Traveling with SMA

When it came to my level of independence, I have been pretty lucky. An area of my life that was always a little difficult was traveling.

After I graduated college and started earning money, I wanted to travel. In my early 20’s I started losing my ability to get up from a chair independently.

Traveling became more and more difficult

This became an ugly struggle from my teens up until then but I was still able to do it. After I lost that ability, it made traveling much more difficult.

Several of my friends had shore houses that I would go to. I wasn’t able to climb steps anymore.

I required assistance getting up and downstairs in their homes. This could be a funny sight after a night out at the bars. Spending long weekends at the shore was the extent of my traveling.

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Preference to stay local

In the spring of 2018, I started a speaking gig. When this opportunity started, I kept myself on the “local” list.

This meant I would only go about 2 hours away from my home. This way I wouldn’t have to stay over in a hotel.

After about 6 months I started to receive offers outside of the “local” area. This meant overnight stays and sometimes even flying.

I had flown a handful of times in my younger years. In 2018 it had been almost 15 years since I’d been on a plane.

Challenges of traveling when disabled

When I began to start receiving regular offers to travel, I sat down with my partner Suzanne to discuss. 

I was thrilled when she agreed to travel with me. As many of you know, traveling when you are disabled can be a challenge.

I’m extremely lucky that Suzanne was willing to take on this job. It is a job. Even though we are in a relationship, I understand the extra work I require when traveling.

We started flying up and down the east coast, from Boston, Massachusetts, to Orlando, Florida. Suzanne and I traveled out to the Western United States. We made it to Portland, Oregon.

Since the Covid pandemic, my talks have been over Zoom. I miss getting out and traveling to new places.

Recent travel with my significant other as my PCA

In March of 2020, Suzanne became my full-time personal care assistant. There are pros and cons to having your significant other be your full-time PCA. I’ll be writing about that in future stories.

One of the many pros is having the flexibility to travel. In the Spring of 2021, I was able to get out and take a long road trip.

Suzanne and I spent the better part of 3 weeks visiting our family. I was able to visit my grandmother’s home for the first time in almost 20 years. I was also able to visit my aunt and cousins.

We also made a few stops on our own, checking out towns we have always wanted to visit. Suzanne helped me live my lifelong dream when we drove to Key West.

I used to overthink travel. Having a great partner who has opened up a new world to me has changed my circumstances. I hope all of you get to experience travel too.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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