28

I did an FRS assessment. The Functional Rating Score is a way to measure how my body is doing, how much weaker it is getting from ALS. The FRS is a self-measurement which posits 12 questions about things like eating, breathing, movement and body strength. A normal score is 48. I scored a 28.

This is a declining score. My FRS was relatively stable for about a year and  a half. Then, when the elevator went out in my building, my symptoms started getting ever so slightly worse. Since then, the decline has continued, with increasing weakness in my upper body. I am hoping that the decline continues at its slow pace. The changes are mostly only noticeable from within; I see them, but I can mask them well so that most other people don't see them.

There is one change that fits in the "who'd a thunk it" category. It has to do with the shape of my thighs and upper legs. I have lost all muscular ability in my thighs and upper legs. This started to happen a few years ago and became truly profound when I went into the wheelchair a couple of years ago. Since then, my leg muscles have lost all ability. With the loss of muscular strength came atrophy, the muscles slowly losing form and shape over time. My upper legs have gone from being round and strong to being oval and flabby. This has had one less than useful side effect, beyond the obvious.

When I first went into my wheelchair. the shape of my upper legs meant that the held a relatively flat angle at my knees. This made my legs a level platform, perfect for acting as a human carrying tray. I could put something on my lap and it would rest there quite happily as I moved about in my chair, over surfaces smooth and rough, even over sills and bumps. Over time, however, that shape has changed. Somehow my flat lap is no longer level, but tilted ever so slightly frontwards.

This change in body shape means that things I put on my lap now have a tendency to slide forwards, off of my lap and onto the ground. My laundry basket no longer sits as I go to the laundry. My suitcases no longer rest steadily as I transit a parking lot into the hotel front door. I am not sure when or how all of this happened, but things have changed. My lap is no longer functional.

It's part of the hidden changes of ALS. Nobody would think to notice that my lap no longer works as a stable platform, that I have to steady things as I carry them. I've taken to trying to adjust my legs, but even that doesn't help. My FRS is a 28. I no longer have a functional lap. That's ALS in action.