The rewired life

By WILLIAM K. ALCORN
VINDICATOR HEALTH WRITER
YOUNGSTOWN -- Tom Lomax helped put up Christmas decorations this year, something he couldn't have hoped to do only a few months ago.
And Tom does what a lot of other retirees do: He keeps busy with projects and hobbies. They are all over his Benita Avenue home, his wife, Geri, says with a rueful smile.
His favorite pastime is refinishing wooden furniture that he and Geri pick up during one of their favorite activities, going to auctions.
And he dotes on his great-nieces, Jamiyah and Jailyah Jenkins of Campbell. Among his favorite pieces of furniture are a play table and chairs he refinished for the girls.
Still, the 55-year-old former millwright's retirement is not exactly idyllic. In fact, it was forced on him by illness, and it was only through what he considers a "major miracle" that he got his life back to some degree.
It began with a twitch in the little finger of his right hand.
Then the shaking involved all of his right hand, then his right arm, and soon his entire body was subject to unpredictable and sometimes violent tremors.
He had difficulty walking and speaking, and he experienced slowness of movement and "freezing" episodes when he could not move.
It was 1994, and Tom was diagnosed with Parkinson's disease.
Under care
For years after that, the most mundane tasks were often beyond his ability. His tremors kept him and Geri awake. He would fall down.
Geri, 53, a secretary at National Refractories and Minerals in Columbiana, became his main caretaker.
She brushed his teeth and combed his hair and fixed food he could pick at during the day while she was at work. She worried that something would happen while she was gone.
Their sons, Thomas Jr. and Victor, and even Lomax's father, 86-year-old Thomas Sr., would check in on him during the day.
"It's funny. His dad would sit and keep Tom company, but all Tom worried about was making things right for his dad," Geri said.
Tom was referred by his family physician to Dr. Ali Rezai, a neurosurgeon at the Cleveland Clinic, who placed him on the waiting list for the so-called deep brain surgery that was to give Tom and Geri, married 28 years, their lives back.
Impact on wife
"When you have a handicapped person, you become handicapped, too," Geri said.
"What got me through it was my faith in God and thinking that any time we had was going to be enough," she said.
Geri said Tom also helped her get through the tough times.
"He was very easy to care for. He always tried not to be a bother and was very patient, noncomplaining and agreeable. Have you ever helped someone and you ended up feeling like they helped you? That's how it was with Tom," she said.
But, she said it was difficult watching someone who was so strong just seen to "fade away in front of my face" and not be able to do anything about it.
"The frustration was not about having the disease. The frustration came because I was unable to work," Tom said.
The former Rayen School football player had worked at Youngstown Sheet & amp; Tube until it closed and then at WCI in Warren until he was forced to retire.
"One thing you can do is think. In fact, that's the only thing you can do. You have plenty of hours," he said.
The operation
After seven months on the waiting list, Tom underwent brain surgery May 6, 2002.
Before the operation, the Lomaxes were told about the considerable risks associated with the surgery, including the possibilities of blindness, brain death, paralysis and death.
"When they showed us the film of the surgery that would go into your brain, and I said a big 'no way.' Being awake was the frightening part for me," Tom said.
Tom said he had to be awake during the surgery to answer doctors' questions and respond to their commands to do such things as move his eyes or stick out his tongue. This ensured that they were attaching the wires to the right areas of the brain to correct the Parkinson's and not damaging other areas.
But in the end, he decided he didn't want to live like he was and went forward despite the risks.
"I wonder, is it really living for the people afflicted with Parkinson's? If this is a hope, who wouldn't take it? You take a chance just living," Geri said.
The technique
The procedure, called a bilateral surgical implant, commonly known as deep brain stimulation, was done at the Cleveland Clinic.
Wires were implanted in areas of the brain that trigger the tremors and were connected to battery-powered devices, like a heart pacemaker, implanted in his chest that deliver continuous electrical stimulation that counters the signals that cause the disabling symptoms of Parkinson's disease.
The effects of the procedure are adjustable and reversible, in the event a patient wants to pursue a new treatment not yet developed.
But in the meantime, the surgery has given Tom back quality of life.
It was little short of miraculous, Geri said.
About a month after the surgery, Tom went back to Cleveland Clinic to get his implant programmed and fine-tuned by Kathy Wilson, a nurse practitioner and deep-brain stimulation programmer.
Tom calls her his "hummingbird" because she hums while she works.
"When you hear her hum, you know you're going to get better," he said.
One day after his implant was programmed, he came home and helped his brother put a roof on the garage.
"When he climbed up on that roof, I was amazed and surprised. Just watching him now is like seeing a kid who has been given everything he ever wanted all at once," Geri said.
Church, group support
The Lomaxes faced plenty of challenges besides Tom's illness. Geri's company filed for bankruptcy, and health insurance was uncertain. Their son Victor was in college and they didn't know where the tuition money was going to come from.
But, Geri said, they had good support from family and friends in the community and at Rising Star Baptist Church.
"We had a complete stranger come up to us on the street and pray for us on the spot," she said.
The Lomaxes are also active members of the Youngstown Parkinson Support Group that meets the second Thursday of the month at Western Reserve United Methodist Church in Canfield.
"It is great," Geri said. "The support group members gave us information and hope and a sense of not being alone".
Tom hopes for a cure for Parkinson's disease. But, failing that, he hopes he can stay as he is, free from tremors and able to fend for himself in many ways.
"He can tie his shoes again. That's big," Geri said.
A thank-you
At 4 in the morning, shortly after his programming, Tom wrote a note, something he hadn't been able to do for two years, to Wilson.
In part, he said:
"Although I don't smile much, my heart bursts with glee over the hope and happiness you bring to me and others. I know you're the last leg in a string of miracles."
Although there are no guarantees that the surgery Tom had will produce such positive results in everybody, he urged people with Parkinson's to consider it as an option.
There is a window in the progression of the disease when you have to act. Then it is too late, he said.
Tom said he doesn't know what will happen down the road.
"As I gradually got worse, I was able to accept it. But, if it were to come back now, I couldn't accept it as well. It would be devastating," he admitted.
But, he said, the doctors and nurses are all remarkable in their own special ways.
"On my journey, with the good people I have with me,' he said, looking at Geri, "I'll go with confidence."
alcorn@vindy.com