Serene Forest

Monday, July 28, 2014

Our Members Around the World!!

This map pinpoints the members of our Periodic Paralysis Support, Education and Advocacy Group around the world!! Periodic Paralysis does not seem to be as rare as some might think. It is just under- diagnosed, under-publicized and ignored!! We need to spread the word and bring awareness to this debilitating condition!!!

If you want to know more about Periodic Paralysis, you can go to:
Our website: http://www.periodicparalysisnetwork.com

Or you can purchase our book "living with Periodic Paralysis: The Mystery Unraveled" at:
http://www.periodicparalysisnetwork.com/books.htm


If you have Periodic Paralysis or think you may have it you may join us at our
Periodic Paralysis Support, Education and Advocacy Group:
https://www.facebook.com/groups/periodicparalysisnetworksupportgroup/





Friday, July 25, 2014

All patients should be treated with dignity! Guest Blogger: Maria Pinzon


Hello All,

The following was posted on our Periodic Paralysis Network Support, Education and Advocacy Group. Maria’s message is an important one for all of us so I wanted to share it on our blog. Thank you Maria!!



"Hi Susan,

I want to let you know, you are a brave and beautiful lady! I am reading your book " living with Periodic Paralysis". It is a true eye opener! I almost feel that I am reading not only the story of your life, but also the story of mine! I have experienced many of the same things you experienced growing up as a child that seemed innocuous at the time. I am now 49, not quite your age, and my symptoms have not progressed as horribly as yours. I hope they will not, but I suspect that maybe somewhere down the line we may possibly have some genetics that may link us together some how. I too have had the horrible experience of going to the ER with symptoms, and the first thing everyone wants to do is shoot me up with some Ativan, because my symptoms seem, "crazy".

Fortunately, I was a nurse, and I am aware how much of the medical personnel run to their drug of choice, Ativan, when they believe things are all in your head, and they want to make their inconvenience go away with some Ativan. I have always asked what they are giving me before they do, and I have always refused Ativan. Unfortunately, you were not in the position to advocate for yourself as you could not speak, and I have not yet had full bouts of paralysis, just full body weakness, numbness, and slurred speech and ataxia.

Because our condition is so incredibly rare, we may only get the word out to a small number of people, but there is a much larger issue here, and it is a question of human dignity. All patients should be treated with dignity. No patient should be considered a psyche problem, just because the medical professionals don't understand what is going on with them, and no patient should be sedated with Ativan or any other "psyche" drug or any other sedative type medication, because it is convenient for the nurse, and makes the inconvenience go away, before it is fully understood what is going on with the patient, and these drugs can make things much worse!

What medical text in the world states that a person with muscle weakness and slurred speech should be given Ativan??? Quite the opposite, those are signs that Ativan could make it worse, and should not be given, but that does not seem to be what is commonly practiced today! For any crazy symptom, they run to their drugs of choice to deal with the "whack jobs" that so many of my colleagues will whisper behind the patients backs! Don't get me wrong, there are the good nurses and doctors out there, who don't run to Ativan for every strange symptom, but they are few and far between!

This is a dangerous practice to administer these drugs when you don't truly understand what is going on with the patient! I fear there may come a day when I cannot advocate for myself so easily and not be able to ask what they are trying to give me, or not be able to legally and rightfully refuse it, much to their chagrin, and I hope that day never comes, but my symptoms are progressively getting worse. I have worked with far too many nurses and doctors who joke about Ativan, Haldol, Lorazepam, Valium and many other of these type of drugs being their "best friend" because a patient is having weird, "crazy" symptoms they can't control, but don't want to try, or don't have the time to try and understand or figure out! Medical professionals are supposed to do what is best for the patient, not what is most convenient for the doctor or nurse at the time. This is bad medicine and dangerous practice!!!

They take the Hippocratic and Florence Nightingale Oaths, but how many of them really take those oaths seriously? Or are these oaths they take just a nice poem they read on the day of their graduation to mark the event for many, not something they are actually called to live by? I believe every doctor, every nurse, and every medical professional should be required to read your story. Maybe more lives can be saved; maybe more bad drugs or inappropriate drugs may be prevented from being administered. Your struggle, and mine, is not just a struggle against a horrible disease, but also a struggle to be treated with dignity in the process!

God Bless you Susan Q Knittle-Hunter! Your fight and your story may do even more good in the future, then you will ever know! With much sincere respect and admiration, and a fellow sufferer of HPP and possibly Anderson Tawil Syndrome,

Maria Pinzon"


Until later...

Sunday, July 20, 2014

250 Members!!!!

Congratulations to us all at the PPN Support and Education Group!!! We now have over 250 members!!!!!!!!







