Two months after taking the ALS ice bucket challenge, 56-year-old Ray Spooner began exhibiting symptoms of the disease himself
In August 2014, Ray Spooner accepted the ice bucket challenge in his backyard in Urbana, Illinois.
“At that point, ALS was just a bunch of letters to us, we really didn t know anything about it,” Ray’s wife, Rae Spooner, tells PEOPLE. “Literally two months later, he started having enough symptoms that he went to the doctor and then in January, he was diagnosed with it.”
When Ray’s doctor delivered the diagnosis of Amyotrophic Lateral Sclerosis (ALS) – a neurodegenerative disease that affects nerve cells in the brain and spinal cord, causing weakness and eventually paralysis of all voluntary muscles – he told the 56-year old that it was time to start checking items off of his bucket list.
By any estimate, Ray Spooner has lived an incredibly full life. He’s been married to the love of his life for 32 years, has three children and traveled the globe. He’s also brought over 2,000 babies (including his grandson) into the world through his nearly two-decade career as a midwife.
So when it came time to start a list of things he’d like to accomplish before his death, Ray had three things in mind: Spend more time with his family, have a bar mitzvah and go on one last bike ride – across the United States.
On October 18, Ray dipped the back wheel of his bike in the Pacific Ocean at Ocean Beach in San Diego , California and set off for his epic trip. He’ll spend the next month riding 100 miles a day across the United States to raise awareness and funds for the Muscular Dystrophy Association‘s ALS research and support services. He hopes to end his excursion with his front wheel in the Atlantic Ocean.
As an avid cyclist, Ray says the plan for what he calls his “little ride” occurred to him “about 30 seconds after the diagnosis.”
“I’ve completed 500-mile rides, 1,000-mile rides for charities, but this is a little bit more of an extreme,” he says. “An extreme diagnosis called for an extreme response. It had to be coast to coast – it’s the only thing that could possibly match the magnitude of the diagnosis.”
The First Symptoms
London-born Ray credits his “annoyingly quiet” voice with helping him discover his calling in life – and also falling in love with his wife. “He was really quiet and I was really loud, so maybe that attracted us?” she says.
While he was still a nursing student, Ray was participating in a labor and delivery rotation when a woman in labor begged him not to leave her side when his shift was over. His voice, she told him, was helping her relax.
“That day, I felt some cogs move in my brain and I started to think if just being me is helping somebody through this very difficult experience, maybe I should think about it a little bit in depth,” he says. “It’s the only job I’ve ever had where the volume of my voice was not a liability, to be honest.”
He chose to specialize as a labor and delivery nurse and eventually returned to school to become a midwife. To date, Ray has (gently) talked women through the birthing process of 2,095 babies.
In the summer of 2014, Ray began to notice that his voice, the arbiter of so much in his life, was starting to change.
“If I have to think about it, there were subtle changes in my voice last summer, but only at certain times of the day,” he says. “Midwives do 24-hour calls and so in the wee hours, 2, 3, 4 in the morning, certain words sounded weird to me and I started to worry, ‘I don t want people to think I’ve been drinking or something.’ ”
Next, he began having difficulty playing guitar – a lifelong hobby that had become especially valuable as it soothed his newborn grandson, Jack.
As his symptoms grew worse, Ray became convinced he was suffering from nerve compression from years of cycling, so he made an appointment with a neurologist.
“The neurologist suspected the first time I saw him that this might be ALS, but he wasn t prepared to tell me that because you can’t diagnose it in one visit,” he says. “When I pressed him, he said that was one of the things he thought it might be.”
“I’m a healthcare professional,” he continues. “I know what ALS is, but still, the first thing I did was look it up online to see, ‘Okay, is there a special kind of Ray Spooner ALS that might be different from that other ALS that you hear so much about?’ ” he jokes. “But alas, no.”
The ALS Ray found from his search was the same incurable disease which affects an estimated 30,000 Americans.
