My Top Tips for Traveling With Duchenne MD
The last time I traveled on my own without my parents was last May, when my friends and I went to Hawaii. While my parents did come with us, they kept to the hotel room and let us explore.
Being away from the comfort of home made me realize I needed help with a lot due to my physical weakness, a result of Duchenne muscular dystrophy. In my apartment, for example, the back of my bed lifts to make it easier to get up and go to the bathroom on my own. But when I’m on the road and sleeping in unfamiliar hotel beds, I need to call someone to get me up.
The idea of needing more help came up again a few weekends ago when I traveled to Seattle for a friend’s wedding. Ironically, it was one of the same friends who went with me to Hawaii who was getting hitched.
My power chair usually assists me in standing up, but when I’m using my smaller, more durable travel chair, I need someone to help me rise every time. That was the case recently, and it tired me out to the point where I was falling asleep at the table. While my fatigue frustrated me, it also elucidated where my traveling can become more efficient and where I can let people help me out. Whenever I encounter a wall, I know there’s either a way through, over, or around it.
Communication is one tool that will allow me to continue to see the places on my bucket list. Usually, we think about how our actions speak louder than words, but in my case, words speak louder than actions. I can’t do anything unless I first explain to someone what I need, where to lift me from, or what to grab out of my bag.
The only problem is sometimes I don’t want to speak. Imagine asking someone to do almost every physical action for you. It can be mentally exhausting and embarrassing at times. One thing I and many others with Duchenne need to understand is that the friends who have been with us since the beginning will likely stay with us. Thankfully, I have the kind of friends you don’t feel like you deserve.
On the trip, I was speaking with one of those friends while he was helping me stretch before the wedding (travel makes tight muscles even worse). He told me he wanted to help with any of my needs because one, he loves to serve people as Jesus did, and two, he appreciates the humility and vulnerability it takes to say, “I need you.” Needless to say, that made me think for a second. The opening is there, so I don’t need to feel like such a burden for asking.
I’ve never been the best planner, despite the Boy Scout motto “Be prepared” playing on repeat in my mind. But as my Duchenne progresses, it’s time to think ahead. If I had scheduled a wheelchair-accessible van rental, I could have saved all the energy needed to transfer in and out of my travel wheelchair. Or I could have brought my bigger power chair and transported it more easily.
It’s also important to schedule time for a much-needed nap and go at my own pace. With Duchenne, sometimes you have to take charge. It’s another point I’m trying to personally work on. I prefer to sit back and let someone else take the reins, but I realize that isn’t going to cut it anymore.
What I write sounds easy, but it’s infinitely harder to put it into practice. I know I won’t be perfect at traveling on my own, but the process will get me where I want to be. If I am open-minded, solutions-oriented, communicative, and strategic in everything I do, traveling will leave me feeling rejuvenated rather than tired and wondering if I’ll ever be able to leave home again.
Note: Muscular Dystrophy News 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 another 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 Muscular Dystrophy News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
About the Author
Cadden Kapsalis
Hawken, you are amazing. Definitely an outlier with DMD. My son with DMD, is 13, non-ambulatory and 100% dependent. It is inspiring to hear all you are doing. I am exhausted reading about it! Ha! But, DMD will not be put in a box or defined by a medical definition. It is defined by the one carrying it and you seem to be making the most of your life. God always has a plan and you are a star in that plan.
Take care.
Sincerely,
Cadden