- Oculopharyngeal muscular dystrophy
- Interviews
JoaK's interview
How did all start?
Drooping eyelids
Crossing eyes
Trouble swallowing
Do you already have a diagnosis? How long did it take you to get it?
Yes. After being tested for Myasthemia gravis and finding that was not what I had, I had genetic testing in 2012. I tested positive and learned one month after the test.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Neurological checkups
What has been the most useful thing for you so far?
Learning what I can and cannot eat successfully by trial and error.
What have been your biggest difficulties?
Drooping eyelids and cross-eyes - it affects my ability to drive. I can't drive at night, for example.
How has your social and family environment reacted? Have your social or family relationships changed?
No effect. Everyone is very supportive.
What things have you stopped doing?
Eating certain foods.
What do you think about the future?
I am worried about when my swallowing gets worse.
So far, which years have been the best years in your life? What have you done during them?
All my years have been great. I have taught for 47 years and still teach college courses online. I have written two textbooks and 8 novels. I have raised two children and run a farm and business. I have traveled widely and done ethnographic fieldwork in several countries.
What would you like to do if you didn’t have your condition?
Eat everything I want, especially at formal dinners.
If you had to describe your life in a sentence, what would it be?
Very exciting and fulfilling
Finally, what advice would you give to a person in a similar situation?
Live your life to your fullest and make adjustments as needed.
