The evidence that exercise and I mean regular exercise is good for you is so overwhelming that it is hard to argue against the science. What I mean by this is that almost everyone accepts exercise as being good for the general population and for people with MS. The downside is that some MSers are so disabled and/or have so much fatigue that they find it difficult to exercise. I am prepared to accept the latter, but I am not prepared to accept this as a reason not to promote/prescribe exercise to the wider MS community. The question I have ‘Is how do we get MSers and healthcare professionals (HCPs) to exercise regularly?’.
The good thing about making this initiative into a challenge is that it builds teams (people are competitive) and it will increase social participation. Theis will, in turn, enhance social capital, which should improve outcomes as well.
Motl et al. Promotion of physical activity and exercise in multiple sclerosis: Importance of behavioral science and theory. Mult Scler J Exp Transl Clin. 2018 Jul 9;4(3):2055217318786745.
There is an obvious disconnect between evidence of benefits and rates of participation in exercise and physical activity among people living with multiple sclerosis (MS). We propose that the problem with exercise behavior in MS (i.e. lack of broad or increasing participation by people with MS despite evidence of meaningful benefits) might be ameliorated through the inclusion of behavior change theory in the design of exercise programs and promotion efforts, as has been undertaken in other populations such as breast cancer survivors. This paper reviews Social Cognitive Theory as an example approach for informing interventions for increasing exercise and physical activity behavior outside of MS and provides an overview of current knowledge regarding the application of this theory for physical activity in MS. We then outline future research necessary for informing trials that design, implement, and test theory-based interventions for physical activity promotion in MS. If theories of behavior change are adopted for informing exercise and physical activity research in MS, we can take a major step forward in addressing the problem of exercise and physical activity participation that has plagued the field for more than 25 years.
CoI: I am a runner, albeit one with a failing right hip
The review below argues for applying behaviour change theory in the design of exercise programs and promotion efforts. How about making it a challenge? Can you walk? Can you run?
In collaboration with the MS Trust, we are proposing starting a national exercise challenge/competition to get the MS community walking and running. We are proposing to use the Parkrun platform. Parkruns are 5km runs that are held each Saturday in a local park near you and allow you to complete 5km and log an official time. The challenge is to get every MS team in the UK, and possibly the world, to sign-up for the challenge and collect 5km runs. The team with the most Parkruns after a certain period of time, say a 6- or 12-month period, wins the challenge.
When I refer to teams I mean all MS stakeholders linked to a particular MS service or team. This would not only include people with MS, but their HCPs, friends and families, MS Society members, ShiftMSers and even Pharma reps. The only rule we would propose putting in place is that a member of a particular MS team can only sign-up for one team. Another idea is to combine Parkrun effort with a fundraising campaign for the MS Trust. However, the fundraising would be voluntary and not necessary for participating in the challenge.
I have suggested to the MS Trust that they create an annual Parkrun award for the team who wins the challenge and for the individual who completes the most Parkruns in the predefined period of time. Please note you can only really do one ParkRun a week and special one held on Christmas day and New Year’s day.
In collaboration with the MS Trust, we are proposing starting a national exercise challenge/competition to get the MS community walking and running. We are proposing to use the Parkrun platform. Parkruns are 5km runs that are held each Saturday in a local park near you and allow you to complete 5km and log an official time. The challenge is to get every MS team in the UK, and possibly the world, to sign-up for the challenge and collect 5km runs. The team with the most Parkruns after a certain period of time, say a 6- or 12-month period, wins the challenge.
When I refer to teams I mean all MS stakeholders linked to a particular MS service or team. This would not only include people with MS, but their HCPs, friends and families, MS Society members, ShiftMSers and even Pharma reps. The only rule we would propose putting in place is that a member of a particular MS team can only sign-up for one team. Another idea is to combine Parkrun effort with a fundraising campaign for the MS Trust. However, the fundraising would be voluntary and not necessary for participating in the challenge.
I have suggested to the MS Trust that they create an annual Parkrun award for the team who wins the challenge and for the individual who completes the most Parkruns in the predefined period of time. Please note you can only really do one ParkRun a week and special one held on Christmas day and New Year’s day.
Do you think this is a good idea? If yes, what should we call the challenge? With my bias, I would say #ThinkRunning. Or what about ‘The Running and Proud MS Trust ParkRun Challenge’?
I know the naysayers will be saying, but I can’t run. I know there are some of you who can’t run but then there will be others who are simply deconditioned (the medical term for unfit). For you, I would suggest starting the ‘couch to 5K’ programme that is designed to get you off the couch and running 5km in just nine weeks. The plan involves three runs a week with a rest day in between and a different running schedule each week. The NHS is promoting this using an app developed by the BBC, the programme or app builds you up gradually with a mix of running and walking.
The good thing about making this initiative into a challenge is that it builds teams (people are competitive) and it will increase social participation. Theis will, in turn, enhance social capital, which should improve outcomes as well.
