Young father’s Rx for multiple sclerosis: aggressive care, hockey

UCHealth “Moments to Shine” honoree stays on blades despite disease
Feb. 14, 2020

 

Jacob Bailey with daughter Bobbi and one of seven horses he tends to at the family’s stables east of Parker. Because of a trial, he is taking aggressive treatment for multiple sclerosis.
Jacob Bailey with daughter Bobbi and one of seven horses he tends to at the family’s stables east of Parker. Photos by Cyrus McCrimmon for UCHealth.

Bobbi Bailey awoke from her nap grouchy. It happens: when you’re going to be 2 in April, you share your displeasures and discomforts in ways that your dad Jacob, who’s going to be 34 in April and knows discomfort better than most, doesn’t. Fortunately, Katie – Bobbi’s mom, Jacob’s wife – has an idea.

“Alexa, play the Elmo Slide,” she commands the device in the kitchen of their home in the rolling hills east of Parker. With clap-clap-clap-claps of her arms, slides to the front, back, side and other side, and various jumps and turns, the toddler-mood switch flips. Mom and dad dance along, even if dad woke up exhausted and can’t feel his right foot. It’s not good, but it’s a lot better than being debilitated and at times wheelchair-bound. That’s how he was before he landed at the Rocky Mountain MS Center clinic at UCHealth University of Colorado Hospital on the Anschutz Medical Campus. Bobbi wouldn’t exist had it not been for the Rocky Mountain MS Center. Nor would she exist had it not been for hockey. We’ll get to that.

Bobbi Bailey outside the house as parents Jacob and Katie look on.
Bobbi Bailey outside the house as parents Jacob and Katie look on.

Jacob Bailey has multiple sclerosis. He has good days and less-good days. On this day, he wears a gray John Deere sweatshirt and jeans. His brown hair is pulled back into a short ponytail, his beard thick but trimmed. It’s a rough one, Katie tells me as Jacob walks to the kitchen for a cup of coffee. His pace and stiff gait fits someone who’s going to be 74 in April more than it does a powerfully built man in his prime. He returns slowly to the family room and sits down on the couch not far from a tiny plush chair that’s also an elephant. He sips his coffee and tells his story.

Knocked loose MS symptoms

Jacob grew up on a horse ranch in Riverton, Wyoming. The youngest of seven boys, he finished his associate’s degree at Central Wyoming College in 2004, came down to metro Denver, went back home to Wyoming, and then in 2008 headed for western Colorado to work in the oil fields. He was working on a rig as a motor hand in June 2009 when he forgot to duck. His helmet clattered against a tray holding cables as thick as his fist and down he went. The plastic had saved his scalp, but when he got up, everything on his right side, from toes to cheek, eye to ear, was numb.

He told a buddy, who suggested he might have pinched a nerve. The next day at work, Jacob had a hard time making it up the rig’s stairs, and it was worse the day after that – or more accurately, the night after, seeing as he was working the 6 p.m. to 6 a.m. shift. By then his friends on the rig saw that something was seriously amiss and urged Jacob to see a doctor. An MRI scan at the hospital in Rifle noted telltale lesions in Jacob’s brain and spinal cord. Additional tests confirmed that he had MS.

He was 23 and otherwise strong as a bull. The headshot hadn’t caused the autoimmune disease that attacks the myelin sheaths insulating his nerves, but it had somehow knocked its symptoms loose.

Jacob kept working in the oilfields for more than a year, but his was no desk job. By September 2010, he was on medical leave which would lead to long-term disability. He went home to Riverton, in part to be with his father as he lost a battle with prostate cancer. Jacob’s MS, while still technically relapsing-remitting, progressed in unpredictable ways – it might be blindness in the right eye, or the inability to move his right arm, or his right leg ignoring him to the point that he needed a wheelchair. These problems tended to clear up, but on the whole Jacob felt the disease was slowly getting worse. He moved back to the Front Range in 2013, a decisive factor being the Rocky Mountain MS Center, which cares for nearly half of the region’s MS patients. There he came under the care of University of Colorado School of Medicine and UCHealth neurologist Dr. Enrique Alvarez.

Aggressive treatment for multiple sclerosis

Jacob had been off treatment since 2012 and had relapsed to the point that he was back in a wheelchair. Alvarez and his colleagues’ philosophy is to go after MS as aggressively as possible, as early as possible: once lesions form, the damage is done. That philosophy has worked well, Alvarez says.

