If this is the case your child is likely to be referred to a SALT and/or a dietician.
If there are no feeding difficulties, it is helpful to establish a healthy eating pattern, which maintains weight within a normal range. Excess weight makes it harder for a child with weak muscles to move. It also makes any moving and handling assistance more risky.
If your child becomes less physically active, they will require a lower calorie intake.
Muscular Dystrophy UK has a factsheet, entitled Healthy eating for children with neuromuscular conditions, which you may find helpful.
And there are even better reasons for doing exercise. But first, you need to make sure that you are doing the right type of exercise. Keep your child as active as possible and try to make the activities fun. There is no need for anything excessive; normal play is fine. When your child joins in with PE and games, they will judge for themselves if an activity is too challenging for them. Your child’s local physiotherapist can visit the school to advise on appropriate activities, including PE.
If appropriate, encourage walking. Your child may tire more quickly than their friends, so do make allowances for this. Activities such as walking up hills, and/or climbing stairs, may be particularly difficult. If your child can manage them, swimming, cycling and horse riding are excellent physical activities.
If my muscles are weak why can’t I use weights to make them stronger?
Because the membrane of the muscle is fragile, overworking the muscle by lifting heavy weights could damage it. But there are other active exercises which you can do yourself that are good for you.
Why does my physio want me to have hydrotherapy when I just think it’s a pain getting undressed and dressed again?
Hydrotherapy is probably the best way to exercise if you have a muscle-wasting condition. The warm water supports your body and relaxes your muscles, which makes stretching exercises much easier. The best thing about hydrotherapy though is being able to move much more freely than you usually can and it’s really good fun!
What is the point of stretching exercises?
Stretching exercises are perhaps the most important exercises for all ages. Anybody who sits in the same position all the time will get stiff and uncomfortable. If you have a muscle condition, the stiffness can become permanent if the muscles and joints are not moved and stretched. Physios and doctors call this stiffness a ‘contracture’. Knees, for example, normally bend right back so that the calf and the back of the thigh meet and they can also straighten up. In muscular dystrophy, there may not be a problem in bending the knee, but sitting in a chair all the time canmake it difficult to straighten up. Joints that don’t have a full range of movement can get achy and it’s sometimes difficult to find a comfy position in bed. So best to just get on and do those stretching exercises.
What about my hands and arms?
Hands and arms need to be stretched too. Playing computer games is very important to most kids whether they have a musclewasting condition or not. Don't play for long periods of time – take regular breaks. To keep your fingers flexible, ask your physio what you can do (yes – it's more stretches).
What about my feet?
Looking good is important to many young people. If contractures of the feet and ankle develop, this might make it difficult to wear the sort of trainers or shoes you prefer. Wearing splints every day will keep your feet in the right position so that you can look good (and yes, there are stretches which will help too!). The posture of the upper leg is very important when looking at your foot posture. If your legs flop apart, your feet turn on to their sides (try it!).
Always make sure that your legs are properly supported by your wheelchair.
A caller to Muscular Dystrophy UK’s helpline:
I have a powered chair. At first I was a bit anxious about it but now I am really good at using it. Of course, I’ve had to practise a lot.
Do you need help?
Most youngsters are able to learn to drive a powered wheelchair without too many problems. However, if you are under 18 years of age you may want to learn to control your wheelchair more safely and be more confident and independent.
You wouldn’t dream of wearing clothes that didn’t fit you properly so why should you put up with a wheelchair that doesn’t fit? Having the right wheelchair makes you feel more comfy and looks better.
Are you comfortable in your chair, or are you leaning over to one side? If you think your chair is too wide ask your physiotherapist or OT for advice.
Do you bend forward to get your arms comfortably on the armrests? Do the armrests dig in? Ask your physio to check the height of the armrests and ask about adjustable ones.
Do you feel tired and want to lie down when you come in from school? Do you find it hard work keeping your head up? Find out about ‘Tilt in Space’ wheelchairs from your physio or OT to see if they might be suitable for you.
The charity Whizz-Kidz runs a scheme called 'Keep on Moving' which has different courses for different ages. Look at the website www.whizz-kidz.org.uk, phone 020 7233 6600, or email firstname.lastname@example.org
Read Muscular Dystrophy UK’s Wheelchair guidelines (available online, or by calling Freephone 0800 652 6352).
The Association of Wheelchair Children also provides advice about wheelchairs. It teaches skills that help develop confidence when using a powered or manual chair. Contact the Association on 020 7473 3684 or visit www.wheelchairchildren.org.uk