Lincolnshire MS patient aims to walk again

Using his one workable arm to maneuver his battery-operated wheelchair to the shelf holding photos of him triumphantly sprinting across finish lines at marathons and triathlons, Bob Gregory beams at the proud memories of what he has accomplished and the determined hope of what he might do again.

"I am ready," the 55-year-old Lincolnshire man says defiantly, "to get out of this chair."

Multiple sclerosis put the affable Gregory in a wheelchair in 1995. Next Sunday, May 6, will mark his 18th annual charity walk to raise funds for the research needed to get him back on his feet.

"It typically hits people between the ages of 20 and 40, just when your families and careers are starting to take off," Gregory says of MS, the mysterious and unpredictable autoimmune disease that attacks the nervous system and can leave its victims with everything from mild numbness and fatigue to debilitating paralysis, blindness and the loss of brain function. Gregory was diagnosed at age 33. He had married his wife, Pat, six months earlier and was enjoying his career as marketing director for Baxter International, the global health care company headquartered in Deerfield. An MS flare-up sent Gregory to the hospital.

"The day he came out of the hospital was the day I found out I was pregnant with Christine," says Pat.

By the time their daughter Christine had mastered the ability to walk, her father had lost it.

"Mine was just a freak of nature," Gregory says of the disease's quick progression that had him dependent upon a wheelchair within five years of his diagnosis and just a decade after he broke the four-hour barrier in the Chicago Marathon.

Not an athlete during his high school days in Emerson, N.J., Gregory was golfing, skiing, running marathons and even finished three triathlons when he noticed little signs of the devastation on the horizon.

"I started tripping up around mile 12 or 13. There was weakness and my foot would drop," Gregory remembers.

During a long bike trip, friend and former boss Ron Anderson of Glen Ellyn noticed that the younger Gregory suddenly was having difficulty keeping up. Flying home from a ski trip with Anderson and other buddies in Lake Tahoe, Gregory noticed numbness on his left side.

"I thought I slept on it funny," Gregory remembers, thinking maybe he had pinched a nerve. "I had trouble tying my tie and fastening the little buttons on my collar."

His sports doctor sent him to a neurologist who, using the then relatively new Magnetic Resonance Imaging (MRI) technology, found evidence that Gregory's autoimmune system was out of whack and attacking the myelin that protects a body's nerves in the same way insulation protects an electrical wire.

"They did an MRI and the plaque showed up in my brain like a Christmas tree," Gregory remembers, who was sent home and told to get his rest and eat healthy. He could work, even run a bit, but the symptoms got worse.

"Every morning you'd wake up, and it was like, 'What did I lose last night?'" remembers Gregory, who soon went from shuffling at work to a cane to a scooter to a wheelchair. "There was nothing they could really do."

Once "untreatable," MS effects now are diminished by an ever-growing number of treatments developed during the past two decades, says Arney Rosenblat, vice president of public affairs for the National Multiple Sclerosis Society. Through the Multiple Sclerosis Center at Rush University Medical Center and director Dr. Dusan Stefoski, Gregory says he got the unconventional chemotherapy treatment that stopped his disease's progression.

"I've been steady as a rock. I've been stable for 12 years," says Gregory, who still takes an injectable drug weekly. "We're almost on the verge of saying it's a manageable disease. Now people like me, we're ready for repair."

While Parkinson's disease has gotten a publicity boost from lovable celebrity Michael J. Fox, the most famous person with MS might be potential First Lady Ann Romney. Gregory notes that many people think of MS as the disease comedian Richard Pryor used to say was his comeuppance for all his drug use.

He might not have celebrity cache, but Gregory is an active fundraiser for the Myelin Repair Foundation, an innovative nonpartisan, not-for-profit charity based in California that has revolutionized the funding for research projects.

"To do his walk 2,000 miles away from our headquarters is really wonderful," says Helen Solinski, who has MS and works as manager of donor relations for the Myelin Repair Foundation. "I am truly inspired by Bob."

That first walk in 1995 was modest.

"There were five of us and we raised $350 and we walked in the rain," says Gregory, who rolled in his wheelchair alongside Pat and their friends from Glen Ellyn, Ron and Judy Anderson and their son Darby. While brainstorming over glasses of scotch, the group came up with the team name of The Johnnie Walkers. Since then The Johnnie Walkers have raised more than $200,000 for the National Multiple Sclerosis Society, and for the past three years have sent money to the Myelin Repair Foundation.

"Last year, 60 of us raised more than $30,000," Gregory says, noting neighbors, friends from Stevenson High School and The Village Club of Lincolnshire all have been huge supporters of the walk.

Two of those walkers in recent years are leading MS researchers and doctors: Stephen D. Miller, a research professor at the Northwestern University Feinberg School of Medicine, and Brian Popko, director of the University of Chicago Center for Peripheral Neuropathy.

"He has a great attitude," says Miller, who, with his wife, Kimberley, has become friends with the Gregorys. "He's always grilling me on the latest things in the field."

Stopping the advance of MS is one problem over which doctors do have more control. But the "remylination" to repair the damage done by the disease is still a challenge.

"That's a very different thing to do, but we've really made a lot of strides," Miller says.

Gregory remains so confident of a cure that "he resists settling into that life" of a person with severe disabilities, says his friend Anderson, adding that his enthusiasm is contagious. "I've know Bob for so long, I almost overlook it (MS). I tell people, 'He's as healthy as you and I,' and then I think, 'Oh, wait.'"

With his mind, mouth and sense of humor at full strength, Gregory seems to forget his disabilities at times. A mention that he hasn't "gone downhill" in the past decade, draws an instant rebuke.

"Oh, yes I have," Gregory says, launching into a story about zipping down a ski run in Colorado while sitting on specially designed skis.

"I know his limitations, but I don't think of him as a limited person. You don't feel sorry for Bob," says Pat, whose job as a commercial real estate lawyer with her firm of Pachter, Gregory and Raffaldini in Deerfield generally allows her the freedom to come home if her husband needs help. "His optimism is really inspirational, and it's gotten us through some very tough times, some scary times."

For more information on the four-mile walk on May 6, which starts and ends in the Gregory's backyard, visit http://msjohnniewalkers.blogspot.com/.

"This is not naive optimism. I will be walking again," Gregory says, refusing to rule out another marathon finish someday after he accomplishes his more pressing goal. "I want to walk up to everyone's door and personally thank them for donating. That's my reward."