results: Part One</h3>
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The Connection Between Mitochondria and Autoimmune Disease in Periodic Paralysis</h3>
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Genetic Mutation Overview</h3>
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Our New Book!!! The Periodic Paralysis Guide And Workbook</h3>
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"Living with Periodic Paralysis: The Blog" Happy First Anniversary!!</h3>
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Prognosis</h3>
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Bravelets Cause!!</h3>
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300 Members!!!</h3>
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Periodic Paralysis Awareness GoFundMe</h3>
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"This is Not an Acceptable Way to Make a Diagnosis" Guest Blogger</h3>
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Conversion Disorder Again?? Really??</h3>
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Why haven't they done genetic testing?</h3>
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The Incorporation of Periodic Paralysis Network, Inc (PPNI)</h3>
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GeneticTesting Should Be For Any Mutation Close To The Relevant Gene</h3>
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"Why Do You Need A Diagnosis?"</h3>
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Someone who understands (Guest Writer Maureen)</h3>
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Pain and Periodic Paralysis</h3>
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275 Members!!</h3>
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Our Members Around the World!!</h3>
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All patients should be treated with dignity! Guest Blogger: Maria Pinzon</h3>
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250 Members!!!!</h3>
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Exercise Intolerance</h3>
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Types of Potassium</h3>
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Open Letter To Doctors by Guest Writer, Carolanne</h3>
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Beware Of "Off-Label" Drugs</h3>
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"This Book Lead To My Genetic Diagnosis Of Anderson-Tawil Syndrome II": Book Review by Guest Blogger Tammy</h3>
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Changing Lives Naturally</h3>
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Paramyotonia Congenita: Another Form Of Periodic Paralysis</h3>
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New Discoveries</h3>
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200 Members!!</h3>
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A Reply to a ‘Conversion Disorder’ Diagnosis by Guest Blogger Maureen</h3>
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The Challenges of Periodic Paralysis by Guest Writer</h3>
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Plagiarism</h3>
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Periodic Paralysis vs Cancer</h3>
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Standard Healthy Eating Is Not Best For Individuals With PP</h3>
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The Periodic Paralysis Network</h3>
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Periodic Paralysis Network Diagnosis Project Part Two</h3>
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Periodic Paralysis Network Diagnosis Project</h3>
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Our Diagnostic Rights</h3>
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The Five Stages of Loss in Chronic Illness</h3>
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Clinical Diagnosis vs Genetic Diagnosis</h3>
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Rare Disease Day!!!</h3>
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Rhabdomyolysis</h3>
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Over 150 Members Now!!!</h3>
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Metabolic Acidosis and pH Balance</h3>
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Periodic Paralysis and Anesthesia</h3>
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Some Forms of Periodic Paralysis are Worsened by Diamox</h3>
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No Tourniquet Please!!!</h3>
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Happy Anniversary to US!!!</h3>
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The Truth About Diagnosing and Treating Periodic Paralysis</h3>
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What is Normokalemic Periodic Paralysis?</h3>
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My Story: How I Got My Diagnosis Of Periodic Paralysis</h3>
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What is Periodic Paralysis?</h3>
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A Message To Our Non-English Speaking Members</h3>
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Dysautonomia and Periodic Paralysis</h3>
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Isolated Diastolic Hypotension and High Pulse Pressure</h3>
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What is an Ion Channelopathy?</h3>
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Permanent Muscle Weakness in Periodic Paralysis...Continued</h3>
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Permanent Muscle Weakness in Periodic Paralysis</h3>
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What is Hypokalemic Periodic Paralysis?</h3>
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The Effects Of Periodic Paralysis Cannot Be Minimized For Most Of Us</h3>
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Periodic Paralysis and New Years Resolutions January 1, 2014</h3>
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Happy New Year!!!! December 31, 2013</h3>
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Monitoring Vital Signs For Individuals With Periodic Paralysis</h3>
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Why People With Some Forms Of Periodic Paralysis Should Not Use Intravenous Therapy (IVs).</h3>
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Why We Should NOT TAKE DRUGS: Idiosyncratic and Paradoxical Reactions To Drugs</h3>
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Finding a Doctor Who Cares</h3>
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Periodic Paralysis and Metabolic Acidosis</h3>
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What is Hyperkalemic Periodic Paralysis?</h3>
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Hope For Individuals With Periodic Paralysis </h3>
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Conversion Disorder vs Periodic Paralysis</h3>
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What is Andersen-Tawil Syndrome?</h3>
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What is Sotos Syndrome? </h3>
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How Many People in the World Have Periodic Paralysis?</h3>
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Avoiding the Pitfalls of the Emergency Room</h3>
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Periodic Paralysis and the ER…The Narrative</h3>
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When to Call For an Ambulance</h3>
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Triggers</h3>
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Pharmaceuticals Are Not the Answer For Some Rare Diseases</h3>
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Periodic Paralysis and Balance</h3>
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Periodic Paralysis Diet</h3>
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Periodic Paralysis and Iatrogenic Illness?</h3>
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Walking the Tightrope Using The Plan</h3>
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My Power Wheelchair</h3>
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The How and Why of our Book?? 'Living With Periodic Paralysis: The Mystery Unraveled'</h3>
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Emergency Instruction Chart</h3>
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Episodes of Paralysis Continued</h3>
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Episodes of Paralysis</h3>
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Diagnosis Continued</h3>
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The Diagnosis</h3>
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Potassium and Potassium Meters</h3>
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What is Periodic Paralysis??</h3>
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Welcome to the world of Periodic Paralysis!</h3>
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Susan Q.Knittle-Hunterhttp://www.blogger.com/profile/14423032446507636527noreply@blogger.com0tag:blogger.com,1999:blog-2152211800119076289.post-15101376272254852632019-09-19T10:01:00.004-07:002019-09-19T10:01:59.748-07:00'A Bill Of Rights For Periodic Paralysis Patients' 4th Anniversary!<div class="_2cuy _3dgx _2vxa" style="background-color: white; color: #1d2129; direction: ltr; font-family: Helvetica, Arial, sans-serif; font-size: 14px; margin: 0px; padding: 0px; white-space: pre-wrap;">
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Hello All,<br />This week is the 4th anniversary of the release of our book "A Bill Of Rights For Periodic Paralysis Patients." This is an important book to add to your collection if you do not already have it. Most of us are under recognized, under diagnosed, misdiagnosed, misunderstood and mistreated by the medical professionals with whom we must deal and depend upon for our care. This book helps to empower you in these dealings by allowing you to know your rights in order to get<span class="text_exposed_show" style="display: inline; font-family: inherit;"> correctly diagnosed and to stay safe in receiving the appropriate care. These rights include general rights; diagnostic rights; the right to proper treatment in the laboratory, by doctors and in the ER; the right to research and awareness and issues related to insurance rights. These have been and are being violated in many cases.<br /><br />Many of our members carry this book with them to all of their medical appointments!!<br /><br />Link to purchase book:<br /><a data-lynx-mode="async" href="https://l.facebook.com/l.php?u=https%3A%2F%2Fwww.amazon.com%2FSusan-Q-Knittle-Hunter%2Fe%2FB00HVEBSSQ%2Fref%3Ddp_byline_cont_pop_book_1%3Ffbclid%3DIwAR2mDbXXgiZNxEW4ygInpzWvivEd_ijGNLMyO_ZYAUQD623Qhdo_OgR_MDE&h=AT1vyyOy9ciLJDUm2EP8l-WR0Eq216u0X5xVahM-Tbst4pvtskvqugXIp-x1LcQz6L1EVrVF9r3F4hqdHpKCd1IK_DAc8Z-DtVPtJpUira3w52Gmxqc-o29bd6xeYPNWeN_6UE-QKiKXiuM3bUT-151yJvX2PIXzeoTYJhpP9ZMe6WPG" rel="noopener nofollow" style="color: #385898; cursor: pointer; font-family: inherit; text-decoration-line: none;" target="_blank">https://www.amazon.com/Susan-Q-Knittle-Hunter/e/B00HVEBSSQ/ref=dp_byline_cont_pop_book_1</a><br /><br />Below is more information about the book including the Contents, Preface and Introduction.<br /><br />"A Bill Of Rights For Periodic Paralysis Patients"</span></div>
