Diet -
It's a good idea for Pompe’s patients to follow a sensible, high-protein/low-carbohydrate diet, to ensure that our bodies do not have extra problems to cope with, due to poor nutrition.
Healthy eating and regular exercise have always been on top of the list towards helping to keep the body in good condition, and this is especially so for Pompe’s patients.
However, there are many reasons why some patients may not be able to take adequate nutrition, and there are several ways of helping with that.
Sometimes when, in very severe cases of Pompe's Disease, patients no longer have the stamina to eat enough to sustain the body’s needs, or have lost too much weight, it may become necessary for him/her to have a gastrostomy.
A gastrostomy is an external surgical opening into the stomach, which allows for supplemental tube feeding, so that complete nutrition can be provided.
and Exercise -
If you don't use it you will use it!
This applies especially to Pompe's patients.
Regular exercise will help your muscles and will benefit your whole body. It will also make you feel better about yourself.
Light to moderate aerobic exercise, such as walking, will help to strengthen the muscles. Some daily light stretching and regular movement helps us to stay flexible, will help to prevent muscle stiffness and will improve muscle tone. Some of our members do at least some walking every day, others do Pilates exercises, use a treadmill, or do moderate exercises at home.
However, exercise should never be extreme or stressful, but should be within comfortable limits.
Too little may not benefit you as you would like.
Too much can hurt you and can actually damage your muscles.
Ideally, you would be under the guidance of a qualified professional, such as a physiotherapist, who can set up an exercise program to especially suit your needs.
Note: Always seek the advice of your doctor before starting on any diet or exercise regime!
