Are you ready for the “dørstokkmila”?

A

One of the things that has struck me during this COVID-19 pandemic is how little many pwMS move. Very often I speak to young pwMS that have low levels of disability but hardly reach 2000 steps a day, which corresponds to 1.5 K or 1 mile. Similarly, also people with advanced MS told me that lockdown has been detrimental to their levels of physical fitness and report an increase in spasms and reduction of their already limited walking range. In pre-COVID-19 times, many went for swimming but pools have been irrevocably closed. The same applies to gyms, which are very often the only safe environment to exercise in more advanced disease stages. The fact that it has become more difficult to exercise in an indoor-non-home location should be added to the fact that a quarter of pwMS received the advice to shield and all of you, especially the ones on treatment, have been extra prudent when leaving the safe haven of a COVID-19-free home. As this new setting of work-from-home and social restrictions is most likely gonna remain present to some extent in the upcoming year(s), it is paramount for pwMS to rethink how to be physically active and avoid another kind of pandemic…

In my opinion, there are three important hurdles standing in the way of taking on a new exercising habit: 

First of all, physical exercise needs to be seen as – apologies for making it sound so unromantic –  “any bodily movement produced by skeletal muscle contraction that results in a substantial increase in energy expenditure over resting levels”. The heroic efforts of the riders in the Tirreno and Milan-San Remo wrongly colour our conceptions of exercise. However, there is no reason to only count “official” exercising such as running, playing tennis or cycling. Depending on everyone’s capability, a wide range of activities would accommodate the official definition (e.g. doing stairs, gardening, lifting bottles of water, etc.) , and it is not because you cannot exercise like you used to do that it does not count anymore. If you find it hard to imagine how you could exercise at home, the videos on the website of the MS society are super instructive. 

Second, many pwMS feel they are short in time, and unable to integrate physical exercise in their busy professional and personal life. This is definitely a challenge. However, as exercising is just as crucial for our general health as a good’s night sleep to avoid fatigue, prioritisation of what we spend time on is key. The problem is that the link between a lack of exercise and health is much less apparent than the link between a lack of sleep and fatigue. However, according to the World Health Organization and the National MS society, people who are insufficiently active have a 20% to 30% increased risk of death compared to people who are sufficiently active. Being sufficiently active is defined by both organisations as spending between 150 to 300 minutes of moderate intensity physical activity per week. 

Third, there is a misconception that MS fatigue and disability are aggravated rather than facilitated by a lack of exercise. In a recent study, it became clear that the only evidence-based treatment for MS-related fatigue is exercise. In addition, a sedentary lifestyle impacts negatively on cognition and leads to deconditioning of your core muscles. These muscles are crucial to sit or stand upright and keep your balance when walking.

Obviously, there are many more hurdles such as the support of your social network, costs of a gym membership, purchasing equipment, etc. for pwMS to program regular exercise. Admittedly, also we as physicians are part of the problem. Many of us tend to focus on strictly medical or pharmacological queries during the clinic visits, and do not elaborate sufficiently on the beneficial effects of regular exercise. Therefore, I will implement the following policy in my own MS clinics: 

  • Ask routinely about exercise and physical activity habits;
  • Emphasise the potential benefits in terms of mood, quality of life, weight reduction, feeling of self-accomplishment and general health, 
  • Refer pwMS to the MS Society website which has excellent video tutorials on how to workout at home with limited resources and when having different levels of disability.

And please remember this Norwegian saying: the hardest part of this journey is just getting out of the door, the doorstep mile. 

Examples of work-out videos:

Twitter: @SmetsIde

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Ide Smets

29 comments

Leave a Reply to Annonie Mouse Cancel reply

  • Hear Hear. I like the doorstep mile idea! The first step is the hardest.

    Instead of intending to do it I meticulously plan it out, to the extent of planning my route so I know where I am going, how long it is, and how long I’ll be. I then get my clothes ready, shoes/boots ready the night before. Everything.

    Then, when I get up the trip over the doorstep is shortened significantly. It is all about removing as many mental impediments as possible. It is even better if you have made a plan with one other. Something all of us are able to do.

    After that it is just a case of putting one foot in front of the other as my body will follow.

    • Totally agree! It’s really about creating a facilitating setting and removing barriers for not going to exercise. You are probably also a fan of the book Atomic Habits?

  • I always try to move, pre-COVID I used to run at least 3 times a week… during COVID lockdowns I tried to keep it up, but found that footpaths were blocked by people trying to get their exercise with partner, pram and toddler all spread out across footpath, not paying any attention to what was happening around them and not seeming to care about anyone else trying to also exercise. Or wandering along with eyes glued to space phone. Yeah, I know I sound old and grumpy but really people can you not try to notice what is happening around you so that we can all use outdoor spaces for exercise?

