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Time Is Motor Neurons

A father’s perspective: Our journey to finding a treatment

When Quinn, our soon-to-be-born daughter, didn’t make as much movement in the womb as our other 3 children, my wife, Annie, and I thought we had the “chillest” baby in the world. We joked that she was saving up all her energy for when she entered this world kicking and screaming. Quinn was born in August 2018, and she was the most beautiful little girl. Over the first few months, nothing seemed out of the ordinary. In fact, she appeared healthy and had strong upper body strength. But by the time Quinn’s 9-month check-up came around in June, her physical condition started to change.


This topic has 6 replies, 3 voices, and was last updated 7 months, 2 weeks ago by DeAnn R.

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    • #20891
      Kevin Schaefer
      Keymaster

      Hey everyone! Hope you’re all having a great week so far. I’m traveling to Boston today for a Cure SMA leadership conference. As such, I’ll be less active here the rest of the week.

      I wanted to share this YouTube video that my friend Young sent me the other day. This is a fascinating panel discussion about people with disabilities. Each of the six participants has a disability, and they respond to a wide range of questions. They talk about accessibility, dating, if they would change their disability, and more. It’s about a 20-minute video, but I highly recommend setting aside some time to watch it.

      Do you have any takeaways from this video? Were there any questions or responses that stood out to you?

    • #20927
      DeAnn R
      Keymaster

      Finally got a chance to watch the video. Very interesting, but not that surprising to me. Even though there is a lot to agree with, everyone has their own perspectives and experiences. What I noticed is that the strongest response to the question about changing their disability was from those who suddenly became disabled or had chronic pain. Those individuals would change their disability in a heartbeat. I would put myself somewhere in the middle. Although I’m not devastated by my disability, I am on Spinraza, so that right there proves I’d change it. The responses surprised me to the question of feeling like a burden. What shocked me the most is that the individuals with less seemingly physical disabilities felt the most burdensome. Yet everyone in the group has felt like a burden. I would be in this category as well, but I think that’s something we need to change our mindset on.

      • #20947
        Kevin Schaefer
        Keymaster

        DeAnn, I totally agree. When I thought about the “would you change anything” question, I said I somewhat agree. It’s like, I wouldn’t change anything about my life up until this point, because my disability has informed so much of my perspective on life, and it’s brought me into contact with so many great people. Heck, it’s why I have my job! I think it’s a vastly different experience for people who received a diagnosis or had an accident later in life. For people like you and me, SMA has always been there.

        At the same time, I am also on Spinraza to stop the progression, and I certainly wouldn’t mind getting some of my arm strength back. It’s a really interesting topic to think about.

    • #20948
      Ryan Berhar
      Participant

      A couple things stood out. One was that everyone agreed that they felt like a burden. I’m sure everyone with a disability has felt that way at some point. Still, I was a little surprised it was unanimous. The other was the question on whether you’d change your disability. I get that it is a huge part of who I am, but I’d like to assume that I’d be a better person without it. I don’t want to give SMA credit in any way. Ultimately, none of us know what we’d be like without a disability, but I’d be willing to take the chance. I also have a difficult time believing that anyone would truly refuse a working body if it was an option. Like DeAnn said, if you’re on a treatment, that answers the question right there.

      • #20953
        DeAnn R
        Keymaster

        Curious Ryan, when you say you assume that you’d be a better person without SMA how so? Sure you’d physically be able to do more, I’m just not seeing how that equates to being a better person.

        • #20964
          Ryan Berhar
          Participant

          That’s honestly a really difficult question. I suppose we need to define what a “better person” means. Would i be as mentally strong without SMA? Perhaps not, because it has forced me to deal with many challenges. But even so, living with this disease does bring me down mentally. So I don’t know. Maybe a better way of putting it is that I’d live an overall better life. I’m confident saying that. I’d probably be more productive and cause less problems for those around me. Again, this is strictly hypothetical. Maybe I’d be a serial killer or something if I didn’t have SMA. But it seems to me that if I had a working body, I could be a better person. Those are just my thoughts.

        • #20970
          DeAnn R
          Keymaster

          Thanks for your honesty Ryan. I always find this topic interesting. No right or wrong answers. As you said it’s totally speculation. It’s hard not to think what life would be like without SMA, but no matter what we imagine it probably wouldn’t be that way. Life rarely goes exactly how you think it will. Even without disability life has struggles, so where some things would be easier there would still be challenges. I can’t say life would necessarily be better, but it sure would be different.

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