20
Fox Focus | Research and Care
Going Back to
the Doctor’s
Office to
Learn From
Patients
by RACHEL DOLHUN, MD
Before joining The Michael J. Fox Foundation
in 2014, I was a movement disorder specialist
in private practice. Nearly every day, I saw
people and families with Parkinson’s. I
explained the difficult diagnosis, the available
treatments, and what the disease may mean
for their future. I did my best to help people
digest this tough news. And I had the privilege
and pleasure of walking through many years
with some of the kindest, most caring people
who taught me how to care and communicate.
But I wanted to do more, to make a bigger
impact. And that’s why I do what I do today:
create resources to meet people where they
are with Parkinson’s, fill in the gaps between
doctor visits and put research in context.
After more than five years away, though, I
longed to be back with patients in the doctor’s
office: to see how care conversations unfold
in the exam room, how doctors and patients
use new Parkinson’s medications and how
people get involved in research. So one recent
afternoon, I sat in on movement disorder
patient visits at a New York City academic
medical center. I listened to the questions and
answers that led patients and their doctors
to the best next steps for each (ranging from
a trial of a new medication for anxiety to a
brain scan to confirm a suspected diagnosis
to no change and recheck in three months). I
saw how they shared frustration over difficultto-treat
symptoms and smiles to lessen the
tension that comes naturally with sitting in a
doctor’s office.
I was struck by some of the commonalities
and differences in Parkinson’s: topics that we
regularly discuss (and that researchers are
studying intently), but which were so clearly
illustrated by the people and families I saw
that afternoon.