Have List, Will Travel

Kala Godin avatar

by Kala Godin |

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It’s summertime, and that means holidays, road trips, camping, and hotels. Also, sunburns, mosquitoes, and probably dehydration. I’m kidding about the dehydration. My mom makes sure that I drink more water than she does. 

I’m mostly content to be in the house with the blessed air conditioning and a stack of good books. What can I say, I’m easily amused.

We stopped camping a while ago because it got to be way too hard on me. Instead, we opt for day trips and hotels. 

Trips of any kind are challenging for people with disabilities and their families. For the first time in their lives, my parents are going on an airplane. While on it, they are going to assess the possibility of getting me on one. 

From what I have heard from the SMA community, it’s going to be hard, if not impossible.

Road trips are easier, though they do take some planning. Where are we going and for how long? Where are the most accessible hotels, and do they have any wheelchair accessible rooms available? How long will we be driving?

Restroom visits are another consideration. My commode doesn’t fit in the vehicle with me. Instead, we have a Porta Potti. It is seriously the best if you can be manually transferred. I’m not kidding. You can stick it wherever you need it. Fortunately, I have great bladder control, and I can judge how much I can drink before I will need to go. 

I also have a sun allergy, so that means bringing along antihistamines, sunblock, and proper clothing that I can still move in.

The sun is a real issue when you can’t move. Plus, our chairs often have lots of black, leather-like material. What happens when you sit on sun-warmed black leather? You burn. Now I’m looking into how I can get a canopy for my chair.

My packing list also includes my BiPap, my own utensils, and straws.

I feel like I’m missing some things. Either way, I think you get it. When it comes to travel, I’m far from low maintenance. 

It’s a lot to consider. And no matter how much you prepare, it’s not a slam dunk until you arrive and see firsthand whether a location is accessible. Sometimes, you just have to go for it.


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.


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