“In general, the lifespan after diagnosis is about two to five years, but there’s a wide variability,” Amanda Haidet-Phillips, a Scientific Program Officer at MDA, tells PEOPLE. “ALS takes away a person’s ability to walk, stand, hug, move, talk, and eventually, this leads the muscles used for breathing and swallowing to deteriorate.”
“It’s an incredibly lonely feeling,” Ray says of the moments after his diagnosis. “My wife knew I’d been to see the neurologist and she called to ask how the visit had gone and I couldn t even bring myself to say the words. She came home and I still couldn t tell her – I just couldn t get the words out.”
As news of his diagnosis spread, Ray quickly discovered he was far from alone.
“Once you do have the diagnosis, you’re hooked up with a lot of other people and it seems like, ‘Wow, there are a lot of people who have this diagnosis.’ It’s kind of like smoking pot,” he jokes. “If you have it, you meet a lot of people around you who also have it.”
He says his local MDA clinic also had a huge impact, providing all of the resources he needed – physical therapists, speech therapists and neurologists – in one place.
“There’s a whole support system out there that we didn t even know existed until we needed it,” Ray says. “In part, that’s what the ride is about – giving back to the community while we still can.”
Ray set a goal to raise $50,000 for the MDA to support clinics like the one that helped him and to further ALS research.
Now retired, he spent 10 months preparing for this “little ride” that will take him approximately 3,074 miles through the southern United States.
Ray had originally planned the trip for next spring, but his neurologist kindly urged him to make it sooner – the rapid and unpredictable progression of the disease means there is no guarantee he’ll be able to ride in the spring, let alone cover 100 miles a day.
“At one point, he told me that he was thinking of doing this trip next March or April and I told him, ‘If this is an important dream to you, I wouldn t put it off,’ ” Robert Cranston M.D., Ray’s neurologist at Carle Health System and Medical Director of the MDA Clinic in Urbana, Ill., recalls.
Living His Dream
For now, the effects of the disease have eclipsed Ray’s trademark voice (his soft speech and London accent) and he’s lost the use of his left arm.
But he remains undaunted. A team of engineering students, a prosthetics maker and employees of the local bike shop outfitted Ray with special braces and bike modifications that allow him to shift and brake with his right arm while keeping his left arm stable on the handlebar.
“Part of the issue is my whole left side doesn t work, so I just rest on the bike and if I hit a bump it bounces off,” he explains. “If I hit a big bump there’s nothing I can do about it.”
“That’s my biggest fear really, that’s what will stop me: injury,” he continues. “I can ride, I can turn the pedals to the middle of next month, but staying on the bike is an issue.”
He will be joined on the ride by a group of neighbors and friends. His wife Rae will follow them in a minivan full of camping supplies and the food necessary to replenish the some 5,000 calories he’ll burn each day.
“One of the big things is just the general level of fatigue and he’ll be battling,” Dr. Cranston says. “He’s an extremely focused, disciplined and athletic person so that will help him some but ALS itself really wears you down.”
Rae says of course she’s afraid that her husband will fall or get injured on the ride, but that it’s a fear she has lived with for decades.
“We’ve done modifications and we’ve got a car full of things that will hopefully help him along the way,” Rae says. “There are dangers to this ride whether you have ALS or not.”
“For Ray, it’s important to do every inch of the ride,” she continues. “When he dips his front wheel in the Atlantic Ocean, I can finally collapse. And that is the most exciting thing – this is his dream.”
The pair hopes to make it home to Urbana in time to have Thanksgiving with their family. After that, nothing is guaranteed. For Ray, just knowing that he did something to help those who will face the same diagnosis he did will be enough.
“There will be people following in my footsteps and I want to make sure these resources are there for them,” he says. “Or even maybe a cure some place down the road.”
To date, Ray has raised over $38,000. “I’ve always found the more pain and suffering you’re prepared to put yourself through, the more inclined people are to donate,” he explains. “So this is the ultimate expression of that belief.”