Thursday, 27 October 2016


Some days there are too many things going on in my life to share, too many changes to talk about. There are so many good and bad things happening these days, each of them providing a view into my life, each of them very telling as to what it is like to live with ALS. Some are funny, some are sad, some are difficult; each of these could make up a blog post all on its own. So today, I am doing the short form; simple observations about a few things that have happened in the last 24 hours.

First off, I had a terrible night last night, one of the worst I have had in a very long time. I did not sleep well, my night a continuing collection of susurration within the guise of sleep. I had bad dreams, anxiety inducing dreams, so vivid I thought they were real, so impactful that the anxiety stayed with me after I awoke. My mind had trouble determining if the dream was a reality, so much so that I was shaking, quivering with whatever muscles could quiver, ready to cry or scream or something. Then my conscious mind cut in and, after a while, things settled down.

Then, things got better. The other day my commode chair broke; a bearing slid out of its housing causing the left wheel to fall off. Always the left side first, for me and everything about me with ALS. I wonder why? Regardless, the ALS Society replaced the chair yesterday. Lo and behold, this new chair is just a bit higher than my old commode chair, and, as such, fits neatly over the bidet seat of my toilet. Once again I can use the Toto Washlet seat! It is such a success when one thing solves two problems. I tried it this morning and it works just fine, except for a little sidesplash due to the inexact fit of one over the other. This is not an issue, not even a problem.

Third, this reminded me of how much I appreciate the ALS Society of Alberta, their many volunteers and the terrific staff. I don't say it as much as I should here in my blog, but without them my life would be a disaster. I have learned to make the Society my first call whenever I have a problem. They provide me with equipment I could not normally afford, with emotional support when I need it, and with tons of useful ideas about how to live with ALS.

Fourth, today I have friends coming over to do wine with me. I am going to make ribs, starting almost right now. I sent out a note the other day asking my group of friends if they would help me do a "deep clean" of my apartment in late November. Already some have replied offering help, not just on one day of the weekend, but on both days.

I am very fortunate. While I have some very bad days and nights, I have a great support network around me, wonderful family who help me both financially and emotionally, the ALS Society standing by to provide me with help and assistance, and so much more. Oh, and I figured out how to do the measurement, so that's looked after too!

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