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Q&A: 12 questions about MS and exercise

This blog post may contain some of those questions that you spend energy on – if you (or someone you know) has MS. In the previous post, I was joined by 4 bloggers with their suggestions on how to maintain physical activity and exercise in everyday life with MS. This time it will be a solo round with a Q&A regarding MS and exercise. It will be based on some questions that I have encountered during my work as a physiotherapist.

What happens if your question is not included? Please do not worry…. more on this at the end of the post. Let’s start with the questions outlined below.

Feel free to scroll down to the questions that you find interesting. (Each question is followed by a picture indicating the number of the question above)

1 / How do I, as a wheelchair user, avoid sedentary behaviour?

You can still work on everyday tasks (such as emptying the dishwasher) or activities based on hobbies.

If you would like to do more cardio-orientated exercise in order to increase your heart rate, you can use an exercise bike. Pedal with the arms if they are stronger than your legs.
You can also be creative and make use of a long piece of fabric in each hand – such as a sheet or towel. Set the fabric in motion by moving the arms up and down in opposite direction at a brisk pace. Please listen to your body. Start carefully with e.g. 20 seconds at a time. You could use a diary to record how you are getting on. Use the diary to decide when you are able to add another set. This way you can build up your sets safely.
Later, you could also increase the number of seconds in each set. It is always best to consult with your local physiotherapist.

To read more about MS and sedentary behaviour, click here .

2 / Why do some PWMS succeed better in maintaining physical activity and exercise in their everyday life with MS than me?

Some people benefit from working on their motivation. This way, they can put into words what is important in their lives. They can join the dots and see how exercise can help them maintain what is important in their lives. In connection with working with motivation, it is also important to set specific and measurable goals. Failing to do this, may result in losing your motivation. In addition, it is much easier to maintain a routine of exercise and/or physical activity if you actually enjoy it. Even better: an activity that you can share with others and be social.

When living with MS, unfortunately, it is easy to give up being physically active (with good reasons given the nature of the condition). After all, it is a degenerative condition that challenges you on various levels. You could end up feeling low in mood. You might feel you have enough on your plate just getting on with everyday life – not to talk about fitting in exercise. The opposite could also apply. You might push yourself so hard it backfires for days to come. That kind of extreme lifestyle is also not beneficial for your MS. You need to find a happy medium where your exercise routine actually helps you – rather than sending you to bed for days!

In fact, I would put it this way: Exercising – without working on your mindset – is the worst thing you can do for your MS.

Working with mindset, goals and motivation, puts you in a position to take control of your active lifestyle. That way, you will experience how you can make a difference in your own life with MS.

3 / When I try to increase the amount of exercise I do, it backfires and I am exhausted for days. Do you have any advice?

Start small and specific. It is vital to listen to your body. Maybe your body even needs a break before you (the head) feel the time is right for one.

Use a diary to guide what you do.

In addition to adding breaks, you could also take into consideration how much effort a task requires. Think about changes you could do to a task to make it more or less effortful to carry out. For instance, you could use a walking aid to make your gait less strenuous. The aid then becomes a means to be more active rather than less active. Perhaps the ground where you exercise is very uneven. By finding a more level surface to exercise, you will reduce the required effort needed.

Speak to your local physiotherapist for more individual adjustments.

4 / I’m too tired to exercise. What can I do about it?

Fortunately, we are long past the time when exercising with MS was not recommended. However, there are still many issues in relation to exercising when you have MS – fatigue is one of them!

Fatigue is generally a major problem for PWMS. A large part of your energy may already be spent on the daily hamster wheel. Family, work etc. All the more important – keep in mind that exercise actually helps. Research shows that those who exercise on a regular basis are less tired. In the long run, exercise will give you more energy. Of course, you need to adapt your exercise and listen to your body. But do not lose sight of the future gain – if you keep going, you may also find that you are less tired.

You may have certain types of exercises/activities planned for good days. On the less good days, your planes will be different with a less intense routine.

It can seem overwhelming to get started if fatigue is one of your biggest problems. Maybe you have tried several times and failed. I encourage you to try and find your inner motivation by asking yourself – why is it important for me to exercise?

Also, spend some time finding an activity that you like. If you can share an activity with others and be social, then it is easier to keep going.

Take a look into the future. What would it mean to you if you had more energy? What would you do?

5 / I am scared of falling when I exercise. What do you recommend?

It depends on your exercise goal and why you fall.

If the goal of your training is to get a better balance, feel free to challenge yourself in standing as well – but it must be safe for you! When exercising in a standing position, make sure you are near something sturdy (just in case you need to hold it or grab it). Pay attention to the surface you are standing on. Does it require too much of you? How can you make it easier for yourself so that you are still challenged (but within a safe context)?

