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    Adapting to Life Outside Our Home With SMA

    I once heard a joke that a woman’s mind is like an Internet browser that has 1000 tabs open and running at once. I laughed at the time, but came to realize that if I didn’t actually feel like this before hearing the short acronym “SMA,” I most certainly do now.

    I spend much of my time pre-planning and thinking of possible problems that we may run into because of the kids’ diagnoses. I think many other SMA parents do this as well. Prior to our lives with SMA, we didn’t realize just how inaccessible the world is to those who are differently-abled.


  • This topic has 4 replies, 2 voices, and was last updated 1 month ago by Halsey Blocher.

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      • #21679
        DeAnn R
        Keymaster

        As I’m preparing for my 10th, or is it 11th, Spinraza injection tomorrow I can’t help but think back.  I remember when I first learned about the treatment.  For the next nine months I anticipated how it would change my life.  Although I was excited I had to try to keep my expectations in check. After all not much info was available for adults. Still I knew I was doing something revolutionary.

        Not everyone has the opportunity to have access to Spinraza.  Fortunately there are other treatments in development like risdiplam.  For those who are awaiting these new treatments I can imagine the anticipation they feel.  I’ve been in their shoes.  Kala writes about this topic in her most recent column. Although there are still a lot of unknowns, it’s certainly something to look forward to. Are you anticipating new treatments? How are you managing expectations?

      • #21689
        Alyssa Silva
        Keymaster

        Yes I remember those feelings of expectations as well. What a roller coaster of emotions it was!

        I know this is far out in the future, but I’m anticipating a drug that will improve my muscle function. I believe it has to do with improving the myostatin in the body. While Spinraza is working, I’ve lost so much muscle strength over the years that Spinraza can’t correct. I have hope about these drugs though.

        Several companies are working on it. In fact, my dad’s best friend from high school is the president of one of these companies. Maybe I’m wishful thinking but I’d LOVE to get in on a trial in the next few years.

      • #21709
        Halsey Blocher
        Participant

        I can relate to this column so much! Like Kala, I couldn’t receive Spinraza, so I’m very excited about Risdiplam. I can also relate to what you said about keeping expectations in check. Before Spinraza I had never really thought about the strength I might regain one day. I didn’t think that day would come in my life time. But once news about Spinraza started going around, my mind went a little wild. I even contemplated the idea of someday gaining the ability to join the wheelchair basketball team. That was when I realized I should reign it in a bit. My new dreams temporarily crushed when I found out I couldn’t safely receive Spinraza, but some of them are starting to resurface now that Risdiplam is presenting itself as a possibility. Right now, my biggest hope is to regain the ability to swallow thin liquids like water and lemonade. I’ve heard that Risdiplam is proving to be especially good at strengthening the muscles used to swallow, so I think it might be realistic. Certainly more realistic than the basketball idea!

      • #21711
        Alyssa Silva
        Keymaster

        I also heard that risdiplam is proving to be effective in swallowing. Fingers crossed for you Halsey!

      • #21718
        Halsey Blocher
        Participant

        Thanks Alyssa!

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