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Strength in numbers
Stroke survivors group forms new partnership
By Janice Youngwith
Wednesday, February 6, 2008
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| Mickey Clancy of Lombard, right, suffered a stroke at age 41. |
It's been more than 10 years since Lombard resident Mickey Clancy suffered a stroke age the age of 41.
The former Californian says ongoing balance, coordination and movement issues, as well as difficulty trying to focus on more than one task at a time, are all reminders of the fateful and surprising event.
With more than 780,000 people having strokes each year, Clancy, 51, says it makes sense for stroke survivors and medical experts to consolidate efforts and band together in the fight.
According to the American Stroke Association, a division of the American Heart Association, someone in the United States has a stroke every 40 seconds and every three minutes someone dies due to stroke.
Clancy's dream and that of other stroke survivors across the state gained momentum this year as the Alexian Brothers Hospital Network joined forces with the American Stroke Association to promote Stroke Survivors Empowering Each Other (SSEEO), a statewide support and advocacy group of survivors Clancy helped to found in 2004.
"It's amazing and absolutely wonderful to partner with the Alexian team," Clancy says. "Their $150,000 grant will enable us to bring together more survivors, fund information and resources for those survivors and continue in our advocacy efforts to raise awareness and eventually pass legislation guaranteeing that those suffering symptoms of a stroke are assessed by emergency medical personal and transported to the most appropriate hospital capable of providing lifesaving stroke care."
Survivor education increases
With growing numbers of survivors due to advances in stroke treatment, the need for stroke education and support services is increasing on the local front, according to Wende Fedder, director of the Stroke Center at Alexian Brothers Medical Center, Elk Grove Village.
"Working with the American Stroke Association and the American Heart Association is an important part of our mission and provides a way for our patients to garner more support after a major life-altering event," she explains. "Helping survivors cope with residual issues of stroke and providing education to help others understand that stroke is a true medical emergency are key roles of SSEEO. Rapid treatment is critical when it comes to survival and preventing permanent disability."
To date, the partnership and funding has resulted in the development of a series of educational statewide teleconference programs focusing on the emotional side of stroke, psychological and cognitive impact, caregiver support, depression, remediation, insurance and reimbursement. The toll-free teleconferences typically feature a discussion by medical experts followed by a question and answer period. Among the first presenters was Brian Leahy, Ph.D., director of Neuropsychology Services at the Alexian Neurosciences Institute.
"The teleconference calls are so helpful, especially to our members downstate who may not be able to get to a stroke support group because the closest hospital is 50-60 miles away," Clancy reports. "Future plans include making the call-in program available to a wider audience through a web-based archive and possible live webcasts."
As SSEEO offerings currently include newsletters and plans to expand special public awareness days, Clancy also envisions a "warm line" program in which survivors would be on call to counsel and comfort other survivors and those recently diagnosed. A special two-day annual meeting in Springfield this past year helped the grassroots group solidify its mission and gave stroke survivors across the state a chance to meet with representatives and senators in regard to legislation designed to create state-certified primary stroke center designation.
"We're an invisible community and our goal is to make sure stroke and its symptoms are as well known to the public and health care personnel as heart attack symptoms are," states Clancy, who today helps guide activities of the 6700-member group.
It can happen to anyone
Clancy points out that stroke kills more than 162,000 people a year and is the third-leading cause of death in the U.S.
"While 50 to 70 percent of stroke survivors do regain functional independence, nearly 15 to 30 percent are left permanently disabled," reports the former pharmacy technician.
"Like many people, I always thought stroke was something that happened to older people. But I've since learned that's not the case. My older sister suffered a stroke just six weeks before I did."
In Clancy's case, April 22, 1997 was the day when a funny tingling sensation on the left side of her body and subsequent 911 call changed her life forever.
"Within 48 hours I lost all ability to move and it wasn't until nearly five weeks later that I was able to take my first steps after relearning how to sit, stand, walk and perform other once-routine tasks," she recalls.
Clancy says heeding her early "fuzziness" warning sign was indeed fortunate.
"My husband and I were to be leaving for a Las Vegas vacation celebrating our 19th wedding anniversary," Clancy reports.
"Instead, I followed my instincts and was in the right place at the right time when the stroke struck."
Clancy says she has since learned that one of the causes of her stroke was a hereditary condition that makes her blood thicker and easier to clot. She's also learned of a maternal grandfather's stroke at age 51.
For information
The SSEEO group provides ongoing peer support, public awareness, and advocacy for public policy change in their efforts to make a difference in the fight against stroke and other cardiovascular diseases as members of "You're The Cure," a grassroots advocacy network of the American Heart Association.
For information on how to help make a difference in the fight against stroke, call Katie Neisen at the American Heart Association at (312) 476-6607 or e-mail katie.neisen@heart.org. SSEEO may be contacted at sseeo_il@yahoo.com.
For general information about stroke, call the American Stroke Association at 1-888-4-STROKE or log on to www.StrokeAssociation.org.
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