“If you keep getting lesions, they accumulate and bring about progressive disability,” Alvarez said. “If we treat aggressively from the beginning and stop the relapses, we think we can stop – or at least slow down – the chance of that happening.”

Aggressive treatment for multiple sclerosis has put Jacob back on his feet, like here where he is standing in his field by his house, fence in the background
Aggressive treatment for multiple sclerosis has put Jacob back on his feet…

In addition to keeping Jacob out of a wheelchair, the aggressive treatments also helped Jacob get back to a favorite sport. He had been a hockey player since he was a kid, but hadn’t been on the ice since his symptoms worsened in 2010. In recent years, he’s been able to play again, and that’s great news to Alvarez who says exercise is great medicine for everybody, and it’s really good for MS patients.

“Exercising and being healthy helps the nerves connect better,” Alvarez said. “If we can control inflammation with drugs, patients who take care of themselves are much less likely to get into the progressive stage.”

Exercise key in MS care

Aggressive treatment for multiple sclerosis also put him back on the ice as seen here.
Aggressive treatment for multiple sclerosis also has put Jacob back on the ice.

Jacob joined one team, then another, until he was playing on four of them. One, a coed team at South Suburban Ice Arena, brought in a sub one day – a defenseman and printing-industry expert named Katie. She took an interest in Jacob. “He had such energy on the bench and on the ice that I was completely captivated,” she recalled. “I couldn’t get enough. The crush was real.”

She didn’t know about the MS, and when she learned about it, it didn’t change a thing.

“I had no idea that he had MS or that he was facing such challenges – physical, mental, emotional – on a daily basis. And I think he truly embodies someone who believes that attitude can really change your existence,” Katie said.

A Colorado Avalanche game courtesy of UCHealth’s Moments to Shine program is a fitting honor for a hockey family in the truest sense of the term
A Colorado Avalanche game courtesy of UCHealth’s Moments to Shine program is a fitting honor for a hockey family in the truest sense of the term.

A year later they were married. They asked Alvarez if it was safe to have kids. Of course, he said. Three years later they were dancing the Elmo Slide.

Jacob has been busy outside of family and hockey. He is already a certified addiction counselor and a certified clinical trauma professional. He focuses on addiction counseling for what he described as “highly violent clients.” He’s a few months from finishing a master’s degree to become a licensed professional counselor. Part of his counseling practice involves equine therapy, for which he doesn’t need to go far: The Baileys have seven horses on the property for which Jacob is the primary caregiver – not quite as demanding as working on an oil rig, but physical work nonetheless. Other charismatic mammals on the property include two big, friendly dogs and three yaks named Stella, Luna and Zeus.

A team approach to multiple sclerosis

Katie and Jacob are still playing hockey, though he’ll stay off the ice on bad days – in particular, the numb foot can be a liability on skates, one that has launched him into the boards after catching an edge a sensate limb would have never abided. His energy and skills have declined, he knows, but he can still contribute. A team player who’s drawn to the elegance behind the obvious, he prefers making assists to scoring goals.

“I’m going to keep playing until I can’t play,” Jacob said. And when that day comes, if his right arm cooperates, he’ll try sled hockey.

For a few years now Jacob has been involved with the Dawg Nation Hockey Foundation and has played in its annual Survivor Game. Friends there nominated him for UCHealth’s Moments to Shine program, through which UCHealth works with community partners to recognize inspiring people and those supporting them. On March 15, he, Katie and Bobbi will be special guests when the Colorado Avalanche play the Las Vegas Golden Knights.

“I’m super-excited,” Jacob says.

Bobbi won’t remember the game, and she’ll shortly outgrow the Elmo Slide. But assuming today’s and tomorrow’s MS drugs keep doing their jobs and Jacob stays his active self, he’ll be dancing with her at her wedding soon enough.

About the author

Todd Neff has written hundreds of stories for University of Colorado Hospital and UCHealth. He covered science and the environment for the Daily Camera in Boulder, Colorado, and has taught narrative nonfiction at the University of Colorado, where he was a Ted Scripps Fellowship recipient in Environmental Journalism. He is author of “A Beard Cut Short,” a biography of a remarkable professor; “The Laser That’s Changing the World,” a history of lidar; and “From Jars to the Stars,” a history of Ball Aerospace.