Well, we are officially into fall… one of the most beautiful seasons of the year in southern Ontario. Most of the leaves have yet to turn colour but Ron brought a small branch of brilliant maple leaves home from his Sunday walk and they are as beautiful as any flower could ever be. He rarely buys me flowers but when he’s out on his walks he usually brings home something that he thinks I might like. Sunday was a branch of gorgeous leaves and a sprig of deep purple asters.
Fall also makes me think that in less than three months I’ll have to brace myself for the cold of winter.
However, it’s not the cold I want to talk about today but bracing.
Like many people with CMT, my feet and legs were affected first. I haven’t been able to walk in more than 20 years. Very slowly, my hands and wrists have been getting worse. My thumbs became paralyzed maybe 30 years ago. Then I was unable to straighten my fingers and shortly after that the area across my knuckles began to weaken.
For many years I had typed with a small pencil woven in and out of my fingers to straighten the longest one so I could hit the keys with it. When I lost the strength in the muscles across the knuckles in my palm, the pencil just dragged on the keyboard. I no longer had the strength to hold it up and that’s when I went to turning my hands sideways, thumbs towards the heavens, and typing with the knuckles of my little fingers. That way of typing is very hard on your shoulders so I eventually bought Dragon Dictate.
In the last six months I have again experienced wrist drop. I say again because many years ago I experienced this daunting progression of CMT and had a wrist brace made by the fellows at the orthotics clinic at the McMaster Health Sciences in Hamilton. My doctor had prescribed a brace that covered my entire palm and straightened my thumb so that I would have a pinch. Once measured for that brace both the orthotist and I realized that it was too much brace for my small hand. We then came up with a simple wrist enclosure with straps and a small tongue that went under the heel of my hand to hold it up. I have used that brace for 30 plus years off and on and found that I really didn’t even need the straps.
When you type with the knuckles of your little fingers you have to turn your hand sideways to do it. Your wrist can’t drop if it is turned sideways. However, you can’t eat easily with your wrist turned sideways, or at least, I can’t. I can start a meal – and I use a plastic fork because it’s so light – and halfway through, my wrist will no longer allow me to lift the fork to my mouth. There is simply no strength in my wrist at all.
I realized not too long ago that that tongue was starting to crack off the brace and it was time for a new one. A visit to my local orthotist at Niagara Prosthetics and Orthotics saw her use a Rodin 3D scanner system to calibrate the new brace. No more plaster moulds.
The first time I tried my new brace on it didn’t fit well but two subsequent visits and I had a light Duraflex brace with no straps that I could slip on by myself. The tongue was more substantial than that of my old brace and it held my wrist up beautifully. She also put holes in the underside for ventilation as plastic can get mighty hot. And, I still have some of the wrist socks they use when they put an arm in a plaster cast that I use under the brace if it is really hot out and I need to use it.
I can now feed myself, wash dishes, hold soap – even though my fingers don’t grasp it very well my fingernails do – and paint again, amongst other things that I couldn’t do when I experience complete wrist drop.
It’s a strange thing about wrist drop, at least in my case, anyway. Some days my wrist is strong and I don’t need the brace at all and other days three or four spoonfuls into my morning yoghurt and my wrist is completely limp and I’m searching for my brace.
I also make sure I have it in my purse when I go out to restaurants. My husband likes his food and for him to have to stop eating to feed me would really take the fun out of going out for a meal. I know he would do it, but I’d rather be able to feed myself, and my wrist brace makes it possible.
By the way, this new brace cost slightly over $1,000. The Assistive Devices Program (ADP), run by the government of the Ontario paid 75%, and my insurance the rest. Sometimes I wonder why I pay $200 plus a month for private health insurance then I run into something like this and it becomes abundantly clear.
If you have had any experience with wrist bracing, will you please share it with us?
Until next time,