As my CMT progresses I’ve developed wrist drop. Just as I developed foot drop many years ago and I couldn’t lift my feet with my atrophying ankle and foot muscles, I now can no longer lift my hands with my wrists. My hands flop in a downward position unless I hold them palm up or sideways. And my fingers won’t grip anything. They are all so weak I have to use two hands to hold most things using a push-together method and I constantly drop things as this “method” is far from fool-proof. The need to use my hands (I’m left handed) to eat, do my hair, makeup, hold and pick up anything, is severely compromised and I searched for help from a local orthotist. After measuring with a laser and using a computer program to get the proper dimensions, etc., she made a wrist brace for me similar to the one I‘d used off and on for years only the new one is stiffer, holds my wrist up better and clips on and off without Velcro or any other type of fastener I wouldn’t be able to work independently. It minimally obstructs any chore I need to do and helps hold up my wrist and hand.
Here are some of the things I’ve adapted and/or use that help me cope with very weak hands and wrist drop. A few of these have also been suggested by readers on the facebook group page CMTUS. Many thanks
First the brace:
The brace just clips on and off easily. The material spreads so I can bend it to get it on by myself. The short protrusion up under the palm of my hand holds my hand up but doesn’t interfere with whatever I’m doing.
I’ll begin in morning
My mouthwash and moisturizing lotion is in pump bottle. My electric toothbrush takes two hands to hold and I have to keep it in my moth to turn it off, leaning it on the sink while trying to work the “Off” button. It’s not easy but I get a cleaner mouth than I do brushing with a regular brush. To floss, I wind a long piece of floss around both index fingers – no need for thumbs. A plastic glass bounces when dropped and is light. A paper cup is good but wears out fast. Buy shampoo, lotion, etc., in a pump bottle or replace pour tops with dispenser pumps. Dispenser pumps can be purchased in various sized and the tube can be cut to fit.
Single lever on sink tap
TOTO Washlet – no hands – just remote control to wash and dry both front and back areas
Forget nail polish but keep nails clean and fairly short. Medium length nails can help us grip things, dig into slippery soap, pick up very small items with a scooping motion even if you have no pinch between forefinger and thumb.
Brassiere – can’t do up – I still need help with this one and my fingers are too weak to pull one down.
Socks – need help with but wear knee high alpaca – soft and warm
Boots – could manage but have help – knee-high boots have skate hooks on them so they are easy to lace up but difficulty tying bow.
House Slippers (above) – have long loop on back of each one so I can flip it over my foot, twist the slipper with the loop and it is on. I wear sheepskin-lined, high moccasins handmade by aboriginal Canadians.
Slacks – can’t pull up – Velcro on slacks waist – slacks made with no waist band, lower in front and higher in back with elastic in back and longer in the leg as I sit all the time and a longer pant looks better.
T-shirts, cowl necks, turtle necks, over the head, no buttons anywhere, ever.
Sweaters – almost all cardigans – no buttons or if buttons, ignore.
Outdoor jacket – O-rings on double zippers and Velcro at front and wrists
Fly fronts – waxed shoe laces made into a loop and cut to fit the finger work well because they are stiff enough loop through the zipper closure to be opened easily with one finger but soft enough to tuck into a fly and not show
Clothes peg on any twisted plastic bag to close it – use my teeth – pumpkin seeds, nuts, bread. I know the above looks like dog poop but it’s prunes.;)
Plastic/acrylic cutlery – small, light sharp-tined silver fish fork (second from left) is good for just about everything that needs spearing. Both spoons, far left and third from left are coin silver, very old, and very light. They can be found in antiques stores. I keep a plastic fork and small, sharp knife in my purse for dining out when I can’t lift the supplied cutlery. The spoon second from the right with the serrated end is good for soft-boiled eggs and grapefruit.
Handles on a soup cup and light, large, acrylic mug used with a straw help me hold, eat and drink and the large pitcher with a flip-top opening on the lid lets me pour All-bran into my cereal dish without spilling it.
A plastic water bottle fits my hand because it is skinnier two-thirds of the way down. I use maybe six bottles a year preferring to refill them with reverse osmosis water from our kitchen. I can’t lift the bottle if it is full and need two hands most of the time to lift it. The bottle cap screws on easy with very little strength. The drinking glass is clear acrylic and very light.
I use a long bib in a muted colour to protect my clothes when I eat. I even take it to restaurants and no one really notice or cares. It has Velcro and an O-ring at side of neck so I can easily put it on and off. It has saves me a ton on dry cleaning.
I can open the freezer with one hand, no thumb. The refrigerator takes two hands.
