Friday, October 22, 2010

Vacationing with MS and the new medicine

See previous entry for the Mt. Rushmore moment. That was the highlight of the trip.

We're just back from vacation... Mt. Rushmore area...

Vacation with MS, or I suppose for most people with disabilities, is this mixed bag of stuff. I go somewhere fun or beautiful (or both) and love it, but at the same time have to figure out the logistics of everything - every bathroom, every walk, every interaction, every place, everyone. It's tiring and can get annoying - with Ampyra, things seemed easier. I didn't fall. Of course everyone is figuring out this stuff, but I'm going to bet people with disabilities have a bit more work. I mean, do most people, when entering a bathroom, hope there isn't a huge toilet paper dispenser right above the bar that could cause them to fall, and when it does happen, have to figure out how to avoid falling?

I know no one but my family on vacations, just like everyone else on vacaion, and people can act differently around me depending on who they are and what their background (combo of being around others with disabilities and the society in which they live) is.

With Ampyra, things changed a bit this time. We used to have to stop for me to walk briefly to prevent leg cramps. Now we have to stop more frequently and I walk much further each time. I plan how far I'll go, then start, and then decide to double or triple it. And I'm bent, but I'm working on being straighter, even when completely hunched. This trip I found myself, rather than going on short walks out and back to the car, actually walking into restaurants, gas stations, our hotel. Once my husband nicely (so he thought) parked the car closer to a hotel entrance and I informed him that no, park it further, darn it! :) And we have to take walker and wheelchair everywhere so I can walk and wheel. When I chose to walk this time, I made it - some pretty far distances. I use strategies, so there's another difference. Who else thinks as they head to their car "Break it up - make it to that line, then the next line, then the next. I WILL make it. Bring hips forward. Long steps. Kick it. Don't lean." This is all going constantly through my head. It's part of why I can get mentally exhausted.

Rest stops - can I make it in with the walker? Rephrase: I'll make it both ways using the walker - it just may take awhile. People may ask if I need help. With the walker, people seem to have a more "sympathetic" tone - with the wheelchair, it seems the tone for some reason puts me more with everyone else. It's just odd.

Hotel rooms - always interesting. At home I have my way of doing everything and it has a kind of rhythm to it. Toss that out when staying somewhere else. How's the bathroom set up? Where are the bars? Where is the shower and how is it set up? Best place for towels? Wheelchair or walker? Beds - how high - if too high, must use the walker. If too low must use the wheelchair. Is the room long enough to do some walking? Can I use something to do exercises?

Therapy - where and when? Can I find a bar where I can practice standing? Bet I looked silly doing my balance exercises in my chair at numerous tourist sites. I probably looked like I was doing a praise God ritual, along with some kind of Yoga. What IS that lady doing?!! Why doesn'r she sit back in her chair?

So, thoughts while traveling. Next week I take a plane. I hate to fly - I think it's the lack of control. And then I'll have a new hotel and a whole new set of circumstances.

After that, I think I'll be happy to be home for awhile.


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