    • Absolutely, London is ‘anatomically’ not constructed to accommodate pedestrians, runners and cyclists. Hopefully, the politicians will have experienced it too (although BoJo was running in the gardens of Buckhingham Palace), and this will be taken into account in future architectural projects.

      • Never heard of the book. I have the attention span of a fruit fly so never get through a book like that. It is slowly learned common sense I’m afraid. Nothing more exciting.

        I thought our Glorious Leader was seen treating himself to lengthy cycle rides within London during lockdown?

        • People write books about common sense 😀 Anyway, the book essentially elaborates on your methods to make exercising a habit.

          And indeed BoJo was also spotted cycling, but three bodyguards cleared the bike lanes for him so I guess it doesn’t really count as the ‘real experience’.

  • Great post!
    I’m EDSS 6.5 which I call ‘the scooter’ stage, 2 crutches inside the house, scooter outside (small enough to get into shops, shopping or holding anything whilst leaning on 2 crutches is near impossible!) .
    It’s a dangerous stage I think, losing that bit of active time in everyday life.
    I always used to walk/cycle to get around and relying on a battery felt lazy, I hated it. So after a year I switched to a wheelchair and I love it! Funny thing is a wheelchair instantly makes you look more disabled to the world. I disagree. I’m so proud to be able to go out shopping under my own power again.

    It’s maybe not for everyone but I highly recommend giving it a try.

  • A great post and one that resonates strongly for me. I am around EDSS 6.5 using 2 sticks or a walker for short distances and a scooter for longer ones but pre-covid I used to swim 2-3 times a week, and attend 1-2 light yoga sessions plus just getting out and about to see people and go shopping (pushing a supermarket trolley turns out to be surprisingly good exercise – with the added bonus of getting food!). Despite knowing how important it is to keep up with exercise (move it or lose it) I have found it increasingly difficult to motivate myself to stay active as the lockdowns have extended and it quickly becomes a vicious circle – less activity leads to more lethargy and less energy; more inactivity leads to more stiffness and pain which in turn makes exercise even less appealing. I am hoping the milder and longer days will help fire me up again to regain some of the winter losses.

    • This is exactly what I mean, and so sorry to hear you had to cut back on being active. Hope you can pick up your old habits again this summer!

  • “Fresh air and exercise” sounds a bit old fashioned somehow, in this age of gyms and endless options (at least pre-Covid) of classes such as Bikram yoga, kettle bell classes, pilyo and goodness knows what else. But making sure you get outside and get some exercise in whatever way you can every day certainly has a good effect mentally and physically. I’ve certainly found this to hold true, pre and post diagnosis.

    • Totally agree, and also being outdoors always helps you realise how relative our day-to-day troubles are!

  • In my experience with PPMS –

    Exercise with plenty of fresh air outdoors is far more beneficial and invigorating than anything indoors. Knackering oneself doing housework in a stuffy house is not helpful.

    Exercise targeting the correct muscles is essential, e.g. Pilates.

  • This is such a good post. I have RRMS and have noticed a significant difference (in a positive way) when I exercise. With Covid, I couldn’t attend the cycling group (using tricycles) and I really missed it. I also missed doing yoga regularly and am not nearly as flexible as I was. I had great intentions to do the yoga at home, but without the routine of attending sessions in person, I didn’t manage it. I did manage to walk quite regularly though, which definitely helps. The joy of my local park and wildlife is a good motivation.

    • Yes, the social factor to exercise is so important! Maybe I should have stressed that more in my blogpost, because indeed, now everyone needs to self-motivate to exercise without the added benefit of catching up with your friends after class.

  • Google ‘sedentary lifestyle’ and you’ll be drowning in the articles reporting just how bad this is here in the UK.
    A report from August last year states that men have become even more inactive in the last two decades than expected!

    It’s therefore hats off to you for promoting the idea of physical activity and to those PwMS who’ve already replied talking about their exercising.

    Adding my sixth penny worth, as someone who also exercises I want to stress the importance of doing what you like doing – whether it’s dancing, yoga, walking, swimming, roller skating whatever!

    In addition to the gym I make use of YouTube as well as gardening. This is my way of enjoying the great outdoors due to walking being such an uncomfortable experience in addition to only having some 1.5miles in the legs fuel tank. YouTube has allowed for some reconnection with the aerobic classes from my dim and distant past and doing the 15mins work outs gives me such a buzz – something that should be a part of exercising.

    You see, I looked at the MS Society exercise routines you’ve recommended and hated them, whereas I really liked the MS Gym on YouTube. After a period of time this wasn’t floating my boat either, but fortunately I found Walk At Home 1 Mile with Leslie Sansone and subsequently I found YogaJP who does very very gentle seated yoga, including vids for people in wheelchairs. These are my go-to at the moment, though again, in time, this may change again.

