Choosing Activities for me & getting started

Within this resource you will find an ‘Activities Suite’.  The suite contains 9 sections, each of which contain physical activities which have been especially selected for people with progressive Multiple Sclerosis.  This resource is focussed on providing people who have different abilities and challenges due to MS to find a new ideas for activities they might want to try. 

Not every activity will be suitable for you, but you will see that in most cases, activities are graded – with standing, seated or where possible, lying options available.

With the support of your physiotherapist as required, it is up to you to consider what activities might suit you and what you might want to try.

Getting started

When you try new physical activities, or begin to do more activity than normal – start slow, and build up gradually.  When exercising, it is likely that you will feel warmer as your body temperate will rise and your heart will beat faster. 

Starting a new physical activity or exercise programme can mean that you may initially feel some muscle aching or tiredness after exercise but this should resolve by itself.

Some days you will be able to do more and some days you won’t be able to do so much - this is normal.

SAFETY

While carrying out activities or exercising you should still be able to hold a conversation. You should not feel dizzy or exhausted.

If at any time when you are exercising, you feel severely short of breath or cannot breathe, stop immediately, rest. Contact your physiotherapist to discuss this and what you should do about your exercise programme. They may ask you to see your doctor for advice.

If you are attempting an activity in standing and you are challenging your balance, make sure you do the activity with a table or worktop nearby that you can hold on to, to steady yourself if needed.

If you are doing an activity in water, make sure you have considered your own safety – making sure a lifeguard is on duty for example, or have someone else with you.

Listen to the general information and advice from Professor Helen Dawes about physical activity and how to get started.

Within the activities suite you will see buttons which allow you to add what you want to try out into a plan.  See the ‘Setting aims & challenges’ sections to help you get the most out of this function.

Within the Activities Suite, you will see that we have produced some purpose developed content for the LEAP-MS resource and also highlighted a range of pre-existing content. With so many already accessible resources available to draw upon, we have found some very useful activities and guidance from people from all over the world.

Some of the youtube films we use on this resource are unfortunately ‘monetized’ - meaning they use advertisements as a way of financing otherwise free content. We apologise for any of the adverts you see and recognise that this is frustrating at times.  You can skip any adverts after 3-4 seconds by clicking the ‘skip’ button in the bottom right hand corner of the playing film.

Setting Aims & challenges

LEAP-MS is about helping you to be physically active.  It aims to do this by:

• Helping you to find activities you enjoy doing (Activity Suite)
• Helping you to better understand the benefits of physical activity for managing MS symptoms (Information Suite)
• Provide support from physiotherapists to guide you when you need it (Face-Face physiotherapy consultation at home and messaging service)
• Offer functions for you to set aims and challenges (My Plan)
• Enable you to record and monitor the type of activity you are doing and how much (My Plan)

Many people find that having aims, or ‘goals’ to work towards helps to motivate them.  Your aims might be large or small, short-term or long-term. 

To help achieve bigger aims and longer-term goals, it often helps to break down what you want to do into a series of smaller, shorter term goals which you then work towards bit by bit.

Your physiotherapist can help you work through some possible aims and make suggestions – but we have some examples here to help you get thinking about what aims you might like to set yourself.

Below we give you three examples:

Example 1:

For some people, getting active might be important to them because they want to introduce a wider range of activities into their life.  For someone like this their aim might be:

Aim 1:

Try out 3 new activities within 6 weeks.

It’s thought that the more specific an aim can be, the more likely people will achieve it.  The aim above could be made more specific by identifying 3 new activities for example, or by detailing how much time you will spend trying the activity. 

Try out 3 new activities (Tai Chi, playing balloon batting with my nephew & aqua aerobics) within 6 weeks. Do each activity for 20 minutes, at least twice a week for two weeks.

Example 2:

For others, getting active might be focussed on one area of their life, or a specific task.  For example, someone might want to be able to stand at their sink to prepare potatoes, rather than sat at a table.  The challenge for them is that at the moment they can only stand for a couple of minutes and they need to be able to stand for 5 minutes.  For this person, they have an overall aim, but need to break that aim down into components, in order to achieve it. 

Aim 2:

To be able to stand for 5 minutes at the sink (so I can peel the potatoes)

Their physiotherapist has helped them identify that they are struggling to stand for longer than a few minutes because their core muscles and their quadriceps (big muscles in the thigh) are weak.  Their physiotherapist has helped them select a few activities that will help them improve their strength in these areas which will then hopefully help them stand for longer.  The activities are seated pilates and sit to stands. To achieve the aim, a plan is put together.

The activity plan:

Seated pilates:

Carry out 20-minute seated pilates programme three times a week

Sit to stand:

Stand up and sit down five times in a row three times a day.

For others, getting active might be about trying to manage symptoms of fatigue.  For them, their activity aims might be about trying a range of activities which may help reduce their fatigue and build their exercise tolerance.  In these circumstances an aim might be:

Aim 3:

To complete a 15-minute seated aerobics routine in one go within 3 weeks.

To help you set aims, to record and track the activity you are doing, each time you add an activity on the resource to your activity plan – you can set an aim related to that activity.  You can see how to do that by clicking on the ‘My Plan’ tab in the menu.

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.

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.

 [Insert film of Ceri talking about how exercise helps her and how she manages fatigue] – to be filmed

Listen to Professor Helen Dawes talking about exercise and managing fatigue in MS.

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.

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:

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

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

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.

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

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