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.

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A portrait

Had some fun today.

A bit of background: Many years ago when I worked for the local newspaper, I did a feature on a young artist and he grew up to be the art director of CARP, (it stands for Canadian Association of Retired Persons) a magazine for seniors. Somehow I got involved in a feature on accessible houses because I designed ours, was interviewed, and pictures taken. From there I’ve kept in touch with the senior editor, Jayne MacAuley, and she’s been keeping me and my work in mind for several years now.

The first attempt was a fashion shoot featuring clothes designed for people with disabilities. I am a size 16 and the designer makes her samples in size 5. That certainly wouldn’t work. I’m far too large and not the fashionista type. I love simple but elegant clothing, however I usually end up in slacks and shirt with open neck and cuffs turned up. I work and I guess I look like it. That’s fine. If anything was to be in the magazine I wanted it to be on what I’m all about, not clothing.

Julie and Paul

Then I received an e-mail last week from Julie Matus, the photo editor of Zoomer Canada, the transformed-by-Moses-Znaimer CARP magazine, wanting to know if I’d be available for a portrait shoot at my home this week. (Moses recently wrote an editorial on Universal Design that I love. He’s into it almost as much as I am.) The photo shoot was set for today. The feature is called 45 over 45 and I assume I’ll be with 44 other Canadians around my age who are doing something with their lives. I hope that’s what it is.

Around 1 p.m. Julie Matus and Paul Alexander arrived. Paul is a professional photographer who works all over the world but I didn’t know that until they left.

Paul spotted a beam of light coming through the skylight over my desk and that’s where we took the first of many shots. He takes a whole mess of pictures at one time and catches every move. One crazy joke and he had me.

I’d thought long and hard about what to wear. The photo won’t be used until October. I didn’t want to look all summery in a fall feature so I chose a crisp white Land’s End blouse and turned up the cuffs, a pair of dark brown slacks, my good old high brown leather boots, pearl earrings and my Rolex. That’s it. Less is more in my books. My very old, but still functioning, Fortress Scientific 2000 electric scooter with reflective red and white, stripped traffic stopping tape completed my ensemble. You gotta love it. I’ll bet no one has worn a scooter in a recent issue of Zoomer.

We also shot out in the backyard because they wanted a simple green background and then sideways beside our van with the side door open and the ramp showing. I think that one made an interesting design but I’d rather have a face-on shot with the article. I’m a face-on sort of person, I think. What they use is really all up to Julie.

I also screwed up the courage to asked Paul to take a shot of me with my good old CMT hands showing. They don’t look like normal hands but I’m certainly not ashamed of them. They write stories, working these keys like crazy, even though I can only type with the knuckles of my little fingers now. I just do a lot more editing, that’s all. They also let me connect with thousands of people around the world wanting to come to Niagara as tourists through my AccessibleNiagara.com website or asking questions about our mutual disease, CMT. I’d love a portrait that includes my hands but it never seems to happen. It seems people are ashamed of my hands for me. They are the people who don’t really know me. I’m not ashamed of anything about me. It is what it is. I’m playing the cards I’ve been dealt and I’m doing my best with my hands and legs, what little there is left of them. It’s not hard, it’s just life.

After two hours, Paul had what he needed, Julie agreed, and we said our goodbyes. I felt like I’d been massaged.  Even the sweaty air kisses were fun. There’s something about posing for a camera that makes me feel good. I must be a lot like my late father, Floyd Crabtree. Amongst other things, he played sax and clarinet and sang for the big bands… until they went out of style. He started out in black face in a minstrel show as a little kid likely around 1920. He would have been 5. He was never afraid of the limelight or an audience. My sister, Kathie, is an actress and has a singing voice to die for. Her husband is a successful muralist. One of my nieces is modeling while studying in NYC. Another very talented niece is majoring in stage design. I guess you could say we’re a pretty out-there family.

I Googled Paul Alexander and was bowled over. He’s photographed a list of celebrities as long as your arm including Viggo Mortensen, Isabella Rossellini, Samuel L. Jackson, Forest Whittaker, B.B. King, Christopher Plummer, Daisy Fuentes, Johnny Depp and Matt Damon and, I’m told he works for Italian Vogue as well. The companies he’s worked for are everyday names like Coca-Cola, Nike and M.A.C. What a life he must lead. I still can’t quite believe he was here.

An e-mail thanking him was answered tonight and he promised a signed portrait so I’ll have something very nice to remember this day by. Thanks Julie and Paul. It was truly special.