At the time of writing this, I’m sitting in my hotel room for the 2018 Annual Cure SMA Conference. My caregiver and his girlfriend are here with me, my parents are at dinner enjoying themselves, and this room is both accessible and spacious.
Every now and then, vacations do turn out great for my family and me.
Traveling when you have SMA is always a risk. There’s the drive, transporting medical equipment, coordinating with caregivers, and once all is said and done there’s still the uncertainty of whether or not the hotel will be truly accessible. Roll-in showers and basic wheelchair accessibility are essential factors for me, but equally important is how wide the room is.
Over the years of traveling around the United States for conferences and summer vacations, I’ve stayed in plenty of hotel rooms that have met the basic accommodations my family and I had requested, but were so tight and difficult to maneuver around that they may as well have been inaccessible. Imagine for a moment having to have your dad transfer you from your bed to your wheelchair, but the bed is right next to one wall and about 2 feet away from another one.
Yeah, it’s a pain.
Fortunately, though, this trip has been great so far in terms of room accessibility. We stopped first in Nashville, Tennessee, at an Embassy Suites. Notice how much space there is in the main bedroom and at the bathroom exit. This made transfers significantly easier, and I had space to move my chair around while I was up.
Likewise, the Hilton here in Dallas where the conference is being held is fantastic. The room that Randy, his girlfriend Danielle, and I are staying in has plenty of room for all three of us, is widely accessible, and we’ve already filled it with essentials like snacks and sodas. Transfers went incredibly smooth this morning, and there are enough outlets here for my wheelchair, BiPAP machine, and all of my medical equipment.
As I’ve written previously and discussed in my podcasts, accessibility goes beyond the basic ADA requirements. Accessibility means being able to safely navigate a hotel room without having to worry about bumping into a wall. A tight, confined hotel room can be a real damper on a vacation, and it’s a problem that I’ve almost come to expect. My parents and I have had to deal with narrow spaces and barely inaccessible bathrooms so many times in the past that we’ve just learned to suck it up.
When a room does turn out to be wide and easy to maneuver in, however, it’s a huge relief for all of us. I look forward to treasuring every minute of this trip, and I’m beyond thankful for my parents and my caregiver for making this all possible. Stay tuned next week for a detailed recap of the conference and the entire trip. Right now, though, I’m pretty exhausted from an all-day advisory board meeting with Biogen, and I’m ready to head downstairs and devour whatever they have in the hotel restaurant.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.