The first sign that something wasn’t quite right was when Ray Spooner was playing his guitar, a longtime passion.
He was playing a few chords that should have been easy, but he was having difficulty.
“I blew it off,” he said.
Not long after, in December 2014, Spooner was diagnosed with Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease.
Spooner, 56, suddenly faced the challenge of his life. ALS is a progressive neurodegenerative disease that causes muscle to atrophy, or waste away. It has no cure.
“You hear about the (ALS) ice bucket challenge,” Ray said this week, “but you really don’t have any idea what it is.”
Now Spooner knows all about ALS — too much about it. And he is doing his part to help others from ever having to know as much about ALS as he does.
The Urbana resident, a voracious bicycle rider, will depart Sunday from San Diego on a bicycle ride across the U.S. He will be joined by “a small group of dedicated but equally crazy individuals,” according to his web site, that will trek approximately 3,074 miles to finish in St. Augustine, Fla.
The plan is to ride 100-150 miles a day. And, yes, Ray plays to do every inch of riding.
“He’s capable of doing over 150 miles a day, but the recuperation time is the thing I’m most concerned about,” said his wife, Rae.
The journey’s goal is to raise money for the Muscular Dystrophy Association in its fight against neuromuscular diseases. (Visit Ray’s web site to donate; 100 percent of donations go toward research and awareness.)
Donations already total more than $30,000. Rae Spooner said the couple chose MDA to be the beneficiary because the local MDA clinic, in conjunction with Carle, has provided a great resource for them.
“People have been so supportive,” Rae said. “I can’t tell you how many Facebook messages I’ve gotten from people. People who are friends, community members, have asked if there’s anything they can do, from driving Ray to the doctor, to sitting with him … All of these things have been pretty amazing.”
Riding a bike for long distances has been a part of Ray Spooner’s life for decades. At times, he has turned his passion for biking into help for others.
In 2004, he rode some 1,900 miles — from Montana to Urbana — to raise money for Habitat for Humanity and the Champaign-Urbana Jewish Federation. He once hiked up Mount Fuji to raise money for Planned Parenthood (Spooner spent years as a nurse-midwife at Carle.)
When he was diagnosed, he presented the idea of biking across country to Rae. The original plan was to make the trek next spring, but then Ray visited his doctor. The physician suggested Ray might want to move up the timetable, given the disease’s rate of progression.
So October was chosen, and given the weather, it was best to do it across the southern half of the country. Ray has had to make some adjustments on his bike — his left hand is not gripping the bike, and he has fallen on a couple of recent rides — but he’s managing. Rae is most concerned about his descents from hills and mountains.
Ray, however, shows no fear. After all, what’s to fear?
“Normally when you go on vacation, you kind of have an idea of what you might encounter and what you need to bring,” said Ray, a London native, in a British lilt that’s slightly muffled by the disease. “But for this we have no idea what the hell we’re getting into. People ask if I’m ready, if I’m scared. How the hell can you be?”
The goal is to finish in three weeks. Rae said she’s planning on 4 to 6 weeks. Whatever it takes.
“I’d like to be back for Thanksgiving,” she said. “But if I have to, I’ll spend Thanksgiving laying on a beach somewhere.”
If you’d like to donate to MDA in support of Ray’s Little Ride, visit his web site. You can also stay updated on his journey through the site.