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From</div>
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The Periodic Paralysis Network A.S.E.A. Series</div>
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Awareness ~ Support ~ Education ~ Advocacy</div>
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Volume One</div>
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<br />Susan Q. Knittle-Hunter</div>
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&</div>
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Calvin Hunter</div>
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Table of Contents</div>
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About A.S.E.A. vi</div>
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Preface viii</div>
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Acknowledgements ix</div>
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Introduction x</div>
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What is a Bill of Rights? 13</div>
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The General Rights 29</div>
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The Diagnosis of Periodic Paralysis 41</div>
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Treatment in the Laboratory 55</div>
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Treatment by Doctors 63</div>
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Treatment in the ER and Hospital 75</div>
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Research and Awareness 99</div>
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Insurance 105</div>
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Conclusion 109</div>
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Periodic Paralysis Forum 110</div>
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About the Authors 111</div>
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<br />Preface</div>
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The Preface of a book gives the reader information about how the book came to be, where to idea originated. In the case of this booklet, the members of the ‘Periodic Paralysis Network Support, Education and Advocacy Group’ inspired A Bill of Rights For Periodic Paralysis Patients. The members, now over 425 (over 900 now) worldwide, share daily their heart-breaking and frustrating experiences. They relate frightening symptoms, years of painful and costly testing, a lack of being believed, abuse by doctors, denial of diagnoses and denial of proper treatment. These courageous and very ill people are under recognized, under diagnosed, misdiagnosed, misunderstood and mistreated by the medical professionals with whom they must deal and depend upon for their care. Their general rights; diagnostic rights; the right to proper treatment in the laboratory, by doctors and in the ER; the right to research and awareness and issues related to insurance rights have been and are being violated in many cases. This needs to stop.</div>
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For these reasons a bill of rights for individuals with Periodic Paralysis has been created, by the PPN. The information used to outline, describe and explain these concepts and rights are referenced and can be found at the Periodic Paralysis Network, Inc. Website, Blog Articles, Discussion Groups and Books.</div>
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<br />Introduction</div>
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As discussed in the Preface and for the reasons listed, there was and is a great need for a bill of rights for all individuals who have a form of the metabolic disorder known as Periodic Paralysis. The Periodic Paralysis Network, inspired by the members of the ‘Periodic Paralysis Network Support, Education and Advocacy Group’ has now created A Bill of Rights For Periodic Paralysis Patients. This booklet, the first in the PPN A.S.E.A. Series, begins with an explanation of what a ‘bill of rights’ is and why they are written or created.</div>
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Next, ‘A Bill of Rights For Periodic Paralysis Patients’ is outlined in seven sections, covering general rights, diagnosis, treatment in labs, treatment by doctors and treatment in the emergency room and the areas of research, awareness and insurance. In those, each concept is described and explained based on the true and actual history, experiences and needs of individuals with Periodic Paralysis.</div>
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Hopefully, this information will bring about awareness of these issues and educate everyone who has the occasion to read this booklet as well as the medical professionals with whom individuals with Periodic Paralysis must depend upon to insure correct and proper care. By pointing out the wrongs, it is greatly desired that these wrongs can be made right and corrected.</div>
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More information and referencing can be found at the Periodic Paralysis Network Inc Website, Blog Articles, discussion groups and books; Living With Periodic Paralysis: The Mystery Unraveled, The Periodic Paralysis Guide And Workbook: Be The Best You Can Be Naturally and What is Periodic Paralysis?: A Disease Like No Other.</div>
</div>
Susan Q.Knittle-Hunterhttp://www.blogger.com/profile/14423032446507636527noreply@blogger.com0tag:blogger.com,1999:blog-2152211800119076289.post-54860439679950995742019-09-07T09:18:00.004-07:002019-09-07T09:26:27.848-07:00Now Providing HOPE to Over 900 Members!!<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEioqAQy4XRkHAASx3qomDKH7m40cGqaRVS0brOqFsoJxF7kiNLc1NQiVqtNmEvTeQj8vnkOtXirDkOMcJPG5WIaYOWT8N4WtT3gFOS5hmjde0mLFQHr1Sd9WKXw3kRO6OhOYUnwcxF3-Cyk/s1600/PPN+Support+Banner+900.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="960" height="425" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEioqAQy4XRkHAASx3qomDKH7m40cGqaRVS0brOqFsoJxF7kiNLc1NQiVqtNmEvTeQj8vnkOtXirDkOMcJPG5WIaYOWT8N4WtT3gFOS5hmjde0mLFQHr1Sd9WKXw3kRO6OhOYUnwcxF3-Cyk/s640/PPN+Support+Banner+900.jpg" width="640" /></a></div>
<div style="text-align: center;">
<span style="font-size: large;"><br />If you have Periodic Paralysis or believe you may have it, please join us on our Periodic Paralysis Network Support Group. Family members and caregivers are also welcome!!<br /><br />(Please answer all of the questions on the request or you may not be added to the group.)<br /><br /><a href="https://www.facebook.com/groups/periodicparalysisnetworksupportgroup/">https://www.facebook.com/groups/periodicparalysisnetworksupportgroup/</a></span></div>
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<span style="font-size: large;"><br /></span></div>
Susan Q.Knittle-Hunterhttp://www.blogger.com/profile/14423032446507636527noreply@blogger.com0tag:blogger.com,1999:blog-2152211800119076289.post-39717694865774883352019-06-26T15:04:00.000-07:002019-06-27T10:41:02.649-07:00An Overview Of Fighting For And Receiving A Diagnosis For Periodic Paralysis<div class="MsoBodyText2" style="text-align: center;">
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<b><span style="font-size: large;">An Overview Of Fighting For And Receiving A Diagnosis <o:p></o:p></span></b></div>
<div class="MsoBodyText2" style="text-align: center;">
<b><span style="font-size: large;">For <o:p></o:p></span></b></div>
<div class="MsoBodyText2" style="text-align: center;">
<b><span style="font-size: large;">Periodic Paralysis</span><o:p></o:p></b></div>
<div class="MsoBodyText3">
<br />
<br />
Although I have written more blog articles about ‘diagnosing’ Periodic
Paralysis (PP) than any other subject related to this medical condition, I have
decided to write one more blog article about it. I want to tie together
information from several of my other articles and add some newer information,
especially for new members who are attempting to get a diagnosis. I will start
with why we need a diagnosis.</div>
<div class="MsoBodyText3">
<br /></div>
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<b>Why
Do We Need a Diagnosis?<o:p></o:p></b></div>
<div align="center" class="MsoNormal" style="background: white; text-align: center;">
<br />
<b> “To stop the insanity and abuse the doctors
create by mistreating the condition.”</b></div>
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<br /></div>
<div class="MsoNormal" style="background: white; text-align: justify;">
<span class="uficommentbody">People
with Periodic Paralysis need a diagnosis. We need it for safety reasons in the
doctor’s office, the dentist’s office, an ambulance ride, the ER, the hospital,
for surgeries and in any emergency. Most of us cannot take any drugs or
medications due to idiosyncratic, paradoxical and iatrogenic effects (I have
written more blogs written about this) nor can we have IV’s because sodium and
glucose can shift our potassium even lower or higher and causes other
life-threatening symptoms nor can we tolerate anesthesia due to possible
malignant hyperthermia and/or more life-threatening arrhythmia, paralysis,
possible cessation of breathing and death. We need a diagnosis so we can be
safe and free from harm in any and all situations.</span><o:p></o:p></div>
<div class="MsoNormal" style="background: white; text-align: justify;">
<br />
<span class="uficommentbody">The medical professionals in our lives need to know
that we have Periodic Paralysis and how to treat us or not treat us, as the
case may be. They need to know that when we are in paralysis and struggling
with arrhythmia, fluctuating blood pressure and heart rate, chocking, breathing
issues and pain, that although we cannot open our eyes or speak, we can hear
them. They need to know that we are not faking. We are not making it up. Why
would we??? Does anyone really think we want to be totally helpless and
struggling for our life????<o:p></o:p></span></div>
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<br />
<span class="uficommentbody">We also need a diagnosis to stop the constant,
expensive and insane cycle of testing and retesting for every condition under
the sun for an average of twenty years out of our life. (Some of our members
did not get a diagnosis until they were in their eighth decade. I myself was
diagnosed at the age of 62.) Because genetic testing is costly, narrow, biased
and can only diagnose about half or less of all patients, diagnosing must be
done clinically, based on symptoms, once “everything else is ruled out.”
