Hand-saving ideas (part one)

To answer Nathan Miller, who has CMT, regarding how he can plan ahead because his hands are getting weaker and how he can prepare himself for a future living alone, I’ll do a two–part article.

 

First, though, let me say that not everyone who has CMT will develop weak hands. My mother died at age 96 and her hands were incredibly strong until the day she died. At 70, I can barely hold a fork. We both have/had CMT2A2.

The hands pictured are mine. They do not hurt; they just don’t work. I have feeling but very little movement. If you’d like to send pictures of your hands for this blog send them to my email: linda@lindacrabtree.com and please make sure they’re in jpg. format. 

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I cannot open or spread my fingers willfully. I can open them with my other hand. My thumbs are both paralyzed. This is sometimes described in the medical books as a “clawed” hand.

 

I’m going to list what I’ve thought of and ask that those of you who read this to add to my list by writing to this blog. Include a solution, if you can.  An occupational therapist (OT) and/or physical therapist (PT) can be helpful only IF they know and understand CMT. Otherwise their advice could be harmful.

 

Using your thumbs to text many times a day could wear out the nerves serving the muscles. How many do you send in a day? Think before you whip off a text.

 

Typing all day on a computer keyboard or any other machine where your fingers are constantly used could also wear out the nerves serving your finger muscles.

Learn Dragon Dictate so computer work can be done verbally.

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I cannot open the fingers on my left hand but if I push down they will spread. I have 1.5 pounds of grip in my left hand, which is very little.

 

Try various pens at your local stationery store. I use Uniball Vision (fine tip) pens and the ink flows easily compared to regular ballpoint pens. But, no matter how good the pen, I can only write for about 20 minutes and then all strength to hold the pen is gone.

 

Use an over of the ear telephone device – so you don’t have to hold a telephone for any length of time. A Bluetooth would work.

 

Invest in a KOBO, so you don’t have to hold books.

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My right hand looks fairly useless but using both hands together, I can do many things.

 

When buying electrical appliances such as TVs, heaters, vacuum cleaners, electric blankets, a stovetop, oven, dishwasher make sure that they all have either touch or pushbutton controls. Knobs can be very difficult to turn as fingers become weaker. Always try the controls on appliances and electronic devices before you buy. Even a refrigerator with a magnetic door closure can be difficult to open if hands are extremely weak.

 

Find an electric can opener that really works for you and use it. Perhaps some readers can suggest a really good one that doesn’t require fine finger dexterity or fishing the lid out of the can.

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Nothing moves the fingers on my right hand unless I open them with my other hand. I have .5 grip in this hand which means I can’t even pick up a fork. I have no opposition between forefinger and thumb in either hand so no grip or pinch.

 

Search out easy to open food storage containers and use them. If they are also microwave safe you don’t have to transfer food from plastic to glass.

 

Look for clear, light and easy to lift Lucite mugs, glasses, plates and bowls. They not only look like glass but display the beauty of the food you are eating.

 

If knives forks and spoons become too heavy to lift, look in your local grocery or dollar store for cheap, light, plastic eating utensils. It’s up to you how fancy you want to go. I have a collection of antique coin silver spoons. They are so thin they are almost weightless.

 

When buying pots and pans look for the lightest ones available. Try to find pots with handles on both sides so you can use two hands to lift them. Dropping a hot pot full of food can be discouraging as well as dangerous.

 

Consider eating soup, stews and other thick liquids out of light weight mugs that  can be put in the microwave.

 

Figure out how many seconds to add to a microwave time so that the handle of the mug always comes around to face you when you open the microwave door. For my microwave it’s 6 seconds. This means you don’t have to reach in.

 

Fill small pump bottles with liquid hand soap and liquid dishwashing detergent and keep beside the sink. This will do away with the need to bend over and try to lift heavy bottles every time you wash your hands at the sink or do dishes, if you don’t have a dishwasher.

