81 Comments
Nov 23, 2021Liked by Gavin Giovannoni

With the support of friends , a purpose built mounting block, a neck strap that I can grab onto and a very patient old horse , I manage low level horse riding a few times a week . If I miss out , for any reason , I feel the the difference in my legs almost immediately.

Even being around horses is calming . It’s a recognized form of therapy and one that I’d love to see being made more accessible to anyone interested.

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Nov 23, 2021Liked by Gavin Giovannoni

I was under the care of Dr Matt Craner (RN) for many years. We were idly talking about cycling across the US (he has, I wanted to cycle across Canada) and he suggested that one reason I have done so well after 28y is because I have exercised through most of it.

I can’t cycle anymore (eye issues) but I climb and walk a lot. The greater the time I don’t exercise the worse I feel.

Climbed Scafell Pike a few weeks ago!

Nothing compares to that worn out feeling after a good session.

It is hard to get fit and harder still to stay fit with MS.

Dom

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Nov 23, 2021Liked by Gavin Giovannoni

Every day something: I have a stationary bike, an elliptical trainer and weights at home. During pandemic no 3x a week swims in pool but outdoor swimming also in cooler waters.

I used to play competitive tennis as younger. When i stopped playing about 10 years ago due to coordination issues I switched to running. When that became impossible I switched to swimming. Now I took up "immobile" tennis again, playing with a good coach when I only need to take 1-2 steps per stroke. Wheelchair tennis on the agenda soon also.

I'm absolutely certain - so is my neuro - that sports has been very beneficial for me (diagnosis -93). All coordination that's involved in technical sports also creates new synopses in the brain - definitely a huge plus.

I really hope I can go on exercising forever, and not make my condition worse by doing it! That was scary news to me!

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Nov 23, 2021Liked by Gavin Giovannoni

I was diagnosed with RRMS 3 years ago aged 54 following left side numbness. At the time I had no real understanding of how RRMS worked. I just heard the words ‘multiple sclerosis’ and was sitting there internally trying to process the diagnosis and assuming that I’d never return to the sports and activities that I loved, while the neurologist was simultaneously explaining that he expected that I’d be back running etc. before too long. At the time I just couldn’t reconcile what he was saying with what my body was doing. I was beyond delighted when the relapse passed and I did manage to do pretty much every physical activity again. I know that I am very fortunate and that things could change at any point so I try to keep as active as possible and not take anything for granted.

I am also fortunate that pre-diagnosis I was already very active, running, playing volleyball, doing yoga, boot camp, personal training sessions and enjoying hillwalking. So for me there was the general delight at being able to return to those things. I am not at 100% of where I was prior to diagnosis. My proprioception, balance and reaction times are affected, not sufficiently to be noticeable to the observer, but sufficiently for me to know that I can’t play volleyball as well as I used to, or run as smoothly (of course there could be an age effect creeping in there irrespective of MS). But I have seized the opportunity to also start new things that I’ll enjoy, that I don’t have a past history at to compare with, and that will hopefully be positive for brain health. I do think that for many of us an MS diagnosis makes us sit up and take stock of life and live more in the present. So as well as continuing with my previous activities, since diagnosis I’ve started table tennis lessons (having noticed that people play in the local league at very advanced ages and with various health conditions), I joined an adult ballet class (fantastic for balance, core and coordination) and, best of all, I took up ice skating which I’d always fancied trying but never had the opportunity to do as a child. I have personal lessons at a quiet time on the ice. It is hugely challenging as an adult beginner and I am trepidant and slow but I have the world’s most patient coach and I absolutely love it. I do general balance exercises anyway, but decided that skating would be a fun way to help with balance. And (at my level anyway) the temperature at the rink removes the MS problem of possible overheating. As a middle-aged woman with MS I’m beyond caring what anyone else thinks but what is fantastic is that during my lessons all the other skaters on the ice (decades younger than me and training at competitive level) and their coaches are universally supportive and inclusive.

