Biking for a cause: Fundraiser helps provide for ALS patients

By Kristine Thomas

More often than he can count, Rob Chadwick, 41, said people who don’t know his story have asked him why he is walking with a limp.

“Most people assume because of my age that I have some kind of sport’s related injury,” Chadwick said.

He wishes he could tell a tale of how he took a spill while playing basketball or twisted an ankle while playing Frisbee on his farm in Scotts Mills.

Instead, he takes a deep breath and calmly explains he has ALS or Amyotrophic Lateral Sclerosis. Also known as Lou Gehrig’s disease, ALS is a progressive, usually fatal, neurodegenerative disease caused by the breaking down of motor neurons. There is no known cause or cure at this time.

Chadwick was diagnosed with the disease in 2007.

“What I had was a mystery for about two years until doctors ruled out everything else until they decided it was ALS,” said Chadwick, who retired five years ago from his job with Mentor Graphics.

Most people die within two to five years of being diagnosed with ALS, he said, adding he is thankful his ALS has progressed slowly.

“I am able to walk some with the help of a cane and I have a power wheelchair,” he said. “Most of the time I am still struggling to get a handle on the pain. The pain is so difficult that I have to sleep in a recliner instead of a bed.”

Despite knowing what is down the road for him – loss of the ability to eat, speak and breathe on his own and total paralysis, Chadwick is at ease with his fate. Like many parents working at home, he had to take a moment from talking to have a hushed conversation with his children, Kyle, 9, and Korina, 11, who are eager for their dad’s attention. He has explained the disease to his children.

What amazes Chadwick is when he shares with people he has ALS, about half the people respond they know a friend or an acquaintance who also has the disease.

According to the ALS Association, about 5,600 people in the U.S. are diagnosed with ALS each year. The incidence of ALS is two per 100,000 people, and it is estimated that as many as 30,000 Americans may have the disease at any given time.

Chadwick is hoping anyone who knows someone with the disease, or who just wants to do something to raise money to find a cure for the disease, will participate in the 2013 Oregon Ride to Defeat ALS.

The bicycle ride in and around Mount Angel is from 7:30 a.m. to 5:30 p.m. Saturday, July 13, beginning at the Mount Angel Festhalle. The registration fee and required fundraising amount is $150 for participants ages 11 and up. Volunteers are always needed and there will be food served in the Festhalle.

There is a personal reason why Adrienne Damewood and her family are preparing the food for the event.

Her brother, Brian Damewood, was diagnosed with ALS almost two years ago.

The owners of The Wooden Nickel and Mac’s Place, the Damewoods are catering breakfast with coffee, tea, juices, fresh fruit and breakfast breads and pastries.  For dinner, there will be BBQ chicken hindquarters, house-made potato salad, country style baked beans and fresh baked garlic bread and a stuffed bell pepper dish for the vegetarians.

Adrienne would encourage people to participate in any way they can for the Oregon Ride to Defeat ALS because it all makes a difference.

“Just showing up means so much to all of us and the thousands of other people who are diagnosed with ALS each year,” she said.

Brian, who turns 43 this month, is the typical older brother and she was the little sister – with a lot of teasing and tattling. He taught her how to fish and tried to teach her to play pool and basketball, with Adrienne admitting somethings just aren’t teachable.

“I always looked up to him,” she said.

Before Brian was diagnosed with ALS, Adrienne said she wasn’t aware of what ALS truly was.

“Now I have become a big advocate for research and I hope someday soon we will find a cure,” Adrienne said.

When people ask what they can do to help, Adrienne tells them the best thing they can do, for anyone suffering from a disease like this, is to become a supporter and advocate for a cure.

“Even if all you can do is donate a small amount of money, that makes a huge difference,” she said.

Adrienne said her entire family pitches in and does whatever is necessary to help Brian, with their care giving roles always changing. Her parents are Kelly Miller and Glen Damewood.

“As you can imagine, everything is different now.  We try to spend as much time as we can with him. We all try to help in the best ways we can,” Adrienne said. “My mom, Kelly Miller, does most of the care giving but his sons Bradley and Branden are up there almost every day helping and hanging out. The most important thing for us is to make him as happy and comfortable as we can.”

Adrienne said her brother loves to camp, fish, go to concerts and spend nights out on the town with good friends.

“He has a lot of friends and loves spending time with them. They have been wonderful and very helpful through all of this,” she said.

Adrienne said the Oregon 2013 Ride to Defeat ALS is a great fundraiser and the money goes to help find a cure.

It also provides necessary equipment for anyone that has the disease, Adrienne said.

“If anyone is not able to attend the event but would still like to donate we have collection jars set up at both of our Wooden Nickel locations in Sublimity and Silverton and Mac’s Place in downtown Silverton.”

Chadwick said if it weren’t for the support of his friends and his family – especially his wife Jennifer, his children and his younger brother and his family and his mom who sold their homes to be closer to him, living with ALS would be a lot tougher.

What usually kills a person with ALS is the failure of the respiratory system, he said.

Chadwick knows when his respiratory system begins to fail that he will go on a ventilator 24/7.

“That can be very expensive and there are people with ALS who will not go on a ventilator because of the financial burden,” he said. “People die sooner of ALS because of the economics of the disease.”

That’s why fundraisers like the 2013 Ride to Defeat ALS is important – it helps raise money for the The ALS Association Oregon and SW Washington Chapter, which provides support to patients with ALS and their families, Chadwick said.

“I am hopeful they will find something to slow down the disease in my lifetime,” he said. “I am hopeful they will find a cure in the future.”

He said the ALS Association does an amazing job of helping patients. “This is an overwhelming disease and the patients require so much care,” he said. “The ALS Association does a lot to help patients with everything from coordinating doctor visits to having volunteers come to the house.”

Although it takes a great deal of energy to talk about his disease, Chadwick said he does so because he wants people to make a connection with someone with the disease. His family will volunteer at the event.

“Whether you are biking or not, this is a really fun event and it means a lot to people who have been affected by the disease to receive support from the community,” he said.

“ALS is a difficult disease. It’s a hard disease to live with without a lot of support from friends and family.”