Thursday, 28 February 2013


It's happening! The sun is rising early enough for me to see if when I have my coffee, and creeping north enough so that the glaring ball glows right in my eyes. It's bright enough that I have to shift to avoid the blinding. Spring is coming and the sun is announcing its pending arrival. It's a new day, and a new start.

Yesterday was clinic day. I will be assessed every few months at this stage of my disease. Once the disease accelerates I will be assessed monthly. Towards the end I will need daily and then constant medical care. This assessment was no surprise, just your typical good news, bad news story. The good news is that the ALS is not accelerating; it is moving exactly as expected. The bad news is that the ALS is not decelerating; it is moving exactly as expected.

The weakness in my arms is probably not an early indicator of onset in the next area. It is more likely related to being in my wheelchair. I use my arms a whole lot more these days. This, combined with my general tiredness and exhaustion, means my arms are just plain wore out. They need more rest than before. So that is sort of good news.

The "thickness" in my throat and tiredness when I speak is "interesting" and "we want to check that again in a few months". In other words it might be something or it might not. From an inspection perspective the neurologist was unable to tell a lot. He said "it's a small enough change that we cannot measure it, but if you think it is something, it probably is something." When I asked him about loss of speech he said "you will still be talking this time next year". For PALS (People with ALS) that is about as good as it gets.

I spent a good deal of time with the counseling psychologist. The trouble I am having with words, my general exhaustion and loss of focus; these are stress related in the opinion of both the neurologist and the psychologist. Stress is bad; I need to reduce my stress level. We also talked about suicide. Interestingly enough, the ALS psychologists are taught not to discourage suicide, but instead to focus on quality of life and reasons for living. I have both.

Today the sun is shining in my window. Today I am mobile. Today I can enjoy food, wine, friends, family, love and laughter. I want to get to know my children better, to be the kind of father they remember with pride and a warm heart. I want to get to know my grandchildren, to hear them talk to me, to read them a book, to take them fishing. I want to fall in love again, to meet someone who will love me back.

Today I have good quality of life. Today I have something to live for. Today I will live for today.

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