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: