- Stiff Person Syndrome
- Interviews
How did all start?
Diabetes - College
Epilepsy - 30s
SPS - 42
Came on fast 1 month - lost 50 lbs, blurry vision, paralysis
Do you already have a diagnosis? How long did it take you to get it?
5 years thought it was MS from spinal tap results and symptoms
What has been the most useful thing for you so far?
IVIG
What have been your biggest difficulties?
Anxiety -- then stiffness
How has your social and family environment reacted? Have your social or family relationships changed?
Extremely helpful
What things have you stopped doing?
All workouts, playing catch, biking -- anything needing balance
What do you think about the future?
Heading to Johns Hopkins 2018 - ???
So far, which years have been the best years in your life? What have you done during them?
Right now
What would you like to do if you didn’t have your condition?
Go for walks with the family
If you had to describe your life in a sentence, what would it be?
My family taking care of me
Finally, what advice would you give to a person in a similar situation?
Slow down!!! Use the cane / walker
