Travel is challenging for people with disabilities, but to me…

Mother’s Day is a tough one for me. My husband, Dave, and I lost a much loved, wanted, and planned-for baby in 1999. My mom died in 2016, and Dave’s mom died in early 2023. So we decided to honor Mother’s Day this year by going to Portland, Maine.

I love to travel for fun, but all my accoutrements and needs with Friedreich’s ataxia (FA) make it complicated. Among FA’s symptoms are poor balance and coordination, as well as declining leg strength. Consequently, I use a wheelchair to get around and have an amazing and sweet service dog, Wendy, to help with some of my day-to-day tasks.

Portland is a little over an hour from our house. A quick trip, it was easy to take my wheelchair and Wendy.

Our hotel was nice and very accessible. Phew! I’ve had the experience that many of my readers affected by FA have likely had: You call the hotel multiple times, and they assure you that you’ll get an accessible room. Then you get there, and you don’t have one.

Lacking accessibility when you need it is not an option. I can’t go to the bathroom unassisted, for example, if I’m not in a mobility-accessible room. It affects many other things, too, like my ability to get in and out of bed and navigate pathways and doorways in my wheelchair. When you’re in a strange place and have laid out a lot of cash to stay in a hotel, it’s important to fight for the room you need.

Thankfully, none of those problems arose for us at the AC Hotel in downtown Portland.

A couple of our activities

Our first foray was to a little Italian restaurant for dinner. When Dave asked them if we could be seated, they gently told us they couldn’t seat us. There were a couple steps into the main dining room, but they also had outdoor dining on the sidewalk. While there were tent poles blocking wheelchair access to the outdoor tables, I think we could’ve found a way.

This is where I typically face a dilemma. I think it’s important to show public places that they have options to accommodate a disabled person if they can be creative. At the same time, I think about how I want to spend my discretionary money and time. I would rather spend it at a place that is welcoming and willing to engage me in a bit of creativity.

We did find a Thai restaurant that had great food, was highly rated on Yelp, and was accessible. If you’re ever in Portland and you like Thai food, I highly recommend Dok Mali.

We had an entertaining boat tour of the harbor and its islands with Portland Discovery. Even though it was drizzling, the views were gorgeous. It was a small boat, and the crew helped me board via a ramp to the dock. I just had to back my power wheelchair down slowly while they stood behind me and directed me. Then they lifted me in my wheelchair onto the boat. They were great.

My experience on several small tourist boats has been much the same. The crew is there to help. My great disappointment on small boats is I can never go on the top deck and have that panoramic view. At the same time, I understand that this is the most a small boat can do. They don’t have an elevator, and carrying me to the top deck wouldn’t be safe.

Portland is beautiful with plenty to do. It’s an old city, so you’ll encounter some cobblestone and historic buildings with steps and narrow doors. These aren’t ideal for mobility equipment, but to me, those are also elements of character that make the trip fun.

Because of fatigue, I always plan on doing less than someone without fatigue would do. It can be frustrating, but a vacation during which I overextend myself is miserable. Even so, I’ve shared here only a bit of our Mother’s Day honoring. Luckily for me, Portland is close, so another trip there is in the picture.

I love vacations, so accommodating and planning for my disease and disability needs is worth the extra work.

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.