Lou Gehrig's disease patient takes to D.C
Kate Santich | Sentinel Staff Writer
April 19, 2008
While Ken Patterson still has a voice -- before he is completely bedridden and fed through a tube -- he wants answers.
The former Army sergeant wants to know why those who've served in the military are twice as likely to get Lou Gehrig's disease as those who haven't served. And he wants to know what the politicians controlling research funds are going to do about it.
"They worry more about giving little blue pills [Viagra] to old men than the 30,000-plus people with this disease," said Patterson, 39, of Titusville.
Today, Patterson begins a 940-mile journey from Orlando to Washington in his battery-powered wheelchair. Traveling 50 miles and 10 hours a day -- with his wife, Glenda, trailing him in a van -- he plans to collect letters from other patients and carry them to Capitol Hill, raising awareness along the way.
"Somebody has to do it," he said. "Why not me?"
Patterson has amyotrophic lateral sclerosis, better known as ALS or Lou Gehrig's disease -- a fatal neurological disorder that progressively robs its victims of the ability to walk, speak, move and, eventually, breathe. It leaves a perfectly alert mind in a shell of a body.
Despite numerous studies showing that ALS is more common among veterans and a 5-year-old ALS registry by the Department of Veterans Affairs that now has 1,800 names, funding to unravel the mystery is still meager. This year, the Department of Defense has requested $5 million to study possible treatments.
"We're happy to get it, but $5 million is nothing in the realm of medical research," said Lucie Bruijn, national science director and vice president of the ALS Association. "We can absolutely use more. I think what he [Patterson] is doing is fantastic."
Not 'going to crawl in a hole'
Since his diagnosis with ALS in November 2006, Patterson has had plenty of time to consider potential culprits.
Was it the jet fuel he was exposed to as a paratrooper? Did it have anything to do with being a gunner on an anti-tank missile system? Was it all the vaccines he was given -- as many as a dozen at a time? Or perhaps the exposure came later, in his work as a safety engineer for the Kennedy Space Center.
"You don't have enough space to write all the possibilities," he said, his words already slurred from the disease.
A one-time firefighter and paramedic, Patterson first went to a doctor in late 2005 for what he thought was a bad case of carpal tunnel syndrome. His right hand hurt all the time, and his grip was slipping. He couldn't turn his ignition key without using two hands.
It took three doctors, a gamut of tests and 11 months to get the answer: He had a disease he didn't know anything about and a prognosis of two to five years left to live.
"I got drunk," he said. "I couldn't have what they said. I thought, 'I'm just getting to where I want to be in life. I'm still a young man.' "
Divorced and the father of a son, he had been dating Glenda House for nearly a year. He was about to begin work on his master's degree. And at Kennedy Space Center, he was on track for a big promotion.
In January 2007, Patterson quit work to spend what time he had left with his family, and that spring he drove with Glenda to Washington for an ALS candlelight vigil at the Capitol.
"I didn't see one news reporter, not one cameraman," he said. "Nobody cared about ALS. Somebody had to do something. I wasn't just going to crawl in a hole and die."
He began planning his mission. And in July, he and Glenda, 36, married.
All services susceptible
On the way to Washington, the two plan to stop at Fort Stewart in Georgia and Fort Jackson in South Carolina. They want to tell soldiers there what scientists have learned: that it doesn't matter whether you've been in the Army or Navy, Air Force or Marines. It doesn't matter whether you've ever deployed overseas or fought in combat. Patterson never made it out of Fort Benning, Ga.
Any time in the service raises the risk, though there might be no sign of ALS for years or decades afterward. And for those who fought in the Persian Gulf War of the early 1990s, the risk is higher still. Again, the reason is unknown.
Since the disease was identified in 1869 -- decades before it struck baseball great Lou Gehrig -- the prognosis of two to five years has remained unchanged. And only one drug -- Rilutek -- has been approved by the FDA for treatment. It is thought to extend life by about eight to 12 weeks and costs about $1,000 a month.
"The disease is still a rare one," said Bruijn, a molecular biologist. "It's not as if everyone in the military is suddenly going to get ALS. But the fact that it is increased leads us to the theory that there is some sort of environmental exposure involved, and we need to identify what that might be."
Earlier this year, scientists isolated a gene that causes some forms of ALS, indicating a genetic predisposition.
The most likely scenario, experts say, is that the disease comes from that genetic vulnerability coupled with exposure to an environmental toxin.
Realistically, Ken Patterson probably won't live long enough to find out. But he likes to think otherwise.
"I'm going to stick around another 90 years just to **** the world off," he said.
Kate Santich can be reached at email@example.com