REALLY?? How many medical conditions exist in which an individual
intermittently has episodes of paralysis??</span><o:p></o:p></div>
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<br />
<span class="uficommentbody">During the cycle of insanity for a diagnosis, drugs
of every type are prescribed which are unnecessary and harmful causing more
damage and possible death. New symptoms may develop and then more testing is
done and new drugs prescribed. The insanity continues. Then comes the diagnosis
of “conversion disorder” or “somatic symptoms.” Psychotropic drugs are
prescribed at this point. More damage is done and possible death may occur.</span><o:p></o:p></div>
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<br />
<span class="uficommentbody">Without a diagnosis and proper treatment, the
individual naturally becomes more ill because organs in the body are being
damaged from the potassium shifting, exercise intolerance and gradual permanent
muscle weakness sets in, heart problems get more severe, breathing muscles
become affected, osteoporosis, kidney stones develop. Metabolic acidosis can
kill us. Adaptive equipment like power wheelchairs and oxygen may be necessary.
Without a diagnosis the patients will be unable to receive these much needed
aides. Without a diagnosis, disability or social security is impossible to
receive.</span><o:p></o:p></div>
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<br />
<span class="uficommentbody">The child, teenager and young adult with Periodic
Paralysis will need a diagnosis for appropriate treatment. He or she will need
accommodations in school. Teachers and school nurses need to know how to deal
with the symptoms and paralysis and understand what is happening and why. There
may be a great deal of school missed. Sports and other activities need to be
avoided. A special diet must be followed. Wheelchairs or other adaptive
equipment may be needed. Without a diagnosis none of this will happen.</span><o:p></o:p></div>
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<br />
<span class="uficommentbody">For the adult trying to support a family by holding
down a job or a career and living with Periodic Paralysis without a diagnosis
and proper treatment may lose their job. The years and years of medical
testing, misdiagnosis, wrong medications, inappropriate treatment and more can
result in financial ruin. This can lead to homes being lost, divorce may ensue,
families will fall apart, friends back away, depression sets in and possible
suicide may occur. A clear diagnosis and treatment may help others like
employers, family members and friends to understand and be willing to help.
Receiving Disability may be possible.</span><o:p></o:p></div>
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<br />
<span class="uficommentbody">One of the most important results of a diagnosis for
the individual with Periodic Paralysis and his or her family is validation.
Validation that the illness does truly exist and that he or she is finally
believed. They are vindicated. Vindicated of making it up, faking it or being a
hypochondriac. They do not have “conversion disorder.” They have been telling
the truth.</span><o:p></o:p></div>
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<br /></div>
<div class="MsoNormal" style="background: white; text-align: justify;">
<span class="uficommentbody">And
so, “Why do we need a diagnosis?” We need a diagnosis because we want a chance at
the quality of life everyone else is experiencing. We need a diagnosis because
we want to be treated with dignity and respect. We need a diagnosis because we
want to be free of or ease our paralysis, arrhythmia, heart issues, breathing
issues and more with the possibility of proper treatment or medication. We need
a diagnosis because we would like to use our family's hard earned money to take
care of our needs rather than paying for unnecessary testing and harmful drugs.
We need a diagnosis so we can obtain adaptive equipment to make our lives and
that of or loved ones easier. We need a diagnosis so we can be safe in
emergency situations. We need a diagnosis because we want to live!!!</span><br />
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<b><i>However,
there are many issues regarding how to obtain a diagnosis!<o:p></o:p></i></b></div>
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<br /></div>
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<b><span style="font-size: 14.0pt; mso-bidi-font-size: 12.0pt;">Understanding the Problems
With Diagnosing Periodic Paralysis<o:p></o:p></span></b></div>
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<br />
The question of how to get a diagnosis comes up nearly everyday in our PPN
Support Group, especially as each new member joins us. In order to answer this
question, much must be explained about the condition in order to understand how
one can get diagnosed.<br />
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PP is a very
rare, little understood, under diagnosed, often misdiagnosed, inherited medical
condition that is diagnosed using the process of elimination or exclusion; once
all else is ruled out, unless there is very clear indication of high or low
potassium shifts associated with periods of weakness or paralysis and/or if a
genetic mutation is discovered. (This is not usually the case.) </div>
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If anyone's
symptoms are atypical, different or not ‘textbook’ which is a great majority of
us, (including issues with no potassium shifting when tested, experiencing pain
or other odd symptoms or other conditions co-existing with our episodes of
muscle weakness and/or paralysis) then the ‘specialists’ or ill-informed
doctors using old, archaic information existing on-line do not recognize it or
understand that it can be atypical (different) or exist with other conditions.
