A Middle Tennessee nonprofit dedicated to extending and enriching the lives of Parkinson’s Disease patients, caregivers and their families through support groups and therapy-based classes and activities is hoping to touch more lives by expanding into additional counties around Nashville.
Founded in 2009 by former NHL player and Nashville Predators’ Coach Brent Peterson, the Peterson Foundation for Parkinson’s began with a focus on fundraising for medical research and raising awareness about Parkinson’s Disease, a non-curable progressive disorder of the brain’s nervous system.
Foundation chairman Brent Peterson participates in a golf fundraiser for Parkinson's Disease that he helped organize. (Photo11: Photo courtesy The Peterson Foundation for Parkinson's Disease)
A little over a year ago, the organization merged with a Franklin-based Parkinson’s Disease support group and significantly stepped up outreach efforts.
“We hope to find those people who aren’t connected to anything,” said Debbie Lowenthal, who’s been the executive director of the Peterson for Parkinson’s Foundation since its inception. “We want to try to reach them and let them know there is something. There is a place you can go.”
Since the merger, the foundation has reached out to existing support groups in Clarksville, Hendersonville, Murfreesboro and Manchester, among other cities, to let them know they have a partner if they need one, Lowenthal said. The foundation has dedicated support groups in Franklin, Mt. Juliet and downtown Nashville.
Getting a start, finding a path
Prior to 2009, Lowenthal was involved in administrative work for the American Parkinson’s Disease Association of Middle Tennessee.
“When we found out that Brent (Peterson) was diagnosed, and he was still coaching, we immediately tried to bring him on board as a way to raise more awareness,” she said. “Parkinson’s is one of those diseases that people don’t talk about. They don’t want people to know they have it.”
More than 5,000 people are diagnosed and living with Parkinson’s Disease in Middle Tennessee, according to the foundation. At the Franklin support group, the organization's largest, membership currently stands at about 180 patients.
“A lot of people are quietly suffering,” said Ron Ream, 70. The Nashville resident and his wife, Sharon, 65, became active in the Franklin support group when Sharon was diagnosed with the disease in July 2016. “You have to learn how to deal with it and you have to decide when to tell.”
Foundation chairman Brent Peterson undergoes deep brain stimulation for Parkinson's Disease. (Photo11: Photo courtesy The Peterson Foundation for Parkinson's Disease)
Diagnosed in 2002, it took years before Peterson was comfortable with people knowing he had the disease, he said, noting that he and his wife didn’t tell anyone, including their children, for two years after he was diagnosed. The first person they told was Michael J. Fox, whom the couple had met years before.
“He told Brent he needed to get up and do something,” Tami Peterson said. Once her husband went public with his condition in 2009, he was able to spend two more years with the Predators before he had to retire due to the progression of the disease, though he still does a radio show for the organization.
Preds stick together, help raise funds
Before his retirement, Brent Peterson’s career in hockey lasted more than three decades.
When he started the foundation and began putting together its signature event — an annual golf tournament and dinner — the team stepped up. During the foundation’s third year, the Predators combined their annual golf tournament with Peterson’s.
It has sold out every year, Lowenthal said.
The dinner has also grown, from 300 people at the Factory in Franklin during its first year to more than 1,000 on the floor of Bridgestone Arena last year.
“We didn’t know where to give the money (we were raising), so we gave it to Vanderbilt every year for research and development (of a cure),” said Brent Peterson, the foundation board’s chairman.
Then, he and Lowenthal met John Tso, of the Franklin support group, and a merger was born.
The Peterson Choir performs during a holiday luncheon. (Photo11: Photo courtesy The Peterson Foundation for Parkinson's Disease)
“They were finding people with Parkinson’s, and (those people) were coming out to the Franklin support group,” Brent Peterson said. “They had activities, and now we help fund those activities ... Now, we’re able to help the patient … I think that’s way better than just giving it to Vanderbilt.”
Tso, 67, was one of the Franklin support group's earliest members. He was diagnosed with the disease in May 2014 and joined the group in 2015, shortly after it became organized, he said.
“Prior to meeting the Petersons, we had an outreach group within the Franklin group, but we didn’t have the funding to do everything we wanted to do,” said Tso, a Green Hills resident. “With the foundation, we do. We’re a perfect fit.”
Through the Franklin group, the Peterson Foundation offers choir as well as boxing, cycling and dance classes. Next month, the group is planning to launch a painting class.
Rock Steady Boxing helps patients with Parkinson's Disease stay active and work on conditioning. (Photo11: Photo courtesy The Peterson Foundation for Parkinson's Disease)
In March 2018, the Mt. Juliet support group came on board. They started their own choir earlier this month.
