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Do you exercise/stretch every day?
Most non-disabled people go to the gym every day… well, at least they say they do. Of course, given my limitations, a gym is useless for me. (Although, fun fact, I used to be the social media manager for my friend’s gym.) That said, exercise and movement are still important to my well-being.
I must admit that I don’t exercise as much as I should, nor see a physical therapist regularly. As I’m getting older, I have felt more aches and pains and the need to stretch.
Do you exercise/stretch every day? What does your regimen look like?
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11 Replies
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How did I miss this topic????
Yes, I exercise every day, usually for about 2 hours. In addition, I do PT twice a week, once in clinic and the other in the pool with a therapist I’ve worked with since October 2016. My Home Exercise Program (HEP) is pretty comprehensive as my PT and I have reviewed it and tweak it if and as needed. It includes light weight (uh, of course) exercises, along with bands and exercise balls, various hand exercises, and some stretching. I also stretch for about 10 minutes before I get out of bed each morning and for a few minutes when I get in bed at night.
I doubt anyone here has heard My Story from when I was an ambassador for Spinraza (now taking Evrysdi). In it, I touched on why I have such a commitment to exercise. I had an older brother, Steve, a Type 2 (I’m a 3) who passed away back in 2004 at the age of 45. I carry two main things with me from him: First, we were talking a few years before he passed away and he mentioned that treatments were on the distant horizon but would likely not be available in time for him, but should be for me. Sadly, he was 100% correct about that. I miss him every day, but I exercise because it’s for him. Yes, I benefit, but it’s what he would be doing. I owe him that. The second, on a less serious note, is my love for baseball, and specifically my lifelong support for the LA Dodgers. I’m originally from CA and when he taught me about baseball, it was “Dodgers this” and “Dodgers that” and “Tommy Lasorda this”, etc. I’ve loved the Dodgers ever since.
That said, if possible, it doesn’t have to be 2+ hours a day. I encourage folks to exercise in some capacity and to their ability at least a few times a week. Stretching is also helpful, pool therapy is amazing, and just getting outside is a bonus. You want to be in the best position to take advantage of current treatments as well as the new and better treatments on the not-so-distant horizon, like the myostatin inhibitors.
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Hey, Mike. Thank you for sharing your story with us. Your love and respect for your brother Steve really shine through, and it’s clear how much his influence continues to guide and inspire you. ☺
Your exercise regimen is impressive! It’s also motivating me to incorporate more exercise into my daily routine. That said, I am much weaker and more limited in what I do compared to you. Getting out of the house is not easy for me, especially during the winter months. So, it’s hard to get physical therapy. I used to have somebody come to the house, but my insurance is difficult with that. They say that because it’s more maintenance than improvements, they will not cover it. This was a few years ago now, so I think I may try this battle again. I see a physical therapist at my hospital once or twice a year for my spinraza evaluation and wheelchair needs. I am going to discuss this with her the next time I see her in hopes that she can advocate for in-house therapy for me. As you mentioned, these treatments have been on my mind lately, and I feel that I should be doing more to reap their benefits.
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Thank you for your kind words, Alyssa.
I definitely understand that I’m pretty fortunate thus far and try to never lose sight of that. I just meant to encourage everyone to do what they can; anything is better than nothing and again, if possible, can have a positive effect. Insurance concerns me as well, as they are built to decline, which places the burden on us to prove what we need. Sure, there are people who abuse it and take advantage of it, but we’re all adversely affected by that small number of folks. The potential for benefit reductions depending on what Congress does with the reconciliation bill could have devastating effects on those in our community. And much of what we need from treatments to DME such as power wheelchairs are so expensive that the denial is almost always automatic. 😠🤯
The concern I have is with upcoming treatments and insurance coverage. How willing will they be to consider combination treatments such as Spinraza or Evrysdi along with the myostatin inhibitors? The efficacy in clinical trials as I recall was in combination with these treatments, not as a standalone option. They (some, not necessarily all) already make it a hoop hopping experience to just get the basics approved. And myostatin inhibitors, if I remember correctly, require a monthly infusion. That in and of itself could make that treatment difficult for many to obtain, even if insurance is willing to cover it.
These are good problems to have in the sense that it means progress is being made. But if insurance denials happen or if someone doesn’t have the ability to make it to a monthly or otherwise appointment for treatment, these things could just add to the frustration. Interested an anxious to see how this works.
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Oh man. I have been so looking forward to this new myostatin drug that I didn’t even think about insurance. But what you said makes a lot of sense. My last Spinraza dose cost almost $300,000 because I get it done in a hospital setting and under fluoroscopy. My insurance must love me…
I really hope that our doctors and Scholar Rock are prepared to help people navigate insurance woes if need be.
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I can barely move anymore, so I can only work on my breathing and speech on my own. I do PT twice a week though. My former therapist, whom I’ve known for 22 years, knew my body better than I did, and did the most effective (and painful) stretches. My current therapist is afraid to touch me as he is concerned about brittle bones. I can’t say I don’t appreciate how safe that makes me feel, but the masochist in me sometimes misses the relief that comes after the torture!
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Breathing and speech are the most important to me, too. I just recently started using speech-to-text on my MacBook, and it is such a workout, haha. But I love it because I’m basically accomplishing two things at once by exercising my lungs and being productive with all the work I have to get done.
What type of exercises/stretches does your PT do?
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We do mostly arms, legs, neck and breathing. The neck is my favorite because I can do it without much help and I don’t feel entirely useless haha. As for stretches, it’s basically every single joint.
Speech-to-text is my new bff too, especially when I’m too tired to use my hand!
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Every night just before bed I get my support worker to stretch my arms up above my head for a minute and then rotate them for a couple of minutes.
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Yesss, I love a good arm stretch. I also just started massage therapy this past week. I did just 15 minutes to start to see how I would feel, and I loved it. My arm felt so much looser afterward. My cousin is doing it, and I feel a little funny having him do my whole body. So he’s just going to focus on my neck, shoulders, and arms – basically where I need it most.
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Here’s a polished and professional rewrite of your message, keeping your voice and enthusiasm intact:
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I’m a very active person. I handle my own yard work and take care of most home improvement projects myself. Just yesterday, I walked over four miles while mowing the lawn—which definitely counts as exercise! I also do light weight training, though I’m not in physical therapy. At 60 years old, I’m high-functioning and full of energy. I truly believe that staying active, regardless of how much is essential for longevity and overall well-being. I’ve been on Evrysdi for three years now and recently completed a clinical trial focused on muscle growth. There’s no doubt that promising advances lie ahead for all of us.
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Let me know if you’d like to adapt it for a specific audience, like a Facebook post or a doctor’s update.
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Who is this for, Jeff?
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