Amanda Poe spends her days listening to people talk. She hangs on their every word, making sure to catch every nuance and turn of phrase.
As the court reporter for Circuit Judge Leon Johnson in Pulaski County, her job is to make sure the voice of everyone who speaks in court is heard and preserved.
But today, Poe is in Washington, D.C., hoping that legislators, policymakers and health care officials will listen to her and husband Jeremy when the couple, married for about 17 years, speaks out about living with the challenges of Parkinson's disease and what survivors like Jeremy Poe need for treatment, care and research.
"They're expecting [Parkinson's diagnoses] to double by 2040. It's something that's affecting younger generations more and more. It's hard to get support. It's hard to get diagnosed," she said.
The parents of two, along with J.T. Steed of Bentonville, are giving up their spring break to represent Arkansas among 300 other advocates at a three-day forum on the condition, organized by the Parkinson's Foundation and the Michael J. Fox Foundation for Parkinson's Research, founded by the actor. The forum ends today.
The degenerative disorder might be best known for the tremors it inflicts and celebrity sufferers it has afflicted, including Fox, Billy Graham, Pope John Paul II, Neil Diamond, Johnny Cash, George H.W. Bush and Robin Williams.
There is no cure for Parkinson's, and it was named for the 19th century British surgeon who was the first to systematically document the condition in patients.
But even after all of those people and all of that time, the condition is still mostly a mystery, said Poe, who is the Arkansas director of the Fox Foundation.
A diagnosis can only be confirmed through an autopsy, and doctors don't know what causes it or how many people actually have it. Congress put up the money for a patient registry in 2016, but it has not yet been implemented, Poe said.
She became an advocate after Jeremy, 43, was diagnosed at age 26 after years of marriage. Reaching that conclusion took five years and several wrong diagnoses, including depression, Poe said.
"They diagnosed him with everything but that," she said. "They told him he was too young for Parkinson's."
For a while, Jeremy was the youngest person in the state with the disease, she said.
The disease typically manifests in an older population, but more and more younger people are getting diagnosed, Poe said.
Doctors estimate there are 10 million patients worldwide, with up to 1 million in the United States. There are about 60,000 new patients every year.
Parkinson's is the second-most common neurodegenerative disease after Alzheimer's and the 14th-leading cause of death in the United States. The illness typically starts with a hand tremor, but progresses to muscle stiffness, with painful muscle contractions, and problems with coordination.
Characterized by a lack of the neurotransmitter dopamine in certain portions of the brain, symptoms can also include depression and anxiety that grow over time to dementia.
Jeremy Poe was a weightlifter who embraced a healthy lifestyle. He was working as an interior installer at Dassault Falcon Jet when his symptoms began to become overwhelming, causing him to sometimes forget the route home or occasionally leaving him unable to curl his fingers around a screwdriver, she said.
"He would call me from the parking lot and tell me he couldn't remember how to get home," she said. "Then it got to where he broke his foot three times in a row. Then he started having cognitive problems where he couldn't remember my name, couldn't remember our daughter's name."
He was able to medically retire, but he's had to undergo three brain surgeries over the past 10 years -- which included a near-fatal bout with staph infection -- to retain mobility and stay out of a wheelchair, she said.
He takes up to 20 pills a day, but the family hopes that another surgery, to install a medical pump in his abdomen to dispense his medications directly into his system, will provide a more effective treatment.
"Even if they come up with a cure today, it's not retroactive," she said. "Today, how he is is the best he'll ever be."
The Washington, D.C., forum is supported by 11 of the nation's Parkinson's organizations. Attendees will hear from scientific and policy experts on the latest research developments and discuss efforts to increase access to health care services.
It's considered a prelude to April, which is Parkinson's Awareness Month. In Arkansas, advocates have organized the state's first Moving Day Parkinson's Walk for April 21 at War Memorial Stadium. More information is available at movingdaywalk.org.
NW News on 03/22/2018