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    • #29439
      DeAnn R
      Keymaster

      It’s been a while since I’ve had one of those appointments that turns into an all day affair. The appointment itself went great. Mom and I decided since we were out we should make a few stops. Even though it was chilly, it was actually kind of fun. But now I’m pooped. Plus I have to catch up on the work I missed out on. I’m realizing I don’t have the stamina I did pre-pandemic. Any tips on building it back? Do you forgo fun to reserve energy?

    • #29453
      Tracy Odell
      Participant

      Same here…{sigh}

    • #29454
      Dennis Turner
      Participant

      Me too.

    • #29456
      Alyssa Silva
      Keymaster

      Here I was thinking I’m the only one… I went out for an hour today and am currently feeling out of breath, utterly exhausted, and like I have 100-lb weights on my arms. Makes me sad. I’ve missed out on so much as it is with the pandemic, now I have this to contend with as well. My question is CAN we build it back when our disease is progressive? And, if so, how much do I push myself to gain stamina back vs. not overdoing it?

    • #29457
      DeAnn R
      Keymaster

      I want to say I’m glad I’m not the only one, but I’m sad I’m not the only one too. Alyssa, I’m thinking we can build back some stamina. I’m not sure though if it’s necessarily good to just power through though like I’m inclined to do.

    • #29462
      Alyssa Silva
      Keymaster

      I hear you. I push my limit far too much, oftentimes without even realizing it before it’s too late. I’m forever trying to strike a perfect balance.

    • #29468
      Dennis Turner
      Participant

      I had an appointment with my new Neuro yesterday and shared how I hadn’t seemed to get the boost from my last Spinraza injection. My next is Thursday. I am hoping it makes a difference this time. Usually my stamina improves after a couple weeks.

      • #29471
        Alyssa Silva
        Keymaster

        I actually had this conversation with my dad yesterday. I’ve noticed a decrease in its effectiveness, too. Granted I’m dealing with some health issues that could be overshadowing my strength, but muscle progression could very well be an issue at play. I’ve noticed this change for the past two doses and have seen some comments on Facebook of other adults expressing the same feeling.

        When I asked my neurologist about a change, he said he hasn’t heard that before but they’re working on administering higher doses in clinical trials right now. Curious as to what your neurologist said if you don’t mind sharing? Good luck tomorrow.

    • #29475
      Dennis Turner
      Participant

      She acknowledged what I had said and was not dismissive. Some of the studies she is following are suggesting that the Spinraza dosing level should be determined by body mass, i.e. larger needs more medication to reach same results.

      Alyssa, I shared that another person on a SMA forum had related the lack of effectiveness this past dosing round and she was surprised. Our final decision  is we will observe results this time and consider what to do if again I see little change in stamina.

    • #29477
      Alyssa Silva
      Keymaster

      Fingers crossed. If you don’t mind, I’d love to hear about your progress (or lack thereof) in a few weeks.

    • #29483
      Dennis Turner
      Participant

      Is this too early for an update?

      After only 4 days, I felt the difference. I have been able to not only get outside, but do my yard work like a couple years ago. AND, I didn’t feel so exhausted that I needed a nap either yesterday or so far today.

      I don’t quite understand why, it has never worked so quickly or at this level before. Praying it isn’t just a blip, but 2 days in a row is awesome.

      • #29486
        Alyssa Silva
        Keymaster

        Oh this brought a huge smile to my face. That’s so great to hear. Don’t question it! Let’s hope tomorrow makes it 3.

    • #29500
      Dennis Turner
      Participant

      Day 3 and 4 were also great! As my wife said, however, maybe use some moderation…

      Yes I have much more energy and can do so much more, but my muscles still get sore from the unexpected activity.

      Still don’t know why this treatment worked, no change in my dose or other habits, but WOW!

      • #29501
        DeAnn R
        Keymaster

        Not overdoing it when you have the energy is challenging. I think it’s a combination of feeling the boost and not knowing how long it will last. You just want to to everything while you can. Hopefully it’ll be a good long run for you. I don’t get the boost from Everysdi.

      • #29504
        Alyssa Silva
        Keymaster

        That is so awesome Dennis. Please keep us updated on your progress. We love to hear it.

    • #29513
      Dennis Turner
      Participant

      Started this week with the same energy I have had since last Monday.  I still don’t understand it, but I will take it!

      I have a official PT measurement set on Thursday, wonder if it will show the same improvements?

      Also I got my repaired CPAP back Saturday which is definitely helping.

      • #29514
        DeAnn R
        Keymaster

        That’s great to hear! Hope the energy continues and the pt eval reflects it. I noticed you mentioned CPAP. Since I’ve heard BiPap is preferable for those with SMA I wanted to bring it up. Have you ever had any issues with Co2 build up on CPAP?

        • #29516
          Alyssa Silva
          Keymaster

          I’m curious as to why you use a CPAP as well!

        • #29519
          Dennis Turner
          Participant

          My pulmonologist has, at this time, not determined that I need a bipap. She expected I would before doing many lung tests. For whatever reason I am ok as long as I have a cpcp. Doing without even that for the past two months was very difficult,  but between my cpap breaking and the nationwide shortage right now, there were no loaners available.

          I slept sitting up most of the time.

        • #29520
          Alyssa Silva
          Keymaster

          Interesting. I didn’t realize there’s a shortage of those too. Scary times in the world right now. I’m glad you were able to resolve things though.

    • #29694
      Alyssa Silva
      Keymaster

      Hey Dennis. How goes it with Spinraza? I got my dose last week and started noticing improvements in my oxygen saturations within a few days. I couldn’t believe it! Hope you’re still feeling and reaping the benefits.

      • #29698
        Dennis Turner
        Participant

        I am still doing ok. Yes, the kick I got at first has disappeared, however, I am still feeling so much stronger than I had been after the previous injection.

        I am thrilled you are having better oxygen levels. Anyone else think that last round was a fake treatment?

        Thank you for checking!

        • #29700
          Alyssa Silva
          Keymaster

          Ha, right? Interesting that we’re both doing well this round. Glad to hear good news.

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