I recognise that I am extremely privileged to be able to access all these activities both in terms of time and affordability (I work part time from home which is very MS-friendly). While I would far rather not have MS, I love the new exercise opportunities that it has brought me and will never take any physical ability for granted again.

ProfG, I do hope that you are able to get back to running in due course and thank you so very much for all the useful information that you post. I read everything but am not a great one for interactive responding online, however I just had to reply to this one on exercise as exercise is without doubt the tool for countering MS which brings me most joy and positivity.

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Nov 23, 2021Liked by Gavin Giovannoni

I gently suggest that diet and exercise, though crucial, are rather more than 'simple lifestyle interventions'. Unless a PwMS has always loved physical activity and healthy eating, it can be really tough to make changes. I took moderate regular exercise pre-MS but was scared into making the big changes by a neuro physio after my dx. She warned about the likelihood of impaired movement becoming permanently lost if the memory was lost in the brain stem and introduced the idea of 'maintaining function'. Perhaps not quite as relevant for those with sensory-only symptoms but it struck a chord with me. Regular exercise has certainly worked (swimming, Pilates) since dx in 2003, but when the pandemic started the pool and health club closed permanently. In desperation I arranged for one of the staff's personal trainers to give me fitness sessions at home. The day he was supposed to come was the day lockdown began. The only possibility was to do it virtually: since March last year I've had three sessions weekly via Messenger and cannot believe the improvement in walking ability and overall strength (this is compared to my previous four aqua classes a week), plus the fact that I am now a different shape, having lost the stomach and hip fat. I was started on weights (2 baked bean cans) and have progressed to 4k dumbbells, soon to have 5k ones. I put the improvement down to a far more targeted approach. It's cardio but also balance and strength work, with one session entirely on mobility, so it's a sort of enhanced physio session. To pay for it I've had to make economies elsewhere but it is so worth it that I wouldn't consider giving it up. This is for life.

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Nov 23, 2021Liked by Gavin Giovannoni

I have always been aware that exercise is beneficial and have done various sports over the years. I have been lucky that I was diagnosed with MS in my late 60s and have recently taken up golf when I haven’t been able to continue with sports involving running.

Having not skied for 2 seasons due to the pandemic I am aiming to go this year although my ageing knees are concerning me. I dread being immobile and will push myself to remain as active as possible.

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Before being diagnosed with MS, as well as being an avid fan of the athletics Heptathlon, competing at a national level & even being on my National Multi-Event squad for the Barcelona Olympics; I studied Sport Science at university.

I cannot stress the importance of exercise for general wellbeing & it’s importance with trying to deal with MS.

I understand that the difficulties pwMS have on every level - Be that Physical, Psychological, Motivational…… but everyone can & should do something.

It certainly should be part of the standard MS care package.

Our Neurologists do their utmost to ensure that our MS is treated in the BEST medical way possible - We can help them & ourselves by looking after our physical selves as best as we possibly can no matter what our physical ability / disability ♥️♥️♥️XXx

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Nov 24, 2021Liked by Gavin Giovannoni

Exercise made me oblivious to MS for at least 12 years - I just played through it. My MS (still undiagnosed) became progressive (in retrospect) for another 3 years before it felled me: I was doing high intensity workouts 3x a week and just ground to a halt. After a break in which I seized up, I got into Pilates and then yoga, which kept the machinery moving even though running was out and walking becoming shorter. Then we got lockdown and my 3x a week trips to the gym stopped. In terms of fitness and mobility, lockdown did untold damage to my mobility and only now am I able to apply myself to exercise & flexibility again in any concerted fashion.

Only difference now is that with MS, exercise now has to be balanced against fatigue - something which your article doesn't touch upon. For me it has become a bit of a knife edge and one which I usually get wrong! Exercise prioritisation (shopping, cleaning over yoga, walking or cycling) rather than a mere inclination to participate is the order of the day. However, I'll stop there as fatigue v exercise prioritisation is worth a piece of its own.

