As most of you know I have been afflicted with that type of
MS called primary progressive. No relapses and remissions just a steady decline
in function. Usually starts in the legs and then sometimes follows in the arms
and other parts of the body. In my case it has advanced farther and faster than
typical. It has surprised my neurologist and of course myself.
My original prognosis was that I would have problems walking
(leg dragging and footdrop) but make it to my normal retirement years still
being able to work. That was in 2009. My normal retirement would be around 2025
or 26. This didn’t seem so bad. Walking with a cane – no problem I could do
that. Using a wheelchair – tougher but I can handle it. I worked in the
computer 95% of the time. I was an engineer so this seemed like a good future.
Unfortunately not much happens the way I expect.
As I mentioned earlier my MS progressed faster and further
than I ever expected. It is now February 2016. The practical progression and
steps that have been significant were as follows:
I started using a power chair because the distance is I
could walk with a cane were decreasing. I needed some way to get the chair in
and out of the house and get from one place to another. So I added ramps to my
house. I could still do quite a bit of stuff myself but became fatigued quite
quickly. The MS Society supplied me with a wheelchair lift that fit into the
back of my van. I had to modify my chair – the back would swing down but then
fit into my van quite easily. I could drive and then get out of the van, totter
back to the back, open the hatch and then lower the chair with the lift. That I
got in the chair and drove off the lift and then raise the lift back in the fan.
I didn’t have an automatic tailgate so I would have to get up and shut the
tailgate. Most of the time at work I would transfer from my wheelchair to my
desk chair. Work was not much different but my employer was very nice and set
me up in an office on the first floor. Stairs had been a problem for quite a
while.
This setup worked well for a quite a few years. Then I had
problems getting up out of the chair and walking very far. This made it
difficult in our current house. It was older and the bathroom doorway was very
small. It became very difficult to get in the bathroom. A few years earlier I
had started sleeping downstairs in the first floor bedroom because I couldn’t
climb the stairs to the second story anymore. We called in a modification
expert and he told us we really didn’t have much to work with their. So we
needed to find a different house.
(This
ends part one – I hope to continue this series until I get to what’s currently
going on)
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