They may believe that potassium must shift out of ‘normal’ ranges in order to
be PP. They do not understand that some of us with PP have a different ‘normal’
level for our potassium than other patients or about other forms of PP such as Normokalemic
Periodic Paralysis or Andersen-Tawil Syndrome (ATS). When in medical school,
doctors are given one paragraph in their medical training about PP. They are
taught that PP is too rare to ever be seen in a patient during their lifetime
as a doctor.</div>
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<br /></div>
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One must find a
doctor (any type, but best to stay away from neurologists except for the
testing to rule everything else out) who is willing to work with them and study
it and understand it and be willing to diagnose it, clinically, based on
symptoms and characteristics. Otherwise, a diagnosis is almost unobtainable.</div>
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<br /></div>
<div class="MsoNormal" style="background: white; text-align: justify;">
PP is a mineral
metabolic disorder, also known as an ion channelopathy related to potassium. On
a cellular level, if the potassium is triggered to shift in and out of the
cells (by many things...drugs the worst offender), it does so in error. This
causes many symptoms and the possibility of total paralysis.</div>
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<br />
Before a diagnosis can be received, all other medical conditions must be ruled
out. The myriad of symptoms looks neurological, so we are sent to neurologists
for diagnosing. They begin to test for all of the neurological conditions
possible and they also begin to prescribe drugs for neurological conditions.
These drugs make us worse and we develop more symptoms and worse symptoms all
the while damage is being done creating new symptoms. It is a horrible vicious
cycle and due to all of this it takes an average of 20 years to get a diagnosis,
if ever.</div>
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<br /></div>
<div class="MsoNormal" style="background: white; text-align: justify;">
So testing by a
neurologist and other specialists is necessary, but not the drugs they
ultimately prescribe. At the point everything else is ruled out, Periodic
Paralysis should be diagnosed, but instead the neurologists will diagnose with mental
disorders known as conversion disorder or a somatic condition or a functional
disorder of some form. Then they refer patients to psychiatrists where
different forms of drugs like anti-psychotics or antidepressants and more are
prescribed.</div>
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<br /></div>
<div class="MsoNormal" style="background: white; text-align: justify;">
Thus. Like
me...50 years later...after much damage from many misdiagnoses and many drugs I
did not need...I finally received a diagnosis!</div>
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<br /></div>
<div class="MsoNormal" style="background: white; text-align: justify;">
This cycle has
to stop. In the twenty-first century it should not take 20 to 50 years to fight
for a diagnosis, all the while living in “diagnosis limbo” as symptoms get
worse and irreversible.</div>
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<br /></div>
<div align="center" style="background: white; margin-bottom: .0001pt; margin: 0in; text-align: center;">
<br />
<b><span style="font-size: 14pt;">Types of Diagnosing</span></b><br />
<br />
<b><span style="font-size: 14pt;">Clinical Diagnosis<o:p></o:p></span></b></div>
<div style="background: white; margin-bottom: .0001pt; margin: 0in; text-align: justify;">
<br />
As I said previously, Periodic Paralysis is a mineral metabolic disorder. It is
typically diagnosed ‘clinically’ (based on symptoms and characteristics) after
all else is ruled out by testing. Each form of PP has specific symptoms that
can help to distinguish it from other types and other medical conditions. These
can include low potassium levels, high potassium levels, normal potassium
levels, certain heart issues, episodes of muscle weakness or paralysis and much
more. There are also certain characteristics that can accompany Andersen-Tawil
Syndrome (ATS), which can make it easier to be diagnosed such as fused/webbed
and/or curved fingers and toes, small jaw, low set ears, dental anomalies, long
QT heart beats and more.<o:p></o:p></div>
<div style="background: white; margin-bottom: .0001pt; margin: 0in; text-align: justify;">
<br /></div>
<div align="center" style="background: white; margin-bottom: .0001pt; margin: 0in; text-align: center;">
<b><i><span style="font-size: 14pt;">A 'clinical' diagnosis for PP is a perfectly
acceptable diagnosis!<o:p></o:p></span></i></b></div>
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<br /></div>
<div align="center" class="MsoNormal" style="background: white; text-align: center;">
<br />
<b>Problems Involving in Getting a Clinical Diagnosis: Provoking Symptoms<br />
<br />
</b><b><i>Warning!<br />
<br />
Under no circumstances should an individual provoke his or her symptoms or
allow a doctor to provoke his or her symptoms or an episode of paralysis by
causing an insulin/glucose overload, omitting medication, ingesting foods or
performing activities which are known triggers. This is a very serious thing to
do and can lead to death.</i></b><i><o:p></o:p></i></div>
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<br /></div>
<div style="background: white; margin-bottom: .0001pt; margin: 0in; text-align: justify;">
Some uninformed doctors using very old,
archaic information about diagnosing PP may attempt to ‘provoke’ a patient’s
symptoms in order to see them and to ‘prove’ that they have PP. This should not be done. I would like to
address this serious issue. At this point it is well known that it is a
dangerous thing to do and can have serious implications, namely death for some
people.<o:p></o:p></div>
<div style="background: white; margin-bottom: .0001pt; margin: 0in;">
<br />
For those who may need to tell their doctor's "no" on this issue I
will provide some links with information about this.<br />
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<div style="background: white; margin-bottom: .0001pt; margin: 0in;">
"Diagnosis<o:p></o:p></div>
<div style="background: white; margin-bottom: .0001pt; margin: 0in; text-align: justify;">
This disease is unusually difficult to
diagnose. Patients often report years of wrong diagnosis and treatments that
made them worse instead of better. Part of this may be that migraines are
present in up to 50% of patients and can cause a confusing array of symptoms
including headaches, speech difficulties and visual, auditory or sensory auras.
DNA testing is available for only a half dozen common gene mutations, while
dozens of known mutations are possible but are not routinely tested.
Electromyography (EMG) findings are not specific. The old glucose/insulin
provocative testing can cause life-threatening symptoms and should not be used.<o:p></o:p></div>
<div style="background: white; margin-bottom: .0001pt; margin: 0in; text-align: justify;">
<br />
Also of note is that potassium levels do not have to range outside of normal
limits to cause serious, even life-threatening paralysis. These diseases are
not the same as having a very low level of potassium (hypokalemia) or high
potassium (hyperkalemia) and must not be treated as such. The total body store
of potassium is usually normal; it is just in the wrong place."<o:p></o:p></div>
<div style="background: white; margin-bottom: .0001pt; margin: 0in;">
<a href="https://en.wikipedia.org/wiki/Periodic_paralysis">https://en.wikipedia.org/wiki/Periodic_paralysis</a><br />
<br />
“Provoking an attack with exercise and diet then trying oral potassium can be
diagnostic, but also dangerous as this form of PP has an alternate form known
as hyperkalemic periodic paralysis.”<o:p></o:p></div>
<div style="background: white; margin-bottom: .0001pt; margin: 0in; text-align: justify;">
<a href="https://en.wikipedia.org/wiki/Hypokalemic_periodic_paralysis">https://en.wikipedia.org/wiki/Hypokalemic_periodic_paralysis</a><o:p></o:p></div>
<div style="background: white; margin-bottom: .0001pt; margin: 0in;">
<br />
"Provocation testing<o:p></o:p></div>
<div style="background: white; margin-bottom: .0001pt; margin: 0in; text-align: justify;">
Provocative testing, eg exercise test, or
insulin or glucose infusion, can be employed but, for safety, is best within
secondary care:[6]<o:p></o:p></div>
<div style="background: white; margin-bottom: .0001pt; margin: 0in; text-align: justify;">
<br />
A doctor should be present during testing.<o:p></o:p></div>
<div style="background: white; margin-bottom: .0001pt; margin: 0in;">
<br />
It should be performed in a setting where intensive care, such as ventilation,
may be provided if required, with facilities for rapid electrolyte and glucose
testing and correction.<br />
<br />
Do not test patients with serum potassium disturbances, diabetes mellitus, or
renal or cardiac dysfunction. There must be close monitoring of the ECG."<br />
<a href="https://patient.info/doctor/hypokalaemic-periodic-paralysis">https://patient.info/doctor/hypokalaemic-periodic-paralysis</a><o:p></o:p></div>
<div style="background: white; margin-bottom: .0001pt; margin: 0in;">
<br />
"The best diagnostic indicator is a history of typical episodes. If
measured during an episode, serum K may be abnormal. Episodes can sometimes be
provoked by giving dextrose and insulin (to cause the hypokalemic form) or KCl
(to cause the hyperkalemic form), but only experienced physicians should
attempt provocative testing, because respiratory paralysis or cardiac
conduction abnormalities may occur with provoked episodes."<o:p></o:p></div>
<div style="background: white; margin-bottom: .0001pt; margin: 0in;">
<a href="https://www.merckmanuals.com/professional/pediatrics/inherited-muscular-disorders/familial-periodic-paralysis">https://www.merckmanuals.com/professional/pediatrics/inherited-muscular-disorders/familial-periodic-paralysis</a><br />
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<br /></div>
<div align="center" style="background: white; margin-bottom: .0001pt; margin: 0in; text-align: center;">
<b>How To Get A
Clinical Diagnosis<o:p></o:p></b></div>
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<br /></div>
<div align="center" style="background: white; margin-bottom: .0001pt; margin: 0in; text-align: center;">
<br /></div>
<div style="background: white; margin-bottom: .0001pt; margin: 0in; text-align: justify;">
As stated previously, getting a diagnosis
is very difficult unless you have symptoms that are very typical and as
described and limited in the archaic textbooks and information on line. We know
it takes an average of 20 years to get diagnosed with PP (remember, mine took
over 50 years). That is because it is diagnosed after all else is ruled out.