We have already had a discussion with one of Parkrun’s MS ambassadors and the MS Trust and they are very supportive of this initiative. Are you willing to give it a go? Please let us know even if it is helping with the naming of the challenge. Without your help, this won’t happen.
Let’s Do It!
Let’s Do It!
Thank you.
Motl et al. Promotion of physical activity and exercise in multiple sclerosis: Importance of behavioral science and theory. Mult Scler J Exp Transl Clin. 2018 Jul 9;4(3):2055217318786745.
There is an obvious disconnect between evidence of benefits and rates of participation in exercise and physical activity among people living with multiple sclerosis (MS). We propose that the problem with exercise behavior in MS (i.e. lack of broad or increasing participation by people with MS despite evidence of meaningful benefits) might be ameliorated through the inclusion of behavior change theory in the design of exercise programs and promotion efforts, as has been undertaken in other populations such as breast cancer survivors. This paper reviews Social Cognitive Theory as an example approach for informing interventions for increasing exercise and physical activity behavior outside of MS and provides an overview of current knowledge regarding the application of this theory for physical activity in MS. We then outline future research necessary for informing trials that design, implement, and test theory-based interventions for physical activity promotion in MS. If theories of behavior change are adopted for informing exercise and physical activity research in MS, we can take a major step forward in addressing the problem of exercise and physical activity participation that has plagued the field for more than 25 years.
CoI: I am a runner, albeit one with a failing right hip
Good to see Prof G posting off schedule and doing something this blog is world-renowned for. I hope you have found your mojo. I suspect MD's prod has something to do with it.
More spontaneous posts like this please.
Thanks ProfG and MS Trust great initiative! I love parkrun and volunteer every week at our local run. EDSS 6 going on 6.5 and our run is grass so no good for a chair. I have only once (so far) attempted to do one in a wheelchair, it was a last minute thing when on holiday in Scotland and I ended up needing more than a little bit of help from the tailwalker! Next time I try I'll wear gloves and it'll be somewhere flat! I've even been reading up on racing chairs….#loveparkrun
I totally endorse the concept but am faced with the challenge of applying the need for exercise to being non-ambulant.It is a battle that I fight on a day-to-day basis since I am in aged care (in Australia)The emphasis of all physiotherapy that is funded here has been, traditionally, for pain relief but of course doing rehabilitation physio strongly mitigates the pain relief.I therefore, every other day, spend an hour pedalling with my legs, four times a week spend five minutes, working to exhaustion, pedalling with my hands and, most days, spent five minutes using a pulley machine to stretch and exercise my arms and, by sitting up straight, strengthen my core.All this of course depends on the fact that I do not experience fatigue symptoms however I cannot do what I described the temperature is too high
David, you're an inspiration and show what's possible to achieve living with advanced MS. 🙂
Maybe you can get Vitality or one of the Pharma companies to sponsor this? Have you tried? Great idea and I will definitely get involved with my centre.
Good idea. I will contact them.
Had a very good response so far; it is quite amazing how excercise or the hint of a challenge gets people motivated.
All of this sounds greatThe NHS app 'isn't available in your area', but I found other similar appsSo let's see how it goesOne problem is that we're in monsoon season and the weather is so hot and sticky
I think this is a wonderful idea. Is there a way to include people who can't run but could walk with a stick or a rollator, perhaps for 1k?
Hello, parkrun is always 5k if you want a time. Loads of people walk round though! If you can't run, jog or walk 5k you can always volunteer. Volunteering is great fun, outside, you meet loads of people and it gets you out for 9am every Saturday! Plus if it weren't for volunteers parkrun wouldn't happen. You collect volunteer credits at parkrun as well as run credits, no reason why these couldn't be included in an MS team league. Hope you're reading this ProfG and MS Trust, good point Tripping has made about making accessible to those unable to do 5k I think.
In January I have joined on the internet the MSGYM. It has been set up by a guy from California. They basically consist of exercise videos for people with MS. He has chair exercises, hand strengthening exercises, foot drop, stretching for spasticity etc. I am loving it and do my program every day. I have set up a room with all the stuff I need like bands step ball etc. It has become as important to me as brushing my teeth and I feel I need to keep at it for life. There is a free facebook group you can try with some of the ptograms on it like footdrop. I have joined the membership for $30 per month for the more in-depth stuff. There is also a facebook group were people give each other support. You can also ask him questions for help and support. I have benefited more than I could have imagined possible. For about 3 years I have only managed to walk half a mile. I am now managing 3 miles and that is with footdrop. Lost that excess stone I was carrying too which helps.
Agree Joanna – I found Trevor Wicken msgym on you tube and use his workouts, alongside the regular gym and yoga. Showed him to my neuro physio and she's endorsed his workouts as suitable, safe and beneficial and that made me even more confident of using the msgym :-)Best wishes with the park run ProfG – won't be involved as can't walk 5k, but good luck to everyone who is.
