Thursday, 13 December 2012

Patients and Patience

Yesterday at the ALS Clinic was a marathon, filled with dozens of ALS professionals. I had my breathing measured; they said I was at 90% capacity, well within the normal range. That "normal" range is anywhere from 80% to 110%. Then there was the arterial blood gases test, which meant getting blood from an artery, not a vein. The artery that works best is deep inside the wrist, so that took a bit.

After the first medical incursions came meetings with the occupational therapists (two of them). The therapy team determined that I might want to get a power wheelchair; it isn't urgent but having it for longer excursions would help avoid tiring me out. They are also helping me get a few other things (like a shower seat and such) to help make life easier for me. One thing they did encourage me to do is to use the wheelchair more. Walking will not strengthen my legs; they are done. All that walking does is exhaust any strength I have in my legs, taking that strength away from other things I might be doing.

It makes more sense for me to strengthen my upper body. According to the neurologists (there were two of them for this visit) I am showing some loss of strength in my hands. It's not much loss and may not be related to ALS; it is something they want to track. But my arms are in good shape as are my shoulders and neck.

Then they brought in the next physio-therapist and we talked about getting me into an exercise program and perhaps some sort of gym program. We also talked about yoga and meditation. It would appear I have gained five pounds over the last month, so eating whatever I want may not be my best immediate strategy.

Finally there was the counseling psychologist. We talked about how I would live and the importance of living in the moment. Apparently saving money for my retirement is not a good plan these days. We talked about government pensions and how long I should work. I think I want to work for a while yet, but how long will depend entirely on my state of mind and physical capabilities.

There was an awful lot more going on, too much for this space with too many other people to remember. After four hours, I was ready to leave. Thank goodness Peter was with me.


  1. Indeed my dear it was a marathon. I cried when you wrote that your legs were done. I wish I was as brave as you are. I love you so much. Thankfully Peter was with you.

  2. Think about this, Mom. If I had been in a horrible car accident and was rendered a parapalegic, would you cry at the loss of my legs or cry for joy that I was still living?

    I am happy to be alive.

  3. I hope this doesn't come out trite, Richard.
    But I have often reminded myself when I am faced with the loss of something: don't grieve that you lost it, be grateful for all the time you had it.
    Whether it is health, relationships, situations, jobs, etc. If it was a good thing, of course, greedy folks that we are we want it forever and ever and more please.
    But really: comes, goes, much, less, plenty, want, joyful, sorrow. The human condition.. Life, glorious life... leading to life > everlasting life!
    It's just that whole transition thing from here to there, eh?
    I'm enjoying your blog, buddy!