BSN PSP/CBD Conference – Jeanette Brown

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

    • 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