“These things domino,” Tso said. “Once you have one model, you can kind of propagate it”
As a former stock broker, Tso said his involvement with the Peterson Foundation is the most meaningful work he’s ever done.
“You spend all of those years making a living and raising a family, and then you realize you don’t really have a legacy,” he said. “Other than leaving money to your family, there’s no legacy. Helping people, that starts a legacy. That makes a difference.”
Touching lives, spreading hope
For Ron and Sharon Ream of Nashville, attending the Franklin support group meetings and getting involved has been amazing, they said.
“The emotional impact of this disease can be devastating because it’s impossible to escape,” Ron Ream said. “Every four hours, she gets a reminder because she starts feeling it. Imagine that … every four hours, every day and it never ends. You get a reminder that you have a disease right now that’s not curable.”
A former director at Vanderbilt University Medical Center, Sharon Ream worked for 14 months after her diagnosis. Now, taking care of herself has become her job.
“It’s not a fun disease,” she said, adding that it changed her entire outlook on the future. “But every day, I have friends that I can see and talk to, hug and love and they understand.”
For Stan Morress, 80, of Brentwood, isolation was a way of life for years after his diagnosis. Now semi-retired from the music business, Morress spent 30 years managing some of music’s top stars. His roster included Clint Black, Donna Summer, Gloria Estefan and Tammy Wynette, among others.
“I look at Parkinson’s as a life-saving situation. I would not be here if it weren’t for Brent (Peterson),” Morress said. He met the Petersons six years ago, shortly after he learned he had the disease. “I didn’t want anyone in the business to know I had Parkinson’s. Brent spent an hour with me and convinced me that I would do the right thing … so I went to John (Tso), and now I have a whole group of friends. I love them, and I love working with Parkinson’s patients and caregivers.”
Scott Torrence, 66, and his wife Gail, 64, said the group has become like extended family. The couple, married 45 years, lives in the same Franklin neighborhood as the Petersons.
“People with Parkinson’s are like snowflakes,” he said. “We all have Parkinson’s but no two of us are alike.”
Brent and Tami Peterson present a $25,000 check to Vanderbilt University Medical Center for Parkinson's Disease research. (Photo11: Photo courtesy The Peterson Foundation for Parkinson's Disease)
Unlike Alzheimer’s Disease and other diseases that can impact the brain, there are no clear-cut stages for Parkinson’s patients. Medications can vary from person to person as can the frequency at which they are taken.
For Torrence, it’s three times per day. For Sharon Ream, diagnosed almost two years after Torrence, it’s every four hours.
“We had a speaker once who told us he went from three pills a day to 15 pills every 90 minutes,” Torrence said. “We’re all different. But, once you’re willing to be open and talk to people about it, you won’t have to go too long until you find someone who’s been impacted by it.”
The most important thing is to share, Tso said.
“If you were to divide up the Parkinson’s community, you’ll find that 20-25 percent of us are fighters, and the rest are not,” he said. “Fighters are the ones who have much longer lifespans. They are able to exercise and delay the disease.”
Reach Nicole Young at 615-306-3570 or nyoung@tennessean.com.
More about the Peterson Foundation for Parkinson’s Disease
Since it was founded, the organization has given more than $800,000 to Vanderbilt University for research.
This year, about $75,000 will be spent on outreach programs like support groups and activities for patients and caregivers and $25,000 will be given to Vanderbilt.
Specific activities funded by the foundation include:
- Rock Steady Boxing, an exercise class that provides conditioning and delays progression of disease. Classes are available in Green Hills, Franklin and are coming soon to Mt. Juliet. The foundation donated funds to open the Franklin facility. The first location was in Green Hills. It remains open.
- Peterson Choir, seeks to strengthen and improve voice. One of the foundation’s earliest endeavors, the Franklin program launched in the fall of 2017 and has performed publicly.
- NIA Dance, an exercise class focused on movement and conditioning. Classes are held at Rock Steady Boxing facilities in Franklin and Green Hills. It launched in December 2017.
- Care and Share: small groups for people with Parkinson’s Disease
- Care Partners: small groups for caregivers
- Parkinson’s PD Cruisers: Indoor cycling
Upcoming events:
- There will be a songwriters’ night at Third and Lindsley in Nashville on March 6. The event will feature eight songwriters and four singers. Capacity is 300 people. Ticket sales will benefit the foundation. The cost is $12 in advance, $15 at the door.
- On April 6, there will be a Parkinson’s event featuring 16-18 exhibitors and four speakers at Brentwood Baptist Church
To learn more about the foundation, its events and activities or how to join a local support group, visit petersonforparkinsons.org: https://petersonforparkinsons.org
https://www.tennessean.com/story/news/local/williamson/2019/02/25/parkinsons-foundation-launched-nashville-predators-coach-brent-peterson-keeps-growing/2977206002/
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