April 28, 2008 -- It sneaked up on me.
My sense of smell vanished and I didn't question it. When my handwriting turned illegible, I blamed it on too much typing. But after I started losing my voice and became inexplicably tongue-tied, I phoned a neurologist.
I walked into his office fearing a brain tumor and came out denying his diagnosis: Parkinson's disease.
That was three years, thousands of pills, months of depression and one alternative therapy ago. In some ways I feel better today then when I was diagnosed in February 2005. But I have daily reminders that my brain is running out of dopamine, a neurotransmitter that helps govern motor performance and can have cognitive impact as well.
Will Parkinson's defeat me? Maybe not. New research is gradually unearthing clues about this condition. And some scientists are hopeful that new treatments -- and perhaps a cure -- could be closer than we think.
But new treatments require funds. And many of those on the front line of the fight for Parkinson's say the money just isn't keeping up with the work left to be done.
Funding Crucial for a Cure
Fortunately, the funding picture for Parkinson's isn't entirely bleak. On Saturday, in what organizers called the largest grass-roots show of support ever held for Parkinson's patients, an estimated 10,000 people gathered in New York's Central Park for the 14th annual Unity Walk.
The walk, intended to raise money for Parkinson's research, is organized by The Parkinson Alliance, a public charity near Princeton, N.J.
The alliance is hardly a household name, but it delivers big time. The first walk, with 200 attendees, netted $16,000. The 2007 walk raised $1.6 million.
"We hope we can top last year, [fundraising] teams have until June 1 to contribute," said Carol Walton, chief executive of the Parkinson Alliance.
And this year, as in every year since the walk's inception, 100 percent of all donations will go directly to research.
But donations can only go so far. And like many Parkinson's patients, I worry that total funding won't keep pace with the progression of my disease.
Already, federal funding for biomedical research through the National Institutes of Health is falling when adjusted for inflation. And according to Walton, NIH dollars for Parkinson's have actually declined in recent years -- from $240 per patient to about $205.
If there is any silver lining to this dire funding picture, it is that it provides extra motivation for Unity walkers.
"The Unity Walk is a day for the entire Parkinson's community to come together," Walton said. She adds that instead of being in competition with other groups (e.g. the Michael J. Fox Foundation, the Parkinson's Disease Foundation and the Parkinson's Action Network), the Parkinson Alliance distributes the money raised through the Unity Walk to the top Parkinson's organizations -- with the stipulation that the funding must go for research.
Small Step for Parkinson's, Giant Leap for Other Disorders
The benefits of a cure would reach far beyond Parkinson's patients, says John H. Morrison, chair of the Government and Public Affairs Committee for the Society for Neuroscience. He agrees with other experts who believe Parkinson's will be the first neurological disease to be cured.
"As soon as we solve one neurodegenerative disorder, it's going to give us huge insights into all the others, including Alzheimer's," said Morrison, who was in Washington last week lobbying for an inflation-proof increase in the NIH budget.
He adds that the social costs associated with roughly 1½ million Parkinson's patients -- plus an estimated 5 million Alzheimer's patients -- will only intensify as a longer-living population confronts disease associated with the aging brain. "It could have a crippling effect on our society," Morrison said.
But money isn't the only challenge.
"More money will be put to good use in battling Parkinson's," said Dr. Hamilton Moses III of the Alerion Institute.
But Moses believes progress would quicken if the biomedical research community also focused on increasing its productivity. "Productivity is often an unfamiliar concept to the scientific researcher," he said.
Carol Walton agrees; so does Katie Hood, CEO of the Michael J. Fox Foundation.
Since 2000 that foundation has funded more than $120 million worth of Parkinson's research projects, and Hood says it's not business as usual.
"We are very demanding funders," she said. "We don't consider our grants awards; we consider them investments."
This is evidenced by the fact that the foundation treats these awards as "portfolios" with very aggressive, multidisciplinary reviews. Hood notes that compared to the National Institutes of Health, the Fox foundation has a streamlined application process, mandates milestones in every grant and emphasizes facilitating dialogue among disparate researchers.
"We bring together scientists who might otherwise be considered competitors, enabling them to help each other in problem-solving and brainstorming."
All this is in the service of productivity, shrinking the lag time between lab discovery and clinical application. Hood says the Fox foundation is also developing a worldwide Parkinson's disease online research consortium to help meet the actor's stated goal: to cure Parkinson's within the next 10 years. Will it happen?
Hoping Against Time
Nearly every day, my inbox flashes a Google News alert about some new finding, study, theory, clinical trial or compelling anecdote that offers a fresh dollop of hope. But for many Parkinson's patients, time has already run out. Parkinson's drugs eventually lose their effectiveness, leaving many patients with constant tremors, spasms and shaking. Some are housebound and confined to wheelchairs or beds, and they often suffer cognitive impairment as well.
So far I have been fortunate. My primary medication, a drug that stimulates dopamine production, has slowed the progress of my symptoms, which can vary dramatically from patient to patient. In addition to the signature muscle movements, these symptoms include profound personality changes and a "facial mask" -- what my wife lovingly refers to as "the Lurch look."
Less talked about but also prevalent are some combination of sleep disorders, depression, anxiety, drooling, loss of voice, constipation, cognitive impairment -- plus the overall stress of moving in slow motion in a world now operating at nano speed.
My condition has also responded positively to Azilect, a drug that can help block the breakdown of dopamine. And when my wife read about studies suggesting that cigarette smokers were less likely to develop Parkinson's, she insisted that I try wearing a nicotine patch. Two neurologists were skeptical but said it couldn't hurt.
I now slap on a 21-milligram nicotine patch every morning. It seems to lubricate my muscles and most notably it helps my voice. Good thing. Still, I can't type with my right hand, and for the first year and a half my voice recognition software -- which demands a clear strong speaking voice -- was befuddled by my dictation.
Nicotine improved my enunciation and dictation is now a breeze. So I've become a voice for more and better research. Please hurry.
Jerry Tully is a producer for ABC News magazines.