During their 20-year marriage, Deborah and James Parker have celebrated many milestones, including fulfilling her dream of visiting every continent with a trip to Antarctica for her 50th birthday.
But for the past four years, when she blows out the candles on her birthday cake, Deborah has made the same wish: to find a cure for amyotrophic lateral sclerosis or ALS, more commonly known as Lou Gehrig's disease. James was diagnosed with the disease in November 2007.
"I wonder why God puts this disease on human beings. My husband is a great man and a great person who received a Purple Heart and a Bronze Star in Vietnam and worked for 20 years with the Tucson Fire Department, retiring as battalion chief. To see him tumble like this is so very hard to watch. He is disintegrating in front of my eyes," Deborah said.
ALS is a rapidly progressing, incurable disease that destroys nerve cells (neurons) in the brain and spinal cord responsible for voluntary muscle control.
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Motor neurons lose their ability to send messages to muscles, resulting in muscle weakness and eventually paralysis of the arms, legs and body.
As many as 30,000 Americans have ALS, and an estimated 5,600 people across the country are diagnosed with the disease each year, according to Kim Hughes, director of patient and family services for the ALS Association Arizona Chapter.
"It is the worst disease in the world. We don't know the cause and there is no cure and only one proven drug that prolongs life up to 90 days at the end of the disease, so there is not much that can be offered for treatment.
"It is so awful because people literally become prisoners in their own bodies. Their body completely shuts down around them. All we can do is try to make life as pleasant as possible," Hughes said.
The disease affects every person differently, she said, with some declining gradually over three to five years, and others within just a few months. ALS generally strikes between the age of 40 and 70, but Hughes' youngest patient is 26 and her oldest is 90.
Additionally, about 25 to 30 percent of Hughes' caseload is made up of veterans.
"There is a whole veterans link. We have no idea why it is happening, but veterans are twice as likely to be diagnosed with ALS. It doesn't matter when or where they served," Hughes said.
In hopes of finding answers to questions surrounding the disease through research, Deborah is one of many Tucson volunteers supporting the ALS Association Walk to Defeat ALS on Saturday at Gene C. Reid Park. She also hopes to improve the lives of those with ALS and support fellow caregivers, another goal of the ALS Association.
Proceeds from the walk will also fund services such as an equipment loan program that provides durable medical equipment for clients to reduce out-of-pocket expenses; a respite care program that provides caregiver support; transportation to ALS Association Certified Centers for Excellence in Phoenix that offer multidisciplinary care and case management for patients with ALS; and support groups not only for ALS patients but also for caregivers.
Overall, Deborah also hopes to bring more attention to ALS and the services the ALS Association can provide.
"I am sure there are many other families out there in the same boat," she said. "I read so much about breast cancer awareness and Muscular Dystrophy awareness and never see anything about ALS. We need to change that."
If You Go
What: 2011 Tucson Walk to Defeat ALS
When: Saturday; 9 a.m. registration; the walk begins at 10
Where: Gene C. Reid Park, 22nd Street and Country Club Road.
Cost: Free; participants who raise a minimum of $75 receive an official ALS Walk T-shirt
Etc.: Festivities at the family-friendly and dog-friendly 5K walk include snacks, entertainment, a 50-50 raffle and information and education about the ALS Association Arizona chapter and ALS-associated resources and services. About 13 percent of the proceeds from the walk are funneled into research; the rest will fund ALS Association programs and services in Arizona.
For more information, to register as an individual or team or to donate online, go to walkaz.alsa.org or call 1-602-297-3800, Ext. 103.
Contact freelance writer Loni Nannini at ninch2@comcast.net
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