I Am Failing

When I was diagnosed with ALS, my Functional Rating Score, an assessment which calculates the impact and progression of ALS through my body, was at 40. In the subsequent 8 months, my FRS fell from 40 to 30, a rapid progression, but not abnormally rapid. In fact the most common "steady" progression for pALS is about one point a month.

Then, in the spring of 2013, my FRS stabilized. It stayed at 30 for the longest time. This was not a result ALS suspending itself, nor any sort of temporary remission. It's because the disease had done enough to me to make the change visible. Now it was working on smaller increments, smaller things, less visible things. In fact I noticed changes in my arms during this period, change small enough that they did not impact my FRs.

Then, at about the same time as I went into hospital this summer with Urosepsis, my FRS score started to decline once again. It's not that my progression started once again; it had never stopped. It's not that it sped up; it simply reached a point where the losses had begun to affect my functioning. My arms had weakened to the point where I was impacted in my ability to do things.

Since last August, my FRS has gone from 30 to 26, a drop of one point per month. I am not surprised at this. My doctors had said that as went my legs, so would my arms go. I am disappointed. I had hoped it would take longer. ALS doesn't seem to worry to much about what I want; it just goes on with what it does regardless of what I do, or want it to do.

This drop in functioning primarily revolves around strength, my ability to lift, pull, hold, stretch. I can no longer pick up things I could once easily pick up. I can no longer push myself for as long or as far in my wheelchair. Slopes which were once possible are now impossible without help. Transfers are becoming increasingly difficult and tiring.

It's also affecting my breathing now. I find myself short of breath in almost any conversation. The least effort makes for heavy breathing. My core muscles have been going slowly for a while. They are now leaving me at a rate fast enough for it to affect my functioning, my FRS. My scores are falling; I am failing.