Muscular Dystrophies Support Group
The muscular dystrophies are a group of genetic and hereditary muscle diseases; characterized by progressive skeletal muscle weakness, defects in muscle proteins, and the death of muscle cells and tissue. In some forms of muscular dystrophy, cardiac and smooth muscles are affected. The muscular dystrophies are the most-known hereditary diseases... There is no known cure...
Hi, anybody know if there is anything that can prevent the symptoms of myotonic dystrophy from progressing, excercise and maybe vitamins such as Vitamin D.
Monnie
Monnie
I have Myotonic Dystrophy-1; do you have it or are you asking for your child or other family member?
There is current research into different types of therapies but nothing pharmaceutical exists now.
I have been actively "self-managing" my condition for several years. I do yoga 2-3x/week, acupuncture and massage monthly, eat a vegetarian/vegan diet, and try my best to limit stress and conserve my energy in different ways.
I would say that my life is fairly active though I can't hold a full-time job, I am a freelancer. I can still walk well though there are activities I just refrain from because of the amount of energy I'd expend and need to be out of commission for a day or so after.
There is a lot of research lately that most Americans do not have enough Vitamin D often due to limited outdoor (sun) exposure.
Have you joined the Myotonic Dystrophy Foundation? They have an active online community.
Hope this helps,
Leslie
Marlene