What type of activity or exercise can I do?

It’s important to find something safe to do that you can enjoy, easily achieve, and can fit into your routine. This will depend on your own specific needs, interests, and circumstances. For example, if you have problems with your balance, it may be better to use a static exercise bike from which you can easily get on and off.

There are three types of activity or exercise:

• Aerobic
• Strengthening
• Stretching

This type of exercise is any physical activity that makes your heart beat faster. It may also increase your breathing rate. It uses large groups of muscles and ideally you should be able to sustain it comfortably for several minutes.

Examples of aerobic exercise include:

• Walking
• Swimming
• Cycling
• Propelling your wheelchair
• Housework
• Gardening

Aerobic activity or exercise improves the function of your heart, circulation, and lungs. By improving your general fitness, this type of activity is also good for your overall health and may help prevent chronic disease.

Relatively small increases in physical activity can protect you against chronic disease and can improve your quality of life by allowing you to do a little more each day.

Discuss with your cardiologist, physiotherapist, or neurologist what type of aerobic activity may be best for you.

How often should I do aerobic activity?

Start by making a note of the type of activity or exercise you can do and for how long. It should be something that you can do comfortably.

Gradually increase the length or frequency of the exercise or activity. If you’re having a bad day in terms of fatigue, you may not be able to do much. Don’t give up and feel as though you have taken a backward step. This is entirely normal. You can restart once you’re feeling better.

Make sure you include rest periods for your muscles to recover and to limit fatigue. Try to spread your physical activity or exercise sessions across the week to fit in with your lifestyle.

How hard should I exercise?

Aim for moderate intensity physical activity, which will:

• Make you feel warmer and sweat a little
• Make you take deeper breaths (but should still be able to talk comfortably in full sentences)

Using the Borg Rating of Perceived Exertion Scale, you should work up to the RPE Scale levels 3-5 if you can. This is light to moderate activity.

Rate how you feel at the beginning of the activity, see what you can do safely and comfortably, and keep this as your starting point from which to work.

Longer and more strenuous activity or exercise sessions should also include a three to five-minute warm-up to increase your body temperature and reduce the potential for post-exercise stiffness, and a five to ten-minute cool-down to allow recovery of your heart rate. Your therapist can help you with appropriate warm-up and cool-down exercises.

Strengthening exercises generally involve the major muscle groups. They can be exercises which use your own body weight, exercise that involve lifting small weights or pulling elastic exercise bands or where your body works against the force of gravity.

It is important to think about strengthening the muscles of your arms, legs, stomach and back (‘core’) muscles.

Improved core strength can help improve your posture and balance. This can reduce the risk of falling and help with day-to-day activities, such as wheelchair transfers.

Avoid excessive ‘eccentric’ activity. This means repetitive tasks or exercises where the muscle is being lengthened, for example squats. Eccentric exercises put much greater force through the muscle and can lead to muscle soreness and potentially some damage.

Talk to your physiotherapist about which muscles you should strengthen and how, as this will be different for everyone.

Aim for improving the endurance of your muscles, rather than strengthening or trying to build up muscle bulk. Endurance will help you with day-to-day tasks and allow you to do them for longer. For example, being able to climb more stairs before you get tired.

It may not be possible to strengthen muscles that are very weak because of a muscle wasting condition, but it’s important to maintain what you have for as long as you can.

Ideally you should do strengthening exercises at least twice a week.

It is better not to do strengthening exercises on consecutive days so that you give your muscles a chance to recover.

Within an exercise session, you should alternate the muscles you exercise. If you start with an arm exercise, do a leg exercise next.

If, by doing these exercises, your muscles feel weak, sore or fatigued to perform daily tasks, do less exercise or speak to your physiotherapist.

Low to moderate strength (resistance) exercises are safe for most people with muscle wasting conditions.

• Avoid lifting heavy weights as this may cause damage to already vulnerable muscles, and put additional strain on surrounding ligaments and joints
• To avoid other injuries, take care to protect your neck, back and posture when doing any lifting
• Aim to increase the number of repetitions, rather than the weight that you lift
• Stop the exercise if your muscles shake too much or the movements become jerky

When you start a new strength exercise you might expect to be a little bit achy, but any muscle soreness should have gone after 48 hours.

In rare circumstances, people with muscle wasting conditions can experience changes in the colour of their urine after exercise. Your urine may be the colour of black tea or cola. Attend A&E if you notice such a change, as this could be a condition called myoglobinuria.

It’s advisable to include stretching exercises in your activity or exercise programme. It is easier and safer to do your stretches when your muscles and joints are warm. A good time to do stretches would be after exercise or after a bath or shower.

It is important to have good muscle length and range of movement for day-to-day activities. For example, having enough range in your shoulder joint will help wish washing and dressing activities.

Several very rare neuromuscular conditions involve tightness or contractures of the spine or other joints. In this case, the goal of these activities would be to keep the flexibility you have, rather than gain more movement.

Take care not to over-stretch weak muscles or joints that are already very mobile.

If any particular muscles or joints are stiff, you may need a more focused stretching programme. Speak to your physiotherapist who can advise you which muscles or joints it would be good for you to stretch.

Activities such as gentle yoga and Pilates can be effective. These exercises and any stretches can be adapted so that you do them in the way that’s best for your body.

If you are too weak to do your own stretches, you can do them with help from a family member or your carer.

How often should I do stretches and how long should each session last?

Stretches are more effective when you do them regularly. Include them in your daily tasks, such as doing stretches for your calf muscles while brushing your teeth.

Try to hold each stretch for 30-40 seconds. The stretch should be slow and sustained, with no bouncing.

We’ve put together some videos and resources that are helpful for exercising with a muscle wasting condition, in a safe way.

Aerobic exercise

If you’re able to walk as an exercise, consider using the Active 10 app.

Active 10 App store download

Active 10 Google Play download

If you aim to do 10-minute blocks of physical activity or exercise, that’s a positive start.

Pilates

Pilates is a form of exercise that can be beneficial as it strengthens core muscles.

These Pilates videos have been created by neuromuscular therapists or Pilates instructors and are specifically for people with muscle wasting conditions:

• Neuromuscular Pilates in standing and kneeling 
• Neuromuscular Pilates in lying and side lying 
• Neuromuscular Pilates in sitting 
• Neuromuscular Pilates with support 

Activity and stretching

The Scottish Muscle Network has videos for stretching exercises in the standing, sitting and lying positions.

There are also videos that demonstrate passive movements for the arms and legs.

Physio sessions at home

Neuromuscular physiotherapist Marina Di Marco demonstrates a seated physio session that you can do safely at home as well as a standing physio session.