Wednesday, 27 August 2014

Incremental Loss

I am in Vancouver, awake and mobile. I was up early this morning, off to do an interview at Global News BC. I have done a few interviews lately, enough so that my message is becoming consistent. It would appear that I am reasonably good at this, at telling my ALS story and the story of so many with this horrible disease. Yet even with all this attention there are those who still don't know what this disease is, or why it is such a scourge on those of us stricken.

Yesterday was a great example of the creeping incrementalism of ALS. We, David and I, drove from Calgary to Vancouver yesterday. I drove the first shift, until Golden. Then David took over until Kamloops where we had dinner. Then I took over as we headed down the Coquihalla Highway, breaking through the mountains and racing along side the Fraser River in towards Vancouver. We got here at about 10:00 PM, exhausted.

That exhaustion, for me, was complicated by more stomach troubles. I seem to be having lots of them lately, a persistent diarrhea requiring additional care and caution in the bathroom. Thank goodness I have lots of spare clothing to wear. Last night, however, we came to my Mom's place, an apartment where I cannot get into the bathroom, and I really needed that bathroom. So my friend David literally lifted my wheelchair around the corner of the bathroom and into the door, positioning it so I could make the transfer to the toilet.

Once complete that which was so urgent, I tried to wiggle back into my pants while sitting on the toilet. It's the only way to get this done. However with Mom's toilet and bathroom I was simply unable to get it done. So I got halfway there and asked David to help me back into my wheelchair. He then pulled my chair, with me on board, down the hall, once again lifting it around corners as needed. He maneuvered my chair into the bedroom where I would be sleeping, and where I planned on using the bed to finish the process of wriggling into my jeans.

It was then that I discovered that over the last few months I have diminished enough that I can no longer do a direct transfer onto the bed. I simply am no longer strong enough to get the vertical and sideways motion needed to move from chair to bed. David had to help me with that too.

This is what I know about ALS. The incremental losses eventually catch up to you; you just don't notice them in daily life because you adjust. It's not until a rare task comes along that you discover how much you have lost since the last time you tried it. It's a tough disease some days.

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