Chris Richardson can still remember the deep relief he felt finally having a diagnosis for the mysterious illness that had plagued him for nearly three years.
“Even if they’d said I had a brain tumor and had an hour to live, I would have felt relieved,” Richardson said about the day in 2017 when his doctor called to tell him he had something called Spinocerebellar Ataxia Type 1 (SCA1).
By that point, the Camas-Washougal Fire Department training captain and Iraq War veteran felt like he might be losing his mind.
“I had test after test, and doctors would tell me I was normal, that I was fine,” Richardson said. “I felt like I was going nuts.”
The SCA1 diagnosis made sense to Richardson. An inherited disease that impacts the central nervous system and degrades the brain’s cerebellum, which controls the body’s coordination, the illness often presents with symptoms that, as Richardson describes it, “make you seem like you’re drunk when you haven’t had even one beer.”
Richardson’s wife, Janyce, noticed he was running a bit funny one day when the couple was out for a jog.
Soon after, he noticed problems with his speech.
“I was slurring my words, like I was drunk, but I hadn’t had a drink,” he explained.
For a man in his mid-30s who was at the top of his game professionally and personally, the symptoms were deeply unsettling.
“I was desperate for answers,” Richardson says. “I read everything I could, trying to figure it out. And I had so many tests. They all came back normal.”
On a website devoted to his fundraising efforts for the 2020 Bataan Memorial Death March, an event happening in the New Mexico desert this March that benefits veterans and the National Ataxia Foundation (NAF), Richardson writes: “You can only hear ‘fine’ so much. I was not fine. I slowly lost my balance and coordination.”
He didn’t realize how bad his symptoms were until a coworker at the fire department asked him if he was drunk.
“I joked, ‘Not yet, are you?’ but that was when I knew how bad it was and that other people were noticing,” Richardson said.
He visited doctors and specialists, but his diagnosis came from one doctor’s “last ditch” effort: a genetic test that wasn’t covered by Richardson’s insurance.
After paying $6,000 for the test, Richardson finally had his answer. He wasn’t losing his mind. There was a name for what he had.
“Ataxia is a rare, neurological disease that affects up to 150,000 people in the United States. It is progressive, affecting a person’s ability to walk, talk and use fine motor skills. “It can be fatal,” explains an NAF press release highlighting the upcoming Bataan Memorial event.
The diagnosis may have undone someone else, but Richardson was used to making lemonade from life’s lemons.
A Bend, Oregon native who joined the military to escape a childhood marked by poverty and was in boot camp when the 9/11 attacks happened, Richardson had come a long way to get to where he was at that point in his life — a war veteran who had survived multiple attacks in Baghdad, Iraq; a respected member of the local fire department, a paramedic who regularly saved others’ lives; a husband and father of two young boys; a man diagnosed with post-traumatic stress disorder from the war he’d fought who wasn’t ashamed to seek the help of a therapist.
He wasn’t about to let the SCA1 diagnosis tear him down.
“I was at the pinnacle of my success when I was diagnosed,” he wrote on his Bataan Memorial fundraising page. “I felt like I would lose everything that I worked for (but) I am not one to give up. … As long as I am on this side of the dirt, I plan to keep moving.”
And move he does.
Richardson, 37, uses a walker and relies on help from his service dog, Sarge, who came from the Battle Ground-based Northwest Battle Buddies program, which provides free service dogs to veterans suffering from PTSD. But he still works every day and keeps active: riding his recumbent bike with Sarge running by his side; going to yoga classes at Body Bliss in downtown Camas; playing with his 8- and 10-year-old sons, Odin and Thor.
“This rare neurological disease has changed my perspective on life and has led me to many positive changes,” Richardson said.
He changed his diet, eliminating alcohol, gluten and meat, and said yoga classes have helped him connect to his body’s own signals for how far he can push himself physically.
“Yoga has been a life-changer for me, and is very humbling,” Richardson said. “I’m more aware of my capabilities now.”
To better accommodate Richardson’s Ataxia symptoms, the family moved from their multi-story Camas home to a one-story Washougal house, and Richardson said his sons love attending Gause Elementary School in Washougal.
Richardson said the lifestyle changes have helped keep his symptoms on a sort of plateau and have “kept (him) out of a wheelchair.”
Having Sarge, a 2-year-old labradoodle, at his side helps lift his spirits and keeps him active, he added.
“For me, I’m just trying to live my best life and be there for my boys,” Richardson said.
Although he was unable to keep his beloved position as a firefighter-paramedic — a job he’d held since joining the Camas-Washougal Fire Department in 2008 — Richardson still works for the fire department. Now he is a training captain who helps teach new recruits and volunteers the ins and outs of being an effective emergency medical services (EMS) first-responder.
And when he’s not working as a training captain, spending time with his family or exercising with Sarge, Richardson, a man who dedicated his life to helping others, keeps busy by raising money for charitable causes.
Richardson runs his firefighter union’s charity, the East Clark Professional Fire Fighters Benevolent Fund, which provides winter coats to Washougal elementary students in need through its Operation Warm efforts. And, on March 15, he will walk 10 miles of a grueling 26.2-mile Bataan Memorial Death March in the New Mexico desert to benefit Ataxia research and veterans.
“The Bataan Memorial Death March is a memorial in honor of the thousands of soldiers who served in the Philippine Islands during World War II,” states the NAF’s press release about the event. “Mike De Rosa Sr., a veteran who served 23 years and retired from the Special Forces (Green Berets), started the Joint Mission Bataan to Cure Ataxia after being diagnosed with the rare disease himself. De Rosa Sr. and representatives from around the country will raise money for the NAF and complete the challenging course.”
In 2019, the Joint Mission Bataan raised nearly $36,000 for the NAF, a group established in 1957 to research treatments and a cure for Ataxia.
Richardson is dedicating his march to Sunny Prom, a member of the Western Washington Ataxia Group who died in 2019.
“My journey through Buddhism has taught me that giving is the meaning of life,” Richardson states on his fundraising website.
“Sunny was a giver,” Richardson said. “She gave to our community and never let Ataxia take that (away from her).”
In just a few weeks, Richardson has managed to attract 46 donors and raise nearly $4,300 for the Bataan March fundraiser. His goal is to raise $10,000.
To learn more about Richardson’s fundraising efforts, visit app.mobilecause.com/vf/JMB/ChrisRichards. To donate to the cause, text JMB11 to 71777 and follow the prompts.