Be aware that activities that challenge you on various elements, will be much harder. During physio, you may have been asked to count backward from 100 while balancing on the wobble board. The added cognitive element will challenge your balance much more, than if you were to concentrate only on balancing. This does not mean that it is a bad exercise – it just needs to be performed in a safe environment by people with an appropriate mobility level.

Some physical movements will require more of your balance than others. Exercises that involve rotations of the body or challenge your vision come to mind.

Don’t forget to take breaks. Otherwise, you might fall due to fatigue.

Of course, there are benefits to exercising in standing such as strengthening the bones through weight-bearing and reducing spasticity, but it must also be safe. When it comes to home exercising, I would always advise you to be a little more careful with your own safety. When you are in safe hands with the physiotherapist, you can more easily be challenged to a higher degree. In any case, consult your local physiotherapist, who knows you well.

Sometimes your exercises may be more targeted towards cardio, flexibility, or strength training. If that is the case, you may benefit from exercising in a sitting position if you feel insecure in a standing position. You could try things like seated Zumba or Pilates for instance.

In any case, allow yourself time to try out different types of exercise and activities. It can take time to find what suits you in terms of personality, symptoms, and mobility.

6 / I have lots of exercise home programmes. How can I help myself to exercise when I forget about it all the time? Any advice?

You’re not alone. I know many who only remember to exercise the night before they see the physiotherapist if at all.

Try to make it as easy as possible for yourself. If necessary, set an alarm on your phone to remind you when it is time to exercise. Put up a picture of your exercises in a place where you see them regularly. Try to build your exercise into your usual routines/habits. For example. could you do a static wall squat while brushing teeth? (watch out for any toothpaste stains on your clothes!)

You could also benefit from an exercise friend. You could exercise together either physically or online. If you do not want to exercise together, then it could also be more in the style of a partnership, where you motivate each other and hold yourself accountable to each other. For instance, you could send a text asking how many high knee lifts your friend reached today? (- depending on what he/she is currently working on)

7 / I would like to try outdoor exercising. Have you got any advice or ideas?

There is growing evidence that staying outside has a positive effect on our health. Therefore, there are all sorts of reasons to find ways to be active outdoors. It can be in the form of e.g. weeding your raised beds or be more traditionally exercise-related.

If you want to try decidedly outdoor exercise, I would recommend that you do it together with at least one other person. Don´t forget the mobile phone and water. Put on layers of clothing so you can easily adapt to the temperature.

You will need to do some research before you get started. Be aware of areas for you to seek shelter from the sun. As you know, your symptoms can get worse if you feel too hot.

Investigate the area regarding risks of falling and the possibilities of taking breaks. Are there benches available? – how far is there between them?

Also, check out toilet facilities or lack of the same.

Is there disabled parking? How far is there from the car to your chosen area? You don’t want to feel fatigued even before you start the exercise.

How uneven is it? Are there any low-hanging branches or tree roots that can compromise safety? Do you need a walking aid?

Depending on your mobility, you can use nature as a part of your exercises. A tree can both be used to support exercises, and you can also lean upon it with your back if you need a little rest. Always remember to keep safety in mind.

We often tend to rush when completing an exercise routine. But in terms of outdoor exercise, I would encourage you to slow down.

Make use of your senses while you are out there. Touch, smell, see and hear! During the stretching exercises, pay attention to the plants/trees and notice the sounds around you. Take a deep breath – look up at the treetop while holding the stretch. Be present.

You can make use of your senses during your break. This is particularly useful if you are someone who needs to devote all your concentration to the exercise you are doing.

8 / Why do my symptoms become worse when I run compared to when I do Pilates?

This is most likely due to a rise in body temperature.

Consider what clothes you wear. Use breathable materials and layered clothing.

Exercise in well-ventilated rooms if you run indoors.

Outside, you can take advantage of shady areas. Avoid running in the middle of the day when it is warmest. Get enough to drink. You can experiment with putting your exercise clothes in the freezer beforehand, so it is cold for a little while when you exercise.

Take breaks.

There are also clothing products with a cooling effect such as scarves and more. Experiment with intervals – alternate between walking and running.

It can be a little scary to experience your symptoms becoming worse, but it is a short-term and well-known phenomenon with MS. Try to take your precautions.

9 / Can exercise help with worries and mental chatter?

One can easily become engrossed in unhelpful thoughts and worries.

Many people find that a walk outside in green spaces helps with their state of mind.

