Wednesday, 18 May 2016

More Changes

Meetings with my Occupational Therapist, or my Physical Therapist for that matter, are never a happy occasion. They inevitably occur because of a recent change or soon to be expected change in my ability or condition. When the PT visits, it's because my muscles are beginning to lose muscle tone and strength sufficient to need Range of Motion or other exercises. When the OT visits, it's because the weakness has become sufficiently profound as to need some form of mechanical solution to a physical problem.

A few months ago the PT came to see me about ROM exercises for my arms. Today the OT came to see me because my arms have weakened enough that we have to make changes in my apartment and equipment to allow me to continue to live independently, while losing arm strength even further. This assessment was driven by two basic challenges in transferring which are rapidly becoming untenable; transferring on and off the toilet, and transferring on and off the couch. I am rapidly becoming less and less able to do either.

The solution to the toilet involves getting a self-propelled commode chair. It's like a wheelchair, but with a toilet seat where you would normally find a regular seat. It's designed to wheel over top of the toilet seat, thus allowing me to go to the toilet, while sitting low enough to allow me to continue to use my beloved Toto Washlet Toilet Seat. I can even take it into the shower, so I would no longer transfer to and from my shower bench, but instead would just stay in the chair to have the shower. This would eliminate another transfer from my life, always a good thing.

The couch problem is both more difficult, and somewhat more "temporary". I can still transfer to and from my couch, just as I can still transfer to and from my toilet. It's becoming more difficult, in both cases. So I need a way to get me from my wheelchair to my couch. I thought a portable lift might work, but the OT suggested putting a ceiling track in place above my couch, and using the lift from the bedroom. This works on multiple levels; it means no additional equipment for me to manage, it means using the existing lift system more efficiently since I don't need it in the bedroom very often, and it means being able to lift in and out of my power chair as well as my manual chair.

The "temporary" part is my internal suspicion that I would lose the ability to get on my couch altogether, so at some point I wouldn't need anything. That suspicion was wrapped up in the knowledge that I would have to transfer to my PWC permanently once my arms get really weak; I won't be strong enough to push myself at some point. Transferring from the PWC to the couch is all but impossible, and the PWC will lean back and allow me to rest my back, so I don't really "need" to be on the couch. But I "want" to continue to sit on my couch.

The ceiling track and lift will allow me to get in and out of both my manual and power chairs. This means I can continue to use my couch long after I would have without the track. I like this idea a lot. It also means getting on and off the couch will be relatively less exhausting, so if I forget something like the corkscrew, as I did last night, I won't have to exhaust myself and give up, as I did last night, in trying to get it.

Both of these changes, and solutions, reflect the ever changing nature of my condition, and ALS. Life is a moving target for everyone, just a bit moreso for me. Changes that allow me to continue to live independently are good; the other changes generally not so much.


  1. 2 corkscrews, one in the kitchen, one in the living room. Or, a corkscrew in pocket.

    I'm not encouraging anyone to drink, but I was surprised as an occasional JD and Coke drinker, that a glass of wine is so small. I don't see why a bottle of wine is considered a lot. You go to a restaurant and a couple glasses of wine and it's like the whole bottle. At least that's how I see it.