Purposeful Movement

Purposeful movement; it's a term the medical community uses when evaluating the functioning of arms and legs for the ALS Functional Rating Scale. The FRS is used to evaluate the functional status of ALS patients and to compare status over time. It's a relatively objective way of determining where you are at with the disease, where you are likely to be headed with the disease, and how long it should take to get there.

The FRS measures 12 different area. Each area is assessed on a 0 - 4 where 4 is normal and 0 is, well, 0. When you add them up, you end up with a score out of 48 which is full functioning. If you want to know more about this scale and the parts of it, you can go to https://psg-mac43.ucsf.edu/als/ALSFRS.asp. It lists them all with the relevant evaluative criteria. There are lots of others and you can do your own score on some of them. Here is what mine looks like...

SPEECH - 4. Normal speech processes
SALIVATION - 2. moderately excessive saliva, may have minimal drooling
SWALLOWING - 4. Normal eating habits
HANDWRITING - 4. Normal
CUTTING FOOD AND HANDLING UTENSILS (patients without gastrostomy) - 4. Normal
DRESSING AND HYGEINE - 2. intermittent assitance or substitute methods
TURNING IN BED AND ADJUSTING BEDCLOTHES - 2. can turn alone or adjust sheets with great difficulty
WALKING - 1. non-ambulatory functional movement only ( or more likely - 0. no purposeful leg movement)
CLIMBING STAIRS - 0. cannot do
DYSPENA (shortness of breath) - 2. occurs with one more more:eating, bathing, dressing
ORTHOPNEA(shortness of breath (dyspnea) which occurs when lying flat) - 4. None
RESPIRATORY INSUFFICIENCY - 4. None

If you add them all up, I get a 33. When I started this five months ago, I got a 38. It would appear that I am right on track and smack in the middle of the normal regression range. In other words, to quote the neurologist who gave me a confirmed diagnosis of ALS, I have "plain, run of the mill, everyday, ordinary ALS".

The language used to assess walking (# 8) includes the term "no purposeful leg movement". You get a zero (0) for that one. That's me, or nearly me these days. I am near normal in almost all other areas not impacted by leg strength. But anything with legs, that's a problem.

It's that whole "purposeful" word that bothers me. My legs are soon to be purposeless. I think about purpose a lot these days. Now that I am no longer working, no longer a husband, no longer a contributor, I struggle with the idea of having a purpose. I wonder if my purpose is just to exist, just to be?

Having purpose in life is important, at least for me. I want to be purposeful. I want to live what remains of my life with intent, with meaning. I want it to count.