Once all else is ruled out, we have discovered the doctors (usually the
neurologists) prefer to diagnose with a mental disorder rather than doing more
research or saying they do not know what it is because they can then pass you
on to someone else...a psychiatrists!<o:p></o:p></div>
<div style="background: white; margin-bottom: .0001pt; margin: 0in; text-align: justify;">
<br />
It is usually neurologists who do all of the testing because the symptoms look
neurological, however, Periodic Paralysis is an ion channelopathy, which is a
mineral metabolic disorder, which they do not understand. They will also start
giving out drugs for neurological symptoms. These will make the symptom worse
and change the symptoms or cause new symptoms for which they will then
prescribe new drugs, not realizing that drugs to us are our worst triggers and
can even harm and kill us.<o:p></o:p></div>
<div style="background: white; margin-bottom: .0001pt; margin: 0in; text-align: justify;">
<br /></div>
<div style="background: white; margin-bottom: .0001pt; margin: 0in; text-align: justify;">
As far as all of the testing goes, an EMG
will not diagnose PP (though some of our members have had doctors diagnose
after an EMG) and will not rule it out either and it can rule out other
conditions. MRI's will not diagnose PP, but will rule out other things as well.
Muscle biopsies are invasive and cannot diagnose PP. The only way blood work
will be helpful is if you have low or high potassium during an episode, which
is caught at the moment you are having it.
Many, of us have episodes within normal potassium levels. Potassium
shifts very quickly usually and by the time our blood is tested has returned to
normal levels.<o:p></o:p></div>
<div style="background: white; margin-bottom: .0001pt; margin: 0in; text-align: justify;">
<br /></div>
<div style="background: white; margin-bottom: .0001pt; margin: 0in; text-align: justify;">
The best way to get a diagnosis is to
find an MD or internal med doctor who is willing to work with us. Any type of
doctor can diagnose PP. Mine was done by accident by two doctors (electro
cardiologist and renal specialist) working together on my case. (They provoked
my symptoms (I nearly died) giving me anesthesia after I told them not to. They
did not listen and scoffed at the idea. Then they saw what happened). Again,
this can be done based on symptoms (clinically). <o:p></o:p></div>
<div style="background: white; margin-bottom: .0001pt; margin: 0in; text-align: justify;">
<br />
It is best to call around until you find a doctor who is willing to work with
you, understanding that it may be PP (I talk to the office managers and tell
them my story and ask them if any of their doctors would be willing to work
with me. Eventually I get a call back. It works well. Usually young doctors
looking for a challenge are interested). That way one does not have to waste
time, money and energy going from doctor to doctor and being mistreated, abused
and humiliated.<o:p></o:p></div>
<div style="background: white; margin-bottom: .0001pt; margin: 0in; text-align: justify;">
<br />
Journaling, keeping track of symptoms and triggers, videotaping the episodes,
creating a folder with all test results and medical journal articles about PP,
and so much more can help to secure a diagnoses.</div>
<div style="background: white; margin-bottom: .0001pt; margin: 0in; text-align: justify;">
<o:p></o:p></div>
<div style="background: white; margin-bottom: .0001pt; margin: 0in; text-align: justify;">
<br /></div>
<div style="background: white; margin-bottom: .0001pt; margin: 0in; text-align: justify;">
I have written several blog articles
about how to get a diagnosis and I have written books with information in them
on how to do it. Links to these are included in this article.<o:p></o:p></div>
<div style="background: white; margin-bottom: .0001pt; margin: 0in; text-align: justify;">
<br /></div>
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<br /></div>
<div align="center" class="MsoNormal" style="background: white; text-align: center;">
<b><span style="font-size: 14.0pt; mso-bidi-font-size: 12.0pt;">Genetic Diagnosing<o:p></o:p></span></b></div>
<div class="MsoNormal" style="background: white;">
<br /></div>
<h3 style="text-align: center;">
Problems Involving Genetic Diagnosis</h3>
<div class="MsoNormal" style="background: white; text-align: justify;">
<br />
Most people who have Periodic Paralysis have one or more genetic mutations
present at birth. Some genetic testing is available, but there is much that
someone who is searching for a diagnosis needs to understand about the genetic
testing.</div>
<div class="MsoNormal" style="background: white; text-align: justify;">
<br />
Only about 50% of the genetic mutations/forms of PP have been discovered to date
so testing results may most likely be negative, because the form you have has
yet to be discovered. In most cases, the testing tends to be limited and does
not test for all forms that are known (but some of the labs do seem to be doing
a little better at that recently, than in previous years).</div>
<div class="MsoNormal" style="background: white; text-align: justify;">
<br />
Unfortunately, most doctors do not understand the above information. When the
tests results are negative, the doctors will diagnose with the mental conditions;
conversion disorder or a somatic or functional condition. These are difficult
to ever get removed from medical records. Some doctors who may have given a
‘clinical’ diagnosis may then remove the PP diagnosis altogether after seeing
the negative results. </div>
<div class="MsoBodyText3">
<br />
Genetic testing is very risky unless you have a doctor who understands the
above information.<br />
<br />
Free genetic testing does now exist and others in this group will encourage you
to do this, but I do not for very good reasoning as explained above and for
more reasons, which follow. <br />
<br />
As far as the free testing goes, everyone (including and especially your
doctors) need to understand the above information that only about 50% of the
genetic mutations/forms of PP have been discovered to date so testing results
may most likely be negative, but it does not mean that you do not have PP. It
just means that the form you have has not been discovered yet or that the
testing in most cases tends to be limited and does not test for all forms that
are known (but the labs do seem to be doing a little better at that recently, than
in previous years).</div>
<div align="center" class="MsoBodyText3" style="text-align: center;">
<br />
<br />
<b>I must include the following information at this point for everyone’s safety
and understanding!<o:p></o:p></b></div>
<div align="center" class="MsoNormal" style="background: white; text-align: center;">
<br />
<b>Problem With the Drugs and Big Pharma<o:p></o:p></b></div>
<div align="center" class="MsoNormal" style="background: white; text-align: center;">
<br /></div>
<h3 style="text-align: center;">
WARNING ABOUT THE FREE GENETIC TESTING!!</h3>
<div align="center" class="MsoNormal" style="background: white; text-align: center;">
(<b>I
do not want to debate this. This is for informational purposes only.) <br />
(From an article in our ‘Announcements’</b>)<br />
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“Hello All, </div>
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I do not do this
very often but I feel the need to bring this issue to your attention here, in
this group, before you see it somewhere else or in case you have already seen
it and are planning to take the test or just wondering about it. PLEASE
BEWARE!!! There are several issues that you need to be aware of before you
contact these people for free genetic testing. </div>
<div class="MsoNormal" style="background: white; text-align: justify;">
<br />
This company is a 'Big Pharma' company who took over the sales of the latest
carbonic anhydrase inhibitor drug that is offered for treating Periodic
Paralysis. They are offering free DNA/genetic testing for Periodic Paralysis.
