A brighter future, one step at a time
By Denise Crosby ~ email@example.com October 20, 2012 6:44PM
After two years after his first stem cell treatment Bill Orr continues to work hard at his goal of walking one day. He works out at at Delnor Wellness Center almost every day. "This is my favorite machine," Orr said as he did pull ups in the pool on Saturday, October 20, 2012. | Brian Powers~Sun-Times Media
Updated: November 22, 2012 6:13AM
For someone struggling with a bum knee only, those concrete steps leading to the banquet room of the Aurora Turner Club might be intimidating.
For a quadriplegic who spent the last quarter century in a wheelchair, even attempting to navigate these steep stairs could be considered a miracle.
Visibly shaking, his stomach still in knots since earlier in the day, William Orr stared down at the 12-step challenge facing him. He’d made a vow months earlier he was going to walk into his 35th West Aurora High School class reunion. And that meant more than a few baby steps, since the banquet room was in the basement.
He was nervous, for sure. Scared, to be perfectly honest. But more than anything, Bill Orr was determined. He knew there was a possibility he would fall. Or worse, not make it to the bottom and look like a failure.
“I’m going to walk down these stairs,” he told his supporters, “even if I have to kill myself trying.”
For the past two years, Orr has “been working my ass off” after undergoing a new medical procedure that inserted stem cells from his hip back into his arteries to recharge the spinal cells destroyed when he was struck by a car in 1986.
The procedure, performed in August 2010 by cardiologist Dr. Zannos Grekos in Bonita Springs, Fla., has been called everything from ground-breaking to malpractice. Without question it is controversial.
But for Bill Orr — who received a second treatment in July in the Dominican Republic after Grekos’ license to practice in the U.S. was suspended earlier this year — the word to describe it is life-changing.
Since undergoing the initial procedure, Orr has dedicated himself to the hard work doctors say is necessary for any degree of recovery. Orr spends three to five hours daily at Delnor Health and Wellness Center in Geneva doing weight training and water therapy. Physical therapist Barb Penzato, who specializes in neurological rehabilitation at Delnor Hospital-Cadence Health Systems, also puts him through more gruelling routines to help retrain those stem cells to perform new functions as they “wake up the connectors” between muscle and damaged nerves.
The payoff seems remarkable.
The first thing Orr noticed after returning from the treatment two years ago was that his left hand, once claw-like and stiff, began to lay flat. Doing water therapy, Orr began feeling a rubbing sensation on his feet from the bottom of the pool. Gradually, over the next 18 months, he experienced more sensations in his legs. Muscle spasms diminished. Balance was restored. And the harder he worked those muscles, the stronger they became as he went from dragging his feet with a walker to shuffling them — and finally, to taking small but definite steps.
It was after the second procedure this summer that Orr saw even more independent use of his legs — to the point he could actually make the almost foot step into his conversion van without using a lift.
It was around that time Orr made it his goal to walk down those steps and into that West High reunion in October.
“I will do everything under my power to walk in there,” he vowed. “If I fall, I fall. At least they won’t say I was a wimp because I didn’t try.”
Step 1: What do they say ...isn’t the first step always the hardest? I can do this ... I know I can do this. The wheelchair is at home for a reason. If I make it down these stairs and into that room full of people, God willing, I’m going to walk out again at the end of the evening.
Step 2: I can feel the adrenalin kick in, drowning out the fear. Push down ... slowly, slowly. I remember waking from the coma after the accident ... wondering about the future ... knowing it was forever altered. Am I ready for this?
Step 3: It’s getting tricky ... rainwater on the concrete not helping a bit. What am I doing? Am I strong enough to get all the way to the bottom?
Step 4: Not even halfway ... not sure I can do this ... where’s the adrenalin rush when I need it? Think back again to the hospital ... how it felt when you came home ... when you got out of rehab. Stay positive ... think about how far you’ve come.
Orr, a former high school hockey player and budding music technician, was riding his bicycle home from a friend’s house on Route 31 in Oswego on Aug. 3, 1986, after a Bears preseason game when a car struck him from behind.
His mom Catherine would later describe his face as looking “like it had been put through a meat grinder.” Three months at Northwestern Memorial Hospital and 13 surgeries later, doctors pieced Orr’s face back together. But his spine, though not severed, was a different story. Gradually, he regained some movement of his arms, but his legs were all but useless, leaving the young man depressed and angry, especially after the driver got off with a $50 fine.
Orr turned to alcohol and drugs to help him cope. It was easy enough to do in the hard-driving rock music industry of his profession. Thoughts of suicide skipped across his mind as he hopped from job to job, struggled with health complications and fought with the state over inconsistent medical coverage. Then, in the summer of 2009, he got a call from his old buddy Neim Malo, who once owned the popular Malo’s Rock Studio in Aurora and was now a restaurateur in Naples, Fla.
After he was given five years to live following a heart attack that killed off half the organ, Malo underwent adult stem cell therapy performed by Grekos. The treatment, he claims, saved his life and his heart is back to near normal. When he learned the Bonita Springs cardiologist was now ready to try this treatments on a spinal cord injury, Malo thought of his old Aurora buddy Bill Orr, who worked as a sound technician for small and big-name bands over the years. Through a series of music-related fundraisers thrown by friends in and out of the industry, a huge chunk of the $30,000 tab was raised for both procedures that Orr considered a once-in-a-lifetime opportunity.
