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  • Building Back Stamina

    Posted by deann-r on April 29, 2022 at 10:00 am

    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?

    alyssa-silva replied 1 year, 11 months ago 4 Members · 22 Replies
  • 22 Replies
  • tracy-odell

    Member
    April 29, 2022 at 10:36 am

    Same here…{sigh}

  • dennis-turner

    Member
    April 29, 2022 at 12:20 pm

    Me too.

  • alyssa-silva

    Member
    April 29, 2022 at 4:23 pm

    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?

  • deann-r

    Member
    May 2, 2022 at 10:45 am

    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.

  • alyssa-silva

    Member
    May 3, 2022 at 10:48 am

    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.

  • dennis-turner

    Member
    May 3, 2022 at 3:19 pm

    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.

    • alyssa-silva

      Member
      May 4, 2022 at 9:48 am

      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.

  • dennis-turner

    Member
    May 7, 2022 at 6:05 pm

    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.

  • alyssa-silva

    Member
    May 7, 2022 at 7:40 pm

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

  • dennis-turner

    Member
    May 10, 2022 at 2:18 pm

    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.

    • alyssa-silva

      Member
      May 10, 2022 at 9:01 pm

      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.

  • dennis-turner

    Member
    May 12, 2022 at 2:28 pm

    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!

    • deann-r

      Member
      May 12, 2022 at 4:10 pm

      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.

    • alyssa-silva

      Member
      May 15, 2022 at 9:38 pm

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

  • dennis-turner

    Member
    May 16, 2022 at 1:46 pm

    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.

    • deann-r

      Member
      May 16, 2022 at 5:42 pm

      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?

      • alyssa-silva

        Member
        May 16, 2022 at 9:24 pm

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

      • dennis-turner

        Member
        May 17, 2022 at 9:13 am

        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.

      • alyssa-silva

        Member
        May 17, 2022 at 9:18 am

        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.

  • alyssa-silva

    Member
    June 29, 2022 at 7:29 pm

    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.

    • dennis-turner

      Member
      June 30, 2022 at 6:04 pm

      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!

      • alyssa-silva

        Member
        June 30, 2022 at 9:42 pm

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

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