Mitch has a couple of great posts (with photos) about his home modifications at Enjoying the Ride: Home Improvements – #1 Home Improvements – Installment #2

Multiple sclerosis is a strange, no, bizarre, disease.
To review: for many (most) people, MS is a relapsing-remitting disease. Attacks (relapses), which can have a variety of symptoms, hang around for days, weeks or months, and then go away (remission). Remission may mean that the person is free of all symptoms of the attack, or some of the symptoms may remain, usually at a less troublesome level.
When we read about MS, we read about relapses lasting at least 24 hours and at most a month or two. We read about remission being a long term thing, years or even decades for many people.
At some point, though, for many people with relapsing-remitting MS, the symptoms of a relapse don’t go away. Perhaps there are no more relapses. Perhaps there are relapses, resulting in loss of function, and they don’t get better. This variation of the disease is called secondary progressive.
As a person who has been unable to walk without support for over 5 years, I fall squarely into the secondary progressive category. But something has changed.
Early in December, I noticed that my brief periods of standing up and talking a few steps around the kitchen (hanging on to counters) to do dishes or cook were getting longer and stronger. For a week or so, I experimented with more walking in the kitchen. Pretty soon I was making it across the hall and into the bedroom. A while after that, I was doing it without crutches.
Several weeks ago, I started taking some small trips (with crutches) out into the outside world (massage appointment, choir rehearsal). Just before Christmas, I went to work with crutches for the first time since 2005.
Aside from getting a puppy in November (which, if anything, should have sent me to bed for weeks), nothing has changed (medication, PT, etc) that I can attribute this to, so I’m saying it’s a remission. Since it’s lasted (and I’ve seen improvements) over a full month, I’m feeling cautiously optimistic. My husband, on the other hand, is feeling wildly optimistic—he’s talking about buying me a bicycle!
Random observations about being upright after all this time:
- I’d forgotten how tall I am, or at least what the world looks like from this height—it’s a re-working of perspective
- What am I supposed to carry my stuff in? I have to buy a purse now that I don’t have my trusty wheelchair bag there 24/7
- All my pants are too long
- Wait, what do you mean I can’t wear the 2.5 inch high pumps I bought because they look good and it doesn’t matter cause I use a wheelchair?
- When did my husband get shorter than me?
Things people have said to me:
- Did you have surgery?
- Are you on new medication?
- Have you started physio-therapy? (No, but does exercising count?)
- Wait, I didn’t recognize you!
- (Even weirder) Nothing at all
Now I have to worry about how my ass looks. At this point, it’s a pretty cool thing to have to worry about.
P.S. I am not a superstitious person, but I hope announcing this to the whole world (or at least the two dozen people who read this) doesn’t jinx the whole deal.
Disabled? Want Sports Equipment?The Challenged Athletes Foundation is now accepting grant applications. If you’re disabled and want to get into sports, check out what CAF funded last year, and apply for a grant. Grant applications are due on December 1st. |
Sometimes You Just Want a Pair of JeansStylish, well-fitting jeans are tough for anyone to find. By some estimates, the average women tries on over a dozen pairs before finding one that she’s willing to pay for (and then, if she’s me, she finds it still doesn’t fit very well). For women who use wheelchairs, the search is even harder. Pockets and [...] |
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Accessible Travel TipsWheelchairtraveling.com has published my Travel article as Accessible Travel Tips – check it out and the many other great articles on the site! |
Cycling the Dordogne 2011: EpilogueI somehow managed to write a bazillion entries about our trip to France without posting a single actual handcycling photo, so here you go: |
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Cycling the Dordogne 2011: The Things We Saw (Sunday)Last day of the tour. Sunday was another short riding day for me, but very fun. The intent was to ride from the hotel to Vitrac, about 9 km, where we would would canoe down the Dordogne to La Roque Gageac. Once again I skipped the steep climb out of Sarlat by taking the van [...] |
Cycling the Dordogne 2011: The Things We Saw (Saturday)Saturday was a free day with “optional bike ride”. Of our gung-ho group, I was the only one who noticed the “optional” keyword. Moulin de la Tour So everyone rode off and I got in the van and we drove to Moulin de la Tour, a 16th century walnut mill on the EnĂ©a River. The [...] |
Cycling the Dordogne 2011: The Things We Saw (Friday)Friday was probably my favorite cycling day (except for the rainy bit at the end). We bicycled from Rocamadour to Sarlat, and once we got to the river, it was pretty flat. But first, ducks! La Ferme des Campagnes La Ferme des Campagnes is a duck farm near Rocamadour. Here ducks are raised for 3 [...] |



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