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.

9 Responses

  1. What the heck is a KOBO?

    I solved the bed making dilemma, I don’t :) Doesn’t bother me though. The one thing I hate doing is cleaning the bathroom, holding a sponge is awkward. For scubbing pots and pans that don’t go in the dishwasher I found round nylon scrubbies that are attached to plastic with a big knob on it, they are great and I can grip them pretty well!

  2. I have several items from Pampered Chef that have been very useful in the kitchen. Linda mentioned several of the above, but I love the jar opener. It fits all sizes of jars, has a large handle, and has never failed to open a jar.

    I also love my Kindle. I bought a soft fabric case for it which makes it easier to hold. I use it a lot, especially when I’m traveling.

    I don’t have a smart phone, but I’m considering buying a Kindle Fire or the new Google tablet. They seem to be a lot easier to use with my funky fingers!

  3. What a remarkably sensitive sharing column, so helpful. Great work, kiddo!

  4. Wonderful article Linda. Thanks.

  5. Linda, you are an inspiration to all of us.

    My contribution to the list is that I found a phone that works for my hands. Its the Samsung Galaxcy Note 2. It is clumsy and big, but everything is big, so I finaly have a phone I can use with my clumsy fingers. Phone is important for me, because I find it easier to speak than to type. I also found that the stylus of the Note 2 has no friction at the tip, and I can draw and write with it.

  6. This might seem off topic, but being around other people with hand issues is useful, like quadriplegics. Watching how they do things helps me come up with ideas for myself. I know a quadriplegic who has one of those gigantic (heavy!) professional cameras, and he uses a remote switch in his mouth to trigger it. Pretty ingenious!

  7. I’m not entirely convinced that typing is detrimental to the fingers – I’ve been touch typing for almost thirty years, virtually all day, every day, and consequently, my fingers are almost unaffected. Dexterity is normal – strength is crap, bottles and jars are difficult,but there are plenty of gadgets out there to help with that – and so is sensation. Overwork atrophy has been pretty much discounted as reaslistically happening by most of the medical profession. Use it or lose it, is much more relevant.

    However, once the fingers have gone, I know life is very, very difficult. My friend has fingers who look even more limp and lifeless than LInda’s – but she finds the most amazing ways of doing things. Her husband died a couple of years ago, and she realised that she’d have to find a way to put her BiPAP ventilator on, on her own. The solution was only using the nose mask if she’s on her own, and she holds the bottom of the mask in her lips, puts both hands into the straps, so they are across the back of her hands, and just pulls it over her head – the velcro is left untouched. She holds a pen or a fork by using a specially made splint – like a standard leather wrist splint, but it has a tube of leather sewn into the palm. She picks up a pen with the palms of both hands, and lifts it to her mouth, then pushes it, with her mouth, into the tube – she then can write using her whole hand to guide the pen. A fork won’t fit in the tube, but the splint provide support to her wrist, and she kind of winds the fork through her fingers – one over, two under – again, using her mouth.

    Another issue I know many women have problems with is putting on a bra – Lisa doesn’t undo hers, but wriggles it over her head and by pushing her hands through the straps, using the backs of her hands, she manages to get it on successfully. As a full-time wheelchair user, she also struggles with pulling up pants and trousers, but just wriggles them up by rocking from side to side. She also wears long tops, so if they get twisted and she really can’t pull them up – she just doesn’t bother, but makes sure the long top preserves her modesty!

    She can’t squeeze toothpaste onto a toothbrush, but with the palms of her hands, squeezes it directly into her mouth onto her teeth, then drops the tube and picks up the brush. She deals with tablets in much the same way, uses her mouth and teeth to push them out of the blister pack straight into her mouth, and washes them down. But there are gadgets out there to push tablets out of blisters, we sell one at CMT United Kingdom (www.cmt.org.uk/shop.php)

    Watching her chop an onion with the knife in the palm of her hands is truly scary, but she can do it. Potatoes are never peeled, always cooked in their skins, the kettle is filled with a jug of water that she hooks over the back of her hand, and pours backwards. However, she has been badly burned in the past when she knocked a kettle of boiling water down her body – because of sitting all the time, it hit her just below her breasts, went right down the body and down her right leg to her toes – but with her impaired sensation over most of her body, it wasn’t quite as painful as you might imagine – bad enough though, and with dressings over most of her body and leg, she relied even more heavily than usual on her carers – I watched her, via Skype/Ipad, struggling for an hour to get dressed, and could do nothing to help (we live 160 miles apart) but encourage and take the mickey!

    She uses an iphone and an ipad extensively – a quadriplegic friend of hers uses an ipad clamped to her wheelchair that has software on it for environmental controls – she can switch on lights, answer the phone, open the door, television on/off – all sorts!

    So, no matter how severely the hands are affected, there is always a technique, gadget or method to do most things.

    I think I’ve waffled on more than enough!!!

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