Many of you out there suffer from some form of chronic disease. My husband suffers with Oculopharyngeal muscular dystrophy (OPMD), a rare form of Muscular Dystrophy that causes progressive muscle weakness predominantly in the eye (oculo) and throat (pharyngeal) muscles. Patients usually appear healthy before the onset of disease symptoms, typically between the ages of 40 to 60.
https://musculardystrophynews.com/symptoms-of-oculopharyngeal-muscular-dystrophy/?fbclid=IwAR0QsUHZlX00UtR-wkf-GouoLYhEk1bKIeTzpWNysUcLOLPvXRK8ogncNTk
There is more information regarding this disease at:
Here is some information that I have learned through the years. Jacks Mom (Antoinette Rancout) was a French-Canadian descendant. From what I understand, her Dad had droopy eyelids. Most of my mother-in-laws siblings ( there were 10 children) were affected starting with eyelids, trouble swallowing and walking. Some had feeding tubes, throat stretching, some had minor symptoms and others had all three. The disease has been passed down to some of their children who are staring to have difficulty with their eyes, throat and legs. OPMD is genetic.
A few years ago, Jack (my husband) started with droopy eyelids. His eye doctor at the VA Hospital operated on him and after several surgeries, he was seeing double in one eye. Dr. Tien, another eye specialist tried to correct the double vision and found it difficult because he had built up a lot of scar tissue around the lower muscle of his eye. Dr. Tien research this rare disease and found that 3 Sisters from France moved to Canada and brought this gene with them. As they married the gene was passed on to their children and so forth and so on. There are clusters of this rare form of Muscular Dystrophy through out the United States. He still has double vision but is able to overcome it.
Within a few years after the eye surgery Jack started have trouble chocking. He has also adjusted to that situation by eating slowly and avoiding spicy foods. He seems to have the situation under control.
Now he is having trouble walking. His legs are very weak so he has resorted to a walker. Luckily that is working out. We don't know what's to come next but we will be prepared for it because now there is so much information out there.
If anyone reading this has any information regarding this disease, please contact me. I would appreciated any helpful information.
