Serene Forest

Wednesday, May 25, 2016

Over 525 Members!!



This is good news and bad news!!! We now have over 525 members!! The bad news is that so many people are suffering from this cruel disease. The good news is that we are able to help and provide HOPE by sharing support, education and advocacy.
Thank you all for your support!!!
The following are the services and features of our PPN Forum:
PPN Website: www.periodicparalysisnetwork.com
PPN Support, Education and Advocacy Group:
https://www.facebook.com/groups/periodicparalysisnetworksupportgroup/
PPN Books:
"Living With Periodic Paralysis: The Mystery Unraveled"
"The Periodic Paralysis Guide And Workbook: Be The Best You Can Be Naturally"
"A Bill Of Rights For Periodic Paralysis Patients"
(All found on Amazon and on our website http://www.periodicparalysisnetwork.com/books.htm)
PPN Blog: http://livingwithperiodicparalysis.blogspot.com/
PPN Book Discussion Group:
https://www.facebook.com/groups/periodicparalysisnetwork/
PPN Genealogy Discussion Group:
https://www.facebook.com/groups/580168915344191/
PPNI Genetics Discussion and Research Group.
https://www.facebook.com/groups/1574048096186578/
The PPN Learning Center and Workshop:
https://www.facebook.com/groups/1416848568618404/
PPN Website Facebook Page:
https://www.facebook.com/PeriodicParalysisNetwork
PPN Author's Page:
https://www.facebook.com/SusanQKnittleHunterauthor
Email: periodicparalysisnetwork@gmail.com
GoFundMe: http://www.gofundme.com/ftnr50
Bravelets: https://www.bravelets.com/…/alone-in-the-dark-periodic-para…
Video about Periodic Paralysis: https://www.youtube.com/watch?v=YSRVOkdFRQc
Twitter: https://twitter.com/NetPeriodic
Periodic Paralysis World Awareness Day Page:
https://www.facebook.com/PPAwarenessDay/
Please check out our PPN Members World Map:
http://www.multiplottr.com/?map_id=55083
Thank you all for your support........

Wednesday, April 20, 2016



This is good news and bad news!!! We now have over 500 members!! The bad news is that so many people are suffering from this cruel disease. The good news is that we are able to help and provide HOPE by sharing support, education and advocacy.
Thank you all for your support!!!
The following are the services and features of our PPN Forum:
PPN Website: www.periodicparalysisnetwork.com
PPN Support, Education and Advocacy Group:
https://www.facebook.com/groups/periodicparalysisnetworksupportgroup/
PPN Books:
"Living With Periodic Paralysis: The Mystery Unraveled"
"The Periodic Paralysis Guide And Workbook: Be The Best You Can Be Naturally"
"A Bill Of Rights For Periodic Paralysis Patients"
(All found on Amazon and on our website http://www.periodicparalysisnetwork.com/books.htm)
PPN Blog: http://livingwithperiodicparalysis.blogspot.com/
PPN Book Discussion Group:
https://www.facebook.com/groups/periodicparalysisnetwork/
PPN Genealogy Discussion Group:
https://www.facebook.com/groups/580168915344191/
PPNI Genetics Discussion and Research Group.
https://www.facebook.com/groups/1574048096186578/
The PPN Learning Center and Workshop:
https://www.facebook.com/groups/1416848568618404/
PPN Website Facebook Page:
https://www.facebook.com/PeriodicParalysisNetwork
PPN Author's Page:
https://www.facebook.com/SusanQKnittleHunterauthor
Email: periodicparalysisnetwork@gmail.com
GoFundMe: http://www.gofundme.com/ftnr50
Bravelets: https://www.bravelets.com/…/alone-in-the-dark-periodic-para…
Video about Periodic Paralysis: https://www.youtube.com/watch?v=YSRVOkdFRQc
Twitter: https://twitter.com/NetPeriodic
Periodic Paralysis World Awareness Day Page:
https://www.facebook.com/PPAwarenessDay/
Please check out our PPN Members World Map:
http://www.multiplottr.com/?map_id=55083
Thank you all for your support........

