Caregiver Perspective: Give Me a Hand
Someone asked me recently 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 no longer could he 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 he 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 heart breaking 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, 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 rings 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 stopping working well enough to draft, he starting 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 its 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 by 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 that 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. 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 his rarely cooperate. 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, 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.
Do you celebrate your MS Anniversary?