Wrist drop and simple bracing

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.

Red and orange maple leaves

Red and orange maple leaves


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.

My old brace

My old brace


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.
Complete wrist drop

Complete wrist drop


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.
My new brace - reminds me of a Calla lily

My new brace – reminds me of a Calla lily


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.
My wrist held up by the new brace

My wrist held up by the new brace


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.
Holes in the underside of the new brace and a good sturdy tongue

Holes in the underside of the new brace and a good sturdy tongue


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.

Holding a fork wearing my new brace

Holding a fork wearing my new 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,

Cheers!
Linda

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Hand-saving ideas (part two)

Personal care and maintaining your independence can be a huge issue when your hands weaken because of CMT. Here are a few of my ideas and, please, feel free to send in yours.

For personal care buy the lightest hairdryer (usually a travel model) you can find, and lightweight washcloths and towels. A hairdryer will dry your pubic area, under breasts and arms more thoroughly than a towel. This was suggested to me by a doctor years ago when I developed a heat rash. I’ve been plugging in my hairdryer every night after my shower, ever since. No more rashes.

If you continually drop your hairbrush look for a child’s brush or go to a salon supply store and search for a small lightweight brush. They usually have a large selection of hair and makeup brushes.

Search out a lightweight showerhead if you use a hand-held shower and get yourself a lightweight long handled back brush. There are spa products online that allow you to use two hands to scrub your back and look like a long rope with loops at each end or a loofah sponge with loops. Check out Merben.com under bath and beauty and then sisal. I just bought one through Amazon and it was delivered in a week.

Have a one handled thermostatic valve installed a your shower so you don’t have to fiddle with temperature control. I have a Moen and love it.

If you continually drop large bars of soap, consider cutting them in half. Also try using a soap mitt.

If you install grab bars in a shower or tub area consider whether you will be able to actually grip them. There are various sizes and shapes of grab bars and you might want to consider sitting instead of standing in the shower if you’re to rely on your hands to continually steady yourself.

Consider a sonic toothbrush. You don’t really have to brush, just place it on the tooth and let it do its work. I have a Philips Sonicare. It’s a bit heavy and I need to turn it off by keeping it in my mouth and leaning it on the counter but it’s worth the effort.

On to getting dressed: Velcro can be your best friend. Especially good on waistbands where finicky little buttons can be impossible to do up. I have used it on pant and skirt waistbands, down the front of shirts after sewing the buttons on top of the buttonholes so it looks like it’s done up, and I know it is often used on shoes. Velcro can also ruin good material so be very careful when using it as it can pull anything it touches.

If your hands are strong enough to work an elastic waistband, it does away with buttons and zippers.

Button hooks can be purchased new or in antiques shops. They were used for boot and glove buttons in the 17th and 18th century and still work on any kind of buttons today.

This is an old bone handled utton gook likely used for gloves or children's shoes but the concept remains the same

This is an old bone handled button hook likely used for gloves or children’s shoes but the concept remains the same

An O-ring available at any hardware store or Walmart, usually in the key department, if threaded through the pull of a zipper, will allow you to slip your finger through the ring and work the zipper. You can usually tuck the ring in if you’re using it on a fly. Often just a loop of ribbon or strong thread through the top of the zipper will work. If you go to craft shows you can also find handmade zipper pulls for jackets and sweaters that are quite imaginative and fun.

Try buying tops the just slip over your head rather than button up. Lands’ End and L.L. Bean have a hug selection of T-shirts, turtle necks, cowl necks and polos for men and women in cotton knit that don’t need ironing if you smooth them right out of the dryer.

If you must wear a clean dress shirt every day think about working a professional laundry into your budget. Ask them to leave the top buttons undone so that you can just slip the shirt over your head and use a button hook for the cuffs and the 2 top buttons. A necktie can always be left tied and simply slipped over your head and then pulled back into place again when needed. Lands’ End and L.L. Bean also have no-iron dress shirts.

Socks and weak hands can be a real challenge. I simply cannot put on my own socks without a great deal of trouble. I think part of the problem is because my ankles are fused in a standing position and I had no grip. If anyone has any suggestions for putting on socks, please comment.

Consider using an extra long shoehorn – you can get them with a 2 or 3 foot extension.

If shoelaces are a problem look into elastic shoelaces that can be kept tied and you simply slip your foot into the shoe.

If you wear boots with laces consider having skate hooks put on your boots so that you don’t have to thread the laces through the holes using forefinger and thumb or buy boots with skate hooks already on them.

If you continually drop things, which I do, consider buying a device called a Telestik. (Telestik.com) It looks like two old-fashioned radio antennas in a thin black tube. Once extended, one of the antennas has a very sticky pad on it that will pick up everything from water bottles to makeup brushes. The other one has a strong magnet on it and will pick up anything metal. For a while, I had problems with the replaceable sticky pads failing, but once I got a batch of good ones, I am able to use it 5 or 6 times a day and not have to ask Ron to pick up after me.

If you have a problem with your hands being too weak to pull your slacks and underwear up from the floor after you’ve used the toilet, consider attaching a ribbon to either side of your slacks on the inside waistband. Put it round your neck as you get up and it will bring your slacks, with your underwear in them, up to a point where you can grab them. I used this on all of my slacks until I could no longer stand. Just tuck the ribbon in your underwear at the front so it is hidden before you do up your zipper.

If you use a urinal at night beside the bed but are afraid you’ll drop it as it fills and gets heavier, tie a string around the handle and make it long enough so it will loop around your neck. I use an extra long shoelace from one of my winter knee-high boots. The string around your neck holds the urinal leaving you with two hands free to grip and guide. Even if you do drop it, it’ll just dangle there until you can get a grip again.

All of the things I’ve mentioned or practical items that can help someone with weak hands but here are a couple of things that everybody with CMT can do to protect their hands and keep them as strong as possible:

Think about what you’re doing with your hands on a daily basis. Is there anything repetitive that you are doing that you don’t need to do? If your hands are getting weaker and you are texting, typing, playing games on your computer, knitting, crocheting, painting, sculpting, etc. you could be wearing out the nerves that need to fire the muscles. Remember, CMT is a problem with our nerves, not our muscles. But, our muscles require a signal from our nerves to go into action.
When our CMT affected nerves can no longer send that signal because they have been overused through the years, or simply used through daily living, the muscles atrophy. We use our hands every day for all manner of tasks for a lifetime. No wonder they give out. But not everyone has this problem. Like I said at the beginning, even people with CMT in the same family can vary in degrees of hand atrophy and some never experience it.

Do not exercise your hands purposely. They get enough wear and tear on a daily basis.

Make sure anyone advising you about your hands knows CMT well. Hand surgeon and specialist, Dr. Stuart Patterson in Lakeland, Florida (Google him), knows CMT. Sometimes surgery can help; sometime it makes the problem worse. An Occupational Therapist (OT) and/or a Physical Therapist (PT) may not know CMT and their recommendations could do you harm. Know CMT yourself. Don’t always rely on the so-called professionals. CMT is still an unknown to many. If what is recommended doesn’t sound right to you, speak up. It’s your body and your life and you have to live with the damage no matter how unintentional.

Do not use exercise equipment that relies on your hands to work other parts of your body. For instance, a rowing machine may be great for various muscle groups but you are also using your hands to grip the handles for the entire time you’re using it.

If you want to lift weights, use wrist weights.

And to end this may I suggest that you think about the future and how your hands will be five, 10 or 15 years down the road. What you do now will make things easier for you then. If you start planning and buying now for the independence you want in the future, you’ll thank yourself for thinking ahead.

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