Spring / Summer 2020 | Fox Insight
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Patients report medical cannabis alleviates
some symptoms, including sleep problems,
agitation and anxiety, but side effects are
common. Though more analysis is needed,
early findings warrant further research into
medical cannabis as a therapeutic option for
these symptoms and its potential risks so
doctors can accurately advise patients. (The
survey also found that a significant number
of patients don’t discuss their use of medical
cannabis with their doctors.)
Mindfulness-based stress reduction has been
the focus of increasing interest to clinicians
for many years. A Fox Insight survey on
mindfulness strategies in Parkinson’s indicates
that Parkinson’s patients report more stress
than respondents without Parkinson’s and that
stress worsens symptoms, including tremors.
The survey also found that fewer than half of
respondents with Parkinson’s use mindfulness
or meditation techniques to reduce stress,
though the people who do, find it helps. These
initial findings suggest there is an opportunity
to educate patients and their doctors about
the benefits of mindfulness and meditation.
In April, researchers led by Lana Chahine,
MD, of the University of Pittsburgh published
a paper using data from Fox Insight to
identify the most bothersome symptoms
Parkinson’s patients experience during “off”
time — when medications stop working
and symptoms increase. Published in the
journal Movement Disorders, the study found
that nearly half of the most bothersome
“off” time symptoms would be missed by
standard assessments used by doctors. A key
takeaway is that doctors and patients need to
go beyond the list of symptoms on standard
questionnaires to ensure that “off” time is
recognized and treated.
My Research
Journey: A
Patient’s Perspective
“I wanted to get involved in research simply because
I know that without somebody participating,
diseases like Parkinson’s could not be cured,” says
Sharon Roberts, 75, of Dallas, Texas.
Diagnosed with Parkinson’s in 2012, Sharon
made the decision to focus on her well-being by
learning more about the disease and participating
in observational studies toward improving
symptoms and increasing her body strength,
balance, agility and voice.
She found dozens of studies through
MJFF’s study matching tool Fox Trial Finder
(michaeljfox.org/trial-finder). She also
became a participant in Fox Insight because she
wanted to help speed research toward the next
breakthrough for people living with the disease.
“MJFF is offering a way for people to get involved
in research online without needing to go to a
medical center or academic institution. This is
particularly important right now as we are going
through a pandemic — the coronavirus,” said
Sharon. “I signed up for Fox Insight because it’s
easy to participate and make a difference. They
send surveys about health and symptoms every
three months. I like the way the study goes into
detail about why it’s important, and how long
each survey is going to take.”
To read more about Sharon’s research journey
and others, please visit michaeljfox.org/realtalk-participants.