Thursday, July 17, 2014

Exercise Intolerance




Hello All,

Many of the members of our PPN Support, Education and Advocacy Group write about and ask questions about puzzling and debilitating symptoms everyday. Most of these symptoms are actually related to exercise intolerance. I have decided today to share a passage from our book, living with Periodic Paralysis: The Mystery Unraveled about exercise intolerance. I hope it will answer some of those questions.


(The photo I did not share from the visit to the lake last week)



 Exercise Intolerance


“We know that there are two types of involvement of muscles in individuals with Periodic Paralysis. There are attacks of paralysis of the muscles, which are intermittent, and there is a myopathy or a progressive, permanent muscle weakness, which can occur. Some individuals experience one or the other and some experience both conditions, though it is less common to have both, and it is very rare to have only the progressive, permanent muscle weakness. If an individual develops the progressive, permanent form of periodic paralysis, it begins as exercise intolerance, usually in the legs and feet, which progressively spreads to the rest of the muscles in the body.  

In exercise intolerance the individual is not able to do physical exercise or exertion that would be expected from someone of his or her age and overall health level nor for the amount of time expected. He or she lacks stamina. The individual may also experience extreme pain and fatigue after exercising or exertion and other symptoms such as a feeling of heaviness in the muscle groups. Exercise intolerance is a symptom rather than a condition or disease. It is a common symptom found in several diseases including metabolic disorders. Periodic Paralysis is a mineral metabolic myopathy.

Food and oxygen are normally converted into energy and delivered to the muscles but this cycle is disrupted in individuals with exercise intolerance. The muscles are unable to use the nutrients and oxygen and therefore, enough energy may not be generated to the muscles and he or she is left with little or no energy. The degrees of low energy can be mild or extreme and the symptoms may occur during exercise or exertion or they can occur later, even the next day.
Symptoms
Symptoms

Symptoms of exercise intolerance include: fatigue, muscle cramps, insufficient heart rate, depression, changes in blood pressure and cyanosis. Fatigue may show within minutes of beginning to exercise with shortness of breath or dizziness. This is a sign that sufficient oxygen is not being processed. For individuals with severe exercise intolerance this can happen after doing simple tasks such as eating, sitting up in a chair or writing.  Muscle cramping and stiffness also will appear within a few minutes of beginning to exercise. This can linger for days after the exercising. There may also be a delayed reaction of hours and the pain may begin while one is sleeping causing one to awaken.  The heart rate does not increase enough to meet the needs of the muscles during the activity. Depression is often seen in individuals with exercise intolerance. Not being able to do the things a person wants to do or should be able to do can create anxiety, irritability, bewilderment and hopelessness leading to depression. Standing up or walking across a room may be all that is necessary for an individual’s blood pressure to rise significantly. Cyanosis is a serious condition that indicates there is not enough oxygen in the blood. The individual may appear to look blue in the face and hands and needs immediate medical attention.

Exercise intolerance can be seen in the small muscle groups as well as the large muscle groups. Writing or other fine motor skills can be affected causing cramping, fatigue and spasms. Tachycardia (fast heart beats) can occur from increased breathing rate this during exercise or exertion and rapid breathing increases from fatigue of the diaphragm and chest wall. Vision may become blurry due to fatigue of the eye muscles. The oral muscles, those involving the mouth, may be affected making speech difficult and making chewing of harder or tougher foods a problem. 27, 28, 30, 31, 32

Diagnosing

Diagnosis would be based on the symptoms above and the diagnosis of the root cause, which in this case is Periodic Paralysis.

Treatment

For most individuals with Periodic Paralysis who have exercise intolerance, it is best to avoid physical activity and exertion because it can lead to muscle cell damage (muscle wasting), exhaustion and a condition called lactic acidosis, a form of metabolic acidosis (also discussed in this book). It also can be a trigger for attacks of paralysis. 35, 36

My Experience with Exercise Intolerance

My own symptoms of exercise intolerance began as having a problem keeping up with others in exercise classes, walking up inclines and stairs and later during and after physical therapy. I would get fatigued, out of breath and dizzy after only a few short minutes. I would develop terrible pain in my legs during the exercising or activity and would have to stop. The pain and fatigue would be worse the following day. This continued to gradually worsen until now it takes less and less activity to create the symptoms.

Now, I cannot walk more than a few steps at a time. I cannot sit up straight in a chair for very long to do a puzzle, sew or talk with friends.  I can no longer wheel myself in a wheelchair. I cannot talk on the phone for very long. Fine motor skills, like writing or sewing by hand, cause my hands and fingers to cramp. Any exertion or exercise causes my blood pressure to rise; I get short of breath, fatigued and will later go into an attack of paralysis.

