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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, 4 September 2013

Status Report

As you've probably noticed, I didn't get around to posting anything last month. Life has been… Shall we say "crazy" the last while. We've had some renovations going on the home (cosmetic, not to disability related), family holidays and I've been fortunate enough to have family come across the country to help. All the while, my condition is ever so slowly degrading. But to that in a moment.

Between two and three months ago, I seem to start losing more function. I'm unsure as to whether or not I'm degenerating more quickly or if it's simply that my body is simultaneously passing a multiple tipping points which is preventing me from being able to do things, like easily scratch my nose. In any case because of this I decided that it was time to take a bit of a gamble and participate in the GSK clinical trial at the Montréal Neuro, and participation required me to stop my IVIG treatments. As I seem to be getting worse anyway, the only question is the rate.

There is no doubt that in my mind that the IVIG was slowing down the progression for me. However I was still getting worse. So the logic was simple… option A: stay where I am, I know the result… Option B: Go off of the IVIG treatment for the trial, if I get the placebo then same result as staying on IVIG (possibly a little faster). If I get the drug, well then there's a chance…

Ah yes, Game theory. My old decision-making friend.

So I've been without my IVIG for a little more than two months now and while it's too early to tell if I'm on a placebo or not, things have gotten progressively more difficult for me. But I don't think any faster than it was while on IVIG for the last few months.

If I were to put a number on it I'd say I've got maybe 15% function left in my hands and arms. I can still move them and do a few things. But not much. I'm no longer able to dress myself and require assistance with hygiene. I can barely brush my own teeth, let alone wash myself.

My legs however are still quite strong. My little guy likes to sit on my feet (he weighs about 40 pounds) and I can lift them up in the air and bouncing up and down for quite some time. My balance however is shot.

You wouldn't realize it but your arms provides an unbelievable amount of balance. As I have very little function left I tend to fall down. Heck, if you've been following my twitter (@Cpt_C_Pike) you will see that just this weekend I did a 12 hour tour of the emergency room with a mild concussion…

Consequently I'm spending a lot more time sitting down and in a wheelchair.

By rehab facility provided me with what I call "wheels 1.0" which is the manual wheelchair that we used our holidays. While this is comfortable enough for me and it did allow us to go on our holidays. It's an awful lot of work for my wife to push us around. (My little guy likes to sit on my lap).

We also have a motorized wheelchair on order… A.k.a. "wheels 2.0". They gave me a choice of colors, so I chose fire engine red which will of course make it go faster ;-) More on that after I receive it.

Fortunately, I'm having no difficulty eating or swallowing. Just delivering the food into my face hole. I am however starting to notice changes in my ability to speak. My speech pathologist has pointed out that they are not that noticeable to others yet. And that said, I am finding I'm starting to have to concentrate more and speak more slowly as it easier for me to trip over syllables or stutter. Particularly when I'm tired.

My speech pathologist said that the perceptible differences over the course of about six months are quite small. On her rating scheme, she said went from a 7.5 to a 7. And that she's even hesitant downgrade me the half a point. The changes are mostly perceptible on my end at this point. Nonetheless, I am happy that I have my voice bank done.

So that's kind of where we are at right now. All and all, slow progression which is a good thing. Keeping my fingers crossed for the clinical trial. Doing my best to keep my chin up and a smile on!

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