Traveling with SMA is better with people I love

I love to travel! A trip to England this summer was my first journey overseas from my Indiana home, but I’ve been to a lot of beautiful and amazing places in the U.S. and Canada over the years: mountains and canyons, beaches and forests, oceans and lakes, national parks and big cities. The cultures are as diverse as the scenery from coast to coast and border to border. But one thing that all of my trips have in common is that I’ve never traveled alone.

There’s a wild, independent streak in me that absolutely relishes the idea of riding across the country, just me, the road, and the bugs that hit the windshield. But since I live with SMA, I deal with limits on my strength, mobility, stamina, and even my wheelchair battery, meaning I can’t get too far or go too long without a bit of help from others.

On days when I feel sulky and cranky, these limits are disappointing and frustrating. But most days, I see them for what they are: an incredible opportunity for making memories and deepening relationships with people I love. Long rides in the car, train, or plane allow undistracted conversations, and sharing new experiences adds to our repertoire of special things we have in common.

So while others have written about the equipment and accessibility logistics of travel, I’d like to share about an equally valuable asset: caregivers who make it possible.

Recommended Reading

June 23, 2025 News by Lila Levinson, PhD

Gains found over 4 years with Spinraza treatment in real world

Choosing a compatible team

I was so thrilled when my dad and my friend Anna told me they could go to England with me. While I wish I could’ve taken the whole posse of all my amazing people, it wasn’t financially or practically possible. I narrowed it down to just two, and it was important that they be good travelers and get along with each other.

Dad and Anna have known each other for years, so I knew they’d be comfortable and make a good caregiving team. Plus, they have unusual personalities and skill sets that complement and help each other. Dad is a retired airplane mechanic, an innovative handyman with a gentle and steady spirit; Anna is a seasoned adventurer, always thinking ahead and eager to try new things.

Offering a gift of gratitude

Early on in the planning process, I asked my team what they were most excited to see and do in England. They both, separately, told me they just wanted to be with me. While that’s a sweet sentiment, it wasn’t very helpful, so I pressed a bit harder.

You see, I had a list of things I wanted to do that was so long I wouldn’t get to do them all, even if I stayed there for a month! But it couldn’t be a trip all about me. What’s sure to suck the joy out of an adventure of mine is knowing that my companions are only tagging along to indulge my dream.

Neither my dad nor Anna had ever been to England before either, so it wasn’t just my adventure; it was theirs also. It was a gift I could offer them as thanks for all their years of love and care, and therefore it had to be a great gift! They eventually did suggest a few activities and attractions they didn’t want to miss, so I made sure that those made the final cut on our itinerary.

Caring for caregivers

They were both so great about being attentive to my needs that I wanted to return the favor; in a small way, I was their caregiver, and I felt responsible to get them home safe and sound. I did my best to keep an eye on them and make sure they weren’t getting too tired, too sore, too hot, or too overwhelmed. And while we all had moments of impatience among us, I tried to focus on and acknowledge the beautiful ways we kept showing up to serve one another.

Overall, Dad and Anna seemed to be relaxed and happy, interested and energized, so I think they had a good time, and that meant a lot to me. On the way home, we talked about all the incredible places we visited and the things we saw and learned: a hundred new memories to mull over for years to come.

Then I asked my dad what his favorite part was, and do you know what he said? “Spending time with you.”

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, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.