Traveling With a Neuromuscular Disease

As many people do, I enjoy traveling to different places. As I have grown older with DMD, traveling has become much more difficult and requires a lot more planning. One of the biggest challenges for me personally is I cannot really ride an airplane unless I’m sitting in First Class. The last time I rode an airplane was in 2010, but keep in mind I was much stronger then. The amount of lifting and maneuvering to get me on the plane wasn’t painful or anything. At this point, I cannot be lifted in that manner anymore so it isn’t feasible. That’s enough about airplanes though.

My purpose of this post is to highlight the difficulty of traveling by driving. My family used to have one long trip every year but they slowed down over the years as I started needing more assistance from different equipment. Before last summer, the last trip longer than 3-4 hours I had taken was to a cousin’s wedding in Nashville in 2012. I remember it well because it was a couple weeks after Superstorm Sandy had passed through the NJ/NY area. During that trip, the only equipment I needed was my manual wheelchair. I would have preferred my power wheelchair but then I would have needed a little more room that we did not have.

Fast-forward six years and I can no longer comfortably sit in my manual chair because it cannot tilt back. I also now sleep on a hospital bed with a unique mattress and use a BiPap machine for ventilation at night. There also is the fact that I cannot transfer without a lift. I also need to carry my Cough Assist machine and my shower chair. All that equipment has to fit into the van. Well everything besides the bed, I put the mattress on another bed because it can be folded after releasing all the air. If you have not heard of any of this equipment, you may think it does not seem like much but I will literally show the amount of room it all takes up.

As you can see, its impossible to take more people in one car. These pictures were from a trip I took to Ohio a couple weeks ago. I’m hoping to be able to take at least one trip every year. The good thing is that if I ever want to take a longer trip, there is the option of renting most of my equipment at the destination. I admit it can be difficult but going out of my normal daily routine to someplace new can be beneficial, not just for me but everyone.

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