A New FRS

I decided to do a new ALS Functional Rating Score. I scored a 22, where 40 is normal and zero is, well, zero. This score does not really represent a clear picture of what is happening to me until you see it in a longitudinal graph, or until you look at the segmentation over my whole body. It is then that a clearer picture of what my decline looks like.

I haven't done one of these in a long time. A slow decline allows me the luxury of ignoring this kind of score. I know how things are changing. I know where I am losing strength. I don't really need the FRS Score to determine anything. On the other hand, it does help me put my decline in perspective. It also helps me frame some of the coming decisions in my life.

First of all, that score of 22 is down from a 28 about 14 months ago. Losing 6 months in just over a year does ramp up my progression rate, yet I am still in the 90th percentile of ALS progression rates. It also reflects the reality of last year, with the significant, continuing loss of strength in my arms. My head and torso remain marginally impacted, unless you consider the near total loss of my lower core muscles. What that torso really reflects is the strength remaining in my breathing. I haven't done a breathing score lately, but I can tell my diaphragm strength is diminishing, ever so slowly.

The other thing this score shows is that from diagnosis, at about a 38, I have lost more than a third of my bodily strength, all in my legs and arms. I am almost halfway gone, yet I still have marginal strength in my arms, and plenty of strength in my head. It also paints an ugly picture of where I am going next. I will steadily move towards being a head, with a barely functional lump of a body beneath it. No hands, no arms, no legs, limited breathing, yet fully capable of expressing how it feels to die this way.

Maybe I should ignore my FRS Score for a while longer. There really is no good outcome from this.