There are so many different levels and types of SMA. Meaning type 1,2,3 and some 4. In addition to the types, there are also a different levels of severity. Meaning you could have a type 3 like myself walking and living a mostly normal life in his early 60s with limitations. My limitations are getting up and down out of a chair, walking up…

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Recently, I’ve been attending a local church more regularly. My wife and I are volunteering at our church for multiple Christmas services helping out where we can and being around people who do not judge me for my condition. I also try to relax more since I’m self-employed and enjoy the quiet in downtime, spending more time with family and…

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Barry,

I have SMA3 and and 100% mobile. I have the same thing where I call it my tiny tail my bony butt I don’t traditionally carry anything with me as far as cushion, but I may start looking into for lack of better term a hemorrhoid doughnut where you can blow something up to sit on when you’re out at restaurants or at any commercial places…

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Personally for me, I am on the lucky ones and have literally zero out-of-pocket for a Rusby. I have a little to no side effects since I’ve been using the pill version. The medication has not stopped the progression, but I strongly feel it has slowed it down. I am also 60 years old, so I believe that my age has an effect on my strength and…

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I had just turned 50, and my first marriage had ended. I was faced with dating Not only at an older age, but with a degenerative neuromuscular disease SMA Type 3.

Luckily, I was (and still am, for the most part) living a normal life. I went on numerous first dates and ALWAYS let my date know what I had. At that time, many didn’t seem to care or…

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Wow, good question… There were so many things to take in. I guess my favorite part was watching the little ones who were diagnosed before birth and received Zolgensma. One family sat with us at breakfasttheir little boy had ankle braces and was simply being a toddler, running all around, climbing on the chair, and just being a kid. As…

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For most of my life, even up until just six months ago. I never asked for help. My wife always said it was a pride thing, and I guess she was right. But I’ve come to realize something powerful, and that is most people are genuinely good and more than willing to help. You simply need to have to ask.

Great experince and humbling for me!

Hi,

It is very promising. When there is even a small bit of hope that is exciting.

Hi, I am right handed and right domonate. I have the same issue. The issue is because through years you have worked your right arm more than the left, so the muscle has broken down quicker.

Hi I an participating in a clinical trial offered by NMD Pharma. Its for Adults up to 65 that can walk unassisted. The Trial name is NMD670. The trial fucuses on building back lost muscle. Its a double blind trial where I get the drug for three weeks then the placebo. Of cours no one knows when they get the real drug unless you are very in…

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I started a clinical trial a little less than a month ago. I drive 6.5 hours each way to visit the clinic. The trial is double-blind, but I feel like I was on the real treatment. I was able to lift more weight in the gym, get up off the floor more easily, and get out of bed with less effort. Being able to lift even an extra pound in three…

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