Katja

 

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.

 

Mitch has a couple of great posts (with photos) about his home modifications at Enjoying the Ride:

 

Challenged Athletes FoundationThe 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.

 

Stylish, 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 rear embellishments are hard on your backside. Because you’re always seated, the front bunches up and the back slides away from your waist, leaving you with a constant fear that your undies are on display for everyone to see. The legs ride up, and even tall girl jeans leave an unattractive gap between hem and shoe. And that’s just the fit. When it takes 10 minutes for you to wriggle into a pair of jeans and you have to be lying down to do it, department store shopping just isn’t going to work.

There are a couple of companies that make jeans especially cut for wheelchair users, like USA Jeans and Rolling Elephants. Rolling Elephants’ line has a certain rugged/organic/crunchy granola appeal, but lacks anything conventionally stylish. USA Jeans seems to have a practical/functional philosophy also somewhat lacking in style.

Enter Indi. Indi does not cater to wheelchair users, but does offer custom made jeans based on measurements you give them. It took quite a while, and some outside help, but I now have a pair of jeans that fits correctly and comfortably around the waist, and (I hope) looks fairly decent.

If the jeans you receive don’t fit, you can return them (you pay postage) and Indi will re-do your order for nothing extra. If I had to do it over again, I would go to a tailor or seamstress and pay her to do the measurements. As it was, I measured myself, and what I thought was my best fitting pair of jeans.

The first pair Indi sent me was, like most jeans for walking people, way too long in the front and way too short in the back. I re-ordered, with rise adjustments. I immediately got an email from Indi asking if I didn’t want to reconsider the waist measurement, as that should change with changes in rise (here an experienced tailor would have been invaluable!). I re-measured my waist, emailed Indi, and waited for the second pair.

The second pair, while better, still wasn’t right. I almost settled for it, but thought If we can get this right, I’ll be able to buy jeans that fit whenever I want!. So I sent it back, requesting an even higher back rise and an even lower front rise. At this point the Indi pattern person got alarmed, and emailed me to confirm. Did I really want a 7″ front and 19″ back? She must have been envisioning a very unusual physique! I measured myself again (tailor, tailor, tailor). I guessed about the waist. I sent her an email.

The third pair was so close I almost cried. The back rise was now high enough, but the waist! Many inches too large. My self-measuring confidence was at an all time low. I took them to a tailor. She laughed and said, “You’ve got some gap-osis going on – you could fit your purse back there!” She pinned. She measured (4 7/8″ taken in!). She sewed.

My Indi jeans (aka Bonus Picture of my Butt)And two days later, voila! Jeans that fit around my butt and my waist. And a set of measurements, courtesy of my tailor, for the next time I order.

Obviously the Indi process isn’t foolproof, but for those who don’t have access to a dressmaker to make them jeans from scratch, it’s worth looking into. It’s pricey, but not as pricey as designer denim. Each repeat of the production process took between 3-4 weeks. But now that I know it’s possible to get jeans that fit, I’m going to have a hard time buying jeans off the rack that don’t.

 

Wheelchair TravelingWheelchairtraveling.com has published my Travel article as Accessible Travel Tips – check it out and the many other great articles on the site!

 

Shower Head

Photo credit: morguefile.com

After years of haphazard housecleaning chez Stokley, I hired housecleaners. Simply Clean’s Deena and Anthony came over this week to do the initial work. When they were done, Deena asked me to walk through the house with her so she could show me what had been done.

In the master bathroom, she blew me away by saying casually, “And I’m sorry, you’re probably going to have to get your husband to readjust the shower head; I didn’t think and used it to hose off the walls.”

I was blown away that an able-bodied person would even begin to realize that the fact that she had moved a shower head might inconvenience me. Pretty nice, right?

 
This entry is part 16 of 16 in the series Cycling the Dordogne 2011

I somehow managed to write a bazillion entries about our trip to France without posting a single actual handcycling photo, so here you go:

Crossing the Dordogne

Crossing the Dordogne River - this bridge is shared with cars (one way at a time)!

 
This entry is part 15 of 16 in the series Cycling the Dordogne 2011

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 to Vitrac. My husband and Allen weren’t interested in canoeing—too slow for them, maybe?—so it was just the women: Claudia, Rebecca, our guide Marie, and me. After a very short orientation that consisted basically of the canoe company guide Tom asking who had canoed before. We all had, so down the bank we went. I was carried by Tom and another canoe company employee. Tom took my wheelchair in his canoe. Claudia and I were together, and Rebecca and Marie had the third boat.

