I was intrigued by these types of devices that are worn over the body. I thought of them as the outer version of bionics. If you are old enough to remember the TV show the Bionic Man, I often fantasized about becoming bionic. If not, it was kind of like the Terminator except the machinery was only placed in certain “damaged” body parts.…

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Yes it’s so true about placement. I use a walker in the house so I couldn’t use it during the day but I have thought about using it at night so I don’t have to bother my hubby. I feel bad to wake him on those occasions that I need to pee more than once or twice a night. I’d really like to use it on the plane but not sure with the…

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At a young age, I realized that I was different from my sisters and peers. They didn’t have to use the banister to pull themselves up the stairs, they could walk faster and further than me without tiring or falling. I often asked why but my parents and doctors didn’t have answers. I was called lazy and eventually was accused of making up my…

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I’ve used the Purewick in the hospital after surgery to my leg which made getting out of bed very difficult. I like it better than calling a nurse to help me use a bedpan but sometimes it leaked. I can’t imagine using it out in public. I use a scooter outside and transfer in and of it to get in the car. I don’t see how I could use it while…

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Hi Alyssa, I’ve often felt like I had no control over my body. As a young girl I wondered why my legs didn’t obey me when I tried to climb stairs without pulling on the handrails, when I tried to run or just keep up with everyone while walking. After my diagnosis I understood why I didn’t have complete control and accepted it but I never got…

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Thanks for welcoming me here. I started receiving Spinraza in 2018. I definitely think it’s helping to slow the progression of SMA. I’ve suffered through 5 fractures in the last four years and am still able to walk with the aid of a walker. I believe I have Spinraza to thank for that.

I’m new to this forum, so I’d like to introduce myself. I’m a retired Speech therapist and a mother and grandmother. I was diagnosed at 20 years old with SMA 3. I always knew something was wrong with me but doctors and adults in my life didn’t take me seriously. I felt vindicated when my doctor said he knew what was causing my symptoms of…

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Hi Sara I also joined this forum yesterday and have been reading some of the questions and responses. I was diagnosed 40 years ago with type 3. There weren’t groups, and forums back then. It’s nice to connect with others and share our SMA experiences.