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.

Tuesday, 11 December 2012

Status Update

Its been several months since I posted a status update, it probably little overdue ;-)

Strength and dexterity wise it's been a long slow downward progression from my arms and hands. My hands have become particularly quite weak and I have lost the opposition between my thumb and index finger, I can't really pinch anything anymore. I have some solutions for this for my Grab it pack using was called a snap Dragon buckle. I will post more about these later… Suffice to say, the snapdragon buckles are working great!

My arms and shoulders are also quite weak, I'm no longer able to lift my hands up over my head providing me some interesting challenges for things like washing my hair.

My legs, haven't really seen much change. I do have some balance issues which I say have not really changed, and I still fall down or trip once in a while because of them. They do however suffer from spasticity at night, making getting a restful night rather tricky… Add to that my dog in our bed… And a three-year-old who likes to come visit. It's odd, it only seems to happen at night. It lasts for about half an hour in the morning and then after that they pretty good for most of the day. Getting up out of chairs has become more difficult, but I do think that's more because I shoulders than anything else.

I'm still receiving weekly IVIG treatments, we did go up to 80 g six months to see if it made a difference. I didn't see any benefits so we went back to doing 40 g every week. It's kind and nice to be back on a shorter schedule as opposed to spending about eight hours after Nero. It was never too big of a deal, I always viewed it as my job ;-)

Yesterday I was back at the Neuro for another follow-up, and it looks like I might be in line for a clinical trial. It took a long time the line this up because my condition isn't classic ALS. There were some anomalies which makes me a less desirable candidate for trials. But it looks like there's one in line so, fingers crossed!

And hooray for experimental drugs!

I'll try to make it a point from time to time to post a little something about how the trial is going and if the drug is having any positive effects.

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