- Dystonia Disorder
- Interviews
Penni's interview
How did all start?
One week after Trump was elected, I was sleep deprived and stressed out. I was traveling, visiting relatives in Texas and began having eye spasms where my eyes blinked and shut. Then it progressed to face, jaw, scalp, arms and esophagus.
Do you already have a diagnosis? How long did it take you to get it?
Yes. I was diagnosed within one month.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Neurology. Movement specialist.
What has been the most useful thing for you so far?
Botox injections. Avoiding bright lights. Medication and acupressure on eyebrows when eyes are closing, to open them.
What have been your biggest difficulties?
Socializing. Headache and eyes closing.
How has your social and family environment reacted? Have your social or family relationships changed?
Yes, family is supportive but it’s hard to go out if i don’t know when my eyes will close or face will distort.
What things have you stopped doing?
I also have bulging discs with much pain running down the back of hips and legs so I’m still socializing but it’s limited. Driving at night is limited due to flashing lights.
What do you think about the future?
I’m fearful and a little sad but trying to keep a good attitude.
So far, which years have been the best years in your life? What have you done during them?
30s, I was much more active
What would you like to do if you didn’t have your condition?
Dance, snorkel, paddle board, hike and travel more.
If you had to describe your life in a sentence, what would it be?
I’m grateful but still trying to find my way and navigate this new condition.
Finally, what advice would you give to a person in a similar situation?
Find support. Don’t give up. Notice when it’s even a little better.
