Jerry Killough, of Hartford, a Parkinson’s disease patient, laughed with Ann Hanley, of Versailles, during an appointment at the University of Kentucky Chandler Hospital in Lexington on Dec. 14. Hanley was diagnosed with Parkinson’s 11 years ago. Alex Slitz aslitz@herald-leader.com
Ann Hanley wants to raise $5 million in 2018 for the University of Kentucky’s Parkinson’s disease program and its promising Deep Brain Stimulation Plus program, a surgical procedure.
That’s right: $5 million.
The irony is that Hanley, who has had Parkinson’s for more than 11 years, has never had the surgery. Until recently, her lack of success with her medications for Parkinson’s would have disqualified her.
But Hanley has already raised hundreds of thousands of dollars for the program, which teams Deep Brain Stimulation surgery with a nerve tissue graft taken from the patient’s ankle.
Parkinson’s is a degenerative disease that damages and eventually destroys neurons in the brain, causing muscle rigidity and tremors, and difficulty moving. About one million Americans have the disease, according to the Parkinson’s Association.
Hanley’s husband, David, is general manager of WinStar farm in Versailles. They have three grown children; one daughter, inspired by her mother’s work, is studying music therapy at UK.
Winstar owner Kenny Troutt and his wife, Lisa, recently donated $100,000 to the Ann Hanley Parkinson’s Research Fund, which funds UK’s work.
Hanley raised $300,000 through a benefit with the Thoroughbred industry, “Night for a Cure,” which Fasig-Tipton, Coolmore farm and WinStar Farm hosted in 2016. Hanley, who recently became an American citizen, raised $200,000 from Irish farming interests simply by putting out the word that the money was needed.
She has also become a sort of companion for patients who come to UK diagnosed with the disease. She goes to appointments with them, gets to know their families, offers information and help — and will even go into surgery with the patient. If they want prayer, she will pray with them. If they need reassurance, she will give them a kiss on the forehead. When the outcome is positive and the patient walks as before, in smooth movements with no tremors, she shares the delight.
Hanley knows how isolating Parkinson’s is: Sociable people fear contact with others and withdraw, she said. The unpredictability of muscle movement can be daunting. Brushing teeth “is a nightmare,” Hanley said. “Every individual task becomes a big mountain to climb.”
Her volunteer job evolved as Hanley gained experience. At her first surgery observation, she was wearing a protective gown and mask and standing in the corner. Later, as she felt more comfortable and was in surgery with patients who were awake during the procedure, she approached the patients themselves, distracting them during some anxious moments.
“I come home, it’s such a tremendous sense of satisfaction, that feel-good vibe knowing I’ve been able to help someone today,” Hanley said.
Despite her crusade for funds to expand the availability of Deep Brain Stimulation Plus, Hanley, 60, has not had the surgery — yet. She is scheduled to undergo the procedure in April.
Before Hanley was diagnosed with Parkinson’s 11 years ago, she had noticed trouble swinging her right arm. It seemed heavier than the other arm.
A runner, she started wearing a sling so that the rigid arm bothered her less while running.
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