    It’s a shame too many people do exercise coz they feel they should and not because they want to – enjoyment of doing exercise plays a critical part in ensuring routine maintenance of physical activity.

  • It is so true that Corona times make it much harder to get in some exercise. I have RRMS (for 22 years) and being stuck at home supervising the son’s homeschooling (that’s a euphemism really, actually it is more like pushing a stubborn mule up a mountain) I have a hard time setting time aside for myself.
    And to be honest, I have never been someone to exercise regularly for the sake of exercising. I used to cycle a lot and go horse riding so I try to incorporate movement and a type of exercise into my daily activities.
    As I was unsure about just how little I was moving, I bought myself a smart watch recently and now I can track my steps and the kilometres I do on a daily basis. It also immediately motivated me to do more. And to be honest, I was surprised to see that I do more steps than I would have thought.

    As I can no longer run (as in the legs don’t want to) I bought a kick scooter (with brakes on the handlebar) so I can at least keep up with my 8 year-old when we go outside and like that hopefully get in some exercise at the same time. I find it is most efficient if I am being pragmatic about it instead of beating myself up for not exercising on a regular basis.

  • I am blessed with an outdoor gym so i can still workout 3-4 times a week. Besides that i also have dumbells at home so i can do a workout. This is al mostly upperbody which goes great, even with weakness in my left arm. Problem is my lowerbody it does not like to move. After cycling or swimming for 5mins i pay big time the next day; stiffness, cramps and hip pain.

    So until recently i gave up cycling . Now i am on a strong stretching regime for my hips which seems to work for me in combination with hemp-oil. Now i am cycling 20mins a day without any hip pain. Glad i gave it another shot.

    For pwMS who struggle with movement on a daily basis it is hard to stay active so we need all the help we can get. Hope many HCP will follow your example!

    • Many pwMS underestimate how important stretching is if you have spasticity. It can really make the difference. Thanks for sharing.

      • My belief is that you only achieve long term exercise by integrating it into your life. In my preMS life I had chosen to live within range of work so walked or cycled every day. I was a late developer and only had MS post retirement. Looking back my first symptoms were the reduction in my mobility range. My MS was diagnosed because of a major relapse that the GP had no idea what it was. I bounced back by basically keeping moving and a few sessions with a Neurologist Physiotherapist. I am incredibly lucky that there was a local MS Society exercise group that had carried on after the NHS had withdrawn funding. I am sure the lively 80 year old ladies would not be as healthy as they are without the decades of exercise and social support. We have managed to resurrect the group online socially to start with and now with exercise.
        My own fitness was maintained pre COVID with a trip to the gym once a week but probably more by going out and about most days. Shopping cinema theatre discussion groups etc. COVID lockdowns brought this to a crashing end. Last summer we managed to get out and about including short trips away from home, but then another lockdown. I have added Pilates and Yoga classes and make the effort to walk outside on the other days. With this I have stopped the rot but I am looking forward to keeping fit by living (rather living to keep fit).
        I watched your video talking about drugs to help with fatigue. I agree with your conclusion. But I think you missed something very important. The strong signal from the placebo with minimal difference from placebo for drug treatment should be read as doing something about your condition has a very big effect. I believe this is why diets are effective for some. When we concentrate so much on drugs we do not focus on the basics that work for everyone with any flavour of MS as well as all others.

        • I agree, placebo is a very powerful weapon, and shows how much we can achieve when believing in something. This is definitely the state of mind we should have about exercise.

    • Nice addition to this post Luis 😁

      By-the-way Ide I’d like to apologise for use of the word ‘hated’ – it’s been niggling at me that all that was required of me to say is that the MS Society vids didn’t appeal to me.
      As Kit reiterates very well – it’s about doing whatever floats yer boat!

      • No worries, I didn’t take it personal. And I guess it’s a quest for everyone to find out how to be active. But ideally, everyone does that mental exercise because it’s so important that you find a way to move for your general and MS health.

  • Fi is so right. `If we only exercise because we think we ought to, or if we just don’t enjoy it we won’t do it. Sustainability is vital. For all of us, not just pwMS it’s really helpful if we can find an activity we enjoy. Then there’s a good chance we will maintain it. I’ve been running and swimming all my adult life, but it’s nothing spectacular, just jogging or swimming slowly round and round. I can’t until May because of some steroid injections in my foot and a cataract removal last week. I’m going to be climbing the walls by April because I adore swimming and running and can’t. That’s how much you have to love it. Then you’ll keep it up..

    It must be something you like. Doesn’t have to be running etc. But there are many many options, some of which have been mentioned here. If you hate swimming and shudder at the thought of the gym, or gardening, keep looking. There may be something you haven’t thought of. Try to find your thing. The key is to do it for the rest of your days. So you have to be able to enjoy it.

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