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Connellsville's own 'Iron Horse' battles against ALS

| Monday, May 23, 2011

Joe Hrezo of Connellsville and the late Lou Gehrig have a lot in common.

They first noticed their strength was waning while they were playing ball.

Gehrig, a New York Yankees first baseman, had such great strength that he was nicknamed "The Iron Horse." Suddenly, he found he no longer could aim for the fences when he swung the bat. He dragged his feet when he ran.

Hrezo noticed he was becoming weaker while playing a pickup game of softball in 1993 when he was 43.

"I couldn't sprint to base, no matter how hard I tried," he said. "I couldn't catch the ball and throw it in a fluid motion. I had no zip."

Eighteen years later, Hrezo is a survivor of amyotrophic lateral sclerosis or ALS, commonly known as Lou Gehrig's disease. Gehrig lived only a couple of years after he was diagnosed with the condition in 1939, dying in 1941 at the age of 38. Only 10 percent of ALS patients live more than 10 years. That makes Hrezo an "iron horse" of ALS.

'I knew it was over'

Hrezo was a familiar sight in Connellsville. People were used to seeing him stride along the streets and sidewalks, visiting local businesses. He was a longtime advertising salesman, first for the Daily Courier (1971-74), then for the Uniontown Herald-Standard (1974-1992). In the evenings and on weekends, he could be seen jogging briskly around town, preparing for his next 5K or 10K race or marathon. He was a runner extraordinaire, and he suddenly could not do it. Reading about ALS hit him like a punch in the gut. He learned that the disease attacks the muscles and the life expectancy is three to five years for at least 50 percent of those who suffer from it.

What did his future hold?

After his initial slowness at a company picnic baseball game (at the time, he was working as a manager at then-Helicon Cable Co. in Uniontown), other symptoms emerged.

"I noticed his speech was slower," said Hrezo's wife, Sharon. "At first, I thought it was because he was tired from his job."

Suddenly, he had to push himself to run.

"It got harder and harder to complete the races," he said.

Then came the day that Joe Hrezo tripped on Snyder Street in Connellsville and dislocated a knuckle because he was dragging his feet. The last time he ran was during the Labor Day holiday in 1995 at Connellsville Junior High West track.

"I knew it was over," Hrezo said.

"When Joe said he didn't want to run anymore, it broke my heart," Sharon Hrezo said. "I knew how much he loved it. It was devastating."

Jpe Hrezo underwent several tests in 1995, including an EMG, which checks the muscles and nerves using needles similar to acupuncture. The tentative diagnosis was ALS. A barrage of medications ensued, including routine B-12 shots, which helped stay the disease for a while.

"I was able to function somewhat normally for quite some time," he said.

That didn't mean that he was free of pain and worry. The specter of ALS is terrifying. ALS patients' muscles lose nourishment, so the muscles wither and weaken. The sides of the spinal cord are affected because that's where nerves that nourish the muscles are located. The spinal cord develops hardened, scarred tissue instead of healthy nerves. ALS affects approximately 50,000 Americans, with 5,000 new cases and 5,000 deaths annually.

Usually, the disease occurs between the ages of 40 and 70. It affects about two in every 100,000 people. Only 5 to 10 percent of the cases are believed to be hereditary. Its cause is unknown, but research is ongoing. Hrezo, now into his 18th year with ALS, has become an active, vocal advocate for research.

Tackling ALS full-time

Although tentatively diagnosed in 1995, Hrezo's formal diagnosis did not occur until 2001 after his symptoms steadily worsened and B-12 shots were not as effective. He regularly visits the Cleveland Clinic for examination and treatment. One of the newest drug therapies is a pump implanted in the abdomen. It pumps a medicine called baclofen directly into the spinal fluid, working more effectively than oral medication. Hrezo had his first baclofen pump implanted in 2004 and had a second surgery for one last year.

"It changed my life drastically," he said. "The oral medications made me sleepy all the time. The pump bypasses the stomach and sends the medicine directly into the spine."

He used a cane, then a walker for many years. Medications and the pump allowed him enough freedom that he was able to work for the Pennsylvania Turnpike as a toll collector from 1998 until his health forced him to retire in 2009. During that time, he worked "every exchange from Gateway at the Ohio state line to Donegal."

For many years, he continued to drive, "although it always worried me," Sharon Hrezo said.

Now retired, Joe Hrezo, 61, is tackling the ALS cause full-time. He has traveled several times to Washington, D.C., to lobby for awareness and research during ALS Awareness Month, held in May.

He and Sharon Hrezo are avid volunteers for the ALS Association of Western Pennsylvania. Based in Pittsburgh, the chapter has a $250,000 goal for fundraisers this year. The money is used to provide equipment and transportation to patients and their families and to fund research. In the past three years, events coordinated by the Hrezos have netted more than $21,000 for the cause.

"Only someone with ALS can understand the importance of having a support base because ALS patients have to be dependent on others," Joe Hrezo said.

That dependency has been his toughest hurdle. "I was used to jumping in the car and getting what I needed. Now Sharon or someone else has to get it for me. That loss of independence was the hardest thing I've ever faced," he said.

"My daughters, Julianne and Kimberly, as well as my entire family makes it possible for me to function with ALS. I couldn't make it without them," he added.

Hrezo's Heroes raise $7,800

One of the Pittsburgh ALS Chapter's biggest fundraisers is the annual Walk to Defeat ALS, held at the Pittsburgh Zoo and PPG Aquarium on the second weekend in September. Unlike traditional benefit walks, the ALS event is "just a stroll," Sharon Hrezo said.

"People collect pledges to participate, but it's really just a leisurely walk through the zoo and the aquarium," she said.

Last year, 136 teams participated, raising more than $200,000. Among the teams was Hrezo's Heroes, a group of Connellsville area family and friends who brought in $7,800 for ALS research.

The Hrezos also sponsor other fundraisers during the year. The most successful to date was last year's '80s Dinner Dance, held at Pechin's Firehouse Restaurant in Dunbar Township.

This year, Joe Hrezo is working with his longtime friend Don Witt to sponsor a Rape Aggression Defense program for women, set for Sunday at the Connellsville Elks lodge. On June 15, Connellsville native musician Scott Blasey of The Clarks will perform a benefit concert at the State Theatre Center for the Arts in Uniontown.

Hrezo said he and his wife are blessed to have such a great circle of friends and family members who volunteer to make the fundraisers a success.

"I couldn't live in a better neighborhood," he said.

His friend Joe DeClemente takes him to see the Pirates play baseball and to the Elks' "Wing Night" on Tuesdays.

"He took me golfing with him one time, and I rode along in the cart," Hrezo recalled.

Others, "like Jimmy, Bill and Butch," make sure his driveway, ramp and car are shoveled out from snowstorms. Hrezo's brother-in-law Dave took him to the Cleveland Clinic once a month for six months to participate in a drug study trial. That drug, which treats emotional stability, has since been approved for ALS patients.

"At first, I cried a lot. Sometimes I still cry," Sharon Hrezo said. "But our motto is we've got to make the best of the time we have together."

Joe Hrezo added, "When life gives you lemons, you've got two choices: You can become bitter and sour. Or you can make lemonade. That's sweeter."

Amyotrophic lateral sclerosis

"A" for without; "myo" for muscle; "trophic" for nourishments; "lateral" for side (of the spinal cord); "sclerosis" for hardening or scarring

• Muscles wither and weaken

• Patient can still hear, see, smell, and feel touch

• Intelligence not affected

• Occurs between the ages of 40 and 70

• Affects about two in every 100,000 people

• Cause is unknown, but research is ongoing

• Only 10 percent survive for 10 years or more

Even "The Iron Horse" was struck out by ALS.

Baseball fans nicknamed Lou Gehrig "The Iron Horse." His record of 2,130 games without an absence stood until the Baltimore Orioles' Cal Ripken shattered it in 1995.

