Does MS exile you from the everyday of life?

D

Barts-MS rose-tinted-odometer: ★★★★★ (Sunday or Summer orange #f99f00)

Exercise has emerged as a safe, effective, low-cost, non-pharmacological intervention for managing disability experienced by pwMS. Despite the evidence, it is the most under-prescribed and under-utilised disease-modifying therapy we have at our disposal. 

Exercise promotes improvements in aerobic capacity, muscular strength, balance, walking performance, and gait kinematics, whilst it also reduces fatigue, depression and anxiety. 

The meta-analysis below asks whether exercise training increases participation in everyday life, such as carrying out daily tasks and self-care, walking and movement, interpersonal relationships, and recreation and leisure. Are you surprised that the answer is YES

EXERCISE INCREASES PARTICIPATION!

So for those of you who are letting ‘MS exile you from the everyday of life’ I would advise trying exercise to help you re-engage with the everyday. 

Do any of you have any personal anecdotes that you can share with us about how exercise has changed your life? 

Edwards et al. Exercise training improves participation in persons with multiple sclerosis: A systematic review and meta-analysis. Review J Sport Health Sci. 2021 Jul 26;S2095-2546(21)00089-2. doi: 10.1016/j.jshs.2021.07.007.

Objectives: While previous studies have examined the effects of exercise training on other International Classification of Functioning, Disability and Health (ICF) component levels in persons with multiple sclerosis (MS), the effects of exercise training on participation remains unclear. The objectives of this review were to: (1) systematically characterize the use of outcome measures that capture participation in exercise training studies; (2) quantify the effect of exercise training on participation in persons with MS.

Methods: A search of 6 electronic databases (CINAHL, Sport Discuss, EMBASE, MEDLINE, Cochrane Central, Scopus) was conducted to identify controlled and non-controlled trials involving exercise training and participation in persons with MS. Search strings were built from Medical Subject Headings (MeSH) and “CINAHL headings”. ICF linking rules were used to identify participation chapters and categories captured. Meta-analysis was used to quantify the effect of exercise training on participation in randomized controlled trials (RCTs) comparing exercise effects to no intervention/usual care.

Results: Forty-nine articles involving controlled and non-controlled exercise trials were included in the systematic review of outcome measures. Sixteen different outcome measures that captured all 9 participation chapters and 89 unique participation categories were identified. Across these 16 outcome measures, “mobility” was the most represented participation chapter, with 108 items. A subsample of 23 RCTs were included in the meta-analysis. An overall effect of 0.60 (standard error = 0.12, 95% confidence interval: 0.37-0.84, z = 4.9, p < 0.001) was calculated, indicating a moderate, positive effect of exercise training on participation.

Conclusion: The current review provides information that can be used to guide the selection of outcome measures that capture participation in studies of exercise training in persons with MS. Exercise training has a positive effect on outcomes that capture participation, providing further evidence for the role of exercise training in promoting and maintaining engagement in everyday life.

Keywords: ICF framework; exercise training; multiple sclerosis; participation.

Conflicts of Interest

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General Disclaimer: Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of the Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust and are not meant to be interpreted as personal clinical advice. 

About the author

Prof G

Professor of Neurology, Barts & The London. MS & Preventive Neurology thinker, blogger, runner, vegetable gardener, husband, father, cook and wine & food lover.

32 comments

  • I urge everyone to exercise and have the radio on and dance and move however much one can… I know it’s one of the things that keep me more able – I also know that if I didn’t eat the restricted way I do I wouldn’t be able to exercise the amount I do. Diet and exercise are the way of life for me to keep going, they work together for me. x

    • that’s interesting – what do you mean by restricted? I feel like if I don’t eat the way I do (WFPB but certainly not restricted in quantity! And carb loading before long races etc) I wouldn’t have the energy to do the exercise I do.

      • Hi Sarah,
        What I mean by restricted – no gluten, dairy, legumes, eggs, yeast, meats (but I do eat fish), sugars and nightshades. I guess I feel restricted but I honestly don’t mind as I feel so much better for it. I read “The MS Recovery Diet” and kept food diaries for months and discovered the foods that were making me feel worse.
        I certainly don’t restrict the amount of food I eat – hehe I am a gannet once I start! This does lead me to eat way toooooo much GF pasta tbh and I do feel even better when I eat less carbs so need to work on my GF pasta addiction….. 🤔 x

  • Dear Prof G.

    Living in a MS nursery home, I witness everyday what this @#$$$@@# desease is capable of.
    It’s inhumane how MS destroys us.

    All of us have fysiotherapy. Even the ones who only can have their feet strapped in the peddles in an automatic bicyclemachine. Just to keep the body in motion.

    Others are strapped onto a table, which will turn so your body stands up straight.

    I think that most of our blogreaders can’t even imagine how devastating this desease can become. Luckaly not for all of us.

    Back to exercise. My own experience is that I exercise every day. Not like an Olympian, but on my own level Olympian style. Since I do this I feel better, less tired and my cognition improves.

    To all readers. Keep busy. Before you know it you can’t anymore.

