Partners in Research
When Steven Spencer received his Parkinson’s
diagnosis 13 years ago, he didn’t hesitate to sign
up as a clinical trial participant. And neither did his
wife, Kae, who joined him as a control volunteer.
The couple, who’ve been married for more than
40 years, are used to doing things together —
studying for college exams, working as speech
pathologists and raising their children. When
Parkinson’s disease (PD) entered their lives, it
was natural to partner in research.
Steven and Kae have participated in several
studies — some together, some independently.
For instance, they can take part in Fox Insight,
MJFF’s online study, at the same time from
their living room. Steven completes quarterly
questionnaires to tell researchers about life with
PD; Kae fills out the same surveys as a control
volunteer. Other trials require Kae’s assistance
so that just Steven can participate — she drives
him to appointments and helps him navigate the
medical center, for example. Kae sees this as her
contribution, too: “We’re a team,” she states
matter-of-factly. “We’re in it together.”
Steven’s deep brain stimulation (DBS) surgery
three years ago hasn’t stopped the pair either.
In fact, it may have given Steven more energy
to pursue the studies that need him — the
procedure lessened his fatigue and eased
his motor symptoms. But as with all medical
conditions or medications, DBS makes him eligible
for some studies and excludes him from others.
Steven and Kae’s involvement in research
goes beyond clinical trials. In February 2017,
they attended MJFF’s Public Policy Forum in
Washington, D.C. There, they joined 200 other
care partners and people with Parkinson’s
to advocate for Parkinson’s research, drug
development and health care.
Of their experiences in Parkinson’s research, Kae
observes, “There are thousands working on a
cure, and they’re chasing down thousands of
pathways.” She goes on, “It’s humbling to see so
many at work, and it’s empowering to know we
are part of that.”
Watch more of Kae and Steven’s story at michaeljfox.org/ParticipantPack.
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Navigating Clinical Trials: A Guide for Parkinson’s Patients and Families