They are offering the testing in order to be able to then get you on the drug
if you are diagnosed, so they can make the big bucks after charging you or the
insurance companies an arm and a leg for a drug that takes a few cents to make.
Carbonic anhydrase inhibitors are diuretics that only a few people with PP can
take without short term and/or long-term side effects, which can be serious and
possibly even cause death. </div>
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<br /></div>
<div class="MsoNormal" style="background: white; text-align: justify;">
There are three
forms of the drug and they are all the same...carbonic anhydrase inhibitors and
they are sulfa based. There are short and long term side effects; even if one
can take it in the beginning, the side effects can cause one to stop after
awhile and damage can be done to many organs including the kidneys and liver
and can create metabolic acidosis, a serious condition that we are already
prone to, just by the nature of PP being a mineral metabolic disorder. There
are other issues for children (under 18), who should not take these, including
growth concerns. Testing has not been done on children.</div>
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<br />
Many of us in this group and I have had serious effects or have nearly died
from trying it or the two other forms of it. (Please read the Blog Article I
posted at the end of this article for all the details and history behind this
drug as well as the side effects etc, from taking it. There are many links
included about the side effects, etc. so be sure to read all of it and the
other blog articles I have added to it as well.)</div>
<div class="MsoNormal" style="background: white; text-align: justify;">
<br />
*<b><i>It is important to understand that there are several forms of PP. Each
form has a different way that the paralysis and symptoms occur. One drug cannot
possibly work for all of the different forms! <o:p></o:p></i></b></div>
<div class="MsoNormal" style="background: white; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="background: white; text-align: justify;">
*(Those of you
who do take it and are successful you are lucky, but may not be able to take it
forever and still need to work on the natural ways to deal with the side
effects and/or the episodes you continue to have, some from the drug itself. <b>Remember,
the Periodic Paralysis Network and this Periodic Paralysis Network Support
Group was designed and created for those of us who cannot tolerate the drugs or
most drugs...this issue is still not up for debate here.</b>)</div>
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<br /></div>
<div class="MsoNormal" style="background: white; text-align: justify;">
This medication
used to cost what a bottle of aspirin used to cost a few years ago for a
month's prescription. The ‘Big Pharma’ company took it and changed the name and
now charges about $163.00 for 50 mg tablet. At that cost, they can afford to
pay for the cost of the genetic tests!</div>
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<br /></div>
<div align="center" class="MsoNormal" style="background: white; text-align: center;">
<b>Limited
and Biased Testing</b><br />
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Another
important point to know about this testing is that it is very limited. Only
CN4A, CACNA1S, KCNJ2 and RYR1 will be tested for...leaving out a significant
number of the actual forms that have been discovered so far. This means that it
is biased and limited. Up until now only about 50% of the forms of PP have been
discovered...so this means that a person has a very slim chance of this testing
revealing a form of PP!! </div>
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<br /></div>
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Once you do the
testing and the results are negative, the doctors who do not understand this
information will then declare that you do not have PP and the 'conversion
disorder' diagnosis usually follows. So if you have a 'clinical' diagnosis,
based on your symptoms, it is best to stick with it and avoid this testing or
any other DNA testing (they are all limited and biased)...rather than to risk
losing your diagnosis. This has happened to many of our members. </div>
<div class="MsoNormal" style="background: white; text-align: justify;">
<br />
This PPN group is a Support, Education and 'Advocacy' group. This means, besides
providing support and sharing information, we also do what we can to keep you
safe in all ways. Therefore we advocate for and discuss only all natural ways
to manage your symptoms. We cannot advocate for anyone to safely take any
drugs, including the carbonic anhydrase inhibitors with what we know about them
and what we understand about PP. Nor do we want to be held responsible legally
for advocating for them here. We are not doctors nor do we have doctors
associated with us, so we cannot discuss drugs in specifics (such as types or
amounts, etc.) or tell anyone to take a drug. Please understand that. We can
and do, however, provide the information for you to make informed decisions for
yourself, which is what we are doing here. </div>
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<br />
Hopefully, you can see the complete picture now and after reading the following
information I am sharing, before you make any decisions to follow through with
this company. I do not want to debate this...this is for informational purposes
only... “</div>
<div class="MsoNormal" style="background: white; text-align: justify;">
<br />
<span style="color: windowtext; text-decoration-line: none;"><a href="http://investors.strongbridgebio.com/news-releases/news-release-details/strongbridge-biopharma-plc-launches-uncovering-periodic">http://investors.strongbridgebio.com/news-releases/news-release-details/strongbridge-biopharma-plc-launches-uncovering-periodic</a></span></div>
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<br />
Please read the following Blog Article with links to other Blog Articles and
medically related articles discussing these drugs: </div>
<div class="MsoNormal" style="background: white; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="background: white; text-align: justify;">
"New"
Drug For Periodic Paralysis $163.80 For One 50mg Tablet!!</div>
<div class="MsoNormal" style="background: white; text-align: justify;">
<span style="color: windowtext; text-align: center; text-decoration-line: none;"><a href="http://livingwithperiodicparalysis.blogspot.com/2015/09/new-drug-for-periodic-paralysis-16380_17.html">http://livingwithperiodicparalysis.blogspot.com/2015/09/new-drug-for-periodic-paralysis-16380_17.html</a></span><span style="text-align: center;"> </span></div>
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<b>***<o:p></o:p></b></div>
<div align="center" class="MsoNormal" style="background: white; text-align: center;">
<b>New
as of June 26, 2019<o:p></o:p></b></div>
<div align="center" class="MsoNormal" style="background: white; text-align: center;">
<b><br />
Big Pharma Breaking HIPPA LAW?????<o:p></o:p></b></div>
<div class="MsoNormal" style="background: white; text-align: justify;">
<b><br />
Since writing the above article, some new information on this subject has come
to light. I have had members of our PPN Support Group tell me that the
pharmaceutical company has approached their doctors and that they are trying to
get the doctors to put their patients (our members) on the drug for PP. What
our members are asking me is how did the pharmaceutical company obtain their
names and those of their doctors?<o:p></o:p></b></div>
<div class="MsoNormal" style="background: white; text-align: justify;">
<b><br />
Who is going into our group and/or other groups and obtaining this information
and passing it on??? Or what members of our group might be doing this?</b></div>
<div class="MsoNormal" style="background: white; text-align: justify;">
<br /></div>
<div class="MsoNormal" style="background: white; text-align: justify;">
<b>Are other PP
Groups providing these names and information??? Please beware of the information
you are giving inadvertently in other groups (and check to see if the groups
are public.) <o:p></o:p></b></div>
<div class="MsoNormal" style="background: white; text-align: justify;">
<b><br />
