Try to Behave

21 Aug

A few weeks ago The Squire asked our GP about the arthritis in his hands. That good man suggested the problem might be my husband’s CMT* attacking his upper extremities.

A trip to a neurologist, Dr. Thomas, who agreed that this was the problem. He was surprised that The Squire had not even gotten a diagnosis until he was in his mid-30s, and astounded that he was in as “great shape” as he is. Most people with CMT are in a wheelchair – or worse – by their 70s. They discussed the three-times-a-week trips to the gym; keep on keeping on, but try not to overdo it. While The Squire can prevent too much more deterioration, he can’t build muscle, because there really isn’t anything there to build on. The doctor didn’t think the hearing loss was related, as there are no muscles in the ear.

“Now, let’s take a look at those hands.” A nerve conduction test was scheduled and performed, and there is, not surprisingly, a good deal of weakness caused by the nerves dying. One thing the doctor pointed out was that The Squire should be very careful of where his hands are and what they are doing. “You may think you have an item in your hand, but drop it because you don’t have a firm grip on it. Also, when you reach for something, your hand may not go as far as your brain says it has, so be careful of that.” Twice, The Squire has grabbed for the egg turner and touched the side of the frying pan instead, and now it makes sense.

So – he came home after getting the results of the nerve conduction test, and relayed all of this good stuff to me. He wandered around a bit, and then came into the kitchen to clean a bag of fresh string beans I’d gotten from a friend in our knitting group. “I have to find a way to keep busy without messing up my hands and feet any worse than they are.”

Today, he went outside and took rocks out of the stream, tossed them into the cart, and took them away to toss into another spot. So much for not messing up has hands and feet.

Try to behave yourself.

*CMT –  Charcot-Marie-Tooth syndrome is named after the three doctors, Jean-Martin Charcot, Pierre Marie, and Howard Henry Tooth, who first clinically identified it. It is an hereditary condition which causes the nerves to die and the muscles atrophy. If it “kicks in” when you are a child, the bones “warp” to a certain extent to accommodate this, but if it begins in later years, the pain of the tendons pulling against the bones is so severe that some patients have a leg amputated, rather than endure the torment. There is no cure, only palliative care. The Squire has donated his body to the anatomy board.

3 Responses to “Try to Behave”

  1. Luanne August 23, 2019 at 4:07 am #

    I’m so sorry to hear he has such a terrible disease.

    • thisendoftheswamp August 24, 2019 at 1:50 pm #

      You are correct; it is a dreadful, painful thing to deal with. But he is, all things considered, very lucky. He will be 76 in November, and is still mobile and active.

      He doesn’t belong to any of the support groups, but there was a fellow at our church who had his foot amputated due to CMT, so he aware of how fortunate he is. It’s limiting, but probably no more so than just plain being in the last quarter of life.

      • Luanne August 25, 2019 at 4:54 pm #

        I am so glad that he has it more “mild,” but it still must be frightening and painful.

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