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: email@example.com and please make sure they’re in jpg. format.
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.
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.
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.
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.