Being (A) Patient With PSP
Jeanette Brown, MD (retired), person with PSP
- Diagnosed in March 2016
- At UCSF since 1987
- Chair of multiple NIH review committees
- Director of UCSF women’s health clinical research center, Director, specialized center of research, Director of urogynecology, UCSF mentor of the year award 2011
- Retirement (shortly after PSP diagnosis)
- No multi-tasking
- Opt for social security benefits
- Move to SF a condo with an elevator near family
- Installed grab bars, had to re-do bathroom to have a walk-in shower
- UCSF Memory & Aging
- 3 car accidents in 3 months
- Primary doc sent to neurologist, neurologist sent her to UCSF memory and aging center. Dr. boxer made the diagnosis
- Offered a phase 2 clinical trial which she is involved in now
Current symptoms
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- No driving since 2015
- Slow speech, inability to write, down to typing with one finger and lots of mistakes
- Wobbly and must be careful, always tired
- Feels sad, worried, fearful, anxious, powerless, disillusioned, indecisive, incapable
- Travel
- Went to Macchu Picchu with brother in January, just returned from Viking river cruise
- Now is the time to go – always travel with assistance at the airport
- Lessons Learned
- Travel now or do whatever you want to do
- Enjoy the moment, try not to live your diagnosis, live one day at a time
- Get your finances in order
- Start PT and OT before you really need it
- Prepare your family and yourself for the inevitable decline
- Questions?
- Feel free to contact at [email protected]
- Started a support group in SF – join us!
- Meet once a month at Café Roma 526 Columbus in North Beach the third Tuesday of the month at 11:30