You can also try types of exercise that involve both body and mind – such as pilates and yoga. The pace is a little slower, and the exercises require concentration on what you are doing – and not what else is going on in your life. There is a focus on breathing. Breathing deeply can for some seem de-stressing in itself.

10 / How early on in the process do you recommend exercising with MS?

It is never too early to start exercising.

I have often met PWMS who thought that I had other more important patients to do physio with. Of course, time is spent differently on the different patients depending on their mobility and goals – but that does not mean that early intervention is not important.

The sooner we can help PWMS understand the importance of exercise, the better.

Of course, as a newly diagnosed person, you can afterward choose to only see a physiotherapist at certain times. You might choose to take full responsibility for your exercises for a period of time. But the offer has to be there – that way you can opt in and out as you see fit.

11 / How do I measure progress?

It depends on your goal.

For example, if your goal is to walk a certain number of meters – e.g. 20 meters in a row without a break – then you can start by measuring how far you are able to walk at the moment. Continue for a period of time regularly walking the distance that you can comfortably do. Every time you have walked the distance, you can register how you felt afterward – possibly with a few written lines and/or an emoji. When you feel you are ready to try a little more, gradually increase the distance. Finally, remember to continue recording how it went – that way you know when you are ready to increase the distance again.

You can also choose another method. Walk the 20 meters and record how many breaks you needed. The goal will then be over time to lower the number of breaks.

Regardless of how you measure your progress, remember that there will also be bad days where you can not walk as much as you would like. Allow room for them.

By recording, it helps you to decide if you are pushing yourself too much or too little.

Do keep in mind – maintaining skills can also be a goal.

Another tip is the use of a visual analog scale. It is a line with a numerical assessment that is often used to detect pain. However, it can also be used in relation to other areas such as satisfaction, self-confidence, exertion, and more. If you have a specific route that you often walk, you can measure the effort that the route requires of you on a scale from 0 to 10. Here, 0 corresponds to no effort and 10 to maximum effort. How hard was it for you to walk the route in terms of effort – plot it down on the line. Once you have done this for a week, you will get a picture of your performance over time. If you feel ready, you can increase the route. Use the scale to assess whether you increased the distance too little or too much. Keep in mind, however, progress is not linear – you will get some fluctuations. Some days your chosen distance may be 8/10 and other times 2/10. You need to be able to accommodate these changes – otherwise, it will lead to frustration.

12 / I will never be able to reach the recommended amount of daily physical activity and definitely not in slots of 10 minutes minimum. Is there any point bothering at all then?

It’s never wasted to exercise – no matter how small amount it is. Here it is perhaps even more important to write things down and be specific. That way you know what you are working towards and you will experience small successes. Otherwise, it could all drown in disappointment because you did not manage to be physically active for a minimum of 10 minutes at a time.

If we return to the example of emptying the dishwasher – then start by putting the cutlery in place as a sub-goal. Then you can increase it by putting the plates in the cupboard. Maybe it’s even enough to put the plates on the kitchen table and get help putting them up in the cupboard from someone else.

Also keep in mind that if you do not fail, there is rarely much progress. If you fail to reach your goal, then the goal may be too difficult for you. But try to look positively at this too – you now have the chance to adapt the goal. That way, you get another chance to reach the goal. Allow yourself to fail!

If you can shift your perspective to focus more positively, it will be easier for you to deal with small mistakes. When you set a goal, you can either reach your goal or learn from the mistakes you did. For example, if you are exhausted for days due to your exercises, then you are not doing anything good for your MS. But you can learn from the mistake and change your goal so that you can work towards it more easily.

Rounding off the Q&A.

Many of you know very well that I am a big advocate of working with motivation. I would like to teach you to take responsibility for your exercise and physical activities. This is partly due to the fact that I was in the team of physiotherapists who carried out the practical motivational talks during the research project iSTEP-MS. It was such a wonderful experience to see people taking responsibility and setting their own goals. At the same time, they left the project with a sense that they were in charge and that they actually were able to do achieve more. Of course, there were bumps and dents along the way – but the crucial thing was also how they received these bumps and dents. It was not meant to cause further bumps and dents in self-perception and self-confidence! The bumps and dents, on the other hand, should be used to assess and adapt the goals.

  • Perhaps this Q&A gave you some of the answers you were looking for?
  • Maybe you have a general question that you would like to ask?

Remember that the best individual advice is the one you get from your own local health professional. Please see disclaimer . However, I think many of you with MS will recognize at least some of the above questions.

PS Have you signed up for my newsletter? You get a PDF on top with 5 fun challenges for hand dexterity.

This post have been turned into a series about exercise and MS on the website of The MS Trust.

Read part one here.

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