Body betrayed, Geneva man fights on

Paul Ruby is battling Parkinson's disease the only way he knows how: funding research

A line in an old song says when you're smiling, the whole world smiles with you.

No one knows that better than Paul Ruby. The whole world seems to be smiling on the organization he founded to fund research to find a cure for Parkinson's disease.

In just three years, the Paul Ruby Foundation has raised about $200,000, which has gone toward funding research projects at Northwestern Memorial Hospital's Parkinson's Disease and Movement Disorders Clinic in Chicago's North Loop.

It's been raised through an outpouring of community support centered in Geneva, where Ruby is manager of The Herrington Inn, but is spreading throughout the Fox Valley and the Chicago area. People have packed day-long concerts, sold tickets and turned out in droves for an Internet contest that netted the foundation a prestigious national grant.

And it is making Paul Ruby smile — even if it doesn't always show.

You see, smiling is increasingly difficult for Ruby, one of the lesser-known, insidious symptoms of the Parkinson's he was diagnosed with in 2006.

It's called a "masked face," and it makes Parkinson's sufferers appear expressionless.

And sad.

"I will be talking to the (Herrington) staff and they think I'm unhappy," he says. "I tell them I'm not, it just looks that way. I know, small potatoes when compared to what some go through. But it's something you take for granted."

Parkinson's is a neurological disease that does indeed slowly take away many of the things people take for granted — basic movements, the ability to sleep soundly, the ability to get around, or to speak normally.

It is chronic — which means Ruby will have it forever unless a cure is found — and progressive, which means it gets worse.

For Ruby, it has been a life-changing event, both in what the disease has done to him, and in what he has organized to try to strike back at it.

It started shortly after he was diagnosed, when then-President George W. Bush vetoed legislation to allow stem cell research, which is key in fighting neurological diseases such as Parkinson's, Alzheimer's disease and ALS, known as Lou Gehrig's disease.

Ruby's oldest son, Wes, who was 10 at the time, read the news stories about the veto and "took it upon himself to write a letter to the president, telling him about what stem cell research can do," Ruby says. "He ended the letter by saying, 'All I want to do, Mr. President, is to be able to play catch with my dad.'"

The Northwestern Memorial Hospital Parkinson's Disease and Movement Disorder Clinic is on the 20th floor of the Galter Pavilion at Northwestern Hospital.

Once a year, members of the Paul Ruby Foundation board of directors and the advisory board make a trek in from Geneva to meet with members of the Northwestern Memorial Foundation, the fund-raising arm of the hospital, and the doctors, including Alexsander Videnovic, who are at the forefront of research on Parkinson's disease.

Officials say Northwestern is just one of 44 in the world with such a comprehensive approach, one of 20 in the United States.

On this fall day, skies are gray and sporadic rain falls on board members as they enter the large lobby of the Galter Pavilion off St. Clair Street. The board members who took the Metra train in from Geneva meet up with several others who work downtown every day, including Paul Ruby's wife, Linda. There are hugs everywhere, an indication of the closeness that has developed between those who have taken up this crusade.

Most of the board members are family and friends of Paul. But through organizing a golf outing, two concerts and attending numerous meetings, this group has bonded, becoming close friends with one another.

"The neatest part of the situation for me is the people on the board," Ruby says. "They all knew me in some way when it started, but most didn't know each other at first."

Pete Lindenmeyer, for instance, who owns Weaver Partners in Geneva, an executive recruitment firm, grew up on the same block in North Aurora as Ruby. As a member of the Chicago-based rock group, Hoss, Lindenmeyer has been a key in getting the many bands that performed at the Concert for a Cure, including his own.

"We reconnected three years ago, when he was putting together the first concert," Lindenmeyer says. "Ever since, we've stayed in touch."

In 2003, Paul Ruby started to notice that his golf game was getting worse.

His scores were going down and he was weaker when he played. Also, he could no longer do something else he enjoyed: skiing.

But it wasn't until three years later that a neurologist finally diagnosed the problem.

