Spring / Summer 2020 | Research and Care
21
“Patients are not
only the experts
on the disease,
they’re also
teachers.”
+ The variability of disease: each person
has a different mix of symptoms, different
treatment approach, different course.
That day, three people in a row had three
different “types” of the disease: some
with mostly non-movement or mood
symptoms; others with tremor, walking
and balance problems.
+ The difficulty with diagnosis (there is
no objective test): one person had seen
multiple doctors over the course of a year
and wondered about the criteria
for diagnosis.
+ The importance of support: each person
had built their own care team, some with
family members; others with mental
health care providers; still others, a
language interpreter.
Seeing how people experience Parkinson’s,
how doctors and care teams help them
understand and manage, and how patients
and loved ones respond gives me a fresh
perspective. And that helps me create
resources to hopefully meet people’s needs
in and outside of the doctor’s office. Patients
are not only the experts on the disease,
they’re also teachers — teaching others
practical tips to get around symptoms,
researchers how and why the disease
changes, and doctors how to see and care for
a whole person.
Thanks for teaching me. I’ll be returning
to clinic regularly, so stay tuned for more
reflections and insights. And in the meantime,
visit michaeljfox.org/ask-the-md for practical
tips and information on Parkinson’s care
and research.