I was diagnosed with Parkinson’s disease (PD) on April 27, 2023, at the age of 48 — a day I will remember for the rest of my life.

For nine months leading up to that day, I went through countless doctor appointments and tests, all of which showed that nothing was wrong. But I knew my body, and I knew something wasn’t right. The final step was seeing a neurologist, who diagnosed me within five minutes.

The words still echo in my mind: “I know what you have, and you aren’t going to like it.” Then came the sentence that changed everything: “You have Parkinson’s.”

In that moment, time seemed to stop. I cried because of the weight of what those words meant. I had been preparing myself for a diagnosis of multiple sclerosis, not Parkinson’s. Both are serious, but for some reason, Parkinson’s hits harder. When the neurologist told me to “get my affairs in order” and make sure I had a support system, it was sobering. Yet, those words also forced me to focus on what truly matters and to rethink my future.

After some time to process and grieve, I began connecting many of my past symptoms, things I had brushed off as unrelated, to Parkinson’s. Gradually, I started to accept my new reality. I thought about how this diagnosis would affect my work, my relationships and my day-to-day life.

At first, I didn’t want to tell anyone. But as I reflected on the importance of support, I changed my mind. I decided to use my voice and advocacy skills to help others while learning along the way. Sharing my story has opened doors for conversations, questions and connections with others living with Parkinson’s or supporting loved ones who are.

I made a vow to move forward, to volunteer, stay active and do whatever I could to slow the progression of the disease. Taking control started with education. I dove into researching Parkinson’s and quickly discovered that while there are many resources available, not all are reliable. I wanted to focus on young-onset Parkinson’s information, but it was easy to feel overwhelmed by the volume and variety of sources.

Fortunately, I found my way into a supportive community. I joined Rock Steady Boxing, became part of the Parkinson’s Foundation Southwest Chapter Board, and serve as a Parkinson’s Foundation Ambassador. I also volunteer at local events and connect with others impacted by Parkinson’s whenever I can.

I’ve decided to face this diagnosis head-on and to do it with humor. My goal is to help others who are newly diagnosed, especially those with young-onset Parkinson’s, find the tools and confidence to move forward in a positive direction.

I’ll leave you with this thought: Michael J. Fox was diagnosed with Parkinson’s at 29 and is now 64. So much has changed since his diagnosis in research, treatment and awareness. A lot can change in 10  years. Staying positive truly makes a difference.

Volunteers help us make life better for people with Parkinson’s. Explore ways to volunteer with the Parkinson’s Foundation today.

Bonnie and Derek Bandeen met on the first day of their training program at Morgan Stanley in New York in 1985, where they hustled, collaborated, fell in love and succeeded — always as a team. Following a wedding, four kids and two remarkable finance careers built over three decades (and two continents, as they moved their family to London in 1993), the couple was looking forward to a new chapter: retirement in 2018.

They temporarily relocated to Boston to participate in the Harvard Advanced Leadership Program and happily settled into “student life” while finding their rhythm as empty nesters. Still, Derek was puzzled by a slight, involuntary tremor in his left hand. Though he had some inconclusive tests conducted; he suspected it was a temporary nerve issue.

Derek saw a neurologist at Massachusetts General Hospital, where he was asked to do a few finger exercises and walk down a corridor. Within five minutes, the doctor diagnosed him: “You have Parkinson’s.”

The delivery of this life-changing news, at the age of 55, was a punch to the gut. Standing outside Mass General alone, clutching the single brochure he had been handed, his unadulterated shock gave way to overwhelming fear. “How am I going to tell Bonnie?” “How am I going to tell the kids?”

Bonnie, too, was stunned, but she wasn’t deterred. With her characteristic unflappability and immutable resolve to move forward, she set out to make a plan. Back in New York, where she and Derek live, Bonnie sought to establish what support they needed and accumulate resources. She wanted to find a place for them to visit, in between the doctor appointments, that would mitigate Derek’s isolation and help them gain control.

And so it began. For the Bandeens, an important port of call was the Parkinson’s Foundation, where they found helpful information on treatment options, nutrition tips and a host of useful podcast episodes. “Parkinson.org was among the first places Derek turned to for information,” Bonnie said.

Other answers, however, did not so easily surface. An avid exerciser, Derek started working with a trainer, but he was eager to partake in group fitness that challenged him and accommodated for his PD. Many of these classes were only available online or were scattered over the city.

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Meanwhile, Bonnie met some couples who were further along their Parkinson’s path and found these care partner connections to be invaluable. “We quickly realized how vital community is when it comes to managing Parkinson’s,” Bonnie said. “We’re social people, but this disease requires a different type of village, where others understand what you’re going through and can offer support every step of the way.” 

As the couple scoured the internet for what to do following a Parkinson’s diagnosis, they uncovered a sizeable gap between their growing needs and how to meet them. Where could they actually go? What they wanted was a facility that offered fitness, wellness, community and support for people with Parkinson’s and their care partners, all under one roof.

With this mission in mind, the Bandeens launched the Parkinson’s Wellness Foundation in 2024. “We certainly didn’t plan this,” said Bonnie. “But we committed to build the community center we wished we could have turned to seven years ago.”

The Parkinson’s Wellness Foundation launched The Bandeen Center in midtown Manhattan, the first dedicated space in New York to offer fitness and holistic support especially for the PD community.

“We couldn’t have undertaken this project without The Parkinson’s Foundation and other veteran organizations that directed us to the right stakeholders, tirelessly reviewed our plans and helped us shape a working model of a facility that could truly better the PD community,” Bonnie said.

For Derek, The Bandeen Center is the answer to his Parkinson’s-fighting, strength-conditioning hopes and dreams. “There are moments, amid an intense boxing session or a tough workout, when I actually forget that I have Parkinson’s,” Derek said. “Everyone who is battling this disease deserves these moments too. All of us should be empowered to live our best lives in spite of PD.”

Starting in February, The Bandeen Center offers a full schedule of exercise classes and community-based activities in its cafe to support mental wellbeing. The Center’s opening is an exciting moment for Bonnie and Derek, whose retirement plans rerooted them down a difficult path to an unexpected, exciting destination — full of promise and hope.

“Friends, acquaintances, and friends of friends are calling me to tell me about someone they love who was just diagnosed with PD,” Bonnie said. “The first thing I always tell them is to get their person to exercise, eat well, and connect with someone in this amazing community. The Parkinson’s Foundation can help with that, and the journey is so much better when you are accompanied.”

Find your Parkinson’s community and local PD-tailored exercise classes when you connect with your nearest Parkinson’s Foundation Chapter. Find your Parkinson’s Foundation Chapter here.