What is Oculopharyngeal Muscular Dystrophy?

Question

Hi doctor,

I am an oculopharyngeal muscular dystrophy patient. I have gone for physiotherapy and speech therapy, and slowly, my leg is also becoming weak now, and it is not easy to get up from my seat or floor without support.

Please give me some advice.

Answer 1

Hello,

Welcome to icliniq.com.

Oculopharyngeal muscle dystrophy is a progressive disease. It starts with the involvement of the eyes and throat muscles and later involves the muscles of the legs and arms. As your muscle biopsy was done eight years ago, you have had weakness in your leg muscles for two years in the form of difficulty getting up from a sitting position. At this moment, there is neither any curative treatment for this medical condition nor any treatment to stop or halt the progression of the disease.

In this situation, the only possible thing you can do is regular physiotherapy with muscle-building exercises to preserve the mobility of joints and strength of remaining muscle fibers. If you have difficulty swallowing, think of prolonged Ryles tube feeding or PEG (percutaneous endoscopic gastrostomy). If you have difficulty walking, you can try to get a wheelchair. The option can be an electric wheelchair, giving some independence in daily outdoor activities.

Thank you.