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Nov 23, 2021Liked by Gavin Giovannoni

I have relapsing remitting MS and was diagnosed in 2002. I cannot cycle on a 2 wheeled bike due to poor balance. I go to a cycling group called Wheels 4 All which welcomes people of all abilities even including blind people. I have been going once a week for a few years now. (Except in lockdown when I walked instead.) I use their tricycles. I started with probably one lap. I can now cycle 10 miles in a session. I have noticed my strength and physical endurance has improved remarkably. My need for a walking stick is very rare now. It's not just the physical exercise that is beneficial, it's the social side too. It's like a cycling family. I also go to chair yoga once a week, which I find very useful for flexibility. This is mostly MS users. This is also sociable. My husband on the other hand, runs on his own and much prefers it that way.

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Nov 23, 2021Liked by Gavin Giovannoni

I am a Dutchman , 71 years old with pw MS

I excercise 3 times a week and i feel it helps me to slow down my MS nevertheless my neuro do not advise me to do so.

Your mail encourage me to go on with my exercise .I thank you for it.

Kind regards ,

Albert F.

.

I q

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Nov 23, 2021Liked by Gavin Giovannoni

In the months following diagnosis early this year the only thing that kept me going was being able to do daily hit sessions on an indoor bike; that half hour on the bike could switch my thinking from ‘life was over’ to ‘there could be hope’. I had been a regular runner pre-MS, and was struggling to walk.

Now I am back running slowly, just completed the couch to 5k, and it is an amazing feeling to be able to run again. Besides running I got into road biking a few years back and I am so thankful that this has not been affected by MS so far, its equally addictive and I think it has all the meditative qualities of running once you can get out onto quiet country roads.

For symptoms I also use running and the cycling for nerve pain, and a short sharp hit session on an indoor bike has been really useful to lift fatigue.

I hope you will be able to run again soon, or maybe cycling as a substitute, and that book you mention is great, I read it a few years ago! Love the photo!

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founding

I wouldn’t still be upright & mobile if I didn’t exercise aerobically & anaerobically very regularly

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Nov 24, 2021Liked by Gavin Giovannoni

I fortunately love exercise, I was a competitive middle distance runner when I was younger. Now at the age of 53 I have arthritis in my left knee (probably more to do with compensating for a weak right leg at times). I now cycle 3-4 times a week. I’m sure that exercise has had a massive role in helping me with MS, both psychologically and physically. My MRI scans show multiple lesions on my cervical spine and I have had relapses where I have had difficulty using my right arm and right leg for several months (fortunately I had followed a career in exercise so could rehabilitate myself). HSCT has stopped the relapses, I’m hoping that the exercise holds back the degeneration.

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Nov 24, 2021Liked by Gavin Giovannoni

Exercise is my legal drug! And has been for my whole life. It's making me happy :-) So glad that I have my Zoom exercise classes, they keep my sane :-)

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Nov 23, 2021Liked by Gavin Giovannoni

As a person with Secondary M.S. exercise is limited by my lack of mobility and need to use a rollator to mobilise, so limited in the level I can exercise. However, I use an Oswestry Standing Frame 3 times a week but this does not appear to give me the opportunity to maintain the muscle tone in my legs or assist with foot drop. Used to take part in a lot of sport pre M.S., ran half marathon, skied, skated, aerobics and I do miss it.16 years on now with M.S. and still standing...just! Newsletter really insightful and helping me improve my understanding of M.S. Thank you to the Prof.

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Nov 23, 2021Liked by Gavin Giovannoni

Are you still not able to run? If this due to the accident? Do they think you might eventually recover sufficiently to run? If not will you consider a different exercise?

Though I am of course deflecting as I know I should exercise, have every opportunity to do so, and still don't.

Perhaps they could create a drug that makes people want to run / exercise? That would be the healthiest thing. As Annika and Brid show in their inspirational responses, if you want to exercise you'll find a way to do it despite the difficulties.

My difficulty seems to be the deep down, even though I quite enjoy it once I'm doing it, I find every excuse not to exercise.

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