Eight Pointless Months

I did another Functional Rating Score test online yesterday. I do one each month at around the same time of the month. This gives me a track of how I am doing. The Functional Rating Score, or FRS, measures your physical changes with ALS. It does not measure psychological or emotional change, something that the medical community is more and more coming to recognize as an important part of this illness.

The online test is subject to variation, as the assessments are patient based and subjective, however I am consistently impressed with its correlation to the clinical assessment of FRS done by the neurologist whenever I go to the ALS clinic. When I was first diagnosed my clinical FRS was 40 and my FRS in the online test was 38. In my last clinic visit earlier this month my FRS was rated at 32 and the one I did yesterday as 33. It's not perfect but it's pretty damn close.

It's also an important point to make that my FRS is not a predictor; it is simply a measurement of where I am at a given point in time. There is certainly a trend path which all ALS patients follow and that path is almost invariably downward. The FRS is what they use to measure the rate of downward in the past. The other challenge, particularly with the online FRS, is that it is a fairly coarse measure, looking at rough approximations of key points along the ALS pathway. The finer points, those that might indicate progression or change, can only be seen by the patient in daily life, or by the neurologist. For example there is no rating on the FRS for increased clumsiness, per se; there are questions around handling of utensils, cutting food and dressing which would cover this but no direct questions about it.

What has been interesting to me, and my neurologist, has been the relative stability of my FRS since last May. When diagnosed, I had an FRS of 38 using the online tool. My FRS fell a bit faster than the one point a month that is a "typical" progression rate. In May of last year, my online FRS rating was 30, a full 8 point drop in less than 7 months. Things were not looking good.

Then something happened, or rather something didn't happen. The expected progression into my upper body did not immediately appear. In fact the progression seemed to slow dramatically. While there have most certainly been changes over the last 8 months, one could look at them more as consolidation of pre-existing gains by the disease as opposed to significant changes in my upper body. There are things happening, but they are more in my legs; my arms are showing early signs, but they are only measurable at a clinical level as opposed to an observational, subjective level.

My FRS score was 32 yesterday. That's essentially the same as it was last May. It's been 8 months, like this; 8 pointless months. In this case, that is a good thing.