Fighting back: Rob Chadwick works to help others with ALS

By Dixon Bledsoe

Rob Chadwick knows exactly how he will die and what he will die from.

Last September, he was diagnosed with Amyotrophic Lateral Sclerosis. Also known as Lou Gehrig’s disease, A.L.S. is a progressive, usually fatal, neurodegenerative disease caused by the breaking down of motor neurons.

For a man who knows what is ahead – total paralysis, loss of the ability to eat, speak and breathe on his own – Chadwick is not only a remarkable man, but remarkably at peace. And thanks to inspiration of many people, he’s charted a course to help others with A.L.S.

Chadwick’s first inspiration is Lou Gehrig – one of the most talented baseball players in history. Gehrig’s baseball career was cut short due to the disease. A humble man, Gehrig told thousands of New York Yankee fans not to feel sorry for him in his famous “I’m the luckiest man on Earth” speech. Rob Chadwick also considers himself to be a lucky man in many ways. He has a loving family, lots of friends and an early retirement at age 35 from Mentor Graphics. He and his wife, Jennifer, live on 6 acres – a country home where his kids can grow up with a pond, ducks, chickens and serenity.

It’s Chadwick’s goal to live long enough to see his children – Korina, 6, and Kyle, 4, enter high school – or hopefully beyond. He is thankful he is still ambulatory, as inevitably, ALS patients find themselves in wheelchairs, then bedridden.

“I really appreciate the little things,” he said. “Holding my wife and kids, eating by myself and standing up.”

Using skills he honed as a marketing manager, Chadwick is focused on increasing ALS awareness, fundraising for the ALS Association of Oregon and recruiting volunteers.

Chadwick and his family receive support from the group in navigating complex Social Security and Medicare issues, and they spend hours promoting the group’s needs – in an “unofficial capacity.”

One ALS Association social worker currently serves patients from Vancouver, Wash., to Eugene. Two social workers cover the rest of Oregon, where there are about 400 people with ALS. More social workers are critically needed for family counseling, coordinating benefits, helping with equipment loans, leading support groups, and working with the multi-disciplinary clinic in Portland, where Chadwick goes.

“We go there every few months and I see all of my specialists, and there are a lot of them, in one visit,” Chadwick said.

He is helping ALS patients and professionals in a variety of ways – raising funds for in-home care and hiring a care coordinator. With a budget of less than $1 million, the association cannot provice funding for in-home care, and that is disappointing for those in the final stages of the illness.

The association would like to train family members to provide in-home care, attract more professional caregivers and negotiate discounts with care agencies. Prescription medicine is cost prohibitive. One treatment, Rilutek, proven to slow ALS by perhaps three months, costs $1,000 a month. Chadwick is still deciding if he will take it. A wheelchair with a recliner runs about $25,000.

Chadwick doesn’t have a lot of regrets, but one that sticks in his mind is just how close he came to meeting Loris Buccola, a much-loved, highly respected Silverton man, church deacon and family counselor who died of ALS. They “missed” each other by just two weeks – Buccola died shortly before Chadwick heard that someone in Silverton shared his disease and had a positive impact on educating people about ALS.

“Loris gave some very good advice to people …,” Chadwick said. “He said, ‘You have to adapt before you need it,’” adding meaning to symptoms such as muscle atrophy or losing the ability of your tongue so that speech is no longer effective.

“Unfortunately,” Chadwick said, “insurers don’t feel speech is a medical necessity, and speech technology is expensive. ”

Chadwick has testified to the Oregon State Legislature to dedicate more funding to ALS.

Though he said he is “blessed” with a slower progression of the disease and was able to “retire,” giving him more time at home with his family, he is still beginning to feel the effects of atrophy, slower speech and depends on a cane to walk. And talks with his two young children are not always easy.

“I talk to them slowly. They know I want to get better and won’t live as long as other dads. But they are young and take it in stride. Kyle asks me, ‘Dad, will I get it?’ According to statistics, 10 percent of the cases are hereditary and Chadwick’s family has no history of the disease. The average ALS patient lives two to five years after diagnosis, 10 percent will live more than 10 years.

As for his wife, Jennifer, the successful owner of an internet-based vintage clothing company, TheRustyZipper.Com, Chadwick says he is glad they have had more hours together than most couples get to enjoy.

“She is tired, very strong and our relationship has gotten even closer. We really value the extra time together. This issue is important to me. ALS patients need in-home care, especially going into the final stages. I want my wife to be my wife, not my in-home provider,” he said.

Chadwick spends most of his time with his family and helping promote awareness and soliciting funds to help the ALS Association. His family has raised more than $32,000 since May. “I just want to get this all started, especially for those who need it now,” he said.

“While I know I am facing a terrible disease, I’ve drawn inspiration from so many people like Patrick O’Brien and Loris Buccola. Though I never got to meet him, I came across writings of Loris’. In reading his Coping with ALS, I laughed through tears when I read his words ‘ALS is deadly but not serious.’”

For more about events to raise awareness of and funds for ALS visit: http://www.alsfund.org/rob or [email protected]