Someone recently asked me if I had ever written about how we adapted to Lynn’s loss of function in his hands. I haven’t, but it’s a topic that might be helpful to some, so here goes.
Lynn’s loss of the use of his hands gradually progressed over time, I’m guessing maybe 3-4 years, with the loss being a generalized weakness initially to the point now that he has no strength to speak of in either hand; almost no function in his left hand/arm and minimal in his right hand/arm. I think he started noticing a decrease in responsiveness about the time he was diagnosed in 2006 because I came in one day to see him comparing the speed at which his fingers would move between the two hands. It. was that sight that made me realize that his weakness was not just in his legs. I insisted that he see a doctor because he no longer could insist it was just his sciatic nerve. As I told him, sciatic nerves do NOT affect shoulder, arm, or hand movement, so it was more likely to be a problem in his brain or upper spinal cord. He agreed, and so came his first MRI and the diagnosis of MS.
Initially, he was still able to do everything he had been doing. He would drop things more often and could not do anything needing strength except in the morning before his muscles wore out. However, before too long he was no longer able to play his guitar (he could play any type of guitar you put in his hands and play it well). He switched from playing guitar to playing drums. The sticks were thicker and easier to handle, but then that, too, had to stop when he started losing the sticks while playing. (Nothing like a drumstick flying out of your hand while playing for a praise band to let you know maybe you need to just sing.) It was heartbreaking for him to no longer be able to play the instruments he loved. I remember the day it was announced at church that he had decided to step down from playing in the praise band, the congregation gave him a standing ovation as a thank you to his courage to keep trying for as long as he did. It was very heartwarming but painful, too.
His job was initially as a builder. He could do carpentry and assemble all types of equipment to use in displays, and he ran a fabrication shop. It became too dangerous for him to use heavy-duty equipment, so he mainly did supervision. He also was very good at drafting but that, too, became arduous since it required fine motor movements that were difficult for him to control. Shortly thereafter, his shop was outsourced, and he was laid off. He tried to continue drafting, but his hands just would not cooperate.
He found he had trouble holding onto things. Eating was difficult. He spilled a lot and was embarrassed to go out to eat. At home, we put foam tubes on the handles of his eating utensils so that he had more surface to grasp. That helped a lot. They are just foam tubes with a hole in the middle. You can order them through disability assistance magazines and websites. We also got a clip-on half-ring that we put on his plates so he had something to push his food against. The only problem with the half-ring was finding plates that fit them. They were either too big or too small for the plates we had at home. Also, a lot of food gets left under and around the ring, which can be frustrating.
Once his fingers stopped working well enough to draft, he started writing. Initially, he used the one-finger hunt and peck method. It was effective but very slow. He would get very tired when trying to write long sentences, so typing his manuscripts was difficult. I tried to type for him when I could, but I just didn’t have the time available. Then we bought Dragon software, which was a big help but also had drawbacks. As he would become more and more tired at the end of each day, his speech would slur, and the way the software works is that it learns your speech pattern so it can type what you say. Well, the pattern of speech he had in the morning was nothing like the one he had in the afternoon, so he spent a lot of time cleaning up mistakes. He almost stopped writing because of that, but we hired a part-time assistant for him who types 2-3 days a week.
At this point in his MS progression, his touch is as light as a feather. If he has an itch, I have to scratch it because all he can do is rub it, which often makes it itch more. He has a back scratcher, and when he can manage to hold it, he can do some scratching, but he just can’t quite get the instrument pushed hard enough against his skin to give him relief. Of course, the problem with me scratching is knowing exactly where he needs relief and when I can stop. His loss of hand strength also makes pushing buttons a problem. He wears a rescue alert button but sometimes struggles to be able to push it. The same is true for his wheelchair buttons. Often I need to push the buttons for him so he can change the functionality on his power chair.
Being without the use of your hands can be both frustrating and frightening. Our hands do so much for us, and now he rarely cooperates. I have become his hands. I feed him. I have his power of attorney, so I can sign documents for him. I scratch his itches, wipe his eyes, hold his tissues to sneeze, and you name it; if hands are involved, someone else has to do it. However, after a while, we have adapted and it has just become second nature. It’s an automatic response for me to push buttons or move things for him so he can manage them on his own. Like everything else with MS, it’s just become a way of life. I’m his partner in life so my hands are his hands.
This article originally appeared on Multiplesclerosis.Net by Health-Union, LLC, and has been reposted with permission.
