Jenny Exercise has been on my brain recently. I have been reading articles and watching a lot of YouTube videos about the importance of exercise in MS as a way to maintain (and maybe even regain?) function. I am conscious that there can be a pressure to ‘use it or lose it’ but I am also aware that the way that my body moves – with its wide, abnormal gait – needs help to move properly again.
In this video clip by LivedHealth, Professor Gavin Giovannoni says,
I personally think that exercise is the most underprescribed disease modifying treatment we have. Full stop.
He cites the positive impact it can have on our sleep and mental health, as well as our general physical health. I know that this is true but, as someone with progressive MS, I have sometimes thought in the past that ‘it is too late for me to see any real benefit’.
Enter Elin, who had HSCT for her MS ten years ago. Although she has found that her MS has progressed since the HSCT, exercise has allowed her to maintain and even regain some function that she has lost. I have to admit that this video was like an explosion going off in my head; it made me realise just how much exercise may help me if I was to be consistent with it:
The section from 2;52 – 3;02, where you see the changes in Elin’s leg function in a year, particularly blew my mind. As someone who has also had HSCT but is still experiencing progression of old damage, it has made me make a renewed effort to ‘be as well as I can be’ with MS.
My Exercise
So, what does exercise look like for me? Well, I lift weights to keep my arms strong (I do this when sitting in a chair), try and do squats to strengthen my legs (holding on to a chair) and have been a member of The MS Gym for a couple of years. Regular readers will know that I enjoy restful, restorative, close-to-the-ground yoga as a way to not only stretch out my sore muscles but also focus on my breath, aiding my mental health. I don’t do all of these every day, but try and do as much as I can.
I decided on The MS Gym after hearing about it on an HSCT Facebook group and following a few free videos on YouTube. The paid membership offers me programmes that teach my body new ways to work around my damaged nerves (neuroplasticity) and there is a helpful Facebook group where I can ask questions too. I feel stronger as a result and I like the fact that it offers videos for exercises that help my specific MS symptoms (e.g. foot drop and extensor spasticity). I sound like an advert but this is purely my experience and I am not getting paid to say this!
Knowing that the more I move correctly, the greater the benefit really helps me feel more motivated. Here is Dr Gretchen Hawley talking about neuroplasticity and how it is so useful in MS:
Dr Gretchen also offers a paid exercise membership specifically for MSers via The MSing Link.
How often I exercise is very much dictated by my MS and what it is doing that day. I try and do a bit every day but, as anyone with MS knows, sometimes finding the will to exercise feels like a huge undertaking. I know that sometimes my body just says, ‘hahaha, as if you thought you could do that today’, so I try not to beat myself up if I don’t manage it.
Balancing It All
I tend to find it hard to do even my (very) part-time work and exercise on the same day but I have worked out that if I prep for my speech therapy kiddies the night before I may be able to exercise before they arrive. Luckily, I only make my children’s lunches for school now, they can usually be relied upon to get everything else sorted by themselves, so I try and exercise then.
I have started to view exercise as a non-negotiable part of my quest to be as healthy as I can be with progressive MS. I am aware that it is getting trickier sometimes to find the energy to work and exercise. And, although work is an important part of maintaining my mental health, exercise also helps in that regard. So I know which one I would prioritise if/when I have to make that choice.
I used to enjoy running and really working up a sweat; it used to make me feel alive. I still get a tinge of sadness and jealousy when I see people running down the road past my mobility scooter or see friends (quite rightly!) celebrating their sporting triumphs on social media. But I have to remind myself that I am still moving, still making an effort. I have adapted my exercise to what I am able to do and I should feel just as triumphant when I achieve that. It would be easy for me to just not bother, to admit that my progressive MS has won. But, whilst I am still able to move in any way that I can, I will.
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Do you manage to exercise? Has it changed as a result of illness? I’d love to hear. And if you would like to see some of the YouTube videos that I use, check out my playlists here.
Right, I have been sitting down all day, time to get moving.
Till next time,
I like this post Jen. It has a honest and also positive vibe. Good for you to prioritize exercise with a positive mindset.
Thanks so much Henriette!
Thank you for making this post. I feel so guilty for not exercising enough. I also used to run because it was so easy. Now I have to think about it and it feels hard. It’s so hard to be consistant, I have never managed it 😒
“I have adapted my exercise to what I am able to do and I should feel just as triumphant when I achieve that.”
Yes…..yes you should. Well said
Thanks Ben!
I think that the only reason I am a bit more consistent these days is because I pay for it (MS Gym)! Haha, in all honesty, I think that it is that, but also my worry that if I never did anything, I literally wouldn’t get off the couch when the kids are at school. I started by doing some stretches, they made my legs feel so much better that I thought I should try other exercises too xx
As always you are a wise and self-aware person with MS and I’m glad our paths crossed.
Although I can’t afford a membership to MS Gym or Gretchen’s membership I do know how important exercise is. I wish I had more discipline.
At 63 I can feel how the lack of exercise affects my body. Thanks for the pep talk, my friend. So glad you found a mix of things that helps you. xoxo
Thanks so much for your comment Cathy, sorry it has taken me so long to catch up with everyone’s lovely comments. I struggle with the money aspect too and really want to try Dr Gretchen, but it is so out of my price range. I think paying for it is what helps me to keep at it! It is difficult some days though, for sure xx
I love that there are more resources for MSers now, including support for exercise. It sounds like you’re on the right track of finding what works for you, Jen. I don’t do exercise other than walking and general day to day stuff at home, but I don’t have MS. I get the sadness you do when seeing people out running; I used to run too, just casually, and when my body started falling apart I decided to get rid of some of my exercise stuff (exercise bike, running clothes) and it hurt like hell. I know exercise isn’t for everyone but I’m a firm believer than any kind of moment can be good for our bodies, even small amounts when you can.
Viewing it as a non-negotiable for your journey to the best wellness level you can get sounds like a good idea; go easy on yourself when you’re not up to it though, you can only do your best and every weight lift or squat will add up. I think you’re doing brilliantly! xx
Thanks Caz, I definitely go through times when I make myself feel guilty for not doing it… I know that I shouldn’t though! I was the same when I had to get rid of some of my exercise stuff too (e.g. I had a mini trampoline). It hurt like hell when I realised that I couldn’t even jump with a trampoline. xx
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