Out of my hands, CMT and me.

cmt handsI’m pretty sure by now my friends following this blog are beginning to get it. I was constantly in pain, completely beat down, and losing my sense of direction and interest in life. I was extremely dissatisfied and very depressed. What do you do in a car with no steering headed down a hill? You ride the brakes hard, which only serves to cause more damage to the car. This was my life at this point in time – a car without steering and me so desperately riding the brakes smoking hard, grinding them right down to the rotors. I was living on borrowed time with my legs and feet but I haven’t even begun to share the problems with my hands…

As the CMT community understands, our hands give us a very difficult time, too. My hands look funny just to be bluntly honest. The muscle tissue connecting my thumb to my hand has vanished. This is a CMT trait called “muscle wasting”, and becomes progressively worse with time. My fingers want to do that “claw” thing — draw into me when I lay my hands on a flat surface.

Often, the simplest daily routines become a nightmare. At age 16, I noticed small things others might not even notice but these incidents set me apart from all my buddies at school. I could no longer hold eating utensils correctly, with the fork or spoon in my hand, grasped gently with the thumb and index finger, palm facing toward me. Instead, the only way I could manipulate an eating utensil would be to awkwardly clutch the fork or spoon like a gardening trowel, so embarrassing, like a mannerless caveman. If I did not hold it like this, I would drop it. I’ve since attempted to modify my grasp of eating utensils, but sadly, this is what I can manage so I accept it. The fatigue in my hands is really horrible, especially in the colder temperatures. Try squeezing a tennis ball really hard, repeatedly for 3 minutes, as vigorously as you can. Now hold a fork properly. You might sense the constant state of fatigue in my hands every day.

Similar to the pervasive fatigue affecting my lower extremities, I suffer equally with my hands, and the muscle wasting progressively takes its toll on my physical well being as the years pass. Charcot Marie Tooth causes persistent numbness and tingling that never goes away. This numbness and tingling – more like a burning sensation, reminds me of when we were little kids and someone would grab your forearm with both hands, twisting the skin in two different directions at the same time as hard as they could. If you ever experienced this, you know it burns like crazy. Well, the pain, tingling and burning I experience constantly feels just like that, only some days are much worse than others, and it never stops. Cold temperatures intensify the situation. If my hands get cold, they take a lot of time to warm up and ache and burn uncontrollably, like a really bad sunburn from the inside out. On a good day – I merely experience a pins and needles sensation like when a limb has been “asleep” and is “waking” again.

Cold temperatures seem to be my worst enemy and limit me to doing things a man just enjoys doing. I love to hunt and fish but the issues with my hands make it very difficult. My friends know I will keep on doing what I love regardless of these problems and this pain. I am very skilled at appearing completely “normal” — just an average, ordinary guy. “Masking” uses a great amount of energy in and of itself, simply attempting to fool the world and appear “normal”. I am actually struggling in my own little world.

Then there is this: my hands will actually cease working from time to time. Absolutely stop working, unable to do simple and common everyday things such as holding a cup, grasping a TV remote, or retrieving a dropped coin from the floor. This actually causes me to constantly drop things. An item will literally slip from my grasp without me even realizing, since I cannot feel the item in the first place. Guys don’t think about how much time it takes to shower and dress for the day, they just do it. But guys with CMT think about it. Heck, guys with CMT have to schedule it, like an event. Scheduling the allotted extra time to accomplish simple tasks like brushing my teeth and combing my hair is a daily burden. Most guys do not even give these simple tasks a second thought.

Here is an opportunity to experience CMT hands for yourself. I encourage you to try this exercise and time it. Take off your shirt and jeans. Tape the fingers of both your hands together. Tape all of them, even taping your thumb to the other four fingers. No opposable thumbs in this exercise. If you really want to experience what I feel to the fullest, wrap your hands in saran wrap first to dull the sensation, or put on a pair of gloves, then tape. Start the timer. Grab your jeans and shirt. Hey, if I can do it, you can do it. Now, let me know when you’ve wiggled into those jeans and that shirt using your taped up hands. No worries. Plenty of time, here. No cheating now. Wait, you can’t leave the house like that – your fly open and shirt unbuttoned? You are not dressed yet! But — are you frustrated yet? Keep timing! You will eventually get your fly zipped and your shirt buttoned, your socks on and your shoes on and tied. Don’t want to be late for work… How you feeling? A little winded? Exhausted? Almost aerobic?

My hands are not taped together, you’ve pointed out. Agreed. But there is absolutely no sensation in my hands. Moreover, my thumbs fold into my palms, no longer opposable. Might as well be taped up just like I suggested you try, obviously making a simple task like getting dressed, something accomplished daily by a 4 year old, completing daunting to people with CMT.

Before you untape your hands, try picking up a small object like a coin or a screw you’ve dropped on the nice, flat floor, not carpet. I wonder if my wife knows how much money has been swept under the sofa in frustration. There must be a goldmine under there! Ok, now you can untape your hands. Just a day in the life…

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10 comments

  1. Beautifully put. Keep writing. We need more people with CMT telling it like it really is. Every pair of my slacks has velcro at the waist and a loop on the zipper and my hands are still too weak to grab the belt loops to pull them up. Every time I use the toilet, I need help getting my undies and slacks back up. I was sick with bronchitis recently, not going anywhere, and said, To hell with it, and split a knit skirt right up the back. I tuck it under me as I ride my scooter but no more undies, no more slacks, no more struggling with paralyzed thumbs and fingers that won’t open (until I have to be totally presentable to people). Going commando has its advantages. Good to have a male point of view. I look forward to more.

    1. Hi Linda – I miss your wonderful newsletters and the insight you so often provided. On the plus side the internet has given all of us a much larger community to connect with now in the CMT world, people like Tim and so many others. I like your commando idea! I’m not there yet but I do have to add in the cost of a seamstress adapting all my pants with slides and pulls. Tim does a wonderful job of describing the battle of shower and dress each day. Twice this week I have been ‘caught’ still in my nightie at silly hours, avoiding the basics until I absolutely have to go out. Carry on, Linda. Thanks for the many ways you’ve blessed my life. ❤

  2. I use to simply admire the way you fished! Always knowing where to catch the smallies, knowing what bait to throw and catching them when I was getting hung up in the trees. now I admire you for so much more. Me and the girls love visiting you in Fries, even since the bridge is fixed on our part of the river, we continue to go through Fries at least on time to stop and see you in your tackle shop. You are a special person. I’ll head up to the river soon to see you, I’ll pick up all that loose change you have on the floor and buy your lunch as long as you promise to keep teaching me how to fish. We love you man, Derek, Peyton and Anna from Winston Salem, NC.

  3. Hi. My name is Tom. There is one more thing about my hands I told my back surgeon. I have to bend over 3″ farther than you to reach the floor.

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