April 2018

Living with Parkinson’s Disease: Local residents seek to raise awareness, help find a cure

Author: Linda S. Hopkins | Photographer: M.Kat Photography

Parkinson’s hasn’t slowed down local Dianne Hillyer.

April is Parkinson’s Awareness Month. Do you immediately think of the late heavyweight boxing champion Muhammed Ali? Perhaps you picture the handsome Canadian American actor Michael J. Fox. But it might surprise you to know how many people you see daily who are suffering with Parkinson’s Disease or love someone who is.

It is estimated that PD affects over 5 million people worldwide (1 million in the United States). It is the second most common neurodegenerative disorder after Alzheimer’s, and while no area statistics are available, the word on the street is that PD is quite prevalent here in the Lowcountry.

Parkinson’s Disease Parkinson’s Disease is a chronic, degenerative neurological disorder that affects one in 100 people over age 60. However, many people are diagnosed at age 40 or younger. The exact cause of the disease is unknown, although research points to a combination of genetic and environmental factors. Classic symptoms are resting tremor, slowness of movement, and rigidity. Many people also experience balance problems. These symptoms, which often appear gradually and with increasing severity over time, are usually what bring patients to a neurologist. Non-motor symptoms can include depression, cognitive impairment, digestive issues, fatigue, insomnia, and others. To date, there is no cure for Parkinson’s, only medications to help manage symptoms.

Path to diagnosis
Unfortunately, there is no definitive test for Parkinson’s Disease, and because symptoms are similar to those of other neurological conditions, the misdiagnosis rate remains significant. Adding to the complexity is the fact that everyone gets his or her own version of PD, further obstructing the medical path to an effective treatment plan.

Local resident Dianne Hillyer said her first symptom was a slight tremor in the thumb and forefinger of her left hand. It went from there to joint pain, and she was told she had arthritis. She began experiencing anxiety, which her doctors attributed to general stress and the onset of menopause. Insomnia ensued and the tremors increased, not only in her hand, but in her left leg. Next she began losing her sense of smell, and her daughters pointed out her somewhat blank stare.

“I knew something serious was wrong, so I began doing my own research,” Hillyer said. “I knew I had PD, and nobody believed me. At that time, I was very isolated, alone, and scared to death about my future, knowing that I would never get better and it would only get worse.” She was handed her official diagnosis in 2014, although she is certain she had the disease for several years prior.

Hidden malady
While symptoms vary widely, if there is one thing PD patients often have in common, it is their desire to hide the outward manifestations for as long as possible. Fox was diagnosed in 1991 at age 29 and did not disclose the condition publicly until 1998, semi-retiring from his acting career in 2000 as his symptoms worsened. That same year, he launched The Michael J. Fox Foundation, the world’s largest funder of Parkinson’s research.

Although not in the public eye like Fox, Hillyer also hid her symptoms for years before mustering the courage to speak the truth about her illness. Facing the future with Parkinson’s is difficult, and it’s one of the reasons patients have a hard time seeking out support from others whose diseases have, perhaps, progressed further.

“Besides self-consciousness and embarrassment, they don’t want to see what the future holds,” Hillyer explained. “That’s why I wanted to come out now. I still hide my symptoms very well, but I want people to know they are not alone.”

Hillyer’s symptoms are progressing, and she is under the care of a movement disorder specialist, Dr. Jill Trumble—a neurologist with St. Joseph’s/Candler who has received additional training in Parkinson’s Disease and other movement disorders. Parkinson’s patients advise anyone who has PD or symptoms of the disease to make an appointment immediately with this type of specialist.

Hillyer is grateful that she is not affected cognitively at this point. “A lot of people associate Parkinson’s with dementia. I’m doing everything I can to prevent that, and my brain is still sharp as a tack,” she said. She takes medications to control her symptoms and proactively pursues therapies to help her live her best life. That includes a commitment to daily exercise, healthy eating, and getting the rest she needs. Other helpful strategies include prayer, deep breathing, and avoiding the news, she said.

Search for a cure
The Michael J. Fox Foundation is a non-profit 501©(3) organization, dedicated to finding a cure for Parkinson’s Disease and to ensuring the development of improved therapies for those living with the disease today. Michael J. Fox talks about a Department of Cures. No such department exists, but it is the role the Foundation is attempting to play in Parkinson’s Disease research—a team of PhD neuroscientists paired with business-trained project leaders with one urgent goal: to prioritize research that can transform patients’ lives.

