- Progressive Supranuclear Palsy
- Interviews
syrilynt's interview
How did all start?
Memory issues was the first indicator, followed by falling backwards/lack of balance. Due to spinal surgery, that was first blamed on that. Neurologists in our small town dismissed the memory issues/balance for several years.
Do you already have a diagnosis? How long did it take you to get it?
Yes, diagnosed in 2016, however it was undiagnosed for about 4 years due to incompetent doctors in our home town.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Physical therapy - probably the most useful in keeping functions
Neurology - botox injections in the forearm for muscle rigidity and atropine drops for drooling
Clinical trials - experimental drugs have really slowed he progression of the disease
What has been the most useful thing for you so far?
Clinical trials
What have been your biggest difficulties?
Swallowing and choking issues
How has your social and family environment reacted? Have your social or family relationships changed?
Yes to change - not being able to do the things that I had done before the disease.
What things have you stopped doing?
Hiking, reading books and magazines, travelling far.