Tuesday, March 1, 2016

Rare Disease Day Photo

We wanted to share our observation of Rare Disease Day by sharing a picture of us with our new Periodic Paralysis Awareness T-shirts!!
Thank you all for your support!!!
Calvin and Susan Hunter Co-Founders, Co-Creators and C-Managers of Periodic Paralysis Network.

Monday, February 29, 2016

What is Periodic Paralysis?? For "Rare Disease Day"



What is Periodic Paralysis?


Periodic Paralysis is a little known, misunderstood, under recognized and difficult to diagnose mineral metabolic disorder, also known as an ion channelopathy.

Do you have any of the following symptoms or a combination of them?

  • Episodes of muscle weakness or paralysis in an arm or leg or the entire body?
  • Wake up and cannot move?
  • Racing or erratic heart beat?
  • Fluctuating blood pressure?
  • Difficulty breathing at times?
  • Potassium levels too low or too high?
  • Strange or opposite side effects from medications?
  • Medications make your symptoms worse?
  • Difficulty with anesthesia?
  • Medical testing always negative?
  • Doctors cannot figure out what is wrong?

You may have Periodic Paralysis!

On a cellular level, triggered by things such as sleep, exercise, sugar, salt, most medications, stress, cold, heat, anesthesia, adrenaline, IV’s and much more, potassium wrongly enters the muscles either temporarily weakening or paralyzing the individual. Episodes can be full body lasting hours or days. Dangerous heart arrhythmia, heart rate fluctuation, blood pressure fluctuation, choking, breathing difficulties, cardiac arrest and/or respiratory arrest can also accompany the episodes. Due to these complications, it is extremely important to avoid the episodes. Gradual, progressive, muscular weakness can also affect the individual with this condition.

There are several forms of Periodic Paralysis:

Hypokalemic Periodic Paralysis

Paralysis results from potassium moving from the blood into muscle cells in an abnormal way. It is associated with low levels of potassium in the blood (hypokalemia) during paralytic episodes.

Hyperkalemic Periodic Paralysis

Paralysis results from problems with the way the body controls sodium and potassium levels in cells. It is associated with high levels of potassium in the blood (hyperkalemia) during paralytic episodes.

Andersen-Tawil Syndrome (ATS)

Paralysis results when the channel does not open properly; potassium cannot leave the cell. This disrupts the flow of potassium ions in skeletal and cardiac muscle. During paralytic episodes, ATS can be associated with low potassium, high potassium or shifts within the normal (normokalemia) ranges of potassium. An arrhythmia, long Qt interval heartbeat, is associated with ATS as well as certain characteristics, such as webbed or partially webbed toes, crooked little fingers and dental anomalies.

Normokalemic Periodic Paralysis (NormoPP)

Paralysis results when potassium shifts within in normal ranges. This can happen in any form of Periodic Paralysis. The paralysis may result from the shifting itself, rather than low or high potassium or it may occur due to the shifting of the potassium, which can happen very quickly and is undetectable in lab testing.

Paramyotonia Congenita (PMC)

The skeletal muscles can become stiff, tight, tense or contracted and weak due when the sodium channels close much too slowly and the sodium, potassium, chloride and water continue to flow into the muscles. It is actually considered to be a form of Hyperkalemic Periodic Paralysis, however, the symptoms can appear from shifting of potassium into low or high ranges or even if potassium shifts within normal levels.

Thyrotoxic Periodic Paralysis (TPP)

Intermittent paralysis results from low potassium due to an overactive thyroid or hyperthyroidism. It can occur spontaneously or can result from a genetic mutation. Unlike the other forms of Periodic Paralysis, TPP can be treated and cured by removing or treating the thyroid.

