Taking My New Wheelchair on a Cruise Felt Empowering

Sean Baumstark avatar

by Sean Baumstark |

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The progressive nature of Friedreich’s ataxia (FA) has been a common topic for me lately. From talking with a friend over dinner about changes I experience to discussing on my podcast the many ways in which FA affects various people, I realize that this theme will always be relevant to me.

Many people with a progressive disease can relate all too well.

I recently experienced another transition that inspired this column. Although temporary, this step in my progression is just as real and tangible as any permanent one.

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After I had a femur injury in 2019 and had to use a loaner wheelchair for more than four months, I used the experience as an opportunity to begin the process of getting a custom manual wheelchair. This process started in early 2020, and like with many things, the COVID-19 pandemic caused delays and miscommunication that derailed the original request. Starting over with insurance and all the documents and professional assessments that were required was frustrating, but worth the hassle.

Toward the end of last summer, I received the delivery of my first custom wheelchair. The chair was delivered to my home, and a specialist went over its many features, giving me a crash course on using it. He also took the time to tighten a couple of fasteners and adjust some elements as I sat in it, testing the essential functions.

I was excited and relieved — finally, I had my own chair that fit me perfectly. I also had a brand-new seat pad that was mine, and mine alone.

As excited as I was to receive the chair, I didn’t need it just yet. So I loaded it into the back of my hatchback car and hauled it off to storage.

A couple weeks ago, I dusted it off to use on a cruise. I’ve long enjoyed cruises and knew that I’d need at least my walker to move about the ship safely. So I decided to use the chair on this vacation, knowing it would save me a lot of physical energy and time. A friend was willing to occasionally push and maneuver it.

Although I used a chair on my last cruise a couple years ago, it was temporary due to the femur injury, which was my explanation when people asked. So it was an easy way to justify using it without getting into the weeds about my FA.

This time, the decision was mine, and in a way, I feel like I hold power over my condition. Although I have no idea when I’ll need a wheelchair regularly, I can navigate how my progression affects my day-to-day activities right now. With so many uncertainties about how FA will affect me, being prepared is helping me to stay in front of it.

And on that cruise, with no injury to blame, my wheelchair was a decent icebreaker for helping others better understand FA and physical disabilities.


Note: Friedreich’s Ataxia 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 Friedreich’s Ataxia News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.

Comments

Judd Jones avatar

Judd Jones

SCA3 here. I'm 100% dependent on a walker. I'm a scheduled to go on a week-long cruise later this year. It's my first ever. Do you do a lot of moving around on a cruise? I'm wondering if it's a fool's mission to try to do it all using a walker. I guess you'd recommend using a wheelchair instead? How much moving around is there? Should I be terrified? :)

Thanks for the article!

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Sean Baumstark avatar

Sean Baumstark

Hi Judd - thanks for reading and asking the questions! I'm excited for you to be going on a cruise, they are the best vacation! Moving around on the ship? That's totally up to you. Ultimately, I'd say yes. If you're the type that wants to take in all the shows, music, and events on board, then you'll move a lot. Although ships are huge, walking from one end to the other isn't all that bad. For me, it was more a question of energy and independence. With a walker, it can be hard to carry a drink or plate of food while also managing the walker. With my chair, my lap was used a lot! The real challenge is navigating any excursions you may participate in within port. Even if you choose to simply lounge on deck all week, I'm sure you'll enjoy it!

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lynn osborne avatar

lynn osborne

Hi I have been trying to get my daughter involved some how she is 38 yrs. has Frederick's ataxia . Wish she could talk with someone. Her name is Kelley Osborne she is on face book.

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Sean Baumstark avatar

Sean Baumstark

Hi Lynn - thank you for reading! I'm glad to hear your daughter is on Facebook, there are a ton of groups that are easy to find. Also, we have the Forums here on https://friedreichsataxianews.com/forums/ that may be a good way to connect.

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