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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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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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I also believe it fulfils a mental health need: having done my best to exercise, I feel more able to accept the uncertainty of the condition. Whatever happens, however bad it gets at a later stage, I'm not going to be beating myself up because I've done what I can.

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Absolutely, that feeling of doing what one can, while one can, is a really positive thing.

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I maintain that if/when it all comes crashing down I want to be in the best shape possible.

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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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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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Ballet and/or pilates must be great for pwMS as there is an emphasis on so many muscle groups plus balance, strength and flexibility. You probably already know about it but there have been initiatives by ballet companies to run classes for people with neurological conditions. There are also now plenty of adult classes available to all which cater for complete beginners of any age, if these are suitable.

https://www.mssociety.org.uk/what-we-do/news/royal-opera-house-ms-residential-ballet-group-take-rehearsals-online

https://www.youtube.com/watch?v=jhoKpG6br84

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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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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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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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Such a good point re balancing exercise and fatigue. I have to try and get a good night's sleep/decent daytime rest or nap before sport. When other people see PwMS while exercising they probably assume we must therefore be doing fine with MS, without realising just how much time is required to not just get out there but deal with managing the associated fatigue and other invisible symptoms.

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Sounds eerily familiar. I was diagnosed in the second half of 2019, went on ocrelizumab before Xmas and was objectively in good shape (despite EDSS 3ish) until the lockdown. Not so much anymore despite trying my best at home 😔

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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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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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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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Regarding my running. The main impact to my pelvis when I had my accident last year was through my right hip. Although my fractures have healed running causes severe pain. The cause of the pain is not obvious, but could be a post-traumatic capsulitis or a bursitis over one of the fracture sites. I have recently had steroids into the joint and I will see how this helps. I also have the option of having a hip replacement. Although you can run with an artificial hip is not generally recommended.

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I get same kind of flow kicks nowadays from swimming that I used to get from running. I did a technique course to become a smoother swimmer and the feeling of being immersed in water, hearing soft sounds through water, is amazing. I used to loathe swimming, and if I hadn't got MS I never would have found the bliss of it. Please try if you already haven't!

Fingers crossed you'll be able to hit the trails soon!

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

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I was diagnosed with RRMS 17 years ago, & I can safely say that regular WBV (Whole Body Vibration on a Vibration plate) is the single most effective way of enabling me to keep my muscle strength.

It doesn’t seem to matter how my MS is, as I can go from just standing on the vibrating plate to ‘just wake my muscles up’, to passively exercising on the plate or actively exercising on it (my vibration plate has supports to hold on to as my balance is appalling) - this works very well with the fickle nature of daily MS physical capability fluctuations.

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For aerobic exercise, as my balance is SO bad, & I have lost the ability to run, I do non weight bearing exercising, like the exercise bike or the rowing machine.

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I think rowing machines are great - if it's too icy outside in winter or I don't feel my balance is up to running I really enjoy the rowing machine as an alternative.

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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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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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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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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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Yes, I am using an exercise bike and may take-up cycling outdoors. But once you are committed long-distance runner there is no substitute for running; ask any runner.

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Well, that's the truth, but sometimes you have to decide to like swimming better 😅

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