Lisanne
Forum Replies Created
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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.
Fantasizes aside, I recently spoke to a physical therapist who happens to specialize in SMA about these exoskeleton devices and she said that they are difficult to get into and aren’t as practical as you would think. I’m not giving up on the idea of using one yet, but maybe I’ll wait until it’s more user friendly. The fact that they are in existence alone is exciting, especially since we are living in a world of fast paced technology.
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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 transferring from scooter to aisle chair then to plane seat and the reverse after landing. I never thought my life would revolve around peeing so much.
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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 symptoms for attention. I went diagnosed for 20 years until my grandmother intervened and brought me to a hospital to get diagnosed. It was bitter sweet. I was happy to prove that I wasn’t a liar but devastated to learn that there was no treatment or cure at the time. That was 42 years ago. I have written about my journey in my memoir, Falling. It should be available in a few months. Despite the name, it is about rising.
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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 wearing pants and getting up and down and in and out. It was great for being in the hospital bed though. I’m still doing the pee math when I go out unless I know that I’m going somewhere that has a seperate family bathroom that my husband can help me get off the low toilets.
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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 over the falls. No matter how careful I was, falling was inevitable. Now that I’m older, the falls have begun to cause great damage. I’ve had serious fractures that led to surgeries and the knowledge that it most likely will happen again is disheartening. I try to tell myself it’s the last time but I know I have no control.
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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.
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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.