Family Dynamics and Periodic Paralysis: An overview

Family Dynamics and Periodic Paralysis: An overview

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.

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?

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.

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.

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.

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.

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.

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!!”

(This was taken directly from my book Living With Periodic Paralysis: The Mystery Unraveled)



Until later.......

Periodic Paralysis vs Cancer

Hello,

 

Yesterday, several members of our PPN Support Group had a discussion, which was unsettling and about a subject I think about quite often since it is something I live with and hear about daily from our members.

Several of our members are cancer survivors as well as are living with the cruel symptoms of Periodic Paralysis (PP). Having one or the other is bad enough but to endure both is incomprehensible. The interesting issue here is how they were or are treated by doctors, families and friends, depending on whether it is the Periodic Paralysis or cancer from which they are suffering or for which they are being treated or for which they are discussing.

One member, who has been treated for cancer and is part of a Facebook support group for breast cancer patients, discussed how although cancer is a horribly dreaded disease and many of the members are in advanced stages, there is much hope in the posts these women write. This is due to the support they receive from their doctors and medical professionals and the treatments they receive that at least help them and many times cure the cancer. These individuals also receive support and help from family, friends, neighbors and even strangers.

She pointed out that those of us with the various forms of Periodic Paralysis or Anderson-Tawil Syndrome deal with mostly unkind doctors and with no “universal” treatment. I will go a few steps further and say that the doctors we see are not only unkind, but they are uncaring, rude and egotistical with little knowledge of PP and they use outdated and improper information when dealing with us. There is no “universal” treatment for PP and very little research is being done to find treatments or cures for the different forms.

Patients with cancer are supported with caring doctors who tell them with tears in their eyes, “we won’t let you die” or “we will beat this” and actually give their patients a hug, squeeze their hand or pat their back. Those of us with PP have doctors who tell us we need to ”see a psychiatrist” and diagnose us with conversion disorder, throw their pencil across the room and swear when they are told that the medicine they gave us caused horrible pain in our leg muscles, or tell us not to come back after the only drug used to treat PP made your paralysis worse so you had to stop taking it.

When in an episode of total paralysis we have doctors who will pinch us, stick us with pins and more trying to get a reaction from us to prove we are faking. We are given IVs and medications, which can kill us, even after we tell them not to do it. Some of us have even been told we are “too old” to have Periodic Paralysis.  Most of us get doctors who cannot or will not help us.

How wonderful it is when one of us locates a doctor who really cares about our welfare, even if there is nothing much they can do to help our symptoms!

One woman wrote, ”If I had cancer my family would probably care and call me and visit and take turns helping me, but with PP I get ignored. Yes, wouldn't it be wonderful to be treated like that by doctors and family and the public.”

Periodic Paralysis has the potential of being every bit as life threatening as cancer. It is a very rare, debilitating mineral metabolic disorder called an ion channelopathy. It is often misdiagnosed and mistreated, thus causing more damage or possible death to the person with it. On a cellular level, triggered by things such as sleep, exercise, sugar, salt, most medications, stress, cold, heat, anesthesia, adrenaline, IVs and much more, potassium wrongly enters the muscles either temporarily weakening or paralyzing the individual. Episodes can be full body lasting hours or days. If it affects the breathing muscles it can become terminal. 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 and permanent muscular weakness can also affect the individual with this condition.

Most of us know that we are just the wrong medication, one stressful situation, too much physical exertion, a meal that contained gluten without our knowledge or taking a nap from going into arrhythmia, cardiac arrest or respiratory arrest and dying. Yet, many of our family members do not believe us, ignore us, refuse to help us, are rude to us, keep our grandchildren away and think we are faking.

After reading this post and replies yesterday, I was saddened to have a close family member of mine, post something on her Facebook page that was truly upsetting, unsettling and surprising, considering she has never posted anything about Periodic Paralysis like this. She discussed how she had been to a presentation or some type of fundraiser for supporting an organization for people with lymphoma. She said “these things can happen to anyone of us or our family members” and so she was going to support this organization and people with this disease.

Well, to her I would like to say:

Hello there, remember me? I am a very close family member!!! This has happened and is happening in your own family!! I have a very rare, incurable, untreatable, incapacitating, disabling and progressive disease called Periodic Paralysis from which I am dying. I need your support as well as the others in our family who also have PP. We need to not be ignored, dismissed or forgotten. We need you to help spread the word about Periodic Paralysis in our family and help to educate the others as well as your friends. We need you to share our book and tell the others about our website and blog. We need you to share the information with your doctors.

This is a perfect example of what the members on our support group were discussing yesterday. Cancer patients are accepted by doctors, family, friends, neighbors and even strangers as being worthy of and needing help, support, kindness, recognition, respect, love and much more. However, individuals with Periodic Paralysis are seen as fakers, and liars who are lazy, and apparently not worthy of help, support, kindness, recognition, respect, or love by their doctors, family, friends, neighbors and even strangers.

It is bad enough being severely ill with a very rare, incurable, untreatable, incapacitating, disabling and progressive disease each and every day and having to give up so much due to the illness, but the stress of abandonment and mistreatment of our doctors, family and friends is nearly unbearable.

We continue to have hope that these things will change for us and we have each other for support.

Until later…