When I was diagnosed, I lived in a very warm area in a second floor apartment. I was counseled to go home and make plans to be in a wheelchair. Wow.
My first neurologist told me the prevailing thinking at the time which was that we could determine how harsh the disease was going to progress by watching the first five years after diagnosis.
Time went on, and nothing about my health seemed to be progressing. Medications had started to become approved for MS, but they were only proven to be disease-modifying therapies, or DMTs, still no cure, and all required me to give myself shots.
This seemed to be a high cost for little return. And since nothing seemed to be happening to me health-wise, I took the risk that since I’d made it past the five years, I was out of the woods.
Although I was cautiously optimistic, I did move to an apartment on the first floor. Sometimes when it was unbearably warm, I’d come home after work and fill up the bathtub with cold water then spend the evening submerged in it.
And as the approved meds became more plentiful, I finally got a prescription and started to inject myself. Ouch!
When the market took a momentary dip in 2001, I found and bought a small, one-story fixer upper in a cooler area near the ocean. I was so excited to have bought my own first house and had dreams of fixing it up myself and staying through my retirement.
But the house was on a small lot, so when we needed more room the only place to go was up. I never gave my mobility a thought
Unfortunately, at about the same time I began to have mobility problems.
Another reminder, it seems that the prevailing thinking now is that you should start any of the DMTs as soon as possible after diagnosis.
Now I take a pill DMT by mouth once a day, telecommute to the office and spend most of my time on the second floor working.
I can still take the stairs standing up and holding on to the banisters. But on really exhausting days I need to scoot up and down on my butt. I joke that it’s part of my exercise routine!
The plan now is to makeover the downstairs bedroom into an office. And we constantly debate whether or not to get a stair lift. But as the stairs are the first thing you see when you come in the front door I have been very reluctant (embarrassed?) to get one.
So pride more than anything keeps me scooting.
When FDR was in a wheelchair in the White House he did regular fire drills where he scooted down the stairs to get out.
I say if it was good enough for him in the White House, it’s good enough for me!
- FDR’s Splendid Deception: The Moving Story of Roosevelt’s Massive Disability-And the Intense Efforts to Conceal It from the Public (1999) | book by Hugh Gregory Gallagher
- The Bucket List (2008) | DVD with M. Freeman, J. Nicholson
Links checked 09/24/2022