I also agree that the online MS Gym is great especially for US MS-ers worried about coverage for PT.Given all the interest in Terry Wahls diet, I have long wondered why the MS community hasn't formed partnerships with NMES devices like Compex, which have the powerful NMES features needed for the kind of extensive e-stim she did when she started her diet. Everyone talks about her diet, but it may be the hours of daily NMES that she did that really helped boost BDNF and other factors.Using a system like Compex may help with deconditioning that has resulted from MSers tryign to deal with fatigue by sitting more than they should.
Hello! I’m one of the two new parkrun “outreach” ambassadors for MS – and just wanted to let those interested know that we are starting a new facebook group (and hopefully soon a Strava club) for parkrunners with MS or who are affected by MS (including, of course(!), HCPs and Mouse Doctors!!).https://www.facebook.com/groups/parkrun.for.people.with.multiple.sclerosis/
Thanks Unknown 5:19, have just sent a join request :)AM aka JB
But "parkrun" is a fixed concept."parkrun organise free, weekly, 5km timed runs around the world." Though happy to have more 5km runners, I very much doubt if parkrun or the other regular, weekly runners would appreciate people showing up with sticks, rollators and wheelchairs.This is about fit pwMS and pwMS whose fitness may have lapsed temporarily or pwMS who are capable of becoming fit, people who can complete a 5km run. This is not about people who are already "disabled"…
Anon 5:28 Incorrect, parkrun very much encourage sticks, rollators and wheelchairs! I use a scooter and volunteer every week, another chap of 86 I know uses a rollator. Volunteers are a vital part of parkrun. https://annoniemouse1970.blogspot.com/2018/07/volunteering-loveparkrun.html?m=1I've turned up at one parkrun to try it in a chair, everyone was brilliant:https://annoniemouse1970.blogspot.com/2018/07/tailwalking-loveparkrun.html?m=1Have you never watched any of the Paralympics? Wheelchair racing is awesome! I've a lot to learn but am determined to get there. So take that 'already disabled' comment right back please!
Yes, as volunteers, that is not really what this initiative is about though. It is about encouraging pwMS to get out and run and that is great if you can run, but pretty depressing if you cannot.Increasing physical activity is the name of the game, it is not about sitting around keeping scores as a volunteer, or being pushed around in a wheelchair, or sitting in a scooter, it is about actual exercise that is thought to stimulate the brain.I am all for exercise, but this initiative excludes so many pwMS, right from the outset.
Just sayin' that parkrun ticks more boxes than just physical exercise. Obviously, volunteering at parkrun doesn't prevent you getting exercise another way. And fyi I probably propelled about half the distance of my first wheelchair attempt (the flat bits) it's f'in tough and I was knackered!
HelloJust to second what annonie mouse has said re. parkrun being welcoming to those who need assistance – and not just as volunteers. True – parkrun is always a timed 5km event – but it is not just for runners or even nordic/speed walkers. At every event there is a volunteer "tail walker" whose role it is to stay at the back of the pack, offer encouragement/support and make sure everyone gets round the course safely. At my local parkrun there are regular walkers who need to take their time to walk the course with assistance for a variety of reasons (including rehab. from back surgery). I've also been at parkruns with wheelchair participants. The Department of Health has given parkrun a grant to run a three year project to reach out to communities of people with disabilities and long term health conditions – to help raise awareness of parkrun within communities like ours given the physical/mental/emotional benefits of exercise and to consider what can be done to help make parkrun accessible. Previous initiatives have included the training of guide runners/walkers to help parkrunners with visual impairments and the use of British sign language for course briefings for those who are hard of hearing. It is great that parkrun are now rolling this initiative out to people with MS. Unfortunately, given the "snowflake" nature of our condition it will be difficult/impossible for the organisers to make parkrun truly inclusive for all pwMS (and particularly those with more progressed / severe symptoms). However, it is something that hopefully a lot of people with MS can enjoy – either running, jogging, walking or volunteering!Dr G – have you registered yet?
Thanks and well said Unknown Wednesday 11.45 I think the thread has died, but have a great weekend! Ps been busy on ebay tracking down racing chairs 😉
I also endorse the MS Gym. Exercise has never been mentioned by any of my neuros! Trevor is great, and I’ve had so many aha moments listening to his explanations. I encourage all Barts followers to give him a try.
Great concept but I agree it is not inclusive for those of us with MS limited mobility. Feels rather unkind to me and I am sure that was not the intention.I agree doing it in my scooter would not be the same but there is no way I can even manage the starting week of the "coach to 5k" plan. So we need to think creatively to find ways for us to join in.Maybe between a huge group of MSers we could manage 5k between us!? Maybe a second start time for mobility impaired participants of say 9.45 (by which time the fast runners have left) and we could just slow walk with our rollaters? Instead of the 2 laps that come to 5k we would need targets of say 100m, 200m etc to work towards.Although do bear in mind that if I ever got good enough to walk 100m I would loose my PIP funding! If people loose their mobility car they could not get to the park!