Diagnosing:

Diagnosing for Periodic Paralysis takes an average of 20 years! This is due to the fact that all other conditions must be ruled out. Some of the known types of Periodic Paralysis have identified genetic markers. This means they can be diagnosed by DNA testing. But, many mutations have not been found yet so individuals with Periodic Paralysis need to be diagnosed based on the symptoms and characteristics.

Treatment:

There are no known cures, but the symptoms can be managed for most individuals using natural methods including diet changes and eliminating the triggers.

Please join us or contact us at the Periodic Paralysis Network
for more information.

We provide HOPE to individuals with Periodic Paralysis through:

*Awareness
*Support…
*Education
*Advocacy

For more information please contact us at:


PPNI Blog:

PPNI Books:

PPNI Support Group:




Wednesday, February 3, 2016

Periodic Paralysis Awareness Campaign!!

Hello All,

Great News!!!! Our Periodic Paralysis Awareness Campaign has now begun!!!! It will last two weeks. The final day to order will be February 18.

There is a choice of 4 types of shirts. We have a sweatshirt hoodie, a shirt for women (more fitted), a long sleeve shirt and the general unisex shirt. These are all available in grey/silver (for potassium). We added a cream (signifies paralysis) color shirt and a PURPLE shirt. Potassium turns purple when it burns...so we wanted to add some fun for those who may want to make a bolder statement!!!!

We need to sell at least 50 shirts in order for them to be printed. The prices vary depending on the type of shirt. The general unisex shirt is $21.00.
The shirts will be sent out after the campaign closes. They do ship out of the USA.

This company has an outstanding reputation and has been wonderful to work with.

Thank you for your support.....

Donations may also be made.

Please share this with everyone!!!!

https://www.booster.com/periodic-paralysis-awareness

Sunday, January 31, 2016

475 Members!!!


Thank you all for your support!!!

The following are the services and features of our PPN Forum:


PPN Support, Education and Advocacy Group:

PPN Books:
"Living With Periodic Paralysis: The Mystery Unraveled"

"The Periodic Paralysis Guide And Workbook: Be The Best You Can Be Naturally"

"A Bill Of Rights For Periodic Paralysis Patients"

(All found on Amazon and on our website http://www.periodicparalysisnetwork.com/books.htm)


PPN Book Discussion Group:

PPN Genealogy Discussion Group:

PPNI Genetics Discussion and Research Group.

The PPN Learning Center and Workshop:

PPN Website Facebook Page:

PPN Author's Page:




Video about Periodic Paralysis: https://www.youtube.com/watch?v=YSRVOkdFRQc


Periodic Paralysis World Awareness Day Page:

Please check out our PPN Members World Map:

Thank you all for your support........

Saturday, January 23, 2016

Average Number of Paralytic Attacks Per Year?



Hello All,

Yesterday I received an email from a registered nurse researching some things about Periodic Paralysis. She had a question for which she could not find an answer anywhere.

This was her question:
Is there is an average number of attacks that patients with periodic paralysis experience per year?

This is my answer:
Thank you for contacting me. I am curious as to what context you are going to use this information??

You will not find this information anywhere that I know, because there is no such thing as an average number of attacks that someone with Periodic Paralysis has in a year. This is due to many factors, but the main three are that there are several different forms of Periodic Paralysis and within each of these forms, the symptoms and paralytic episodes can be very different for each person, even members in the same family. The second is because the causes behind the symptoms and paralytic attacks, which are called triggers, cause different symptoms and different types of paralytic episodes. The third factor that makes a difference is how well the symptoms and paralytic episodes are controlled. Everyone is different and many things can and do change over time for each person.

The episodes or attacks of paralysis are also very different. They may be full-body, which includes inability to move at all (eyes shut, no ability to speak, heart arrhythmia, blood pressure fluctuation, heart rate fluctuation, breathing issues…including cessation of breathing, low oxygen, choking and the possibility of death). The person can always hear what is going on, despite looking asleep or unconscious. The episodes can be any variation from this down to one leg or arm going numb or only the left side being affected, etc. They can also be flaccid or be total constriction of the muscles causing great pain. There may be ataxia or headaches, cramping or vision issues and more. Periodic Paralysis is more than periods of paralysis. These episodes may last for hours or days or may only last for a few minutes.

