56 Comments
Jun 19Liked by Gavin Giovannoni

I appreciated your article about exercise and MS. I found a local (southwest Chicago suburb) health club that actually had MS yoga and MS Aquasize. When it almost closed, I started a nonprofit to help others afford the club and to provide additional programming. When Covid closed the club, I knew many of us couldn't stop exercising, so we contracted with our great and certified instructors to provide virtual exercises. Now Working On Wellness Foundation (www.workingonwellnessfoundation.org) is committed to providing FREE full sessions of exercise, four days a week. Mondays-chair yoga; Tuesdays - seated MS exercise; Wednesdays- strength training (which always includes cardio and HiIT); Thursdays - range of motion (based on BIG, powerful moves with brain work and cardio). Our Live on Zoom sessions always start with at least 15 minutes of social time to combat the social isolation that we know many of us experience. Those live sessions begin at 10 AM Central US Time so 3 PM GMT 0. We do have a couple of people from Europe join in almost daily. BUT we also post every instructor portion to YouTube so people can work out any time they want. See www.workingonwellnessfoundation.org to subscribe to get all links, or to contact me.

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Jun 19Liked by Gavin Giovannoni

Thank you! I just filled out the contact form to receive the links. I have limited funds (on disability) and no reliable transportation, so this is a perfect solution for me.

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Jun 19Liked by Gavin Giovannoni

I went from someone who could only last 3 minutes in a HIIT class to someone who could last 45 minutes in a class and really enjoy it (it took a year of consistent training though).

I always thought I was a person who hated cardio, but now I realise that was just my limiting belief about myself. I encourage everyone to give it a chance, even if it is not "your thing" (and it might even become your thing with time).

One thing that helps me stick to it is to do classes with a friend/group of friends. When you do it with someone else, the shared struggle makes it feel less like a struggle and more like fun.

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Jun 19Liked by Gavin Giovannoni

My local council introduced an exercise programme for people with chronic conditions. I now do three sessions a week - gym, swimming, circuits - with people who have heart conditions, waiting for hip/knee replacements (or recovering from surgery), Parkinsons and a variety of other things. I've graduated from seated classes to weights in the gym and (at 63, 22 years since diagnosis, and absolutely no gym-loving history) I'm starting to get really cross if I have to miss one! And the social aspect is really important too - laughing at ourselves (and with others) is a great medicine

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Jun 19Liked by Gavin Giovannoni

On diagnosis 23 years ago I was advised to pack up running gym etc in winter as I’d need to conserve my energy to fight off viruses ! I thought What a load of BS. So I continued. Glad I did.

I’m now about 6 on EDS. I’ve tried over the years to exercise to MY ability. I have invested in a mountain trike. You can see it in my photo. It has electric assist. It’s like a heavy rowing machines. I can only do about 2 mns without assist. Then rest, then go again. Depending on terrain depends on how far I go.

I recently had an FES fitted on my left leg. This has been game changing. I use a scooter or chair less. These are Post code lottery and my MT very expensive. So there’s a lot of extra barriers for MSers into exercise. The older we get the harder.

I was recently part of a trial at our local physio department. It’s based on HIIT. 2 minutes. For me 2 minute standing exercise followed by 2 minute seated. We did timed walking. My speed had doubled, so FES and exercise helped.

I think we all just do what we can to our ability. Look for things in the house you can use. I put 2 chairs opposite each other and try and march for 2 minutes using them for balance. At the start and end of my 6 week physio HIIT. My balance hadn’t improved. I still fall backwards in standing. Fatigue only improved on my weak leg with FES. I’ll keep going for heart health though.

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Jun 19Liked by Gavin Giovannoni

please consider mentioning online esp ms oriented exercise classes!

getting to classes uses so much energy and time!

when you can get expert input, and friendly groups from home (leaving time and energy for other things)

ms-uk does twice weekly 3 graded classes

from usa, free videos from trevor at ms gym completely sorted my first steroid-treated footdrop in a few weeks - uk physios told me to rest, but since i had to move house, i ignored that. still using free new videos regularly produced

gretchen at msing link does excellent clear functional ms-aimed exercises. theres lots free - but i pay for dance, brain gym, expert talks, regular q&A, weekly challenges and more.

i just initiated (first zoom coming) a positive meetup w msing link for those of us diagnosed before DMTs existed - theres lots of us just getting ignored !

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Jun 19Liked by Gavin Giovannoni

I used to do group classes (weight training) with healthy fit people 3x a week, it was great, I was the slowest and weakest but it didn’t matter to me. Now after more worsening and edss increase, I don’t go to these group classes (I limp when I walk and my strenght is low), but I swim 40min x 3 times per week, and it really feels amazing after months of doing nothing.