 

If you don’t have a dishwasher think about getting one. They not only clean your dishes better than you ever could but help eliminate dropping and breaking wet dishes and the possibility of cutting yourself.

 

Decant liquids purchased in heavy big bottles into smaller more manageable bottles. I’m thinking of wine, alcoholic beverages, fruit juices and mouthwash, shampoo, conditioner, liquid shower soaps.

 

Keep surfaces easy to clean and free of clutter. This will make cleaning and dusting easier on the hands. An air cleaner on your furnace or in your room will cut down on dust and housework.

 

Consider something I call the “slide factor “ when planning a kitchen. Often when your hands are too weak to lift something if you can slide it to where you want it to be you’ve got it made. For instance, I can slide a pot with water and an egg in it from the sink to the stovetop without lifting it. This is so much safer than trying to lift everything with incredibly weak hands.

 

Hardwood floors will eliminate the need to run a vacuum, which can be very difficult for people with weak hands and bad balance.

 

For bed making use a duvet instead of a top sheet and you can simply pull up the duvet, straighten the pillows, and the bed is made.

 

Use pull chains on lamps, especially lamps beside your bed or any place where they are difficult to reach. Twist knobs can eventually become impossible for people with weak thumbs and fingers.

 

If doorknobs become impossible to use because you can’t grip them, look online for a child’s door opener. It is a piece of rubber that goes around the knob and has a string attached to it. You can also wrap a knob with elastic bands or friction tape. If money allows, replaced knobs with lever handles that can be operated with any part of the hand or even your elbow.

 

My next list, tomorrow, will address personal items.

A KOBO is a neat Christmas gift idea for CMTers

About a month ago I was sitting in my doctor’s office waiting for them to call me and I struck up a conversation with the woman next to me who was reading an electronic book. She showed me some of its features and let me hold it. It was surprisingly light. I thought it was a terrific idea and followed the ads on TV. I even priced them out at Best Buy but they were very expensive and not what she had. Hers was a KOBO Reader.

I don’t use 95 % of the gadgets on anything electronic I buy so why pay for stuff I’ll never use. I don’t need my cellphone to take pictures. I have a lovely Nikon for that. It gets ridiculous after awhile. I wanted a reader for reading, nothing else.

My CMT hands are very weak and I have trouble holding a book much less turning pages. Ron bought me a KOBO Reader for Christmas and gave it me to me early so I could load it. I can’t tell you how much I love it.
Some of the good things I’ve found so far are:
It is light, only 8 oz.
You can pop it your purse and read it somewhere where there are no magazines or books like a doctor’s office.
You van load up to 10,000 pages, I think it is. Tons, anyway.
You can transfer read books to your computer and have more room on your KOBO.
You can prop it up on a pillow if you like to read lying down like I do.
You simply turn a page by sliding your finger tip or knuckle or the stylus over the screen.
You can keep your hands covered and warm while reading.
The back is sort of nonslip so it doesn’t slip off your lap or pillow or wherever.
You can enlarge the print and change type face to suit yourself. You can bookmark a page and turn it off and when you go back in your page is right there.
One charge lasts 2 weeks or longer.
You load it and charge it through your computer.
You can pop it n your scooter basket or wheelchair bag and have reading material with you always. I hate to be at lose ends. I’m reading The Paris Wife by Paula McLain and feel I’m right there with her. TV is good but my imagination is so much better.
It costs just above $100.
KOBO gives you a 20% off coupon for your first book.
The only drawback was:
it wasn’t as easy to startup because my main computer is a Mac but I kept at it and the people at Coles Books at Pen Centre in St. Catharines where I bought it were amazingly helpful. They not only demonstrated it but let me try it before I bought it and then when I needed help getting it started, they were there to lead me through it. Kudos to Coles for my KOBO!
Other gift items I’d suggest are
The PediPocket nail kit and Cozysoles heat-up slippers.
both are on Google.
Any interesting gifts you’d suggest for your fellow CMTer?