Friday, 25 July 2014

Being Paraplegic

I am a lot of things; loud, boisterous, annoying, funny, helpful, kind, generous, and perhaps more things. One thing I don't say often about myself, however, is that I am a paraplegic. It's a word I don't apply to myself all that much, mostly because this is a new situation for me. I've only been "para" for a bit over a year now. My progression to this state was slow, I had time to get used to the condition. I've just never had much time to get used to the categorization.

My legs don't work. I cannot stand. I cannot walk. I cannot move them in bed or get up on my knees or do anything with them at all. By any definition, this is paraplegia. I did not get this way through accident or misadventure. I got this way in tiny little increments until one day I was fully here. The next stop in this process for me will likely be quadriplegia, more technically known as tetraplegia. That's what I will be when my arms no longer work.

Being a paraplegic has special health considerations that go with it. The lack of motion in the legs can lead to pressure sores, sometimes called bedsores, thrombosis (I already got me one of those), and even pneumonia. I need a lot of physiotherapy and mechanical aids, both large, like my wheelchair, and small, like the M-bar on my bed and safety bars in my shower. Today a new mechanical Aid to Daily Living, or ADL, is coming into my life.

The folks from MediChair and the ALS Society are combining to install a lift system above my bed. Getting into my bed is one of toughest things I have to face at night. Getting vertical is almost impossible; what I do is a straight lift out of my wheelchair where I force myself vertical enough such that a slight rotation allows me to slump onto the edge of my bed whereupon I push myself further on to where I am reasonably safe from falling out. The purpose of this new lift system is to relieve me of that strain, to pick me up and slide me gracefully onto my bed.

Of course nothing really works the way it is supposed to when you are a paraplegic; nothing slides easily, nothing lifts gracefully, nothing is simple. What they are really doing, at this time, is getting ahead of the tetraplegic problems, preparing for a time when I will no longer have the strength for even the easiest of transfers. In the mean time, I am supposed to use it, to learn how to use it, and to get used to the idea of it. There is another machine coming into my home; we are slowly turning it into a care centre.

That's what it really means to be a paraplegic with ALS.

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