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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 4 replies, 5 voices, and was last updated 1 month ago by Alyssa Silva.

  • Author
    Posts
    • #24137
      Jim Schneider
      Participant

      I have received my first 2 doses and go for my third in 5 days.  What should I expect?  I’m trying hard not to get my hopes up too much but gaining back some of my recent loss in arm strength would be great.  In reality just not losing anything else would make it all worthwhile.  This October will be the 50th anniversary Of my diagnosis so it has been a long slow loss of so much that just stopping it would be great.  Either way making it 50 years with all this deserves a party but with COVID even that isn’t likely!

    • #24138
      Dennis Turner
      Participant

      I had my last of the loading doses in May.

      At this point i can say i feel a bit stronger, tire less quickly, but the really big thing for me is that i don’t feel like i am losing my strength anymore. There are still some muscles that don’t do what they did last week, but it is not as frequent. Small wins matter.

    • #24139
      DeAnn R
      Keymaster

      Congrats! For me, I was so glad to get through the loading doses. I saw the biggest boost between the fourth & fifth dose. Nothing dramatic, but noticeable. Everyone’s different it seems. My best advice is to listen to your body. Kudos to 50 years! On to the next.

    • #24142
      Lupa F
      Participant

      I’ve never noticed any particular change from a specific dose, but I have noticed general changes over time. I’m getting my 10th dose next week, and while I’ve gotten back a little strength, my grip strength is definitely better, though even with that I’m not where I was maybe 5 years ago, the most noticeable change is my recovery time. Before Spinraza I was at the point where if I had a busy day or exerted myself, I’d have to try to rest for several days to get back to where I was, which was getting me in the bad cycle that I needed to be active to maintain strength, but if I was active I’d be too tired to do anything for days which would make me lose strength. Now I feel like if I’m tired, I’m back to where I was in a day rather than 3, or if my arm gives out doing something I just have to wait a few minutes for it to come back rather than it feeling dead all day.

      I’d say I’m definitely better than I was before Spinraza, but it hasn’t been some sort of miracle treatment where I’m able to do stuff I never thought I’d do again or anything like that. I feel like I’m sort of maintaining about where I was maybe a year before I started it, and that’s enough for me to keep living independently which is all I hoped for.

    • #24172
      Alyssa Silva
      Keymaster

      That is great! Congrats on starting your Spinraza journey. It’s important to note that everyone’s experiences are different, so what was the case for me may not (probably will not) be the case for you. I started noticing very slight changes in my respiratory function after the 4 loading doses. But it wasn’t until the 6th or 7th dose where I noticed big changes. Since then, I feel like I have plateaued. I’ve kept what I’ve regained and that’s about it. But, honestly, I’m more than happy about that! Like Lupa, I’d say I regained what I lost in the year (or 2) prior to starting Spinraza. Currently, I’ve had 14 doses.

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