BSN PSP/CBD Conference – Phil Myers

Eight Things we Learned From Jackie’s PSP Journey

Phil Myers, (former) caregiver to wife with PSP


8 items we learned from Jackie’s PSP journey

1. Get second or third opinions early, especially for unexplained symptoms

2. Don’t accept an unconfirmed or non-specific diagnosis. Push to get to a top neurologist preferably a movement disorder specialist

3. Make the significant care decisions early

Feeding tubes, DNR, hospitalization or die at home, brain donation

Use an advanced health care directive and physicians orders for life sustaining treatment (POLST)

4. Start exercise early and continue exercise as long and as much as possible

5. Make life as normal as possible

6. Check out available clinical trials.

7. As the caregiver or patient, be proactive. Participate in support groups, go to presentations, and do your research online. A big success of the disease is attitude and fighting it.

8. Keep a “binder” of cross doctor communications and researchers, keep things filed safely