3
April 2016
Shared Experiences, Connections Lead to New Parkinson's Support Group
Story Highlights
Seabrook Island resident Floyd
DeAndrade diagnosed with
Parkinson's Disease
Floyd connected with other
residents of Kiawah/Seabrook
While walking his dog last year,
Seabrook Island resident Floyd
DeAndrade noticed his foot dragging.
The endurance-sport athlete, who at 77
looks closer to 60, thought it might be
a back issue, but heeded his wife Susan’s
advice to see his doctor, which led to a
referral to a neurologist specializing in
movement disorders.
Formed Sea Islands Parkinson's
Support Group
After a detailed exam in which he
performed simple tasks to assess the
agility of arms, legs, muscle tone, gait and balance, Floyd learned
that he had Parkinson’s Disease (PD).
PD is a progressive disorder of the nervous system that can affect
movement and cognitive function. Dying neurons cause a loss
of dopamine which
sends messages to the
part of the brain that
controls
movement
and coordination. It
can often come with
alterations in memory,
attention and thinking
– not dementia, but
easily mistaken for it.
An estimated 10 million
people worldwide live
with PD, 1 million in the
United States. It strikes
50% more men than
women, and the average
age of onset is 60.
Floyd’s reaction to his
diagnosis was immediate
action. “PD comes with
a curtain, the perception
that we must hide from
our disease, or that
others are afraid of it.
I’m open about it to
set an example that you can take control to slow the disease’s
progression and enjoy a better quality of life.”
Through this openness, Floyd has connected with other members of
the Kiawah and Seabrook communities who share his diagnosis, as
well as their care partners. One of those members is Former Kiawah
Mayor Bill Wert. Bill’s PD manifested in balance issues, a stiffening of
facial muscles, softening of voice, and motor impairment primarily
on one side of his body. While initially dismissing early symptoms
as part of the natural aging process, with the encouragement of wife
Pat, Bill too sought an assessment which led to his diagnosis. Like
Floyd, he took action, working with both physical, occupational and
speech therapists to halt the symptoms and even restore abilities.
Partners in Care
Parkinson’s is a family disease;
those with PD are challenged by
changes to life as they knew it,
isolation, depression and anxiety.
Their care partners - in many
cases their spouse, adult child
or grandchild - face their own
challenges. They, too, experience
loss of control, helplessness and
fear for the future. They are also
juggling:
Sea Islands Parkinson’s
Support Group
When: Monthly, starting
Thursday, April 28 at 2 p.m.
Where: Church of Our Saviour,
4416 Betsy Kerrison Parkway,
Johns Island
Who: Those diagnosed with PD, as
well as Care Partners, are welcome.
Other Details: Sessions will be
informal and are open to all,
though the main focus is on fullor part-time residents of Kiawah,
Seabrook, Johns and Wadmalaw
islands. There are no dues, and
RSVPs are not required.
Contact: Floyd DeAndrade –
[email protected].
• Helping maintain their loved
one’s quality of life.
• Educating themselves about
symptoms, treatments, and
the progression of the disease.
• Keeping track of
appointments, medication schedules, exercise and diet.
• Providing the love and support necessary to meet the
challenges of living with PD.
“Care Partners – I prefer that term over caregiver because
we truly are partners in managing this disease - have unique
responsibilities,” says Pat. “It helps to talk with others, to
share lessons learned, victories, challenges and resources.
There is a wealth of information available from resources
like the National Parkinson’s Foundation, the Michael J.
Fox Foundation, the Davis Phinney Foundation, locally at
MUSC, seminars, books and websites – much of it free which those managing on their own may not realize.”
The Werts and DeAndrades connected through openness
and self-education. Over time they met other Kiawah and
Seabrook islanders living with PD. Those connections have
led to the formation of the Sea Islands Parkinson’s Support
Group, associated with the Charleston Chapter of the
National Parkinson’s Foundation. Having a group nearby
will make support more accessible so that more can take
advantage of help.
Floyd says, “You shouldn’t feel guilt or shame about your
diagnosis. You can have a good life. In this peer group, you’ll
have a place to be open, to learn, or to just listen. There will never
be pressure to share information. Your privacy will be respected.”
The Sea Islands Parkinson’s Support Group (SIPS) will meet
monthly, with the first session scheduled for Thursday, April
28, at 2 p.m. at Church of Our Saviour, 4416 Betsy Kerrison
Parkway, Johns Island. Future meeting dates will be added
to the KICA online event calendar (kica.us/events) as they
become available. To learn more about PD, view a more
detailed version of this article online at kica.us, or contact
Floyd at [email protected].