Wednesday, 29 April 2015

I Hurts Again Today

I am moving slowly this morning, slower than usual. I am breathing tentatively, shallowly, carefully. It seems that sometime yesterday or perhaps even during the night before, the muscles in my back, just below my still painful left shoulder, decided to cramp up. There are a lot of muscles in that area but if I were a betting man, my money would go on my Lattisimus Dorsi, aka "the lats".

Cramps are a part of the game with ALS. Sure, everyone gets them. I just get them more often, more persistently. No amount of massage or medication seems to make the cramping stop, except for some very serious anti-cramping medication which I don't have, and until this very moment have not needed. Up until now, cramping for me has been spasmatic, coming and going with neither rhyme nor reason. This one seems to be hanging on for a while, locking in place.

I've done nothing to injure this muscle, no heavy lifting or awkward twisting. The only thing I could possibly link to this painful situation is the change in my wheelchair, something which, thanks to the help of Michael, has been resolved. I am in my own chair once again. Yet, even with order restored to the wheelchair universe, this cramp persists.

For a painless disease, there is a heck of a lot of pain that goes with ALS. This is one of the types of pain which, while not directly related to ALS, is an outcome of the disease. Nobody knows for sure why these muscles cramp, what triggers them to tighten and then let go. Everyone with ALS will tell you it happens. For me, these cramps seem to act as a harbinger, starting up early in the muscle deterioration process. What this cramp is doing is letting me know that my chest wall muscles are now in the game. How long it will take is a bit of a crap shoot. My guess? A year or two.

Consensus is that loss of chest wall strength, which leads to loss of breathing capacity, is part of the final decline for most PALS. I've heard it said that once your FVC, your ventilation score, gets below 50%, your definitely in the final slide. Some have suggested it is the "six month marker". I don't know about all of that. What I know for sure is that most PALS die from breathing related complications, and lack of chest wall strength is a key to that loss of breath.

What really sucks is that it hurts so much along the way. I can move about, with twinges. I can breathe, shallowly, with twinges. It's best when I am still, laying down, a natural win for most PALS. The problem is, of course, I am not most PALS. Or maybe I am. I want to up, about, alive, active, doing something. Even if it hurts a bit. I suspect most PALS actually feel this way more often than not.

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