Every nine minutes, someone in the United States is diagnosed with Parkinson’s disease.
It is the fastest-growing neurological disease, but there is much less known about it when compared to other diseases, said Lisa Cone, an advocate for the Parkinson’s Foundation who also serves as vice chair of the organization’s People with Parkinson’s Council.
“It’s such a different disease to live with because it affects everything,” Cone said. “Every body system is connected to Parkinson’s symptoms.”
Parkinson’s disease is a progressive and degenerative brain disorder that affects a person’s muscle movement. While the disease itself is not fatal, its complications can be serious and greatly diminish quality of life. The most obvious motor, or movement, symptoms include tremors, slowing and stiffening movements.
Parkinson’s also includes a wide range of non-movement, or non-motor, symptoms that can include fatigue, cognitive changes such as problems with attention, and mood disorders such as depression, anxiety and apathy. According to the Alzheimer’s Association, an estimated 50% to 80% of those with Parkinson’s eventually experience Parkinson’s disease dementia as their disease progresses.
Additionally, because there is no standard diagnostic test for Parkinson’s, misdiagnosis can happen.
“Some people suffer for years” before knowing they have Parkinson’s, Cone said.
The Parkinson’s Foundation reports that more than 10 million people worldwide are living with Parkinson’s disease, and nearly a million of them live in the United States. Within the foundation’s Rocky Mountain chapter, which consists of Colorado, Wyoming and Utah, 17,980 people are living with Parkinson’s.
According to the Parkinson’s Foundation, incidence of Parkinson’s increases with age, but an estimated 4% of people with Parkinson’s were diagnosed younger than age 50. Men are 1.5 times more likely than women to have Parkinson’s disease.
But Cone wants people to know that Parkinson’s disease is a “disease of everyone,” she said, not just men older than 65.
“It can happen to any demographic no matter age, gender or ethnicity,” Cone said.
Cone is a Lakewood resident who was diagnosed with Parkinson’s disease in 2008 when she was 45. A former executive in the health care sector, she was the first to notice her symptoms of Parkinson’s, which consisted of cognitive decline rather than a decline in motor skills. She has been an active advocate since 2012 when she had to go on long-term disability.
The economic impact of Parkinson’s should also be considered, Cone said.
“It is underfunded compared to other diseases, but the economic burden does matter,” she said.
Cone is referring to the many health care costs associated with Parkinson’s.
“Treatment, Social Security payments and lost income is estimated to be nearly $52 billion per year in the United States,” states the Parkinson’s Foundation. Medications alone, for one person, can cost an average of $2,500 a year, and therapies, including physical therapy, can be even more costly.
“And (Parkinson’s) patients can’t work,” Cone added.
Some Parkinson’s patients must take 20 to 30 pills a day to mitigate their Parkinson’s symptoms, said Dr. David VanSickle, a Denver-area neurosurgeon, in a previous interview.
VanSickle specializes in a surgery called deep brain stimulation, commonly referred to as DBS, which helps patients with Parkinson’s and other movement disorders. The operation can help most motor symptoms of Parkinson’s, but people with Parkinson’s must still take medication for the non-motor symptoms.
Others also find relief with a regular exercise regime that focuses on neuroprotection, which helps protect neurons in the brain from degeneration, and neuroplasticity, which helps with getting different areas of the brain to do the work.
Aside from DBS and exercise that may alleviate symptoms, there is limited direct treatment, and there currently is no cure for Parkinson’s disease.
Research is being conducted to determine whether genetic or environmental factors could cause Parkinson’s, but no definitive cause is known as of today.
“Not having that hampers finding a cure,” Cone said.
One such study is the Parkinson’s Foundation’s PD GENEration: Mapping the Future of Parkinson’s Disease. Through this study, the foundation offers genetic testing for clinically relevant Parkinson’s-related genes and genetic counseling at no cost for people with Parkinson’s disease.
“A cure would be fabulous, but for today, education and care teams are important resources,” Cone said.
And “awareness is super important,” she said.
April is Parkinson’s Awareness Month. The theme for this year is #FutureOfPD with a goal to “raise awareness about Parkinson’s disease, the Parkinson’s Foundation and encourage people to take action to impact the Future of PD,” states the foundation’s website.
The Parkinson’s Foundation is a national nonprofit that has regional chapters to serve people nationwide. Its mission is to provide a better quality of life for people with Parkinson’s disease by improving care and advancing research toward a cure.
“I love that the foundation is there for everyone’s journey,” said Alexis Rodriguez, the Parkinson’s Foundation’s west regional director. “People need resources today, while we work for the future of a world without PD.”
The Parkinson’s Foundation offers a variety of free resource-focused and educational virtual events and webinars. These include Live Fitness Fridays, the Home Social Engagement Series and Parkinson’s 101: What You and Your Family Should Know and Expert Briefings.
An upcoming fundraising event is the foundation’s Parkinson’s Revolution. This is a cycling event “that combines passion, determination and community to generate awareness and advance our mission toward a cure,” said Francesca Villa, national director of fundraising events for the Parkinson’s Foundation.
Parkinson’s Revolution takes place nationwide June 11, with Denver being one of 35 cities hosting an in-person Parkinson’s Revolution.
So “Denver is a key part,” Villa said, adding that the goal is to have 2,000 participants nationwide, with about 50 to 60 of them in the Denver area.
Locally, people can participate in-person on stationary bikes at the Sloan’s Lake High Ride Cycle, 1711 Sheridan Blvd. A, in Edgewater. Participants who prefer an outdoor ride can participate virtually, anywhere they’d like. Villa said some people have expressed interest in meeting up with a group and biking around Sloan’s Lake, which is right across the street from the studio.
Riders of all abilities are welcome, and in-studio participants have the option between two rides. The first will be Parkinson’s-friendly and the second will be high-intensity.
It is free to register, and there is no fundraising minimum or requirements, but participants are encouraged to fundraise. Funds raised directly support the Parkinson’s Foundation’s mission, its Centers of Excellence that provide comprehensive care to people living with Parkinson’s disease and its various programs such as the PD GENEration. Funds also allow the Parkinson’s Foundation to award grants to local community organizations such as the Parkinson’s Association of the Rockies in Denver, Parkinson’s Pointe in Centennial and the Parkinson’s Community Center in Aurora.
Last year, Parkinson’s Revolution took place in 29 cities and 1,100 participants raised more than $450,000 for the Parkinson’s Foundation, said Alicia Chapdelaine, coordinator for the Parkinson’s Revolution.
Cone’s team represents three families that all have a loved one with — or lost a loved one to — Parkinson’s disease.
“There are so many things you can do that would help a person with Parkinson’s,” Cone said. “It takes an army to take on Parkinson’s.”