Gehrig played first base for the New York Yankees with sprained ankles. He played when he was sick with colds and the flu. He reportedly broke his fingers and thumbs 17 times and still fielded and hit the baseball. No one ever expected him to be struck out by a mysterious, deadly disease when he was only 38 years old.

Born in New York City to German immigrants in 1903, Gehrig grew up poor, but his parents stressed the importance of education. He attended Columbia University in 1922-23 on a scholarship -- football, not baseball. But he did play on the college baseball team, and his performance attracted the attention of a Yankees scout who signed him for their Hartford, Conn., farm team in 1923 with a $1,500 signing bonus. Gehrig went to the majors in 1925, becoming a Yankee for good. Eventually, he replaced veteran Wally Pipp at first base and stayed there for 13 years.

Standing 6 feet tall and weighing 200 pounds, Gehrig swung for the fences. In 1931, he led the American League in hits at 184. On June 3, 1932, he was the first American Leaguer to hit four home runs in one game. He snagged a triple crown in 1934, batting .363, hitting 49 homers and driving in 165 runs.

Overshadowed early in his career by teammate Babe Ruth and later by teammate Joe DiMaggio, Gehrig still was a baseball hero to thousands of fans because of his stamina, strength and good-natured sense of fair play.

Then one day in 1938, it all changed.

Gehrig noticed he could no longer whack the ball hard enough. Hits that should have been homers popped up as outfield fly-outs. His average dropped to .300 for the first time since 1925. When running the bases, he was dragging his feet.

His career sadly ended only eight games into the 1939 season. He took himself out of the lineup -- and out of baseball forever -- on May 2, 1939. On July 4, 1939, fans honored him with a ceremony at Yankee Stadium. That day, Gehrig gave an emotional speech in which he declared, "Today I consider myself to be the luckiest man on the face of the earth."

Gehrig's condition steadily worsened. He lived long enough to see his No. 4 jersey retired (the first one ever retired in American pro sports) and to be inducted into the Baseball Hall of Fame in late 1939. But he never saw the beginning of World War II, even though a U.S. transport ship would be named in his honor during the conflict. Gehrig died on June 2, 1941, of ALS or amyotrophic lateral sclerosis, more commonly known today as Lou Gehrig's disease. He was 38.

According to several sources, ALS affects about 50,000 Americans in any given year. Approximately 5,000 new cases are diagnosed annually, and about 5,000 die from its debilitating effects each year.

ALS patients' muscles lose nourishment, so the muscles wither and weaken. The sides of the spinal cord are affected because that's where nerves that nourish the muscles are located. The spinal cord develops hardened, scarred tissue instead of healthy nerves.

The disease also damages motor neurons in the brain and spinal cord, nerve cells that control movement. The patient can still hear, see, smell and feel touch. Intelligence is not affected. Typically, the disease occurs between the ages of 40 and 70. It affects about two in every 100,000 people. Only 5 to 10 percent of the cases are believed hereditary. Its cause is unknown, but research is ongoing.

Early ALS symptoms often mimic Parkinson's disease or stroke. There is no cure, but medicines can help control symptoms such as cramping and difficulty in swallowing. One of the newest treatments is a pump implanted in the abdomen. It pumps a medicine called baclofen directly into the spinal fluid, relaxing muscles and enhancing motion. Physical therapy also helps patients retain muscle strength as long as possible.

A few people live with ALS for a long time. English physicist Stephen Hawking, who furthered our understanding of the universe, has had the malady for 40 years. He has used a wheelchair for 20 years and has a wife and three children. He uses an electronic device to speak.

Most ALS patients die much sooner. Fifty percent live at least three years; 20 to 30 percent live five or more years. Only 10 percent survive more than 10 years.

Joe Hrezo of Connellsville is among the tiny percentage of longtime survivors of Lou Gehrig's disease. He credits a positive attitude and a good support system of family and friends for his survival.

With symptoms dating as far back as 1993, Hrezo was formally diagnosed in 2001. He has become a zealous advocate of ALS research, striving to raise awareness of the disorder by sponsoring fundraisers for the Western Pennsylvania Chapter of ALS.

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