In the process of developing the LEAP-MS physical activity resource, we spoke with lots of people with MS and their families.  We found that many people with MS have similar challenges when trying to be physically active, particularly in relation to finding activities which are suitable for them and getting access to places to do activities they are interested in.

People with MS have told us that there are many factors they consider before engaging in a new physical activity.  These include:

  • How will the new activity impact my MS symptoms?
  • How will I get to and from a group activity or into the building/facility?
  • Will I be the only person with MS at the event/group/activity?
  • Will there be any support for me when I arrive if I need help?

People with and without MS also report a range of challenges to being active.  Below, we sketch out the most common issues people come up against, and provide advice from other people with MS, health professionals and researchers about how to overcome these.


I’m too tired

Sometimes people with MS feel very tired, even if they haven’t done very much. It can seem like it takes a long time to get anything done, and you can tire from doing even simple tasks. We don’t fully understand why this happens, but we do know that exercise can help people with MS to manage fatigue and even improve the symptoms of fatigue.  The challenge is getting active when you experience MS fatigue.

TIPS FOR BEING ACTIVE WITH FATIGUE

  • Work out when you have the most energy – morning? afternoon? – and build your exercise and physical activity programme around that
  • Prioritise what really needs to be done, and do that when you have the most energy
  • Try to adopt a set routine for going to bed and waking up, and aim for at least 6-8 hrs of sleep each night
  • Remember to eat well and drink water before and after exercise
  • Try varying the amount of exercise that you do when you are tired and when you have more energy.

Listen again to Ceri and Professor Helen Dawes talking about physical activity and fatigue, and the tips they have for getting active with and managing fatigue.


I don’t have enough time

Not having enough time to exercise is one of the most common reasons that people tell us that they do not exercise. Living with MS, working, caring for others and doing everyday things can be tough, let alone scheduling physical activities and prioritising your own health. But, it is important to think about physical activity, like you would any other task you do, to take care of you and your life.

TIPS FOR BUILDING ACTIVITY INTO YOUR LIFE

  • Try setting aside a bit of time, even 10 minutes, every day to do some exercise
  • Use your clock/watch/phone to set an alarm to remind you to exercise
  • Consider doing flexibility exercises while listening to the radio or watching television
  • One of the best strategies for managing time is to schedule exercise into your daily routine

I always forget to do my exercises

For some people with MS, memory is a big challenge, and remembering to do exercises regularly is difficult.

If this is the case, there are a few ideas here, that might help you:

TIPS FOR AIDING YOUR MEMORY

  • Use your clock/watch/phone to set an alarm to remind you to exercise
  • Place visible reminders around the house in places you go frequently – such as the fridge.
  • Write a daily plan with your friends and family or physiotherapist and work from that [you can use the LEAP-MS activity planner to help you with that]
  • Talk to your friends or members of the family and ask for their support in reminding you to do the activities you have chosen.

If you struggle with your memory and none of the above suggestions work for you, then an activity programme that requires you to do multiple repeated exercises at certain times might not be right for you.  Choosing a range of activities that you enjoy and can do when you think of them, or joining groups or clubs where you can go with other people, who remind you might be better.  Ultimately, anything you do, is better than nothing and traditional exercise programmes are not helpful for everyone.


I’m not motivated to be active

Some people with MS are really motivated to be active, while others find it very difficult.

You can read below, some of the reasons other people with MS are motivated to be active.

Do you see being active as having a role to play in terms of you staying as well as you can?

"Yes, definitely, definitely. Every, every inch of it. I feel that my walking has improved because of it and my stature is better and I’m not quite so looking down at my feet and my posture is better."

— Craig


"Monday I go to the gym in the morning under the referral scheme, and I really, honestly, I couldn’t praised it highly enough. It’s fantastic.

Before I went there I was falling all the time.  Now I think that if I go to fall, I’ve got the strength to stop myself 90% of the time, I’ve got that and also I feel stronger in myself.”

— Elizabeth

Here, Ceri talks about how MS affects her mood, and how exercising and doing a range of different physical activities can help lift her mood.


Take a look at the tips below which might help you to get and stay motivated.

TIPS FOR GETTING AND STAYING MOTIVATED

  • There are many ways of being active - it doesn’t have to be one specific thing that you do, consider different activities to keep your physical activity interesting
  • Pick something you think you will enjoy and doesn’t seem a chore
  • Try to set small achievable targets to be active every day
  • Consider making your exercise programme part of a set routine
  • Keeping a diary/record of your daily activity may help you to see your progress
  • Ask your friends and family to encourage you or even exercise with you
  • Focus on the positive benefits you can achieve from being more active

Listen to Professor Helen Dawes talk about motivation here – and the advice she offers.


I’m not sure I can do exercises correctly

Some people using LEAP-MS will chose to do a specific set of exercises that help them move towards achieving their aims.  These might be exercises they have chosen themselves, or in consultation with their physiotherapist.

Lots of people with MS have some problems with memory, thinking and planning and they can find doing new exercises challenging.  Difficulty with balance, strength or just unfamiliarity with an activity can also affect your confidence in carrying out specific movements or exercises.  While some of these problems will be as a result of MS, these problems can be made worse by lack of activity.  Practicing exercises (or doing activities) which challenge your balance and require strength and co-ordination can help you to become better at doing the exercises (or activities).

Friends, family and /or carers can remind you about your activity plan and help you to do some of the activities you chose.  You might want to specifically choose activities that you can do with other people.  You might want to go to the beach and walk along the front, go swimming or do an exercise class together.

For family and friends who want to be active with you and support you in any way they can, share the family and friends section with them.

Tips to make sure that you are doing the exercises correctly

  • Ask your physiotherapist to help you select the best exercises for you and practice them while they are with you. Your physiotherapist can give you feedback on what you are doing and help you make it more or less challenging, depending on how you manage.
  • It is helpful to start off with a small selection of exercises. As you become more confident you can add more and begin to challenge yourself.
  • If you have a very specific aim and are doing exercises to target that, ask other people to watch you doing your exercises and give you feedback or encouragement
  • Make sure you have enough space to do your exercises. Make sure the area is free from clutter and that you have a chair behind you or a table at the side if you are exercising on your feet and are a bit wobbly.

I really want to get out and do things but I’m worried about:

  • The parking
  • The type of flooring
  • Can I get through the doors?
  • The toilets
  • The cost

You are not alone with these concerns.  Many people with MS feel that one of the main reasons that they aren’t as physically active as they want to be is because they are unsure about the facilities in places they want to go.

" I used to use the gym at the sports centre up the road here but all the machines there are, are set up for an able-bodied person."

— Craig


"A lot of my time I spend troubleshooting, so a lot of it is finding out if places are really accessible when they say they are.  I think that probably access is the biggest barrier

— Vivienne


Below, Ceri reflects on how the environment and access to places she wants to go affects her - and talks about the way in which she works around these potential limitations.


Supporting someone with Multiple Sclerosis

We all provide support for people around us and also need the support of others.  The same applies to being active.  If you have someone new in your life who isn't sure about how best to support you, you might want to share this resource with them and choose some activities that you can do together.

For anyone new to supporting someone with Multiple Sclerosis, listen to the message from Ceri below.


Head over to the Activities Suite and see what physical activities you might be interested in trying.  Once you see something you’d like to try:

  1. Add it to your plan
  2. Set when you’d like to do the activity and how often
  3. Give yourself an aim

 


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