  • I joined the MSGym four years ago. After trying to manage on my own with spin, yoga and pilates, with increasing loss of mobility, I finally found a programme specifically designed for MSers. My MS progression continues I think, but perhaps more slowly. Life skills…balance, flexibility, core strength, eye function, dexterity are all better making life better even if walking slow and dependent on walker/scooter. A members only discussion group offers a support network if you choose to take part but the planned daily programmes are my lifesaver. Movement is medicine!

  • Well, it’s simple really. MS distances you in so many ways from normality that the aim has to be – close the gap: to look as normal as possible so that you feel easier around people and to have enough energy to accept invitations and return hospitality. Other stuff you may have to compromise on, accepting help and knowing your limitations and I certainly don’t always get the boundaries right. Without exercise, though, I would just be the MS. It’s not even a question of whether you enjoy it or not, it’s survival. Two things I’m very pleased with: pre-pandemic I had a walking holiday (with a minder and using poles), and graduated to walking 3.5 miles on two of the days. The feeling of freedom took me back to life before MS. Since lockdown my sports club with its pool closed permanently and my only option was to start with a personal trainer, doing three sessions weekly remotely from my lounge. The first few months he had me doing exercises with two baked bean cans (450g each). Sixteen months on, I work with a step box, resistance bands and 4k dumbells (to graduate to 5k by November, apparently). I am half a stone lighter and for the first time since dx in 2004 have not needed physio to keep my very damaged hip in working order. There’s banter throughout and a real connection and sense of optimism as he looks for improvements around my issues. This is the regime I know I can’t give up on, and – as with so much in my experience of MS – it only came about by chance!

    • Kay thank you for describing specifics of your program. Sounds like endurance and strength training benefited you a lot. Curious if your trainer incorporated HIIT or short rest breaks for your workouts. I’ve seen the right recipe work on my own body in past but not for my current weak core and tight hip flexors. It’s a combo that makes gaining strength and endurance through exercise challenging. Glad you found resources that benefited you!

  • Even if you don’t feel like exercising,

    If you dont regularly work out

    My advise would be just go to the gym, if you don’t want to work out when you get there then go home but once you get there you easily get into it.

    Or if you can’t stand the gym, get outdoors, take up a new hobby, make it fun, get your family and friends involved, train at home if you can to build your confidence up, a lot of people don’t feel confidant to get to the gym etc, but alot of people at gyms are friendly and will help you out or give you advise if you need it, not everyone starting working out is a top athlete or body builder straight away.

    Don’t make it a chore, try to incorporate into daily routine, and ENJOY it

    Humans where ment to move, sitting around and being sedentary all day is one of the worst things for your brain and body !!

    • Humans are meant to move but MS makes moving difficult or impossible! I’m sorry ANON but your well meaning comment to just make it fun to exercise strikes me as a typical well meaning but I’ll informed comment people with MS hear all the time from friends, families, even doctors. It is demoralizing. The best way for me to describe heaviness and weakness I feel is for you to fill a backpack with rocks and after you’ve strapped it your back, put ankle and wrist weights on. Make breakfast, brush your teeth, Now go to the gym. Do you feel like exercising? Do you lack confidence that your left leg will swing in front and your right leg will swing behind in way you want your legs to move? Never mind that Going to the gym is currently very risky in US states that don’t allow mask mandates. Pre Covid, I took my invisible MS butt to gym And encountered a lot of challenges. Sometimes just getting to gym and changing clothes used up too much of my valuable energy. Warm Outdoor pools heated by sun quickly fatigues the body. A short time on a treadmill or machine heats my core and makes it difficult to stand upright and walk unassisted. I often need to sit for an undefined amount of time afterward in order to walk to my car and then sit again in my air conditioned car in order to feel it’s safe to drive home. Did you know a lot of MSers skip shampooing their hair in shower because ones arms tire and are unusable for some time afterwards. Shaving my legs is a multi event project. And Gym instructors don’t always get it. Once I got called me out over intercom for not putting weights on my bar in a group class. My whisper to instructor that I had MS when she ran over and slapped weights on my bar also got broad casted over the intercom. I appreciated the ridiculousness and laughed. In my experience MSers don’t lack confidence or courage or motivation. What we lack is evidence based exercise programs based on HIIT or fES, strength and endurance training for neurologically damaged bodies.

    • I also have a hip flexor problem and I find laying flat on my tummy on the bed really helps for 15 mins really helps

  • The killer with MS (particularly MS after 5,10,15 years) is the loss of competitive sport – my sports were running 10Ks and a reasonable standard of competitive tennis. I still pine for those days. The feeling of not being “physically fit” is a big loss. I totally agree that pushing yourself to do exercise is very important. I now walk the dog early mornings for 20-25 mins and cycle every day for 25-30mins. It forces me out of the house. Last weekend I took the dog to a different park and forgot that Park Run had resumed. I was doing my bit (for my own health) walking the dog through long grass with a hiking pole, while hundreds of runners were running round the outer limits of the park. I was sad / envious!