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Jun 19Liked by Gavin Giovannoni

Exercise has changed my MS life so powerfully. I was diagnosed 14 years ago and I always exercised around 30 min 4x per week - while that helped the decline, I was still declining. About 4 years ago, I added 3 hours of strength training to that, and again while it helped my muscle spasticity, my symptoms were stable, but still there. Around then I also did my first round of alemtuzumab (2019 and then in 2021 due to pandemic). Alemtuzumab helped reverse some of my symptoms, but then they started to come back around a year later, but the kicker is that exercise made them go away again. And it's a lot of exercise, much more than the recommended amounts. I now do about 4-6 hours of zone 2 per week, 3 hours of strength training, and 30min of HIIT per week and I don't have any symptoms, no tingling leg bilateral pain that used to bother me everday, no muscle spasticity that used to prevent me from doing activities. It took 14 years to build up to this point, but last week I climbed Denali - a 21 day high altitude climb of a 6190m mountain in Alaska. I never could have done this without alemtuzumab + exercise.

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Jun 19Liked by Gavin Giovannoni

Thank you, Prof. Gavin, for discussing this question that I always ask: if exercise is so beneficial, why is it not included in the MS treatment procedure?

Based on my experience, in addition to regular exercise, dancing can be particularly beneficial for improving balance and mood in MS patients.

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Jun 19Liked by Gavin Giovannoni

All great if you’re a person who likes exercise - as far as I’m concerned any movement is better than none and walking my dog three times a day, living in a town house with a living room on first floor and using stairs, as well as practising other weight bearing exercises is as much as I can manage. I’ve tried HIIT and I am in so much pain for days afterwards because of spinal cord lesions it’s not for me.

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Jun 19Liked by Gavin Giovannoni

Exercise is good for you, I do not disagree but sitting down exercises are not so easy to find on the internet. Sitting down exercises are essential because I can only lift one leg and I cannot stand or walk unaided.

My MS has reached the stage where it takes me 3 hours a day to get up, washed, dressed, breakfasted and done daily Peristeen (anal irrigation). Add to that keeping the kitchen tidy, shopping for food, cooking it and washing up. Now some one is suggesting 16 - 30 minute of HIIT exercise and a recovery period is necessary This extra does add an hour to daily essentials. Oh yes I also want do my own thing such as seeing friends, going to a museum or attending medical appointment.

I do think I need to buy a static bike that I can cycle maybe when watching TV but that is multi-tasking which is very difficult. I do worry that I do not take any serious exercise but I am on the go all day.

Joking aside I do lead a busy and active life, I use a walker in the flat I get out of the flat every day on my mobility scooter. I think a static bike is an excellent idea but life is a compromise and that must wait for a while

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Jun 19Liked by Gavin Giovannoni

Thank you, Thank you, thank you...

In response to Exercise, Exercise, Exercise as delighted to see you cover this topic (again) on MS Selfie.

Here's my exercise journey, for anyone who might find it helpful...(and it hasn't been an easy one)

Exercise has changed and continues to shape my life - particularly since dx in 2017.

When I was first dx, I decided to try running as a gym membership wasn't practical back then (with 2 small children) fitting in runs was a much easier way to create a habit.

I joined an online facebook group of mums (all non ms people) and it became my tribe and exericse community. I really couldn't run well - I started running on a treadmill, a few seconds of running following by a few mins of walking and gradually built it up over weeks intil I could run continuously for 10 minutes. Then, over time, that grew to 25 mins and so on. A few monthslater I managed to run 5k (in around 45 mins) and at that point decided to brave runing outdoors - that went ok so I started increasing my distance to 10k and at that point I began entering 10k races. I was slow - and sometimes would end up in the last few finishers - but the point was that even if I didn't finish well (and I had a few runs where I tripped and fell) at least I started and the benefits I got from running were so over and above the physical ones.

After compl;eting a number of 10ks I then trained for a half marathon which I competed in 2019 - enthused, training began for a marathon which sadly I didn't complete because covid-19 shut everything down 2 weeks before my victory lap - but I did achieve running distances of 19 miles in my training runs and I'm so prud of that - even though I would be out running for 5-6 hours to achieve that distance.

During the pandemic running distances became more tricky - my bladder issues meant I would always have to work my running route around frequent toilet stops and with everything shut down, this became tricky and I became well aquainted with nipping behind a few bushes!

Twords the summer of 2020 I began tripping more on my runs and over time found that my gait was changing. I gave up running anything more than 2 miles at the end of 2020 and now I don't run at all - I had a couple of nasty falls where I ended up up fracturing bones and so I decided to try something else.

At that point I joined a gym and started weight training, circuits classes and HIIT. I've met people I otherwise wouldn't have met (none with MS) and made friendships.

I am limiited by some of the things I can't do - but it helps in so many ways. And I am one of the few people I iiknow with MS, who is very rarely affected by MS fatigue.

I worke out every day and only miss a day if I'm away from home or too busy. On those days I make myself walk (which I have to do in stages and with rest)

Exercise is so important to me in managing my condition, and I'm currently training to be a Level 3 PT so that I can help other pwMS create the habit and get the benefits I get from it that I find so helpful.