If they are this is breaking Federal HIPPA Law </b><b><span style="font-size: 12pt;">and the rules of our PPN Support Group</span></b><b> !!!</b></div>
<div class="MsoNormal" style="background: white; text-align: justify;">
<b><br />
When I was approached no less than ten times by the Pharmaceutical Company and
their employees, before and after they introduced the new drug, each seeking
information about our members, I declined each time to provide any information
except to explain why many of our members cannot, nor should they take any
drugs, including theirs, which to my dismay after all the hype of a NEW drug,
was another carbonic anhydrase inhibitor!<o:p></o:p></b></div>
<div class="MsoNormal" style="background: white; text-align: justify;">
<b><br />
This is partly why I have been very careful to review new members as they have
sought to join our group, until very recently, but I am still very careful with
each new member. It is also, in part,
why our group is closed. I have had pharmaceutical agents attempt to join our
group! <o:p></o:p></b></div>
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<b>***<o:p></o:p></b></div>
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<br /></div>
<div class="MsoNormal" style="background: white; text-align: justify;">
With all of the
above considered, as long as everyone understands what they are doing and the
risk involved if doctors do not understand when the results are negative, then
the testing can be a useful tool for some. We already have enough of us getting
conversion disorder diagnoses, and more, without setting us up for more
disappointment. Also, one must be aware that some of our members who have
received a clinical diagnosis have done the testing later with negative results
and have had their clinical diagnoses taken away because doctors do not
understand that only some forms of PP are being tested for in the genetic
testing. <b><i>This is a serious issue.</i></b></div>
<div class="MsoBodyText3">
<br /></div>
<div class="MsoBodyText3">
I just want to let everyone understand the risks of the
testing and the drugs.</div>
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<br />
That being said, I have been recently impressed with the number of members who
are actually getting a diagnosis through the testing. But, many are not. I just
want everyone to be aware of the whole/entire picture of the company behind the
free testing and the risks of a negative result and the drug/s they are
pushing.</div>
<div class="MsoNormal" style="background: white; text-align: justify;">
<br />
I am sure that some of the members will contact you with the information off of
this board about testing, though they should not be recruiting you from this PPN
Support Group. It is against our rules Please do not make any decisions about
genetic testing without seriously considering <b>ALL</b> of the information in
this article.<br />
<br />
That being said, if you do the testing and it comes back negative for any forms
of Periodic Paralysis, <b><i>Negative Test Results Do NOT Mean the Periodic
Paralysis Does Not Exist.<o:p></o:p></i></b></div>
<div class="MsoNormal" style="background: white; text-align: justify;">
<b><br />
<i>Please remember: If your testing does come back negative, it does not mean
that you do not have a form of PP. As stated above, it simply means that the
form you have has yet to be discovered or that they did not test for the form
you have. Every doctor needs to understand this, but most do not!<o:p></o:p></i></b></div>
<div class="MsoNormal" style="text-align: justify;">
<br />
The following articles confirm what I have said and may be helpful to share
with a doctor, if testing comes back negative:</div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
"What do the results of
genetic tests mean?</div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
The results of genetic tests are
not always straightforward, which often makes them challenging to interpret and
explain. Therefore, it is important for patients and their families to ask
questions about the potential meaning of genetic test results both before and
after the test is performed. When interpreting test results, healthcare
professionals consider a person’s medical history, family history, and the type
of genetic test that was done.<br />
<br />
A positive test result means that the laboratory found a change in a particular
gene, chromosome, or protein of interest. Depending on the purpose of the test,
this result may confirm a diagnosis, indicate that a person is a carrier of a
particular genetic mutation, identify an increased risk of developing a disease
(such as cancer) in the future, or suggest a need for further testing. Because
family members have some genetic material in common, a positive test result may
also have implications for certain blood relatives of the person undergoing
testing. It is important to note that a positive result of a predictive or
presymptomatic genetic test usually cannot establish the exact risk of
developing a disorder. Also, health professionals typically cannot use a
positive test result to predict the course or severity of a condition.</div>
<div class="MsoNormal" style="text-align: justify;">
<br />
A negative test result means that the laboratory did not find a change in the
gene, chromosome, or protein under consideration. This result can indicate that
a person is not affected by a particular disorder, is not a carrier of a
specific genetic mutation, or does not have an increased risk of developing a
certain disease. <i>It is possible, however, that the test missed a
disease-causing genetic alteration because many tests cannot detect all genetic
changes that can cause a particular disorder.</i> Further testing may be
required to confirm a negative result.</div>
<div class="MsoNormal" style="text-align: justify;">
<br />
In some cases, a test result might not give any useful information. This type
of result is called uninformative, indeterminate, inconclusive, or ambiguous.
Uninformative test results sometimes occur because everyone has common, natural
variations in their DNA, called polymorphisms that do not affect health. If a
genetic test finds a change in DNA that has not been associated with a disorder
in other people, it can be difficult to tell whether it is a natural
polymorphism or a disease-causing mutation. An uninformative result cannot
confirm or rule out a specific diagnosis, and it cannot indicate whether a
person has an increased risk of developing a disorder. In some cases, testing
other affected and unaffected family members can help clarify this type of
result.”<br />
<a href="https://ghr.nlm.nih.gov/primer/testing/interpretingresults">https://ghr.nlm.nih.gov/primer/testing/interpretingresults</a></div>
<div class="MsoNormal" style="text-align: justify;">
<a href="https://ghr.nlm.nih.gov/condition/hypokalemic-periodic-paralysis#diagnosis">https://ghr.nlm.nih.gov/condition/hypokalemic-periodic-paralysis#diagnosis</a></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
Here is another one:</div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
"Genetic diagnosis is often
unreliable as only a few of the more common gene locations are tested, but even
with more extensive testing 20–37% of people with a clinical diagnosis of
hypokalemic periodic paralysis have no known mutation in the two known
genes.[7]"<br />
<a href="https://en.wikipedia.org/wiki/Hypokalemic_periodic_paralysis">https://en.wikipedia.org/wiki/Hypokalemic_periodic_paralysis</a><br />
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<div class="MsoNormal" style="text-align: justify;">
One more:</div>
<div class="MsoNormal" style="text-align: justify;">
"Of all individuals meeting
diagnostic criteria for HypoKPP, approximately 30% do not have a pathogenic
variant identified in either of these known genes."</div>
<div class="MsoNormal" style="text-align: justify;">
<a href="https://www.ncbi.nlm.nih.gov/books/NBK1338/">https://www.ncbi.nlm.nih.gov/books/NBK1338/</a></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div class="MsoNormal" style="text-align: justify;">
<br /></div>
<div align="center" class="MsoNormal" style="text-align: center;">
<b>The</b> <b>Genetic</b>
<b>Testing<o:p></o:p></b></div>
<div class="MsoNormal">
<br />
Invitae looks only for a few known mutations in SCN4A, CACNA1S, KCNJ2 and RYR1.
