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How different generations living with SMA can teach one another

Meet Regina and Al. Their friendship and respect for one another all started at a fundraiser before a Phillies baseball game in 2019. “I watched Regina give a beautiful speech at the event about her recently diagnosed son, Shane,” recalled Al. “I thought to myself, ‘My friends at Cure SMA need to meet this amazing mom and get her involved.’”


This topic has 10 replies, 4 voices, and was last updated 8 months, 1 week ago by Helen Baldwin.

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    • #21402
      Alyssa Silva
      Keymaster

      Hey all! Thought it’d be nice to start a thread where we could share our experiences with Spinraza and hopefully encourage/enlighten others by doing so. I’ve found each person’s experiences to be so unique, but reading about them has definitely supported me in my own. I’ll go first.

      I started receiving spinraza almost 3 years ago now in December of 2016 and have marked a definite improvement. While these gains haven’t been significant, they have made a world of a difference in my life.

      My respiratory function has improved. I can speak louder and for MUCH longer periods of time. I also have a better— but still not great— cough.

      I’ve seen improvement in my facial muscles. Prior to spinraza, I couldn’t smile well on the left side of my face. Today, I cheese way too hard! I also can chew and swallow more easily.

      My overall stamina has improved but not as much as I had hoped. This could also be due to other circumstances such as diet and sleep.

      In the past year, I’d say my improvements have kind of plateaued or stayed the same. In other words, I haven’t noted any new gains. HOWEVER, about 4 weeks before each dose my body begins to slow down and weaken. The spinraza slump is real, folks. But, it reminds me that the drug is very much working in my body, and I’d be lost without it.

    • #21411
      Dennis Turner
      Participant

      Hopefully I can let you know in a few months. I am just now working to get approval.

      • #21414
        Alyssa Silva
        Keymaster

        Very much looking forward to that day. 🙂 Best of luck to you!

      • #21427
        DeAnn R
        Keymaster

        Keep us posted Dennis!  I hope the process goes smoothly for you.

    • #21426
      DeAnn R
      Keymaster

      Initially I had gains, but since then have slid back to just above baseline I’m guessing.  My next physical therapy assessment is in a couple weeks, so that’ll tell me more.  Since I was on a pretty steady decline prior to Spinraza I still consider it a win.  I’m glad they’re re-evaluating dose levels for adults.  I definitely felt bigger gains during the maintenance doses.

      • #21432
        Alyssa Silva
        Keymaster

        I was in a steady decline too prior to receiving treatment. It has honestly been a lifesaver for me because, every time the drug begins to wear off and I feel weak again, I realize how reliant I am on Spinraza for my well-being. Do you have any inclination as to why you went almost back to baseline?

        • #21484
          DeAnn R
          Keymaster

          I do still think I’m still in the positive, but have regressed some.  I’ll have to see what the assessment says, but I base it on how I handle my phone.  Probably not the most accurate determinate (if that’s the right word), but it kind of gives me a gauge as to my mobility.

        • #21495
          Alyssa Silva
          Keymaster

          I understand what you’re saying though. To be honest, my PT eval results have pretty much remained the same since the day I started Spinraza. I’ve personally noticed differences, and my family/friends/doctors have said the same. Not sure why the numbers say otherwise. But, when you say you gage its effectiveness by how you handle your phone I totally get that!

    • #21503
      Mike Huddleston
      Participant

      Hey Alyssa –  I just posted under Risdiplam section that I’ve had my 4th maintenance dose in October.  So far, most of my gains have been in the lower body: increased strength and muscle mass in my quads, VMO, hip flexors, and anterior tibs.  Some improvements in upper body strength, but less significant and not as measurable.  I’m still using my chair (initially started in 2014 part time, then full time in 2015), but have set rather high goals of standing again, and once there, talking steps.  A lot of improvement in PT in that regard.  And I work out 6 days a week from 1.5 to 3 hours.  The one day I don’t work out is 1.5 hours or so of aqua therapy.

      So much of this is subjective.  However, other than physical assessments, I also have another more objective measure: in January of this year in PT, I was using a NuStep recumbent stepper on level 1 and using a leg stabilizer on my left leg.  I am now on level 6 without a leg stabilizer.  not as many steps in a 10 minute period, but I couldn’t move the device on level 3 in January, let alone level 6.

      • #21526
        Alyssa Silva
        Keymaster

        How incredible, Mike! Thank you for sharing this with us. May you have continued improvements and become one step to standing each day— regardless of which treatment (Spinraza vs. Risdiplam) you choose. So crazy to think that, in 2020, we’ll have choices!

        • #21532
          Mike Huddleston
          Participant

          Thank you, Alyssa.  Very kind of you.  And I understand these are aggressive goals, but I will continue to push myself and take advantage of every opportunity presented.  And choice in treatment protocols is overwhelming at times.  That we are here today is simply amazing.  I’m not quite at the place of Lou Gehrig when he made his “luckiest man” speech, but I do feel so fortunate after watching my body get weaker for 40 years, to now be seeing improvements. It is often emotional.

    • #21539
      Helen Baldwin
      Participant

      Am cleaning out my ‘hoarder’ inbox and found this – https://smanewstoday.com/2019/11/12/risdiplam-improves-motor-function-in-people-with-sma-types-2-and-3-interim-phase-2-3-data-show/

      If you know of others, I’d love to have them.

      Thank you!

    • #21538
      Helen Baldwin
      Participant

      I am just now getting to this, but the timing is actually pretty perfect.

      After our baby Jeffrey was diagnosed with SMA (1997), we learned that my mother’s cousin’s two older granddaughters also had SMA. Both were diagnosed with Type 2 – the younger one weaker and actually diagnosed just before the older one. The younger one, a young adult, passed away last year. The older one is the mom of a 3-year old daughter. She continues to work from home; however, my mother’s cousin has just written that she is getting weaker. I don’t know what she’s able to do, but I know her father has hired a nanny to help with her daughter.

      We have never met them. We live in NC, and they are in CA. For some reason, they have not been interested in participating in the SMA community (despite my encouragement!); however, my mother’s cousin is very interested in the benefits of Spinraza and Risdiplam. She’s curious to know if it might help her granddaughter and, if so, how.

      Some time ago, I sent her links to articles about Spinraza, along with FB groups I thought would be beneficial. I doubt they did anything, but I’m game to send info again. Would anyone mind my sharing what you’ve shared here about your results with Spinraza? And if you have a good link or more for Risdiplam (i.e., results that have been seen in trials, etc.), would you please share? I don’t know anything about Risdiplam, other than it’s an oral treatment.

      If you’d like to send it via email, my address is [email protected].

      Thanks so much in advance! It’s hard to fathom that I’m asking about ANOTHER treatment for SMA!!! Truly mindboggling for those of us oldtimers….

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