My disability is a bloody nuisance.
I get very frustrated when I can’t do the things I want to do. When the dexterity in my hands won’t allow me to pick up a fork off the floor or can’t do the zip up on my coat or when my car needs to have the brake pads change or the oil changed. I know what needs to be done and the frustration is I can’t physically do it. And I know that getting angry at inanimate objects isn’t very clever and seeing if they could fly at times is if even less so. But I have learned to accept that there are some things that I can’t do.
However, I have managed to find an alternate way of doing things. Simple but effective ways of dealing with the condition. I wouldn’t have been able to type this page if it wasn’t for a very clever occupational therapist who designed a hand splint exactly how I wanted it which now makes me a reasonably fast two-finger typist.
So, what is this disability?
Charcot-Marie-Tooth disease (CMT Organisation) is also known as hereditary motor and sensory neuropathy. It’s wastage of the muscles in the lower part of the arms and legs because the peripheral nerves, which are the nerves that extend out from the spinal cord to the lower extremities, aren’t telling the muscles what to do. This results is muscle wastage. The muscles themselves are ok but if they’re not getting any signal from the nerves the muscles will eventually waste away.
In my case, I have lost the ability to walk but I can just about stand with a frame. My arms and shoulders are strong but my hands have significant muscle wastage.