- The Enterprise
- The Recorder
Tony Gegor likes to talk, especially if it is about raising awareness of ALS, a condition he was diagnosed with six years ago.
He's been doing a lot of talking over the last month as an awareness campaign known as the Ice Bucket Challenge went viral on social media. Last weekend he had a birthday party that doubled as a fundraiser for a patient assistance fund created in his name to support patients with amyotrophic lateral sclerosis; and yes, cold ice water was dumped on many heads.
Gegor, 61, of Avenue said he supports the Ice Bucket Challenge. Like his birthday party Saturday, anything that brings awareness to ALS is good in his book.
Even six years after being diagnosed, Gegor is still surprised at how many people say they have never heard of ALS.
Because of the air tube Gegor constantly has attached to his nose, people often think he has lung cancer or some other breathing condition.
Sometimes while shopping in local stores, he will overhear other shoppers telling their children to “stay away” from him. Kids are curious, he said, and he would rather be given a chance to explain to both them and their parents that he has ALS.
The progressive, neurodegenerative disease affects nerve cells in the brain and the spinal cord, according to the ALS Association. Eventually, people with ALS lose the ability to control muscle movement, which often leads to total paralysis and death within two to five years of diagnosis.
Gegor described it as having “a broken extension cord,” running from his brain to his muscles. The muscles do not get the signal to “charge back up,” and they eventually begin to deteriorate.
There is no cure for ALS, and only one drug approved by the U.S. Food and Drug Administration that modestly extends survival.
The disease is nicknamed Lou Gehrig's Disease, because the baseball player died from the disease in 1941.
“It affects every patient differently,” Gegor said. Some live for only a few months after symptoms appear. Others, like Gegor, live for several years or more.
“I am a firm believer that you've got to fight,” he said, adding that it is important to have the support of friends and family, too.
“He was a mechanic, truck driver, into race cars. He was very active,” friend Chris Haynie said. It has been difficult to watch her friend lose his strength and eventually be completely reliant on a wheelchair, but, she said, he has been resilient.
Gegor worked as a tractor-trailer driver for years. In 2003, he fell and hit his head. He started having other issues with his health, including seizures, and began to seek help from doctors.
Over the next several years he got half a dozen different diagnoses from as many doctors. For a time things got back to mostly normal.
“Everything seemed like it was going fine,” he said.
Eventually, he ended up in the hospital again. A doctor walked into his room, Gegor said, looked at his chart and then began pulling out the hoses and tubes hooked to him.
“He said there's nothing wrong with your heart, there's nothing wrong with your lungs,” Gegor said of the doctor. However, the doctor could not tell him exactly what was wrong with him.
His hospital escapades eventually took him to Johns Hopkins Hospital in Baltimore to see a neurologist. After multiple tests, a doctor told Gegor and family members in the room that he likely had ALS.
“The doctor told them, 'We don't expect him to live a year, year and a half,'” Gegor said. “It wasn't good news.”
That was in 2008. Now, six years later, Gegor is still making the most of life, including helping raise funds to help others with ALS.
After his diagnosis, Gegor went back to his home in Avenue, happy on one hand to know what was wrong, but depressed over the short lease on life the doctor had given him.
Friends and family began offering their support.
“Before you know it, my bedroom looked like a hospital,” he said. “I was still pretty mobile, but I had to be careful, because I fell a lot.”
He went to church, and decided to refocus his life.
“I always thought I was pretty successful guy with whatever I did,” he said.
Gegor delved into fixing up his home.
Rose Thomas, one of Gegor's sisters, and Gegor established a patient assistance fund to quickly dole out money to patients who need help.
Building a ramp or renovating a bathroom to make it usable is not cheap, he said. And health insurance often won't cover all of a patient's needs.
“When they need money [for a renovation or medial equipment], they need it now, not in three months,” he said.
Thomas was able to start the Tony Gegor Patient Assistance Fund with an initial $25,000 raised by a charity golf tournament hosted by the National Association of Residential Property Managers. The fund has continued to grow, Thomas said, and has helped at least a half-dozen patients with ALS.
“It gives hope to people who are feeling hopeless,” Thomas said.
She praised her brother's own perseverance, calling him “inspiring” in his desire to help others with ALS.
Even with his large personal support network and his own determination, things were tough going, Gegor said.
“What I found is if you're a Lou Gehrig patient, it takes a little bit longer going through the system, because they know you're going to die,” he said.
So when a patient may need to start using a walker, they need it right away. For some, within months or even weeks they may need to transition to a wheelchair.
“It's trying to stay one step ahead of what ability they might lose next,” Haynie said. Gegor knows that need, and through his assistance fund is making a difference, she said.
“Tony likes to pay it forward,” Haynie said.
So, for the thousands who have been challenged to dump a bucket of ice water on themselves or make a donation to ALS Association, Gegor said he wants them to know it helps people like him, and the many friends he has met over the last six years who also have ALS.
As of this week, donations from the Ice Bucket Challenge have topped $88.5 million, according to the ALS Association, and include money from nearly 2 million new donors to the organization.
The donations, brought in over the last month since the challenge went viral, compare to just $2.6 million from that time a year ago.
“I think it's a blessing,” Thomas said of the awareness and funds the challenge has spurred. “I think it is wonderful.”