Living with Parkinson’s
Revolutionize
Research
from the Palm
of Your Hand
by RACHEL DOLHUN, MD
Technology makes our lives easier and keeps
us connected. You can do almost anything
online today — order groceries, watch a
movie or video chat with family a continent
away. If you are living with Parkinson’s
disease, the technologies you use on a daily
basis also allow you to find clinical trials and
track your experience with the disease.
Widespread use of the internet has opened
new ways for people with Parkinson’s to
join research. Some studies are now carried
out mainly or entirely online. That makes
participation an option for many people who
might not otherwise: those who live far away
from academic medical centers where much
research takes place, who have difficulty
traveling or who simply don’t have much
spare time.
The Michael J. Fox Foundation is leveraging
digital technology to bring you closer to
the researchers who are pursuing new and
improved PD therapies. Our online study Fox
Insight (foxinsight.org), for example, gathers
data directly from people with PD and their
loved ones about their experience living with
the disease through periodic online surveys.
You can log on from wherever convenient
to share symptoms, medication effects and
other aspects of life with Parkinson’s. When
analyzed as a collective, anonymous dataset,
this information can give scientists insights
that can lead to better understanding of
disease and new treatments.
And technology is putting research in
patients’ hands in more ways than one.
Smartphones, apps and wearable devices,
such as fitness monitors, let you record how
you live with Parkinson’s 24/7. Researchers
are using these tools to learn how a person’s
symptoms change over time and to help
doctors more easily adjust medications. In
these ways, technologies hold the potential
to shape Parkinson’s care. A typical doctor’s
appointment is 15 to 30 minutes every
three to six months. With the variability of
symptoms you may experience day to day or
even throughout the day, it can be difficult
to give your physician a full picture of your
PD in such a short window. Information
from wearables and mobile devices may
ultimately give you and your doctor a better
perspective of your Parkinson’s that could
lead to personalized medication adjustments
or guidance on sleep or exercise.
People with PD are the true experts on the
disease. Technology is allowing patients to
chart and share nuances about life with the
disease as never before — a revolution that
holds enormous promise in the pursuit of a
cure and personal health care.
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The Fox Focus