message from Joan

I sat with (beside) Bill one day this week during a brief time that he was able to lie quietly in bed.  While I was holding his hand, I watched the muscles in his hand twitch and I wanted to scream….STOP!

Muscle twitching (fasiculations) are one of the signs of ALS.   When I googled muscle twitching months ago, it was what first made me think that he may have ALS.  I prayed that I was wrong.

 The twitching is a sign of a sick nerve which is firing without reason and trying to stimulate the muscle.  Eventually the nerve can’t fire and the muscle atrophies.  The twitching become kind of a constant torment to the ALS patient and his family.  They are relentless and when they stop in one area because the disease has done it’s damage there, you begin to notice it in another area.

Bill’s ALS attacked his chest and trunk muscles first but is now working on the arms and he is now very limited in what he can do with his arms.  His legs (Praise God) still work well enough for him to walk to the bathroom although that may be limited soon too because his breathing is so difficult. I try to get him to not get up and move around but you all know Sweet William…He doesn’t always listen.

Back to the muscles – I believe the reason he is having so much back pain (He calls it “discomfort”) is that he has lost almost all of the trunk support that he had.  You are able to see all of his ribs going down his back now and the spine too.  Bill has always been incredibly strong and it is hard to watch that change that has occurred.  Yesterday he asked me to cut a hole in some foam to hold his back away from the back of the chair.  (He continues to be very creative)

Prayer request now is like Lynette said…please provide comfort Lord.  Bill has agreed to trying to take the meds on a scheduled basis, so it looks like God is working on that prayer request.

Joan