Over the last several years I've been dealing with various stages of disability thanks to ALS. My goal is to share solutions and review various products/tools/devices that I have found particularly helpful.

Wednesday, 23 May 2012

so where are we at today?

At this point in time I'm still reasonably functional in my abilities.

The biggest issue these days are my hands and arms. I have very little dexterity remaining in my hands and I'm unable to grip things efficiently. My shoulders and arms have both become quite weak and they can't raise my hands past my shoulders.

My balance and endurance however seems to be improving. I'm still a little wobbly when I walk and I haven't fallen in some time. Getting up from sitting on the floor is quite challenging. On occasion I do use a cane, not so much for mobility but more for resting against my stop and as a social cue to people around me.

I am presently receiving an intravenous immunoglobulin (IVIG) treatment at the Montréal Neuro once a week. I originally started this treatment back in September for a six-month trial, it didn't seem to be doing much of the time but when we stopped for a month in April began to show rapid degeneration. Since I went back on the treatment (with an elevated dose), things seem to be improving. But nothing in my hands and arms…

 IVIG is not typical for ALS patients, however in my case my EMG test showed some markers that I might respond to it.

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