Triggers include drugs of any kind…including IVs, anesthesia, insulin, antibiotics, hormones, adrenaline/epinephrine, contrast dyes, anything over-the-counter…exercise, rest after exercise, exertion, stress…good and bad…weather changes, cold and heat, dehydration, menstrual cycle, foods, food additives, food colorings, processed foods, salt, sugar, gluten, carbohydrates, sleep…all stages…infections, influenza and much more.

If someone has discovered their triggers and then avoids them, and is following a p/H balanced diet and is managing their symptoms they may not have any episodes at all, unless occasionally they may accidentally get introduced to something else that may cause an episode. Some may continue to have episodes, despite doing everything correctly.

Some may never have an episode of any type, but instead have gradual permanent progressive muscle weakness PMW. Most all of us develop permanent progressive muscle weakness over our lifetime, especially those who were not diagnosed and treated in a timely manner.

To explain further, I will use myself as an example. Before I had a diagnosis, when my episodes became full-body, as described above, they became very severe lasting hours at a time. This happened four or five time a day and most of the time I was sleeping at night. This went on for months and months and no doctors understood what was happening or how to help me. We (my husband and I) finally figured out what I had and how I could help myself. All drugs were stopped, I got oxygen therapy, my husband began to feed me a p/H balanced diet, we discovered my triggers and avoided them. After a few months my episodes decreased to one or two a month, which were much less severe and shorter in duration. Several years later, I now have episodes only one or two every few months, however, permanent muscle weakness has nearly totally debilitated me. I am unable to do much more than sit in a recliner all day and must use a power wheelchair.

Over my first forty years or so, I had medical issues beginning as a child, all things easily explained away as other things, that I did not realize were partial paralytic episodes. Years of testing and wrong and unneeded drugs and medications due to wrong diagnoses changed/covered my symptoms and harmed me. It took over fifty years before I finally got my diagnosis of Andersen-Tawil Syndrome.
 
The average time it takes to get a diagnosis for Periodic Paralysis is twenty years. A great deal of damage can and is done during that time to the organs in the body, especially when misdiagnosed and improper drugs and medications are prescribed.

So, as you can see, there is no way to answer your question with a number. We are all different and our episodes are very different.

If you would like to know more please feel free to contact me.

I hope this is helpful.

Sincerely,

Susan Q. Knittle-Hunter
Managing Director
Periodic Paralysis Network



Until later…

Friday, January 15, 2016

Normokalemic Periodic Paralysis Update

Hello All,

I have put together a list of articles, etc proving the existence of Normokalemic Periodic Paralysis....This may be used if you have doubting doctors...

You can make copies of the articles and put them in your medical file and other medical records to share with your doctors....

There is a form of Normokalemic PP...found by Dr Lehman-Horn...a real genetic mutation...CACNAIC.

It also happens in Andersen-Tawil Syndrome and Hyperkalemic Periodic Paralysis.

Newest studies indicate that potassium does not have to shift at all to create the symptoms/paralysis.

The information is below:

Normokalemic Periodic Paralysis

Blog Article:

http://livingwithperiodicparalysis.blogspot.com/2014/02/what-is-normokalemic-periodic-paralysis.html

Articles:

Normal Potassium levels with PP:
Interesting information about Normokalemic Periodic Paralysis from the MDA in England.....Very very important to read and pass along to the doctors who are questioning those whose potassium remains in normal levels while having PP symptoms and paralysis......

