Cascade family supports efforts to find ALS cure
By Lauren McLane The Record Herald
Published: Monday, September 24, 2007 10:27 AM CDT
Edye Dandy, center, with her husband Steve and daughter Jen.
CASCADE - Aside from the wheelchair, you wouldn't know Edye Dandy has ALS. But Dandy, 46, has lived with the debilitating disease for more than a decade.
When she opens her mouth to speak, her voice is hoarse and low, and she sometimes has difficulty pronouncing words. Difficulty with speech is a symptom of ALS.
ALS, amyotrophic lateral sclerosis, is better-known as Lou Gehrig's disease, named for the New York Yankee first baseman who was diagnosed with the disease in 1938.
The disease is a progressive deterioration of motor neurons, the nerve cells in the central nervous system that control motor function. It is characterized by chronic, progressive paralysis. Victims lose the ability to speak, move and, ultimately, breathe. It is always fatal. In most cases, the mind remains unaffected.
The cause of ALS is unknown, but the disease usually begins with localized muscle weakness and tingling.
Edye said she first noticed problems in 1995. “It was a long process (from problem to diagnosis),” she said.
She began tripping and falling and losing strength in her hands and arms.
“You were dropping things a lot, too,” her daughter, Jen, 22, reminded her.
Edye also noticed the change in her voice that has become more pronounced in the intervening years. “I was sent to a neurologist, who told me it was all in my mind.”
She and her family persevered and sought treatment at Johns Hopkins University.
“Johns Hopkins has its own ALS clinic. It's the main research facility (in America),” noted her husband Steve.
The doctors at Johns Hopkins administered a battery of tests to Edye - “blood work, CAT scans, MRIs, nerve conduction - everything,” Edye said.
There is no specific test for ALS, she explained, so it is a process of elimination in which other maladies such as multiple sclerosis, muscular dystrophy and Parkinson's disease are ruled out.
Finally, two years after the onset of her symptoms, Edye had a diagnosis. The doctors told her not to expect to live more than two to five years.
The doctors also prescribed Rilutek, the only drug federally approved to treat ALS. It is believed to extend life expectancy by six months.
“I've been on it for 10 years,” Edye said.
“I was involved in a trial for an experimental drug for two years,” she said. “I really think it helped me.”
But the trial was stopped because the drug did not pass the Food and Drug Administration's tests, Steve added.
Because so little is known about ALS, treatment options vary.
“Usually the younger you are, the longer you live,” Edye said.
“It treats everybody differently,” Jen added.
Walking to defeat ALS
The “Walk to D'Feet ALS” is held annually in locations around the country. The Hagerstown walk, in which the Dandys and their team - Edye's Feeties - will participate is scheduled for this Saturday, Sept. 29.
The teams raise money through donations and sponsorship. People and businesses can either make flat-out donation to the organization or the team or sponsor the team to walk a certain number of miles.
This is the third year for the Hagerstown walk, Jen said. Prior to that, the Dandys participated in the Washington, D.C., walk for six or seven years.
Last year, Jen said, they were the featured family. They carried the banner to open the walk and made a speech at the opening ceremony.
“Our team has around 20 members. Last year, we raised $3,974. We were the top team for Hagerstown,” Edye said.
One of the goals of the ALS walk is to raise awareness about the disease and to raise money to fund research to find a cure.
“It's still not like diabetes, but we are getting the word out,” Edye said.
“I've noticed more T.V. programs - not a lot, but more than before. “‘ER' had a story about a doctor who had ALS,” Jen added.
Living with ALS
Edye said she has not allowed ALS to dictate the terms of her life. She still goes to Steve's softball games. In her motorized wheelchair with over-sized wheels, “she can go anywhere,” Steve said.
The family recently visited the Catoctin Zoo, and Edye amazed zoo workers by going off-road in her wheelchair.
The family's strong Christian faith also has helped.
Their church, the Germantown Church of God, started a fundraiser for Edye and raised $26,000, which allowed them to purchase a specially-equipped van to transport Edye.
The church also prepares meals for the family twice a week, which Steve says gives his culinary skills a respite.
“My repertoire has gotten a lot better,” he added.
Steve, who retired from the Air Force in 1992, left his job at Mount St. Mary's University, where he worked for the department of public safety, in 1999 to be Edye's full-time caregiver.
Because she has broken both of her arms in falls, Edye no longer goes upstairs in the family's two-story home.
Jen and Steve take turns sleeping on the couch in the living room, next to the chair in which Edye sleeps.
The Hagerstown ALS Walk will be held Saturday, Sept. 29, at the Hagerstown Fairgrounds. Registration is at 9 a.m., the ceremony is at 10, and the walk begins at 10:15 a.m.
For more information, contact Christine Kirkley (ckirkley@ALSinfo.org) or Steve and Edye Dandy at (301) 241-4219.