MS and My Hands

MS has taken a lot from me but the one thing that surprised and angered me the most is that MS has taken the use of my hands.

Multiple sclerosis can impact hand dexterity, coordination, and strength because of the effect it has on the central nervous system. This is another form of spasticity. I experience a tightening of the muscles in my forearm, which causes the hand and fingers to turn in. I often have a disabled look to my arm and hand. I call it my “dumb” limb. My fingers curl inward and I keep my arm close to my body. There has been a change to my arm’s natural resting position. I can no longer write or reliably button a button, and my typing has become more of the hunt and peck variety. It’s a dexterity and fine motor skills issue; my fingers do not move the way I want them to. It is actually hard NOT to automatically curl my hands. I have to consciously think about unbending them

I have difficulty with activities such as picking things up, maintaining a hold on items, and have trouble controlling eating utensils. I need help cutting my food into manageable pieces or I just spear the whole damn thing on my fork.

Other than basic motor skills, I have lost a lot the ability to do some of my favorite hobbies. I have always been a creative person. I loved being crafty: beading, creating journals/scrapbooks, keeping a book journal of books I’ve read along with writing down my favorite quotes. Now I have trouble holding a pen to write my name. I need oversized Sharpies to write a few words and I have to concentrate on each letter. My grip strength is poor (an OT told me it is about 25 pounds per hand – which she helpfully characterized as not enough to strangle a man!)

While there are some fixes -- I use speech-to-text software, have some grips that make holding silverware a bit easier, use an ergonomic mouse, and mostly rely on Sharpies to write – more and more, I feel trapped in a body that refuses to cooperate. 

MS and the little things

Sometimes when we talk about MS we talk about big things like mobility or treatments. But it’s the little things that seem to affect me the most.

The biggest little thing that irritates me is the loss of my dexterity and fine motor skills. It started with a little curling of the fingers on my left hand. I found my resting position was a balled hand, almost a fist. Every time I noticed this, I would straighten my fingers.

Then my right hand became affected. I found it increasingly difficult to use a computer keyboard or to write. Thankfully, my employer provided me with speech-to-text software that has helped as a work-around.

As my right hand grew increasingly weaker, the realization that I could no longer sign my name was distressing. I also came to find eating difficult with heavy silverware or fatigued hands and arms.

I'm a creative person and, unfortunately, MS is robbing me of my craft hobbies. I can no longer write in a journal or do more intricate bead-work, or even do coloring, which I found soothing before the adult coloring book fad took off. I continue to work at these things when I can but the fatigue and loss of fine motor skills means I can do these activities for only brief periods.

This infuriates me - especially as I can't understand why I can't manage such a simple operation which I managed effortlessly for the first part of my life. Now buttoning a button is an almost insurmountable task.

My employer graciously lets me work from home full time. This enables me to save energy getting ready for the day without a commute that can be exhausting but I miss daily face-to-face social interactions. I have to work at being alone without being lonely. I also tire quickly and thoroughly. I’ve learned I can handle one activity a day. My illness has forced me to adjust to a simpler life.

I have adapted to life in a wheelchair. But a little thing like a curb or a step stops me in my tracks. 

“It’s the little things.”