Source: The Herald-Standard
Technology helps Connellsville man cope with ALS
By Dave Zuchowski , For the Herald-Standard
CONNELLSVILLE - Joe Hrezo once led an active lifestyle. He loved to hunt, play softball, run at least three times a week and play baseball darts at the Connellsville Elks.
In 1993, however, while playing a softball game at a picnic, he noticed that, instead of moving fluidly for the ball, he stabbed at it. Instead of sprinting to first base, he lumbered down the base paths.
"I thought it was because I hadn't played for a while," he said.
Later, while loosening up before running, he noticed it was taking him a bit longer than usual. He also began dragging his left foot. When he told a local doctor about the problem, he was advised it was probably nothing more than a vitamin deficiency.
In 1995, Hrezo fell while running and dislocated a knuckle. From then on, his condition progressively worsened, so much so that in July 2001, his family doctor referred him to the Cleveland Clinic for diagnosis.
In October 2001, the clinic ran a battery of tests and diagnosed Hrezo with amyotrophic lateral sclerosis (ALS), known commonly as Lou Gehrig's disease.
The 55-year-old Hrezo and his wife, Sharon, were both shocked and frightened when they first heard the report, partly because of the short life expectancy after diagnosis. In retrospect, however, Hrezo figures he had the first symptoms of the disease 12 years ago and considers himself fortunate not to be in a wheelchair or hooked up to a feeding tube or ventilator.
Bob Mackle, director of public affairs of the Muscular Dystrophy Association in Tucson, Ariz., which provides services for people with ALS and researches the disease, said that by "attacking the nerve cells that control muscle cells, ALS weakens muscles until they're nonfunctional and paralysis takes place. Though mental function is generally untouched, death usually occurs within two to five years of diagnosis."
Fortunately, Hrezo's type of ALS progresses slowly. Although he quit running in September 1995 and gave up darts in 2000, he still manages to work at his 40-hour-a-week job as a toll collector at the New Stanton interchange of the Pennsylvania Turnpike. For his efforts, he has been nominated for this year's annual Disabled State Employee Award, given each October in Harrisburg.
After his diagnosis, Hrezo began taking oral medication, a 14-pill-a-day regimen that included Baclofen to alleviate stiffness in his legs and Zanaflex to control muscle spasms. However, the Baclofen medication left him groggy and dazed.
"I took my pills at 8 in the morning, and when I began reading the paper with my morning coffee, I soon began to nod off," he said.
At the Cleveland Clinic, Hrezo has been under the care of Dr. Erik Pioro. To remedy Hrezo's grogginess, Pioro decided to try a technology effective with multiple sclerosis patients suffering from muscle spasms. The procedure involved implanting a special pump in Hrezo's abdomen that saturates his spinal cord with the medication via a catheter-like tube without affecting other body parts.
In December 2004, a pump the size of the palm of Hrezo's hand was installed over his left hip, and the results have been encouraging. Hrezo reports that his dazed condition is gone and that his legs and arms are less stiff. He's increased his hand strength five or six pounds, and his speech and swallowing have also improved.
Because the pump places no restrictions on his physical activity, he now rides a stationary bike a friend lent him, does a series of exercises with 8-pound ankle weights every other day, and performs a series of stretching exercises twice a day.
"I get the bike up to between 40 and 45 mph, but wasn't even able to ride it at all before the implant," he said.
On May 18, a crew from the Cleveland Clinic visited his home in Connellsville to film a documentary on how the pump has improved his life and physical activities. After taping at his home for more than an hour, they followed him to his job at the tollbooth to record his activity there. Hrezo said the documentary, titled "Day in the Life," is scheduled to air on the Fox Network and NBC in some selected American cities at the end of June. Locally, the video is planned to run on WTAE at a date as yet unspecified, also at the end of June.
When Sharon Hrezo first learned of her husband's diagnosis, she quit her job as a teacher's aide at a day-care center to be home with her husband.
"Right now, time to us is very precious, and we take each day as it comes," she said. "Fortunately, Joe's very self-sufficient and doesn't take much care."
The Office of Occupational/Vocational Rehabilitation helped the couple by putting in a ramp from the driveway to the house and making the bathroom handicapped accessible by installing handrails and a walk-in shower.
"At some point in time, I will be in a wheelchair, unless someone finds a cure," said Hrezo. "But for now I still work 40 hours a week, and Sharon and I go shopping together. From time to time, I even go out for wings and an O'Doul's with friends, but mostly I watch TV when I get bored."
On his wrist, Hrezo wears two plastic bands, a red one with the words "Never Give Up" in the hope that a cure will be found and a yellow one for cancer awareness. He sells the bands at $2 a piece, with the proceeds going to a hopeful new research project initiated by Dr. Robert Bowser at the University of Pittsburgh School of Medicine.
The study focuses on the administration of a new drug, Pramipexole, which Hrezo sees as a possible remission drug or even a cure for ALS. If Bowser gets the necessary startup money for the study, Hrezo hopes to join the project this summer.
"A lot of times, new drugs are held back until the FDA approves them as safe," he said. "But we in the ALS community can't wait long while a study on lab rats is under way. For most of us, the disease is terminal and fairly quick. What difference does it make if we die from liver cancer or ALS, especially if we can help someone with the disease two or three years down the road?"
In late August or early September, Hrezo, his wife, daughters Kimberly and Julianne, and some of his running buddies are planning a walk/run as an ALS fund-raiser. Organizers are asking area residents to help find sponsors, to volunteer their time, and to get on the run/walk mailing list. Those interested can phone 724-628-2127 for more information.
"When we tell people that Joe has ALS, no one knows about the disease," said Sharon. "But when we tell them he has Lou Gehrig's disease, they immediately know what it is, which is why we're trying to raise awareness of this relatively rare affliction."
To increase awareness, the U.S. Senate first declared May National ALS month back in 1992. The designation has continued every May since for the past 14 years.
As to Hrezo's prognosis, Pioro said that, although the course of his disease has been very slow and gradual, it is very difficult to predict the survival of any individual patient.
"We're doing a lot of research here at the Cleveland Clinic and fighting very hard to battle this disease," he said. "I'm hoping for the best and that Mr. Hrezo will be able to live out a full and normal life span."