Serene Forest

Sunday, January 5, 2014

The Effects Of Periodic Paralysis Cannot Be Minimized For Most Of Us

Hello All,

I have had to rest the past few days so I have not completed a new blog, but I do have five of them I am working on. This morning we needed to explain some things about Periodic Paralysis to someone who does not know much about it but needs to know because a family member has it.
My first response is "Where do I start to explain PP to someone with no knowledge except for seeing a family member going thru hell trying to get relief for their symptoms?" These options may not be the best options, but anything is worth a try to stop the periods of paralysis and accompanying symptoms and the lingering effects of the episodes.

Each person with PP is individual from the next...some things are the same and some things are different, even in the same family. Some things work and some things do not. My daughter is only 40 but has been deemed disabled for seven years now, my symptoms and other family members symptoms did not get to that point until we were in our forties and we have all been deemed disabled since we were fifty and unable to work. Each of us is experiencing gradual, permanent muscle weakness. I am in a power wheelchair, the others use canes and scooters and other aides.

The effects of PP cannot be minimized for most of us. Much of the time when not in paralysis we are in a state of horrible fatigue and overwhelming weakness (abortive attacks). Our minds experience a brain fog, and the potassium shifting can cause depression, changes in personality, and many other long time issues like kidney stones and osteoporosis. The medications prescribed for Periodic Paralysis either do not work or make us worse. We cannot take other medications to treat our side effects or accompanying conditions. We try everything and anything to stop this. We research and study looking for answers. We join support groups seeking support, understanding and validation. We share our stories hoping others are going through what we are and hoping news of a new drug or a new idea or treatment to try.

Every once in awhile, we have a great day and almost feel normal. At those times we will push ourselves to play catch-up on our chores or hobbies and then go back into the debilitating symptoms again. Most of the time we do not know what made us have a good day or what made us worse again. This is merely existing and is a difficult way to live. PP is cruel to many of us.

We have to walk a fine line on managing our symptoms and what worked yesterday may not work today. We may need a wheelchair right now, but in an hour be able to walk across the house. This may cause us to look like we are faking or making it up or just being "lazy." Family, friends, co-workers, bosses and doctors uneducated about PP may not understand. It is confusing and frustrating for us too.

That being said, many of us can take the medications prescribed for Periodic Paralysis and do very well in life, at least early on. We can work, have a family, exercise and eat what we want...those people are very lucky.

Until later...

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