I was diagnosed with spinal muscular atrophy (SMA) type 3 when I was 20 years old. Although walking was difficult, I had been ambulatory my entire life. After a knee injury, walking had become more arduous than ever. I was using a cane, and I found myself avoiding going places because of the tiresome struggle to get around and the fear of falling. When I went to the mall, I was only able to go to one or two stores. I was irritable and anxious. The stress of going out started to outweigh the fun.
A physical therapist had suggested that I use a scooter to get around. My first impulse was to reject the idea. I thought that if I started using a scooter, I would get weaker faster and lose my ability to walk altogether. She explained that I would only use it for the things I was avoiding, and I could still walk at home. She also said that I could do more while feeling safe doing it.
I knew what she said made sense. I also knew this day would come. I had started to prepare for it. When buying a home, I chose a model with a master bedroom on the ground floor and an open floor plan. I even had a ramp put in my garage so that it would be accessible in the future when a chair would be needed.
So why was I resisting? I fought hard all my life to sustain my mobility. I think on some level, I thought getting a scooter meant defeat by SMA.
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At the time, I was enrolled in a study at Columbia University. I was privileged to meet another participant who also had SMA type 3, and she was using a scooter. She told me how much her quality of life had increased since getting her scooter. When I saw her on it, I didn’t see defeat. I saw independence, confidence, and strength. She was out and about, living her life to the fullest. Because of her, I decided to get a scooter.
Getting the scooter has definitely improved my quality of life. I’m able to shop at as many stores as I want without getting tired or anxious about falling. I have the stamina to keep up with my husband when we go sightseeing on vacation. Sometimes I even have to slow down so that he can keep up with me. What I thought might hinder my mobility has instead freed me.
It’s been about nine years since I got my scooter. I’m still able to walk at home with the use of a walker. When I’m out, I’m untethered and more active than ever.
Columnists on mySMAteam discuss SMA from a specific point of view. Columnists’ articles don’t reflect the opinions of mySMAteam staff, medical experts, partners, advertisers, or sponsors. Content on mySMAteam isn’t intended as a substitute for professional medical advice, diagnosis, or treatment.
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