Changes Over Time

Sometimes all it takes is a bit of time between visits to a given location to realize that ALS has progressed. You get to see what you could do last time, versus what you can do this time. If the span of time is sufficient, the changes will be just enough to make you go "oh crap", but, with any luck, not enough to stop you in your tracks.

Right now I am in Victoria, at the Harbour Towers Hotel, in Room 415. This is the third, or perhaps fourth, time I have stayed in this room; once on a road trip with Mike, once on a solo visit to see Mary, Albert and the kids, once on a road trip with David, and now again on a solo visit to see Mary and family. The last time I was here was in August of last year, the 28th to be exact. David and I shared this room, and Dion crashed in with us for a night.

Last year I was just fine in the room. I didn't need the M-rail. The carpet on the floors was relatively easy, the shower was just fine. This year the story is a bit different. When I first got into the room, I looked at the bed and thought to myself "No problem." After all, I did it just last August. Then, when it came time to get into bed, I was faced with the sobering reality that I could not make the lift. I ended up calling one of the hotel staff to ask if he could get my M-rail. Once the rail was in place, I made it into bed, with only some slight problems.

Then there is the roll in shower. It's a small shower, about 3 foot square, with a seat, a wand, and a shower head. The control switch for the wand/shower head is up on the shower head itself. Fortunately I can still reach it. On the other hand the positioning in this small shower area along with t the transfer to the bench represented a significant challenge today. I did it; I don't want to do it again.

These changes, along with a couple of others, demonstrate clearly to me that, in spite of "looking great", my ALS is progressing. I am getting weaker. Things are becoming more difficult. That's just the way it is. I'm not angry about it. These changes are expected; ALS is a progressive disease. All I need to do is be sure I have the tools and help in order to keep going. I can do that.