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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 11 replies, 5 voices, and was last updated 1 year, 8 months ago by DeAnn R.

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    • #15613
      Gabriel
      Participant

      Hi , my name is Gabriel and I was diagnosed with SMA type 3, approx 12 years ago I stop doing PT and everything else and start to living, today I see that my parents , doctors and myself we made a mistake stopping all this..

      A few days ago I had some experiences and see that I’m need to start all this aggain…  I have 22 years now I don’t think that is too late….

      I’m now starting to lose strength in my arms and overweight..

      Anyone can tell me if it’s possible reverse the situation about the arms strength?

      Any of you had good experience with PT ? Maybe help you do things that you couldn’t do before ?

      Thank you all for read and sorry for some wrongs words in this topic, I’m from Brazil and I don’t have a good English writing.

      Cya

       

    • #15614
      Kevin Schaefer
      Keymaster

      Hey Gabriel! First off, welcome. I’m Kevin Schaefer, one of the forum moderators.

      Thanks for sharing here and voicing your concerns. I understand where you’re coming from, as I had my own doubts about doing PT as an adult. I did it in elementary school, but I avoided it for years and was extremely hesitant to get back into it as an adult.

      Eventually though, my doctor warned me that if I didn’t do something, my muscles would get tighter and tighter and I could have serious problems down the road. I sucked it up and found a clinic that would allow me to do water therapy, and I’ve been doing that for a little over three years now. It helps tremendously, and I would say it’s never too late to start.

      For a little more detail about my experiences with physical therapy, read my column on this subject: https://smanewstoday.com/2017/11/28/sma-and-the-wonders-of-water-therapy/?amp

      Feel free to ask me any follow-up questions!

      • #15617
        Gabriel
        Participant

        Hi Kevin , thanks for the subject  ..

        Yesterday I change my mind and know that it won’t be easy but need to start, I’m not hesitant at all …

        But how many weeks until you see any improvements with therapy ?

        I’m little nervous about all this routine but I’m confident that I can done all this with efforts…

         

        • #15618
          Kevin Schaefer
          Keymaster

          It’s totally ok to be nervous about it. As you can read about in my column, I was especially hesitant about the transfer process. But again, it worked out. The key is finding a good physical therapist who will communicate with you and listen to your needs. My coworker Michael and I are actually going to be doing a podcast soon about our PT experiences, and I’ll post that here when it’s recorded.

          As far as how long it takes to see improvement, it really varies. For me, I noticed the biggest differences once I started my Spinraza treatments and did them in conjunction with PT. You’re probably not going to experience changes right away, but give it some time and keep at it. It’ll help loosen your muscles and make you feel better in general. The first step is just starting, so you’re on the right track.

    • #15619
      DeAnn R
      Keymaster

      Gabriel, Thank you for posting. Like you I gave up on physical therapy many years ago. Now that I’ve started again I wish I had kept up with it. I’m still glad I started back up with it just because it helps with movements I’m not accustomed to. You may not get back to where you were, but I think it’s good to keep moving. SMA is a progressive disability. I know keeping moving has always helped me maintain movement longer than if I do nothing. Moderation is key, you don’t want to overdo it. Also, try to have fun with it. Good luck!

    • #15621
      Ryan Berhar
      Keymaster

      Hey Gabriel! Welcome. I’m Ryan, another forum moderator. I’m also 22, and I have SMA type 2. I don’t want to discourage you from doing PT, as it does have its benefits. However, I wouldn’t expect it to reverse your physical decline. I also wouldn’t blame the decline on a lack of therapy. I experienced a steep decline in my young adult years, and I know that’s not uncommon. I think what you’re experiencing is probably just par for the course. The Spinraza treatment is now available, but even that typically results in maintenance rather than a reversal. From what I’ve heard, your best bet for reversal is probably Spinraza combined with PT. Good luck! Keep us updated.

    • #15628
      Gabriel
      Participant

      Hello Ryan and DeAnn,

      I know it’s very unlikely to reverse this but thanks for the post, I’ll start PT and try get spinraza.

      Any news I’ll post here !

      Thank you all!

      • #15632
        Kevin Schaefer
        Keymaster

        We’re happy to help! Also DeAnn and I are both on Spinraza, so feel free to ask us any questions about that. We have a separate forum for Spinraza discussions.

    • #15634
      Adnan Hafizovic
      Participant

      Gabriel I like you have type 3 and I almost whole life have some exercise.I have some benefit but of course we must be careful that we don’t <span class=”tlid-translation translation”><span title=””>exaggerate.So it is good to have it some exercise and massage,and enough rest.For example we sitting too much and that us get tired.I read that too much sitting tired a healthy man as if he spent an hour at the gym.</span></span>

      • #15637
        Kevin Schaefer
        Keymaster

        Yeah, you definitely want to go in to PT with realistic expectations. At the same time, it’s very helpful and can loosen our muscles and relieve stress.

      • #15690
        Gabriel
        Participant

        Hi Adnan, i know and I will be careful with that..

        I will start in January little anxious but ok! Haha

    • #15737
      DeAnn R
      Keymaster

      Keep us posted!  I’m sure it will go well.

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