A muscle biopsy revealed signs of muscle cell change or damage and replacement with fat or lipids. I have been diagnosed with metabolic acidosis and lactic acidosis, all related to the exercise intolerance from the progressive and permanent muscle weakness I experience due to the continued and unchecked (over the years before my diagnosis) shifting of potassium from Periodic Paralysis, which is a mineral metabolic disorder. “


Until later…

Wednesday, July 9, 2014

Types of Potassium


Hello All,


Today’s blog is about the different types of potassium. Many individuals with Periodic Paralysis take potassium, but many do not nor should they. It is best to remember that not all people with PP actually need to take potassium supplements. Many of us shift only in normal ranges and other have Hyperkalemic Periodic Paralysis so if we take potassium it causes us to go into paralysis. Still others of us shift high and low, so we should not take it unless we know we are low and know it for sure and monitor it closely. Potassium is a very individual issue for each of us. The following is from our book for those who do need to take it.


Types of Potassium

When considering which type of potassium to use, it is important to understand the most common types; potassium bicarbonate, potassium citrate and potassium chloride. Potassium bicarbonate is a salty substance with no color or smell and it neutralizes acidity. Potassium citrate is also a salty substance. It is potassium bicarbonate, which has been combined with citric acid for faster absorption. It reduces acidity. Potassium chloride is also a salty substance created from a combination of potassium and chlorine. It will increase the acidity in the body. 62, 63, 64

It comes in many forms which include, salts, powders, liquid, and tablets. Some tablets may be released over time  or some  are easily dissolved. Liquid forms need to be diluted in water. The soluble tablets ad powder or salt forms need to be dissolved in water. Tablets should be swallowed whole with  8 ounces of water after meals. 65

How does someone know which type and form is best for him or her?  We are not medical doctors so we avoid offering advice about the type of potassium supplement to use. That needs to be discussed with your trusted medical advisor. However, that being said, the various forms and types are discussed here for a better understanding and decision-making.

After researching and knowing that I have chronic metabolic acidosis, I chose to use potassium bicarbonate because it neutralizes the acidity in my body. I use the salt form because and I can dilute it in water for quick absorption. I take it when my potassium levels are low. I must be careful with the amount I take because I easily swing into high potassium levels.

Although most individuals with Periodic Paralysis will get prescriptions for potassium, some may chose or need to purchase their own potassium supplements. If you purchase your own form be sure to use natural sources of potassium from a reliable natural organic source. The businesses with quality supplements which we trust for our needs can be found on our website the Periodic Paralysis Network. 59

59. Periodic Paralysis Network. (March 2013). Periodic Paralysis. Retrieved from: http://www.periodicparalysisnetwork.com

62. Wikipedia. (March 2013). Potassium bicarbonate. Retrieved from:  http://en.wikipedia.org/wiki/Potassium_bicarbonate

63. Wikipedia. (February 2013). Potassium citrate. Retrieved from:  http://en.wikipedia.org/wiki/Potassium_citrate

64. Wikipedia. (March 2013).  Potassium chloride. Retrieved from:  http://en.wikipedia.org/wiki/Potassium_chloride

65. Mayo Clinic. (November 2011).  Potassium Supplement (Oral Route, Parenteral Route). Retrieved from:

http://www.mayoclinic.com/health/drug-information/DR602373

Saturday, July 5, 2014

Open Letter To Doctors by Guest Writer, Carolanne


Hello All:

Today’s blog has been written by one of our members, a mother, who is trying to get a diagnosis and proper treatment for her daughter who is suffering greatly with symptoms much like Periodic Paralysis. Her frustration is evident in this open letter to the doctors she will see in the future.

Many of us with PP have dealt with and are dealing with this frustration.

Thank you Carolanne for sharing with us.


Dear Unknown Doctor:


My daughter has been sick. We know she has been sick and we don't know what it is. This is what we want from you:

(1) Don't do what the other doctors have done. Don't look at their notes. If we agreed with what they said, we wouldn't be seeing you. Look at past lab results, but don't look at the opinions of others. We need someone who will take a fresh look at what is going on, and be confident enough to make their own decisions.

(2) You must care. Please don't tell us that you don't know and then discharge us from your care. Say instead, "I have no idea what this is, but I'll do some research." or even, "I have a colleague, Dr. B., he may know. I'm going to set you up with him/her."

(3) Respect us. We have been living with this a long time. We see things that you won't see in a 30-minute appointment. Look at the data we bring in. Don't brush it off. We are not stupid we brought it as proof of what is going on. Don't "not look at it" and then have the gall to say "it's psychological". We are concerned and we spend our days trying to find out what is going on with someone we love very much.

(4) Please think outside of the box. There are so many rare diseases, mitochondrial reactions, genetic mutations, and people. Yes, people. We are all different. Please be open to the fact that our symptoms may be slightly different as well. We all don't fit into a box, but we all need your knowledge and expertise. Some of us will need your detective skills, and others may need those skills you need when you are putting together a 5,000 piece puzzle.
 
(5) Most importantly, LISTEN. We are spending thousands upon thousands of dollars to help our loved one. This sickness/illness/disease/condition has taken over our life. Listen to what we are saying and if you cannot empathize, please sympathize.

Until later…