There are many more that exist that are not searched for. (This is the free one.)<br />
<br />
Dante does Whole Genome Sequencing but it is expensive and most insurance will
not pay for it.<br />
<br />
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<h3 style="text-align: center;">
Blog Articles That May Help To Get A Diagnosis</h3>
<div class="MsoNormal" style="background: white;">
<br />
<a href="http://livingwithperiodicparalysis.blogspot.com/2015/03/how-to-get-periodic-paralysis-diagnosis.html">http://livingwithperiodicparalysis.blogspot.com/2015/03/how-to-get-periodic-paralysis-diagnosis.html</a></div>
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<br />
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<div class="MsoNormal" style="background: white;">
<a href="http://livingwithperiodicparalysis.blogspot.com/2013/12/finding-doctor-who-cares-december-19.html">http://livingwithperiodicparalysis.blogspot.com/2013/12/finding-doctor-who-cares-december-19.html</a></div>
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<br />
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<div class="MsoNormal" style="background: white;">
<a href="http://livingwithperiodicparalysis.blogspot.com/2014/09/why-do-you-need-diagnosis.html">http://livingwithperiodicparalysis.blogspot.com/2014/09/why-do-you-need-diagnosis.html</a></div>
<div align="center" class="MsoNormal" style="text-align: center;">
<br /></div>
<div align="center" class="MsoNormal" style="text-align: center;">
<br /></div>
<h3>
<b><span style="font-size: large;">Our Books</span></b></h3>
<br />
<h4>
<i>
Living With Periodic Paralysis: The Mystery Unraveled</i></h4>
<div>
<i><br /></i></div>
<div class="MsoNormal">
<b><span style="background: white; color: #1d2129;"><i>The Periodic Paralysis Guide And Workbook: Be The Best You Can Be Naturally </i>(</span></b><span style="background: white; color: #1d2129;">Designed
especially to aid in getting a diagnosis<b>)<o:p></o:p></b></span></div>
<div class="MsoNormal">
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<b><i><span style="background: white; color: #1d2129;">A Bill Of Rights For Periodic Paralysis Patients</span></i><br />
<br />
</b><b><i><span style="background: white; color: #1d2129;">What
Is Periodic Paralysis?: A Disease Like No Other</span></i></b><b><span style="background: white; color: #1d2129;"><o:p></o:p></span></b></div>
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<span style="color: #3366ff;"><a href="https://www.amazon.com/Susan-Q-Knittle-Hunter/e/B00HVEBSSQ/ref=dp_byline_cont_pop_book_1?fbclid=IwAR0rnmoOxbuk50QICSaWdEVjCYBb6Fh10iRAwRIFBUMgxJ5Pxp1baOe6jW8" target="_blank"><span style="background: white; color: #3366ff;">https://www.amazon.com/…/B00H…/ref=dp_byline_cont_pop_book_1</span></a><b><br />
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<b><span style="font-size: large;">Videos
That May Help To Get A Diagnosis</span></b></h3>
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<span style="font-size: small;">How To Find A Doctor Who Cares
Part One</span><o:p></o:p></h1>
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<a href="https://www.facebook.com/sqkhunter/videos/10155759019982014/">https://www.facebook.com/sqkhunter/videos/10155759019982014/</a></div>
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<span style="font-size: small;">How To Find A Doctor Who Cares Part Two</span><o:p></o:p></h1>
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<a href="https://www.facebook.com/sqkhunter/videos/10155767637762014/">https://www.facebook.com/sqkhunter/videos/10155767637762014/</a></div>
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<span style="font-size: small;">How To Get A Diagnosis Part One</span></h1>
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<a href="https://www.facebook.com/sqkhunter/videos/10155784827932014/"><span style="color: windowtext; text-decoration-line: none;">https://www.facebook.com/sqkhunter/videos/10155784827932014/</span></a></div>
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<span style="font-size: small;">How To Get A Diagnosis Part Two</span><o:p></o:p></h1>
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<a href="https://www.facebook.com/sqkhunter/videos/10155793659372014/"><span style="color: windowtext; text-decoration-line: none;">https://www.facebook.com/sqkhunter/videos/10155793659372014/</span></a></div>
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<span style="font-size: small;">How To Get A Diagnosis Part
Three</span><o:p></o:p></h1>
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<a href="https://www.facebook.com/sqkhunter/videos/10155814941812014/">https://www.facebook.com/sqkhunter/videos/10155814941812014/</a></div>
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<span style="font-size: small;">How To Get A Diagnosis Part
Four</span><o:p></o:p></h1>
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<a href="https://www.facebook.com/sqkhunter/videos/10155825373717014/"><span style="color: windowtext; text-decoration-line: none;">https://www.facebook.com/sqkhunter/videos/10155825373717014/</span></a></div>
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<b><span style="font-size: large;">In Conclusion</span><span style="font-size: 14pt;"><o:p></o:p></span></b></div>
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A diagnosis is not easy to<b><span style="font-size: 14.0pt; mso-bidi-font-size: 12.0pt;"> </span></b>get, but it is
possible. There is nothing wrong with securing a ‘clinical’ diagnosis based on
symptoms and characteristics. Genetic testing is possible but many risks come
with it if doctors do not understand the limitations of the testing. Negative
test results do not mean that a person does not have PP. It only means that the
type of PP that the person has was not tested for on that particular test. A
positive test result does not mean that one should take the drugs being pushed
by other PP Groups and the pharmaceutical company. They can be and are very
dangerous to some of us. Just because someone can take the drugs, does not mean
that they will always be able to take them. There are short and long term
serious side effects from them. The drugs do not stop all of the symptoms and
everyone still needs to follow all of the natural ways to manage the PP
symptoms anyway, or will need to in the future.</div>
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A diagnosis does not actually
help a person to manage their symptoms, but it helps us to be protected and to
receive help in many ways, like adaptive equipment or being able to get
Disability benefits and more. There is little a doctor can do once a diagnosis
is obtained except to provide ‘supportive’ care and protect us in emergency
situations. We must do the work ourselves to manage our symptoms in all natural
ways and methods. We have the information to do that here at the Periodic
Paralysis Network in our Support Group, our Blog Articles and our books.</div>
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I hope this information is
helpful and I hope you will be able to get a diagnosis sooner rather than
later. I am sorry for what you are going through. I understand since it took me
over 50 years to get a diagnosis. I was there once. Do not give up!!!</div>
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The best news I have for you is that you do not need a diagnosis in order to
start feeling better and managing your symptoms. All you have to do is follow
our methods and ways to manage your symptoms to be the best you can be
naturally!!<br />
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Until Later...</div>
<span style="font-size: 12pt;"><br />
<!--[if !supportLineBreakNewLine]--><br />
<!--[endif]--></span>Susan Q.Knittle-Hunterhttp://www.blogger.com/profile/14423032446507636527noreply@blogger.com0