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When people first find out what my children and I have they always want to know what can we or they can do to help it from progressing.  All we can do is protect and conserve what we do have.  It is possible to build muscle, the younger the better because when it starts to deteriorate they say it can not be built back.  So the more muscle the better.  Also remember that although it is good to participate in therapeutic activities such as swimming, horseback ridding and physical/occupational therapy that we have to be so careful to not over due it.  If you exert yourself to much it can cause faster muscle deterioration. From what I have read and experienced there is a fine line and if you cross over it it can take days to get back to your normal. It is also good to stretch, practice balance, and moving toes and feet to keep mobility and balance as long as and as much as possible.  Again the younger the better with this which is why the physical/occupational therapy, therapeutic activities and at home exercises are so important as well as early diagnosis.  Please remember this is just my opinion based on what I have researched and experienced or have been told by my Doctor

 

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