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.

Staying positive and having something to look forward to

I like my posts to be positive and sometimes it isn’t easy to be up beat. That’s why my entries are so irregular.
These are some of the good things that happened during 2012:
I’ve gotten my pain to a manageable level using a nightly low dose of clonazapam.
Ron and I figured out how I can transfer sideways onto the toilet and into the shower without me standing.
I have taught myself Dragon Dictate. Each time I use it, I get a little better at it. For more than 50 years I have written articles using my fingers. My thoughts flow from my brain to my fingers onto the screen easily but not so easily from my brain immediately to my mouth to the screen.
With my pain level low, I had the energy to ask a circle of my friends if they would help me renovate my office. My husband, four wonderful women, and two men friends (one a carpenter I’ve known for 20 years) stepped up. In about three weeks I had an office that I can actually turn my scooter around in without making a three-point manoeuver. They sorted piles of paper, sanded and painted 30 shelves, hauled boxes of stuff, I had at one time thought I couldn’t live without, to the local recycler, painted walls and installed the shelves for my files so that I can pull them out sideways as my hands are too weak to lift and I have no grip. This means I can find things and it makes putting away much easier. My work areas now stay uncluttered.
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One of the things I love the most about the new office is a wide shelf under a long window. Right now it has seven big plants on it including four orchids getting ready to bloom. I guess you’d say orchids are my passion.
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A strange/good thing happened to me just as I was renovating the office. I had to find a new home for 400 Architectural Digests. I put them on a website called freecycle and a man who lives only three blocks from the us asked for them. The minute we met, we clicked, and have since become friends. He knows more about plants than I’ll ever know. Two weeks ago we visited a local greenhouse and rescued five phaleanopsis orchids that were in spike but not in bloom. Most people like to buy their orchids in bloom. I delight in not knowing what the colour will be and the surprise of seeing an orchid slowly unfold it’s gorgeous petals when it’s ready. I’ll take my chances with these five and they, plus my other 20, will see me through January, February, March and April with an office and bedroom full of beautiful surprises and colour.
I continue to try and make the new nature Centre Heartland Forest as accessible as possible and have met a lot of wonderful dedicated people through this project. If you’re interested in learning more about it go to HeartlandForest.org.

 

Heartland Forest Nature Centre on Dec. 2. The roof has now been completed.

Heartland Forest Nature Centre on Dec. 2. The roof has now been completed.

My newspaper column continues and I enjoy reaching out to the public while realizing what a privilege it is to be able to regularly state my position on a variety of topics concerning disability issues.
My husband and I are having our back garden done over as it’s been 23 years since anything was done out there and it’s a bit overgrown. I have plans for a bubbling rock, a beautiful flowering viburnum tree (after two trees are cut down) and some interlocking brickwork to extend the patio out so that I can have more than one person at a time visit me.
Whether it’s just a bunch of daffodils or an entirely new backyard, I like having something to look forward to during the long winter months when I rarely go out because the cold just does me in. Planning a spruced up backyard is certainly enough to keep me going for a couple of months.
And, before I forget, I entered my seven barrel salad garden I told you about in a blooming balcony competition and won a huge book listing just about every plant you can think of. Before I cracked it open I loaned it to my new garden friend so I’m looking forward to going through it during the winter as well, however, it was kind of neat to have our efforts to make an accessible garden acknowledged.
To all of you who have tuned into my blog during 2012, I wish a very Merry Christmas or whatever your holiday might be. But I think when you have CMT the most important wish should be that our condition not worsen and that we approach every day with the thought that we are going to do the very best we can with what we have left.
All the best to all of you in 2013.
Linda
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