Sea Pines resident and Michael J. Fox Foundation chairman, Jeff Keefer

Sea Pines resident Jeff Keefer, who was diagnosed with Parkinson’s in 2007 and retired from his position as CFO of DuPont in 2010, is currently serving as chairman of the Foundation’s board. “I wanted to get involved. It was my way of trying to fight this disease,” he said.

When Keefer met Debbie Brooks, co-founder and executive vice chairman and visited the Foundation’s headquarters in New York, he was impressed. “What I found unique was a very clear mission: Find a cure. They know how to manage research. They hold the researchers accountable for the results, and they run the operation very lean—89 cents on the dollar goes to research. Both the leadership and the people are passionate about what they do,” he said.

In addition to serving on the board, Keefer heads up a local Team Fox fundraising project, Harbour Town Lighthouse Team. After purchasing a video camera for the primary purpose of capturing precious moments with his grandchildren, he began filming/photographing local scenes and discovered a dormant talent. In 2016, his company, JLK Studios, joined forces with Nadia Wagner, Harbour Town Lighthouse general manager/lighthouse keeper, and Mark King of The Club Group, partnering with Sea Pines Resort and Knickers men’s store to market and sell prints of Keefer’s photos. Keefer offers his time and the materials, donating all of the proceeds to the Foundation. Photographs and canvases can be purchased at the Sea Pines Beach Club and the Harbour Town Lighthouse. Galleries are located at Knickers men’s store, Harbour Town Deli & Bakery, Surf Side Market at Sea Pines Beach Club, and Harbour Town Lighthouse; visits to Keefer’s studio can be scheduled by calling (610) 457-2310.

Belfair resident Kathy Cypher, whose husband Bob has PD, has also hosted a local Team Fox event for the past five years, raising close to $100,000 total, she said. “The cool thing about The Michael J. Fox Foundation is that every penny raised through the community team efforts goes to research. Their goal is to find a cure and go out of business.”

But finding a cure doesn’t come cheap. “To bring one new drug to the market takes 15-30 years and well over $1 billion,” Catherine “Katie” Kopil, PhD, director of research partnerships for The Michael J. Fox Foundation said. “Most ideas will fail. The few therapies that do make it through then have to go through clinical research, where potential new drugs enter human testing—a lengthy, multiphase process, requiring years and new rounds of funding to design trials, recruit volunteers, collect data, analyze findings and prep for approval from regulators before a drug can become part of a physician’s arsenal.” Only one in 12 treatments is proven safe and beneficial to patients.

Volunteers are needed for clinical studies, which are the last and critical stage of research before new treatments are brought to market. There is a particular need for newly-diagnosed patients and for people who don’t have Parkinson’s disease (referred to as “controls”). Find information on current clinical studies at foxinsight.org. Of course, donations are always needed and appreciated, and fundraising efforts welcomed. Learn how you can make a difference by visiting michaeljfox.org.

Blessings in disguise
Hillyer is determined to find the blessing in her infirmity. “I’m lucky. I’ve got two great daughters [Sarah Hillyer and Kelly Cody], a great son-in-law, and a nice gentleman friend. I have more time now to spend with my daughters, and that’s a joy for me. They are the love of my life, and that’s why I keep going,” she said through tears. But most days, she said, she puts on her happy face even though she may feel terrible inside. On a recent shopping trip, she encountered a group of children who commented on her trembling hand. She replied, “This is my happy hand, and I shake it when I’m happy.”

Keefer, who admits he would never wish to have the disease, said PD has also brought unexpected benefits. “I’ve met unbelievable people that I would not have met otherwise, and I’ve had the opportunity to do things I might not have done,” he said.

While Keefer is focused on his national outreach, his photography and local fundraising initiative, Hillyer is actively sharing her story, seeking opportunities to fundraise, as well as volunteering for upcoming clinical trials. Going forward, her main goal is to educate the public and help others. “It’s not an old-person’s disease. It can happen to anybody—like me,” she said. “I believe God chose me to have this disease, and if I don’t help other people … I’ve learned not to judge people, because everybody’s got something going on that you may not understand.”

  1. You did a great job! And thank you for helping to get the word out about Parkinsons disease!

    — Dianne Hillyer    Apr 1, 06:18 pm   

  2. Thanks for this important story about a disease that my two sons struggle with every day.
    I’m impressed that a local magazine featured a story during PD recognition month and I’m grateful that Dianne and Jeff shared their personal stories. I just attended the Parkinsons Policy Forum in Washington,DC to learn how to advocate for all the patients.

    — Sherry McGovern    Apr 4, 11:31 am   

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