Rebecca & Marie followed by Tom, canoeing on the Dordogne

Rebecca & Marie followed by Tom, canoeing on the Dordogne


Tom with my wheelchair, canoeing on the Dordogne

Tom with my wheelchair, canoeing on the Dordogne


Me steering from behind, canoeing on the Dordogne

Me steering from behind, canoeing on the Dordogne


After lunch in La Roque Gageac; note empty ice cream glasses

After lunch in La Roque Gageac; note empty ice cream glasses


La Roque Gageac

La Roque Gageac

The river was broad and mostly placid, and we were headed downstream, so it was an easy and relaxing trip. Claudia in front was a strong paddler, so all I really had to do was steer. Cliffs rose on both sides, punctuated by stone bridges and fortified chateaux.

We pulled in at La Roque Gageac, yet another of les plus beaux villages de France. It was clearly a big tourist attraction.

We had lunch at a restaurant on the main street—it had a covered patio with tables across the street on the riverbank side. Our waiter was every inch the professional French waiter: middle-aged, slim, dark, constantly darting back and forth across the street to the restaurant. You knew that if he’d seen one tourist, he’d seen a million, yet he managed to keep from rolling his eyes at us.

The menu had a wide selection of interesting ice cream flavors. I urged Claudia to order dessert, but she looked doubtful. “It’s the cream,” she said. “I don’t want whipped cream out of a can.” When the waiter returned to take our dessert orders, she said, “Votre chantilly…?”

He responded immediately, punctuating each word with a stab of his pen. “De la maison, Madame! De la maison!”

“Bon,” Claudia responded, and ordered ice cream with whipped cream. She turned back to me, relieved. “Hausgemacht,” she murmured, “Good”.

“He knew what you were worried about,” I pointed out.

“Good thing, too—I didn’t know what I was going to say next!”

After lunch it was back on the bike, heading toward the Château de Beynac. The route was up, up, and more up. Marie was with me, and Enrico was driving the van; at some point he phoned to report, thrilled, that he’d found an accessible (pay) toilet, so we met him there and used it (yea! Enrico, I owe you 50 cents). More up, up, up, with the castle somehow always in view but always further away. Enrico phoned again to confirm that the castle was utterly inaccessible, so instead of continuing up, we turned off and biked back to Sarlat.

Overall, I was sorry not to have seen Beynac, or to have been able to sightsee in La Roque Gageac. But I enjoyed the canoeing tremendously, and was glad that my ancient Girl Scout canoeing skills seemed to have survived the decades.

 
This entry is part 14 of 16 in the series Cycling the Dordogne 2011

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 Enéa River. The mill is water powered, the grindstones are granite, the nut paste is heated in a cast iron cauldron over a wood fire, and pressed through canvas cloth to obtain the oil.

Walnut grindstone

The granite grindstone, reducing the walnut meat to a paste

Heating the walnut paste

Heating the walnut paste

Pressing out the oil

Pressing out the oil

One thing we noticed about the mill was how low the ceilings were. In addition, the drive system (pulleys and belts from the water wheel to the various mechanisms) was hung from the ceiling, reducing head room even more. Everyone who worked there seemed to be very short, but a taller inattentive visitor would be in danger of being scalped!

Les Jardins du Manoir d’Eyrignac

We also stopped at the gardens of Eyrignac, an homage to the art of topiary (or, as our fellow rider Rebecca said, “Very organized bushes”). Only a very small portion of the gardens could be reached by wheelchair, and that involved pushing over crushed gravel paths, so despite the reduced entrance price, for me it wasn’t really worth the effort.

 
This entry is part 13 of 16 in the series Cycling the Dordogne 2011

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

Ferme des CampagnesLa Ferme des Campagnes is a duck farm near Rocamadour. Here ducks are raised for 3 months and then force fed for 12 days prior to slaughter. They become foie gras, confit de canard, cassoulet and more. We observed the gavage (force feeding) and a video about the business. The farm (heavily dependent on tourists) was very accessible.

We also stopped in Souillac, where the able-bodied riders took a look at the cathedral (a sculptural and stained glass homage to St. Martin of Tours, as far as I could tell from the little flyer about it) and the Musée de l’Automate, a museum devoted to mechanical toys.

The bulk of the ride was along the Dordogne River. It was lovely—a nice wide road, very little vehicle traffic, shaded with large trees and cooled by river breezes. It was a cool and misty day anyway, and I was very comfortable (although I was informed by my husband that I was the only one who was happy that it wasn’t hotter). We turned away from the river shortly after passing through Veyrignac and went north on a rails-to-trails bike path for about 12 kilometers. Here the going was a little tougher; it was starting to rain, and the (paved) trail had a pronounced cross slope.

When we reached the end of the trail at the outskirts of Sarlat, I was wet and crabby. Tour leaders Enrico and Gwendal were waiting for me with the van, and offered to give me a lift the rest of the way, but some sort of stubborn pride had kicked in, and I declined. It was rush hour, and traffic was heavy, but my escorts (my husband and Enrico) just flanked me and we forced our way in through the cars. Some more uphills, some crazy downhills, a couple of traffic circles, and we were there. Another bike tour group was unloading at the hotel, and I got a little applause as I rolled into the courtyard.

Ferme des Campagnes

Credits