Have two week-long pill boxes. I take 8 vitamins and one prescription drug a day. Two boxes means I only have to fill the boxes every two weeks. Try to buy vitamins in bottles with flip-top lids. Your pharmacist can also supply easy-open, flip-top pill bottles if you request them. I also use a small utility knife to cut things out of newspapers, open boxes, cut soup/milk containers, etc. and a seam ripper will also pierce protective caps on food packages and do many chores our fingers won’t.
Dragon Dictate is my saviour when I’m too tired to type. I don’t find it good for anything longer than 700 words or so but have figured out ways to work round its limitations. I still prefer to type with the knuckles of my little fingers though. Brain to hand is more satisfying for me than brain to word to microphone.
Some may be able to use a Sixth Digit, a ring with a rubber-tipped protuberance on it to hit keys, microwave buttons or anything else that sticks out and needs pushing in. I tried one on each little finger on my computer keyboard but found they wobbled too much to accurately hit the keys but they are worth a try. I’m still experimenting.
Shopping – I have difficulty picking up items from the shopping cart and placing them on the conveyor belt. I usually ask someone for help. If paying with cash I will open my wallet and ask the person at cash to take out the amount needed and replace change. I keep my charge cards in an easy to reach pockets in my purse and have used my swipe card extensively as it requires far less handling and finger dexterity than anything else. I have loop ties on zippers, on my purse and O-rings on my wallet but still find shopping difficult.
Ready for bed
Ron cuts my Dove soap bar in half to fit my hand for shower use so I don’t continually drop it. You can see it just beside the face of the hand-held shower head.
My Moen hand-held showerhead comes with a handgrip
I buy my shampoo/conditioner, facial scrub in tubes and push them up against my leg to get the contents out
My shower has a large seat so almost everything can be bedside me therefore I drop less.
My hair dryer is very small and light, a travel-style, and I use it for hair everywhere. On the advice of a noted physician, I use it for all areas I want really dry such as under my breasts, under arms and between legs. Rashes from constantly sitting are reduced when areas are really dry. I’m not able to really grip it but it is light enough for me to balance on my hand to do my hair and I can dangle it by the cord to reach other areas.
Over the head nightgown – Velcro at wrist
For warmth – Cut off hoodie with zipper and hood
Long pull chain on light over bed
Automatic bed – remote control
Everything close in bed area
Urinal with cord around its handle and cord looped over your neck so you can’t drop it as it gets heavier. Urinal has snap top lid. I use this arrangement in the middle of the night when I don’t want to wake anyone up going to the bathroom. With the hem of my nighty in my teeth, I slide to the edge of my scooter seat, put the urinal under me and as it gets heavy the cord stops me from dropping it as my fingers alone aren’t strong enough to hold it.
I love my KOBO Reader and borrow ebooks from our local library via my computer. The KOBO has a back light so I can read in the dark and it only takes a finger or knuckle touch to turn the page. I can’t hold a book or hold pages open. I did find a heavy metal dragonfly in a garden shop. I’m not sure what it’s original purpose was but it holds pages open on actual books beautifully while I read and eat breakfast at the same time. The topics I want to read about sometimes aren’t available via ebook.
Art – flip top lids on paint tubes save me from a ton of frustration.
Photography – I tried all kinds of cameras when my right index finger got too weak to push the shutter on my large Nikon. I found a small, light Canon, (in sparkly red no less), that I can hold and take horizontal photos with. I still can’t hold a camera vertically and push the shutter.
Drop something? Everyday, more than once. I use a Telestik because it doesn’t require you to squeeze something closed. I can barely grip anything much less squeeze something to make claws open to grab. The Telesik has a powerful magnet on it that isn’t used very often because how many things only look like metal these days but are actually plastic. It does grab a metal pull chain to turn on a lamp. However, the magnet is mounted in a hook that allows you to hook dishtowels, tissues, etc. from the floor. It also has a sticky disk as well and that disk picks up just about anything if you keep it sticky. Both reachers extend way out and telescope into an 8” case. I keep one in my scooter basket.
Needle-nosed pliers have saved my bacon numerous times for all kinds of gripping and opening. I can’t hold roll-on bottle. I use something called Doctor’s Pain Formula Super White Stuff for burning pain in the 3 oz. bottle. It makes the burn worse for a few minutes and then the burn lets off. Holding the bottle upside down, down under my knees (that’s where the pain is) is impossible so Ron bent a wire cost hanger into a loop that’ll take three fingers and attached it with duct tape. It works like a charm. I can hold it.
I realize that there are all kinds of useful items out there sold to help those of us with no grip, etc. but these are the things I’ve used and modified that work for me. If this post helps even one person with CMT who has weak hands and/or wrist drop it’ll be mission accomplished.
Till next time.
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