    MSers often say that they exercise to try to keep functions from deteriorating further and / or to help slow down worsening. What we really need is an effective medication to stop progression in its tracks. Then you’d find the motivation to exercise who go up exponentially as MSers were no longer exercising just to slow down worsening, but to build up their fitness / strength from a position of stabilisation ie MS related deterioration had been bottomed out.

  • Getting underpants and trousers on can be a good 15 min intensive work out. Compression socks may be too advanced. All in all, allow about an hour, so don’t have any pressing engagements. Keep this up and write it in your diary, so you’ve got proof when it’s time for a rebate.

    • Ha, don’t forget spanx! There’s no universal design for it, thats for sure. It’s a full body workout to get it on and might require a nap afterward. But the mirror seems to agree it’s worth it until you need to use restroom. Best do a practice run before date night.

  • This is so refreshing to read. Instead of feeling guilty about going for long runs and abandoning the family (and prioritising exercise ahead of work sometimes) I now see it as a fundamental part of my MS therapy. In January last year I was so stressed and worn out with work and family pressures that my MS was so dreadful I didn’t think I’d ever run again. Last weekend I ran my 1st ultramarathon. The pandemic came with its own challenges and pressures (home school/work balance for one!) but generally afforded me more time to build my fitness back up. When I run it’s generally the only time I’m not in significant pain, and I find that if I’m having an acute flare during the day a 30 min jog round the block relaxes me enough to dampen things down. The only thing stopping me running this weekend is the enormous blisters I’m still nursing. For Prof G to recognise the value of exercise- both for body and mind, is so refreshing.

  • I’ve fairly recently found the optimalbody programme for MSers run by a former bodybuilder with MS in the states. I’ve done regular yoga for years but I always felt like I should be doing more strength training. I struggled in the past with exercise classes and managing fatigue (pushing and frequently getting ill/wiped out) which since being diagnosed with MS last year I understand the reason! I’m a couple of months into this programme and really enjoying it as well as it being challenging. He puts a lot of emphasis on building brain connections and neuroplasticity. People taking part with variety of levels of mobility but am hearing some great success stories.

  • Having been a swimmer all my life, due to the progression, I now swim a faster than I can walk (EDSS 6.5). Once I’m in the water you wouldn’t know there is anything wrong with me (so I’ve been told). For me, it’s a great stress reliever and I’m lucky that I have a couple of ‘swim’ buddies who have motivated me to up my length count. The socialising afterwards is a bonus. I also use the seated resistance machines in the gym periodically. I know all of this helps me physically, but more importantly is the positive effect on my mental health.

    • Swimming is my main form of exercise too, and like you am perfectly fine in the pool except for being prone to cramp. So good to not be encumbered with some form of walking aid in the pool!

  • Finding a neuro physio that actually knows what they are doing are like gold dust. If any of 6ou have one (old onto them for dear life as they most definately make a difference in daily activity. Xx

  • I do 75 minutes a day, six days a week, of fairly intense training on a stationary bike (including lots of HIIT). I also take a light walk outside every day for sunshine and fresh air and do some strength training. I have no fatigue, no bladder issues, and no heat sensitivity. The benefits to mental health are also immense.

  • I have really benefitted from the ongoing exercises as part of the MS warrier programme. A 12 week virtual exercise proram that is emailed to you daily. My walking is more stable and less wobbly. Also my general fitness is greatly improved. I hope to keep this daily exercise going when I finish the program . I know I won’t run any marathons but it has really helped in daily life.

  • I have RRMS without many problems, but it may be because I do such a lot of exercise: jogging, swimming, the
    gym 2-3 per week, pilates (which I don’t enjoy) tai chi and I walk everywhere, rather than drive. I don’t know whether I would have been worse if I didn’t do all this. I was absolutely useless at sport at school. Never allowed to join in a single sports day and the last kid to be chosen for teams in PE. It is not always easy to be motivated, but it’s making the first move that is the most difficult. If you are able to get out you need to make yourself do it. If you are more disabled than that, try to do seated exercise indoors or stretching exercise. Once you try, it usually gets easier the second time. It’s a cliché but the old saw “A journey of 1000 miles starts with a single step.”

  • More specifically strength training. As you get stronger you increase your grey matter as body learns how to lift more weight and engage the extra muscle. Without stopping the inflammation process. It’s battle to learn to replace the brain tissue lost due to inflammation. Once inflammation is stopped. I guess there may also be reversible of some disability where the brain is still able to communicate with that limb

  • It’s very heartening to read about how exercise is helping people. I think, and judging from some of the comments, some of the activities would be beyond people who’ve had MS for many years, though. I think it would be helpful if people included an indication of how long they’ve been living with the condition.

  • Male mid 60’s. I created an acronym for the need to adhere to our MEDS. Mind exercise diet sleep. Ebike for last 10 years made a big difference in three out 4 of those. All are interactive and work good.

    So far it seems to be working about 20 to 25 years in. Biggest improvement was after Cladribine tablets in the last 3 years. Arrived just in time as knee was collapsing. Also requiring a AFO to keep me walking.

By Prof G

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