And he was determined not to fritter away that chance, not only for himself and his supporters but also for the thousands of people with spinal cord injuries who are looking to stem cells — no matter how controversial — as a way out of their wheelchairs.
Step 5: My footing is unsure .. the crutch just slipped a bit. Wish I could do it without the damn thing. You’re losing some steam. Turn to the side, use the wall like you practiced in rehab ... it’s not a race. It ain’t’ supposed to be pretty ....
Step 6: I feel the pain. It’s there. It will always be there. Don’t ignore it. Embrace it. You can’t forget what you’ve been through.
Step 7: More adrenalin ... more push. If I can make it to the bottom just think what else I can do if I only try. Voices at the bottom are telling me to take my time. They are right. Take it slow ... just a few more steps to go.
Step 8: Am so close now .... can see the end ... am gonna turn back to the center and go down facing forward. How great would it be if Dr. Grekos and Neim Malo could see me now.
Stem cell science, as headlines tell us, is as mired in controversy as it is in hope.
Members of the International Society for Stem Cell Research insist the positive testimonials about the therapy from clinics like Grekos’ are often the result of a “placebo effect.” They are also concerned about the aggressive marketing they believe could be offering treatments without oversight and other standard patient protections that ensure safety and benefit.
Since performing the procedure on Orr in the summer of 2010, Grekos has run into a tsunami of legal troubles. The cardiologist is fighting to get his license reinstated as the Florida Health Department attempts to revoke it. In February 2011, he was ordered not to perform any more stem cell procedures after a 69-year-old woman died following treatment intended to heal nerve damage from cancer chemotherapy.
This past March, the state suspended Grekos’ license when a 77-year-old pulmonary disease patient being treated by Grekos and another doctor died following stem cell therapy at Grekos’ office. The state says the cardiologist was negligent and committed medical malpractice.
Orr is firmly planted in Grekos’ corner and, days after his class reunion, will fly to Naples to testify for the doctor, along with other patients who praise the work he’s done.
“I don’t understand how some countries can perform these procedures so easily, with amazing results, yet here in this country they single out certain doctors,” Orr insists. “All you have to do is look at me to see the good in what Dr. Grekos is doing.”
Step 9: Mind matter. I can feel the adrenalin return .... I hear laughter from inside the room. How will I react when I get inside? Will I be able to hold back tears?
Step 10: This damn crutch again ... it is getting in my way ... wish I didn’t need it ... but I’m so close now, so close....
Step 11: One more step ... one more step ... lower your leg carefully ... stick this landing like never before ....
Step 12: How do I possibly hold on to the feeling ... life’s not good ... it’s great!
Orr touched the stairwell floor with both feet, then turned and leaned against the wall. He closed his eyes and released an exhausted smile. He needed that moment of rest, not only to catch his breath but to celebrate a descent that had just raised the bar on future possibilities.
The stem cell therapy seems to not only have recharged Bill Orr’s dead cells, it also has rejuvenated his spirit — thanks in large part to the woman at the top of the stairs.
Orr looked up. He saw Kim Rowe’s support in her eyes, in her smile. “You are awesome,” she whispered.
When he’d first started the journey two years ago, Orr was afraid of how it would turn out. What if nothing happened? How would he react? Would he get drunk? Get high? Not give a damn about life?
At one of the first fundraisers, he rekindled a friendship with Rowe, a West High classmate, that has grown into a close relationship he describes as “my salvation.” A recovering alcoholic herself these past 20 years, Rowe not only convinced Orr to give up drinking, she’s been his staunchest supporter after he quit smoking. Now 30 pounds lighter, Orr says he’s the happiest he’s ever been.
And, while he calls Rowe his “number one cheerleader,” he stops short of calling her his girlfriend.
“We are good friends,” he said. “We will see where it takes us.”
Right now, it’s taken them into a room filled with red and blue balloons and more than 120 alums from the West Aurora High School Class of 1977 who are ready for a night of celebrating.
As Orr walked through the door, exuberant applause greeted him. More than a few watching the entrance did so with tears in their eyes. “Don’t do this,” he ordered classmate Toni Smith when he saw the emotion in her face, “or you will get me started.”
Smith was one of many who got hugs as Orr slowly maneuvered his way to table 29 — the furthest from the door. “I think it is so amazing,” said Marlis Marrello, who remembered Orr as a gregarious, social classmate from long ago. “We are so proud of him.”
“He’s been through so much,” added Donna McCrea, who now lives in Idaho but wanted to share her friend’s big moment. “He was always so quiet ... but such a sweetheart.”
One man in particular had his eyes locked on Orr’s slow walk to the table. A year before that bike accident, classmate Gerry Iglesias suffered decompression injuries, also called the bends, from ascending too quickly while scuba diving in the Grand Cayman Islands. Like his classmate, he’s spent half his life in a wheelchair.
“I’m watching him closer than anyone,” said Iglesias, a smile on his face that rivaled all in that room. “What he’s done is unbelievable ... he gives us hope.”