Group plans events to bring awareness to ALS
By Callie Lyons
September 2, 2008
A season of awareness kicked off Sunday, Aug. 31 as the Cincinnati Reds hosted the ALS Association at the Great American Ball Park. It’s a fitting tribute to the condition, known commonly as Lou Gehrig’s disease after the professional baseball player who was diagnosed at the height of his fame.
But Gehrig is not the only famous person to suffer from the condition bearing his name. Sesame Street creator Jon Stone, “Guiding Light” soap star Michael Zaslow, british actor David Niven, and FDR Vice President Henry A. Wallace were all afflicted with the disease. Scientist and author Stephen Hawking, who was diagnosed in his 20s and continues to live with the disease four decades later, is an atypical case. Gehrig was 37 at the time of his death.
Amyotrophic lateral sclerosis is a motor neuron disease, meaning that it is a degenerative condition that attacks specific cells in the brain and spine leading to a slow progression of lost physical capabilities.
There is no one test specific for diagnosing ALS, and its early symptoms may be confusing, according to the U.S. Food and Drug Administration. It most often strikes people between the ages of 40 and 50. Men and women are impacted similarly, and there appear to be no differences in incidence amongst racial divides. But new studies suggest that people who serve in the military are 60 percent more likely to contract the disease, according to the ALS Association.
Over time the disease progresses until common functions such as walking, speaking, eating, swallowing and breathing are no longer possible. For this reason, families often turn to long-term care. The Hickory Creek Nursing Center of Athens provides care for about two patients with ALS each year.
Hickory Creek Director of Nursing Tammy Paloo said the care often takes the form of support for eating and breathing.
“Usually breathing is one of the last things they are able to do,” Paloo said.
Respiratory failure is usually the cause of death. However, the victim’s mind often remains sharp.
“A lot of families find it difficult to adjust,” Paloo said. “Especially with a new diagnosis. It’s hard to see what is coming.”
Despite decades of research, there is only one pharmaceutical approved by the FDA for the treatment of ALS. Rilutek appears to prolong the life of ALS patients by about three months. The lack of options means that clinical trials are the only other recourse for patients in search of newer or different methods.
Stem cells and gene therapy are promising areas of research, according to the ALS Association. At the end of July, researchers from the Harvard Stem Cell Institute and Columbia University announced a major development. By using skin cells from a patient, researchers were able to derive disease-specific stem cells and transform them into the very type of brain cells destroyed by ALS, which makes way for improved drug research and development.
Until better treatment methods emerge, there is help for patients and their families. The Central and Southern Ohio Chapter of the ALS Association provides free services for 200 patients and their families throughout the state. The Columbus office covers the Athens area. Executive Director Marlin Seymour said that some patients are referred by their physicians and others find the group on the Internet.
Once contact is made, a patient services coordinator will create a file and begin to identify what kinds of services may be of value. The chapter provides a patient resource guide, educational materials and monthly support groups. They also offer an equipment loan program for patients without insurance or for those whose insurance companies have a waiting period. The equipment loan includes such items as wheelchairs, walkers, breathing and speech devices.
“The typical life span is three to five years from diagnosis,” Seymour said. “So, they don’t have time to wait.”
Seymour said the loan of a simple speech device can improve an individual’s quality of life immensely.
“You watch people lose all of their physical abilities one by one,” Seymour said. “They can think and communicate, but if a person can’t talk that really cuts them off from their family and from society.”
If Seymour seems passionate about her job, it’s because she lost her mother to ALS after just a yearlong battle.
“She used a magna doodle board to communicate,” Seymour said.
But through her efforts, other families have better options. The ALS Association exists to fulfill the local mission of guiding families through the maze of coping and to provide quality of life options for the patient. As such, the chapter is responsible for gathering donations of equipment and financial contributions to support the cause.
This fall, three events will be held to raise money and awareness for the association. A “Walk to Defeat ALS” will be held in Dayton on Sept 21, in Columbus on Sept. 28, and in Cincinnati on Oct. 5.
For more information about the ALS Association, or to participate in an upcoming event, call 866-273-2572 or visit the Web site at www.alsohio.org.
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