I’d like to preface this piece by giving a shout out to one of our very own columnists, Brianna Albers. Brianna shared her experience with Amtrak on SMA News Today last year and was incredibly kind in answering all of my questions and easing my nerves regarding my own excursion. Going “blindly” into a new situation can be nerve-wracking for us SMA folk who have to prepare for every situation that may arise. So, learning the ins and outs of traveling by train certainly helped in having a general idea of what to expect. Because Brianna’s advice was so helpful in preparing for my trip, I’m taking to my column to share my experiences with the Amtrak services.
I mentioned in one of my recent columns that there is always a first for everything when SMA is part of the picture. For the Silva family, our most recent “first” was taking a train to Orlando, Florida, from Providence, Rhode Island. This wasn’t a decision by choice. My family and I have traveled by airplane my entire life, and as difficult as it is to travel with an electric wheelchair (hoping the airlines don’t damage it) and other equipment, we have mastered the plan down to a science.
However, this time around, flying wasn’t an option for various health reasons. Traveling by train for 27 hours wasn’t our preferred method of travel either, but my brother and his wife were taking their son to Disney World for his first birthday (no big deal, right?) and really wanted us to be there. So, we purchased a wheelchair-accessible room on a sleeper car and didn’t look back.
The first leg of our trip extended from Providence to New York City, and for the most part, everything went smoothly. A train attendant did warn us, however, that things would become a bit rocky south of Washington, D.C. But, there was no turning back, and so we hopped on our sleeper car at Penn Station and off we went.
The room we had was about the size of my bathroom at home. It was tight and there was not much room available for the wheelchair, but just like living with SMA has taught us to do from the get-go, we improvised. I stuck my wheelchair halfway into our private bathroom, forcing us to leave the bathroom door open at all times, but it worked. We had one long sofa for the three of us to sit on, and fortunately, because I’m small, we were able to sit comfortably. At night, the sofa turned into a small bed and a top bunk was pulled down. Sleeping was a little cramped due to my BiPAP machine and pillows, so whoever had bottom bunk duty inevitably didn’t get much sleep. Even so, we made do with what we had.
As far as meal arrangements on our ride to Florida, it was difficult to get to our dining car because the sleeper cars between there and our room had narrow hallways (not wheelchair-friendly). This left us with two options: We could either have our train attendant bring us our meals or I could get off the train at a stop and then hop back on the dining car. To break up the monotony of the trip, we decided to get off then back on.
Pro tip: On our train ride home, our sleeper room was in the car right behind the dining car, so I was able to drive my wheelchair right to meals more easily. If you can, request to have this specific room. It makes life easier, and the dining car is part of the experience!
After a total amount of 54 hours there and back, my best attempt at giving you an honest recommendation to travel by train would be this: Traveling by train gives you the opportunity to see the country — something not many of us have the luxury to have. As a first-time passenger, I would say the experience was worth every second. But I wouldn’t do it again. Here’s why:
The man who warned us about the bumpy rails was absolutely right. For about 15 hours, we jerked from side-to-side. This complicated things like setting up my machines, personal care, and even eating. (I had to be very conscious when I ate because I was afraid a bump would cause me to choke.) I managed, but it was challenging and taxing on my body. And as a light sleeper, getting any form of rest was nearly impossible with all the bumps and jerks.
Even so, I’m so glad I went and have stories to tell and sights to have witnessed. Plus, if it weren’t for the train, I wouldn’t have ended up at the happiest place on earth. Stay tuned for my column on Disney World next week!
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.