Road tripping with muscular dystrophy: My 2012 Trip Notes


I spent the last three weeks traveling with some extended family members – particularly an aunt, uncle, and my two cousins. We spend about 48 hours in my van driving to-and-from Florida, stopping at many hotels and places along the way. We spent a couple weeks in Florida where the weather was hot and humid, but apparently better than what we left in Wisconsin.

If you’ve read my blog you know I am a big advocate for traveling despite a disability, so I thought I’d share some observations from my trip.

Hotel beds are getting softer
We stayed at mostly 3 and 4 star hotels (via Priceline bidding of course!) and it seemed like the mattresses and mattress toppers were much softer than usual. I initially thought that this might have been because I was physically weaker but my family thought the beds were really soft too. I would like to find a solution to this.

The wheelchair tie-downs in my van were easier than I expected
Usually I just drive my chair in and transfer to my driver’s seat and go. But since someone was actually going to be in my wheelchair we broke out the tie-downs. I thought this would be a pain to do every time we stopped but it turned out to be very fast once we got the routine together.

The amenities at non-luxury hotels are usually better and cheaper or free
I think the best hotel we stayed at during our trip was a Comfort Inn in Murfeesboro, TN. The room was huge and we had free parking, Internet, and breakfast. We also had a crazy-haired (think Something About Mary) and perky desk clerk that was straight out of a movie. The last hotel we stayed at was the Hyatt Regency in downtown Cincinnati. Parking was expensive, the room was small, the Internet was not free, and overall it made me realize that I would never pay full price for a Hyatt stay, ever. It’s just not worth it.

A can of WD-40 comes in handy
My wheelchair was squeaking even before we left so we sprayed some WD-40 on my anti-tip wheels and that solved the problem for just about the right amount of time. Then while down in Florida I picked up some sand and one of my front wheels started making noise too. Sprayed more and that solved the problem.

Accessible seating at concerts can be flexible if you run into the right people
I surprised my cousins with tickets to the Lady Antebellum concert in Atlanta. The tickets I bought were not wheelchair accessible, unfortunately. However, the ushers at the event found a spot for me and my aunt while my cousins sat in our ticketed seats. It worked out great!

Sometimes the best spot is in air conditioning with a nice view
I love being outside…in nice weather. But it was 90s and humid almost every day and with the sun this can be unbearable at times. So sometimes I elected to look out the window at the amazing ocean view from the condo and read instead of going down by the pool or to the beach. It was comfortable and required no sunscreen!

A manual wheelchair would have usefulness
There were a couple instances where it would have been nice to have a manual chair as a back-up. For example it would have been easier to get into my friends’ house without having to build a ramp from scratch (which still wasn’t a huge deal, just cumbersome). We didn’t have room in the car for my portable ramps, but I might make room next time. Also, I had some minor stress during the drive about “What happens if we need to get towed?” I have not dealt with that situation and wondered whether I’d be able to get transportation or have to transfer into a tow truck, etc. I could leave my power chair in the van and use the manual one if necessary.

A $20 office chair can make a difference
The bathrooms at the condo didn’t have wide enough doors to get my chair through. So instead of going down to the common-area bathrooms downstairs I bought a $20 rolling office chair from Walmart to get in/out of the bathroom. An inconvenience, yes, but it was good exercise and it’s not like I was going in there ten times a day.

Overall the entire trip went very smoothly. Very few of my “worries” ever materialized (as usual) and when minor things came up, they were easily remedied. It was great having family around to help out, although I think they’d probably say I was more of a smart ass than an inconvenience.




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