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Mickey Clancy and her husband
were supposed to be heading to
Las Vegas to celebrate their 19th wedding
anniversary. Instead, they were in
an emergency room near their
California home,worried that she might
have suffered a stroke.
When she woke up that day, the left
side of her body was numb, her vision
and speech were impaired, she had
trouble walking and thinking, and she
was nauseous and had a severe
headache - all telltale stroke signs that
Clancy, then 41, knew all too well,
because her sister, then 43, had suffered
a stroke six weeks earlier.
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| Dr. Brian Leahy, Ph.D., Director of Neuropsychology Services at the Alexian Neurosciences Institute, and Tracy Rogers, ABHN Vice President of Operations, (second from left), greet stroke survivors Cari Biamonte (second from right) and Mickey Clancy at the formal launch of the ABHN-ASA partnership to promote SSEEO. |
Today,more than 10 years later,
Clancy still bristles at the memory of a
triage nurse's reaction when Clancy told
her she thought she'd had a stroke."Well,
what makes you think that?" the nurse
asked.
"She asked the question condescendingly,
like a 41-year-old couldn't have a
stroke and like I wasn't in the medical
field, so how could I know the symptoms
of a stroke?" says Clancy, a founder of
Stroke Survivors Empowering Each
Other (SSEEO), a grass-roots group dedicated
to providing support and
resources to stroke survivors and care
givers, advocating on their behalf, and
increasing stroke awareness.
The nurse's reaction, Clancy's subsequent
treatment in the ER, where she
was tested and observed for six hours
before a neurologist diagnosed her
stroke, and the years of rehabilitation
that followed made her determined to
ensure that future stroke victims "don't
have as difficult time as I had," she says.
Clancy, who suffered the second
stage of her stroke less than 48 hours
after she was admitted to the hospital,
had to learn to walk, talk, think and use
her arms and hands again.Now living in
Illinois with her husband, she describes
herself as fully functional but not fully
recovered. She continues to work on her
balance and happily reports recent
improvements. She considers herself
lucky to be alive."I'm always recovering
every day," she says."Here I am, 10 years
after my stroke, and I'm still improving."
For many of those years, Clancy has
worked closely with the American Heart
Association (AHA) to make things better
for other stroke survivors."I would
go and do anything the American Heart
Association asked me to do," says Clancy,
who has played a leading role in AHA
stroke education campaigns and lobbying
efforts on behalf of stroke survivors.
Her efforts recently received a boost
when Alexian Brothers Hospital Network
(ABHN) joined forces with the American
Stroke Association (ASA), a division of
AHA, to promote SSEEO, the only group
of its kind in the nation."It's wonderful.
It's awesome. It's great," Clancy says of
the new partnership."It proves to me
that we are doing the right thing and
something that's needed."
ASA decided to partner with ABHN
because "Alexian is renowned for their
stroke center of excellence," says Katie
Neisen,Grass-roots Advocacy Director for
the ASA and AHA."They were an obvious
partner for a stroke group like SSEEO."
With stroke striking about 700,000
Americans each year, and with growing
numbers of survivors because of
advances in stroke treatment, the need for stroke education and support services
is increasing, says Wende Fedder,
Director of ABHN’s Stroke Center.“This
is a very integral part of our mission at
ABHN: to reach out and partner with
other facilities and organizations like
the American Heart Association to help
people prevent stroke and cope with the
residual issues of stroke,” she says.
A key focus of stroke education
today is helping people understand that
stroke is a medical emergency, says
Kelley Clancy,ABHN Assistant Vice
President for External Affairs.Medical
advances have made it possible not only
to save the lives of stroke victims, but
also to avoid permanent disabilities.
Rapid treatment, however, is critical to
victims' chances of survival and recovery."
If people don't get to the hospital in
time,we can't use these fabulous new
techniques to help save their lives,"
Kelley Clancy says.
Yet people often ignore stroke warning
signs or take a wait-and-see
approach."They "try to go to bed, shake
it off and wait six hours,"Kelley Clancy
says. The message ABHN wants to convey
is: "Don't wait.Don't you decide.We
want you to come in,' '' she says.
SSEEO's mission dovetails with
ABHN's commitment to stroke prevention
and helping stroke survivors. Since
Mickey Clancy and four other stroke survivors
founded the group in 2004, the
organization has grown rapidly, enlisting
nearly 300 stroke survivors and care
givers in Illinois.With ABHN's backing,
she expects further growth and hopes
someday to expand SSEEO nationally as
an autonomous organization.
Under the new partnership,ABHN is
providing funding and other resources
for SSEEO, including a toll-free, call-in
support group that connects stroke survivors
and care givers with stroke experts
about nine times a year.During each callin
session, a guest speaker delivers a presentation
on a stroke-related topic for 30
to 45 minutes, and the lines then are
opened for questions and dialogue
among all participants. SSEEO's steering
committee selects the topics, and ABHN
identifies experts from ABHN or elsewhere
to deliver the presentations.
Dr. Brian Leahy, Ph.D., a licensed
clinical psychologist and Director of
Neuropsychology Services at the Alexian
Neurosciences Institute,was the featured
speaker during an inaugural three-part
series of call-in sessions this past fall.
More than 100 people participated in the
first session, which occurred Sept. 21
during the formal launch of the new
partnership at Alexian Brothers Medical
Center in Elk Grove Village, Ill. Leahy
addressed the psychological impact of
stroke during the first session.His presentations
at the next two sessions
focused on family and care-giver issues
in stroke cases, and the cognitive effects
of stroke and techniques for remediation.
"The calls are really helpful to a lot
of people, especially downstate, where
people may not be able to get to a stroke
support group because the closest hospital
might be 50 or 60 miles away," Mickey
Clancy says.
Plans call for making the call-in sessions
available to a wider audience
through a Web-based archive, and possibly
offering the sessions live via Webcasts.
ABHN also plans to work with SSEEO to
develop a patient visitor program, under
which stroke survivors would visit with
recent stroke victims to comfort and
encourage them. In addition,ABHN
stands ready to connect survivors with
rehabilitation programs, support groups
and other services.
As SSEEO continues to evolve,Mickey
Clancy envisions a "warm-line"program,
in which stroke survivors would be on call
to counsel other survivors and recent
stroke victims by telephone."We're an
invisible community," she says of fellow
stroke survivors."My wish is to get stroke
survivors to believe they are viable people,
who can be out in public and can do what
everyone else does."
Her overarching goal is to make stroke
and its symptoms as well known to the
public and health-care personnel as heart
attack and its symptoms are.With ABHN's
help, she hopes to achieve this goal.
"They bring with them the expertise
about stroke," she says."They care about
stroke. They care about stroke patients
and about getting rid of this disease.
They realize stroke is a life-changing
event that needs to be addressed not
only while you're in the hospital or rehabilitation,
but also after you get out."
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