- Progressive Supranuclear Palsy
- Interviews
DianeTolliver's interview
How did all start?
Mother began having trouble seeing and negotiating steps.
Do you already have a diagnosis? How long did it take you to get it?
Diagnosis confirmed by autopsy of brain. Otherwise, it took us 3-4 years to find the neurologist who identified her as likely having PSP.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Neurologists, opthomologists.
What has been the most useful thing for you so far?
Actually putting a name to the mysterious disease helped us understand it and accept it.
What have been your biggest difficulties?
Mother had MANY difficulties. The biggest might be talking and walking.
How has your social and family environment reacted? Have your social or family relationships changed?
Yes, greatly.
What things have you stopped doing?
Stopped driving. Stopped talking on the telephone. Stopped feeding herself. Stopped walking. Stopped being able to get up out of bed. Stopped handwriting/hand printing. Stopped being able to dress herself. EVERYTHING EVENTUALLY STOPPED,.
What do you think about the future?
I am the caregiver daughter. Life without my mother is horrible.
Finally, what advice would you give to a person in a similar situation?
Trust God.