"I'm sure he didn't mean to be upsetting, but the way he told me was, he said, 'Now, this is not a death sentence, but you have Parkinson's disease,'" Ruby says. "Can you imagine being told like that?"

So Ruby did research on Parkinson's, and discovered the best doctors in the area were in the Rush Medical system or at Northwestern Hospital.

"We connected on a personal level," Ruby says of Dr. Videnovic.

After seeing the letter his son wrote to the president (he has another younger son, Logan, who is now 10), Ruby was inspired to do something. He organized a golf outing to raise money. Even the caddies, led by his sons and their friends, donated their caddying money for two years to the foundation, some $5,000.

"Initially, it was going to be a one-time event, but then I wanted it to be sustaining, so I started the foundation," Ruby says.

The outpouring for the foundation has amazed him. In three years, people donating and attending events have raised about $150,000 for the foundation. Add to that the $25,000 Mark of Distinction award through the Markham Wineries Foundation in California — which was won through a month-long Internet poll — and the total comes to almost $200,000.

"That Markham award, we were in competition with projects in big cities across the country," Ruby says. "The rallying of a community, it's simply amazing."

Also amazing are the things done this day at Northwestern Memorial Hospital in a small board room between bites of a sandwich and technical medical explanations.

The foundation has $75,000 to put toward a project in 2009-10, and it will hear five ideas that can get started with that amount of money. The point is simple: Parkinson's is a disease medical people think can be cured, and possibly soon. Curing Parkinson's could lead to cures for other, more debilitating neurological diseases, such as Alzheimer's and Lou Gehrig's disease.

And if the disease cannot be cured, in the meantime, doctors can help patients with their quality of life.

"If we cannot offer a cure for the disease, how can we make life better for the patient," says Dr. Tanya Simuni, medical director of the movement disorder center. "That's really what we're doing."

Currently, there are more than 30 research projects going on at Northwestern involving Parkinson's and movement disorders. The first year the foundation donated $50,000 to the larger Michael J. Fox Foundation, which gives millions of dollars to Parkinson's research annually. That was fine, but the Paul Ruby Foundation decided it would like to give its money to a specific project at Northwestern. The small town foundation would deal with its hometown hospital.

The second year, doctors presented projects to the foundation boards, which ended up giving $75,000 to a Videnovic project to study Parkinson's patients with excessive daytime sleepiness, a common symptom.

According to the center, the mechanisms behind this symptom are not fully understood. But the study has produced results in its first year already that will be presented in April to a neurological convention in Toronto. Moreover, because of the first-year funding given by the Paul Ruby Foundation, the study netted further funding from the American Neurological Association that will keep the project going for another two years.

"If that doesn't connect you with the cause, I don't know what does," Ruby says.

Board members now are looking at two more of Videnovic's projects, one from Simuni, the center director, and another from Dr. Cindy Zadikoff, who works in the realm of surgical solutions.

Board members are torn. Simuni's work would recreate research already done that would produce a measured image that detects the disease in the brain. Currently there is no good, direct measure to determine if a patient has Parkinson's. Simuni wants to confirm that research, and go further.

Stanton likes the project, saying it "affects every other project."

"It affects the accuracy of diagnosis," Stanton said. "People diagnosed with Parkinson's are not sure (about their diagnosis)."

Ruby says while he understands the important of Simuni's project, he likes the idea that the foundation can, as it did last year, seed a new project with its money.

"Last year's project probably couldn't have happened without our funding," he says. "That spurred more funding. If we can initiate a project that wouldn't have happened otherwise …" Although board members cannot make up their minds at this meeting, they subsequently vote to go in the direction of funding a new project, also being done by Videnovic, that studies the affect Parkinson's disease has on normal biologic rhythms of various body functions.

A short while later, Paul relaxes, waiting for a train to Geneva. It's a long, tiring day for him, but he loves the process, and the ability the foundation has to fight back at the disease that fights with his brain every day.

"Why not think big?" he says. "This could be the project that cures Parkinson's. And then maybe Alzheimer's … who knows?"

It is enough to make him fight out a smile.