I think the best exercise is one you can do as part of your routine - so you do it often - and something that you find enjoyable either by being distracted by something else (!) or working out with other people (I listen to podcasts or music all the time when I'm exercising)

Really hope this inspires others - I'm always inspired reading other pwMS share how they exercise.

After dx I had taken an evening course as a gym instructor - more for my own benefit and to vhelp manage my ms - but since the start of this year I've started training as a Level 3 PT and I see my future area of work being in physcial activity for people with MS.

Exercise is so important to me in managing my condition, that I am choosing

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Jun 19Liked by Gavin Giovannoni

100% agree.. exercise is so so important for my mental health and physical health. I have quite advanced MS (around a 6 or 6.5 on the EDSS) but I still force myself to exercise daily and it helps me hugely. My balance is awful so I barely walk (wobble with 2 canes) and riding a bike is no longer possible either but for now I can swim and I can ride a stationery bike and I can do HIIT with weights and push ups or whatever to increase my heart rate while not falling over .... all of this is done from home to reduce the effort of going to the gym etc but still I find it hugely important and I am so grateful that I can do these things because I know I won't be able to forever.

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Jun 19Liked by Gavin Giovannoni

I have found doing Nintendo Ring Fit a great form of HIIT exercise, and it's fun too so you don't really notice you're exercising. It has a game format.

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Jun 19Liked by Gavin Giovannoni

I've been doing Pilates for over 20 years now and it has been a game changer for me. Prior to that, I didn't do much as exercise wasn't encouraged when I was first diagnosed. It's proved its worth over and over to me. Sometimes, after being Botoxed, the clinic sends me to a physio. I look at what the physio wants and I'm gobsmacked by how futile the offering is. All I want to do is go back to a serious Pilates instructor and do some real constructive work.

I don't do HIIT because it doesn't look as appealing to me as what I do. Depending on where I'm stiff it also may be counterproductive. Pilates is about building strength when the muscle is elongated so it's eccentric muscle movement. Anything that relies on concentric muscle movement won't help someone whose muscles are already contracted.

I never run out of puff and know I'm generally fitter and stronger than most people my age who don't have MS.

I do an hour 3 times a week. If you do it once a week, you may as well not bother as the benefit comes from repetition.

I understand the theory of HIIT but I think I would be bored to death compared to true Pilates ( I don't mean just mat work or just reformer. There's a lot more to it.)

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Jun 19Liked by Gavin Giovannoni

I have always exercised. Over the years I have found what works for me. I hoola hoop almost every day with a weighted hoop. I do a class with weights once a week and do weight sessions at home using the HIIT formula (although weights above my head with my left arm are dangerous and some days I also fear for my toes). I also do pilates but my right side is advanced and my left side is a beginner still.

Unfortunately as far as benefits go exercise counts against you because you can do it. It's not a positive that you are trying hard to prevent decline. I find exercise much easier than trying to clean the house, or cook or do up buttons.

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Benefit questions focus on what you can’t do. It’s always a dilemma. I agree it’s difficult.

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Jun 19Liked by Gavin Giovannoni

I have trained in Taekwon-do for 10 years. I am 52 and diagnosed with MS this year but with a bundle of symptoms (and MRI showing lesions) for a number of years. Running has become impossible (although side running or skipping is ok).

I am convinced the Taekwon-do training inhibited progression of MS for a long time, and some neuro-physios seem to a agree.

Here is my confusion: I have been recommended not expect to do such ‘elite’ sport’ (sadly by a neurologist) & some physios recommend not to exercise so much (i also try to do weight training and ms balance classes) that I need to sleep after. But I need to sleep in the day if I exercise or carry out my ordinary work (which is very intellectually demanding).

Is there really harm in working hard enough (physically or mentally) to need an hour + nap to recover?

I am utterly persuaded that both the challenges are better over the longer term. -?

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Jun 19Liked by Gavin Giovannoni

Unfortunately some doctors and physiotherapists are not up to date or confident enough to discuss exercise with people with MS (or any other condition).

As a physio who has worked with people with MS for over a decade and runs functional fitness classes for people with neuro conditions, my advice is to trust that your body will tell you if something is ‘too much’ or not.

To me, it sounds like the hours rest required is well worth it for the benefits you gain from exercise. If the pros didn’t outweigh the cons, my guess is that you would have changed what you’re doing…

I think we need to give people credit that they know their bodies, don’t want to make life difficult for them and encourage all exercise, even if it is something we aren’t familiar with.

Keep it up!

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Jun 19Liked by Gavin Giovannoni

Thank you! It’s helpful to have that reiterated. I don’t know you are part or neuroheroes, but that is a brilliant initiative (I do one class a week, and learn specifics about issues quite naturally through it.)

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Jun 19Liked by Gavin Giovannoni

I know of neuroheros. A great group really facilitating exercise

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