Body betrayed, Geneva man fights on
Paul Ruby is battling Parkinson's disease the only way he knows how: funding research
November 8, 2009
By STEVE LORD
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 Paul Ruby is manager of the Herrington Inn, but is spreading throughout the Fox Valley and 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 and 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 saying, "All I want to do, Mr. President, is to be able to play catch with my dad."
Just like family.
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 tool 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 America as Ruby. As a member of the Chicago-based rock group, Hoss Lindenmeyer has been key in getting the many bands that performed at the Concert for a Cure, including his own.