Maintaining Independence with Muscular Dystrophy
In 2005, I was diagnosed with Myasthenia Gravis. In 2008 I had surgery to remove my thymus gland as I had a thymoma. I was not getting better so my Dr said let’s do a muscle biopsy which came back as showing ragged muscles, which in turn my dr said we need genetic testing. They used my mother and son, who had also been...
View MoreWhether you have MD, or a child with MD, maintaining independence is crucial. What do you do to make sure that you or your child still have a sense of independence?
My daughter & I are still able to drive. I’m struggling with my son who is 20 and can’t drive because of the disease. He is on social security disability but not enough to live on his own or split rent with friends.
MD can put a lot of limitations on your body. What are your own limitations, and how do you attempt to overcome them?
I have double vision that I have prism glasses so I can drive. I have problems swallowing daily and have a few techniques I learned from occupational therapy. My legs are very weak so I use a walker for long walking and a wheelchair for really long walking distances.
What advice do you have for other MD patients who want to maintain their independence?
Occupational therapy. They can show you many techniques you can use to help you.
