Goynes tries to raise money for Kennedy's Disease

Photo by Anita Miller

By JASON GORDON - Daily Record Sports - San Marcos Record

Although Tom Goynes has won the Texas Water Safari canoe race seven times since his first attempt in 1967, this may be his most important 260-mile trek from San Marcos to Seadrift.

Goynes is racing for a cause and a cure in this year's race which begins Saturday morning at San Marcos City Park.

Goynes, who will be racing with his daughter Sandy, is raising money for the Kennedy's Disease Association - and the cause definitely hits close to home.

Goynes has two brothers afflicted with the disease, which is a genetic form of muscular dystrophy that affects men. It is a rare and currently incurable and non-treatable progressive neuro-muscular disease. It's medical name is spinal bulbar muscular atrophy.

And although he has never gone public with the fact, Goynes himself is afflicted with Kennedy's Disease.

"I've never really talked about it publicly, but I feel this is as good a time as any to let people know that I do have Kennedy's Disease," Goynes said. "I've never been officially diagnosed, but I have all of the symptoms."

Doctors and researchers don't know much about Kennedy's Disease, which oftentimes is misdiagnosed as Amyotrophic Lateral Sclerosis, which is commonly called Lou Gehrig's Disease.

There is a big difference, though, in the two because with ALS life expectancy is between three to five years after diagnosis, and people afflicted with Kennedy's Disease can live out their full life expectancy.

Susanne Waite and her husband Terry, co-founded the Kennedy's Disease Association (www.kennedysdisease.org) along with Patrick Griffin. Terry and Patrick are both individuals living with the disease.

Susanne Waite said that up to 70 percent of [the] individuals [in the KDA database] living with Kennedy's Disease are first diagnosed with ALS.

"We've heard of people totally changing their lifestyle, selling their homes and even becoming suicidal when they are misdiagnosed," Waite said. "Can you imagine being told you have three years to live and then later finding out you will live into your seventies or later?

"It is a prime example of just how much research needs to go into Kennedy's Disease so anyone that has it isn't misdiagnosed."

The Muscular Dystrophy Association has 40-plus different diseases they donate their funds to, and only 18-percent of the money MDA raises actually goes into research.

"Although MDA was giving some money to research Kennedy's Disease, it wasn't at the level we wanted," Suzanne Waite said. "They had no network where people with the disease could get and keep in contact with each other, and that's what we've done with our association."

The disease progresses slowly, affecting the brain's ability to communicate with the muscles.

Usually, a person diagnosed with the disease starts to notice numbness in their arms and legs, and over time it can make walking or standing up very difficult,

Tom Goynes had two uncles that were misdiagnosed with ALS in the early 1970s.

It turned out that his uncles Cy and Lawrence, had Kennedy's Disease, and observing the duo ultimately helped Goynes when he concluded he had the same disease in the mid-1980s.

"My uncle Lawrence took the diagnosis and got depressed and stopped living his life the way he had been before," Goynes said. "Cy kept living as full a life as he could, working in his garden and staying active.

"His life is really is an inspiration to me."

Both Lawrence and Cy lived into their early seventies, further making the case that Kennedy's Disease isn't a death sentence.

One thing that Goynes said he hopes further research on Kennedy's Disease will bring is a better understanding of what a person living with the disease should and shouldn't do to.

"There are some doctors that say because it's a disease that atrophies your muscles, that you shouldn't exercise," Goynes said. "I disagree with that."

Goynes, 50, points to an example of his two older brothers Mike, 53, and Jim, 51, who are both living with the disease.

The two weren't as active as Tom, who has raced in the Texas Water Safari 23 times since 1967.

"I really feel that it's my staying fit and exercising that has caused the disease to come on so slowly in me," Goynes said. "That's the kind of research we need, to find out what the truth is exactly."

Sandy Goynes, 19, is racing in her fifth Texas Water Safari.

Raising money for Kennedy's Disease is special to her because there is a 100 percent chance she is a carrier of the disease.

If she has a son, there will be a 50 percent chance that he will have Kennedy's Disease.

"I know that the biggest difference this year is that if quitting the race was ever an option before, it's not an option now," she said. "I am inspired how my dad can still race, and I know that this is a very important cause.

"It's pretty amazing that my dad can get in a boat and row for 40 or 50 hours straight."

She said that seeing her father so active will be an inspiration to the way she raises her children if she does have a son that is diagnosed with Kennedy's Disease.

"I know I will tell him to build up his muscle mass as much as he can in his early years," she said. "I think that's a direct reason my dad's as active as he is now."

The team is raising money per mile completed in the race, and Tom Goynes said the team expects to raise close to $2,000.

"We've had a lot of support, especially from the other canoeists," he said. "I think it's something that will build up if we continue to try and raise money from year to year."

Goynes said that the competitive fire that fueled his seven Texas Water Safari titles in the 1970s and 80s still burns.

"I know that we won't be in the winner's circle," he said. "But I think we're still good enough to scare some people in the top 10."