”Normokalaemic periodic paralysis: In these attacks the blood potassium remains normal
In fact, it has recently been discovered that it is not the change in the blood potassium level that is the primary problem in periodic paralysis. The primary problem in all of these conditions is that the normal pores which exist in the walls of the muscle cells don’t work properly. It does seem that changes in blood potassium levels can further hinder the function of these pores and that is why changes in blood potassium can be relevant. However, other factors separate from blood potassium can also worsen the function of the pores, so a change in blood potassium is not essential." http://www.musculardystrophyuk.org/app/uploads/2015/02/periodic-paralyses.pdf


Link for PP Labs: Normokalemic Periodic Paralysis
While researching something else today, I came across this and thought I should share it. Perhaps it can answer some of your questions about lab results and how they relate to our different forms of PP..

Hypokalemic Periodic Paralysis:
"Serum potassium level decreases during attacks but not necessarily below normal." "Creatine phosphokinase (CPK) level rises during attacks."

Hyperkalemic Periodic Paralysis:
"Serum potassium level may increase to as high as 5-6 mEq/L. Sometimes, it may be at the upper limit of normal, and it seldom reaches cardiotoxic levels. Serum sodium level may fall as potassium level rises."
http://emedicine.medscape.com/article/1171678-workup

https://rarediseases.info.nih.gov/gard/4009/normokalemic-periodic-paralysis/resources/1

http://www.ncbi.nlm.nih.gov/pubmed/1438924

http://omim.org/entry/170600

“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.”
https://en.wikipedia.org/wiki/Periodic_paralysis

Andersen-Tawil Syndrome:

Paralysis/symptoms while potassium is in normal ranges:

”Attack frequency, duration and severity are variable between and within affected individuals and may not correlate with ictal serum K levels, which may be reduced, normal or elevated.”
http://brain.oxfordjournals.org/content/129/1/8

Genetic mutation for Normokalemic Periodic Paralysis:

New information has been published to relate mutations on the CACNAIC gene, also known as Cav1.1, is the first calcium channel related to Normokalemic Periodic Paralysis.

According to Lehman-Horn F. et al, “This study shows for the first time that functional characterization of omega pore currents is possible using a cultured cell line expressing mutant Ca(v)1.1 channels. Likewise, it is the first calcium channel mutation for complicated normokalaemic periodic paralysis.”

http://www.ncbi.nlm.nih.gov/pubmed/24240197/


Until later...

Tuesday, January 12, 2016

Periodic Paralysis World Awareness Day February 7, 2016





Hello All,
The "Periodic Paralysis World Awareness Day" Page has been created by the Periodic Paralysis Network to help bring awareness about this little known rare medical disorder to the world. We have chosen February 7 as "Periodic Paralysis World Awareness Day" because it is the day I finally received my diagnosis after more than 50 years!! What a better day to use in order to bring awareness about this disorder and to make sure that others do not have to wait over 50 years for a diagnosis and the help they need? Research indicates that it takes an average of 20 years to get a diagnosis for Periodic Paralysis in today's world. This has to stop!!! More awareness and education is needed around the world about this disabling and sometimes fatal disease.

Our "Periodic Paralysis World Awareness Day" theme this year is "What Is Periodic Paralysis?" We are starting our campaign with an informational poster. We will continue to share information, ideas and more from now through February 7, 2016, which is our third "Periodic Paralysis World Awareness Day" in order to bring awareness to this rare medical condition.

Please join us!!

Susan Q. Knittle-Hunter
Managing Director
Periodic Paralysis Network
The Periodic Paralysis Network Forum

Website: 
Email: 
periodicparalysisnetwork@gmail.com
Blog: 
http://livingwithperiodicparalysis.blogspot.com/
Support, Education and Advocacy Group:
https://www.facebook.com/groups/periodicparalysisnetworksupportgroup/
Books:
"Living With Periodic Paralysis: The Mystery Unraveled" "The Periodic Paralysis Guide And Workbook: Be The Best You Can Be Naturally"
"A Bill Of Rights For Periodic Paralysis Patients"
Purchase through Amazon and our Website: http://www.periodicparalysisnetwork.com/books.htm