It was suggested that I might have Parkinson’s disease (PD) in August 2018 after spending a full year wondering what was wrong with me.

Before that moment, I had seen one primary care physician, three podiatrists, two neurologists and a neurosurgeon… not necessarily in that order. When the second neurologist finally said, “It could be Parkinson’s,” I cried.

But they weren’t tears of fear, they were tears of relief.

For the first time, I had confirmation that I wasn’t imagining things. The cramping in my feet (which had started five years earlier), the aching back, the balance issues, the slow gait — none of it was in my head.

That hadn’t always been the response. The first neurologist I saw laughed when I mentioned I was worried about ALS (Amyotrophic lateral sclerosis), and told me I was “fine,” diagnosing me with carpal tunnel. I smiled, nodded and left, but I wasn’t comforted. I knew something wasn’t right. So, I kept searching.

When Parkinson’s was suggested, the second neurologist explained that the only way to know for sure was to try Carbidopa/Levodopa and if it worked, that would be our answer. It sounded crazy. What was even crazier was waiting three months to get the prescription.

Looking back, I wish I hadn’t gone to that appointment alone. An advocate might have asked the questions I didn’t know to ask.

I kept searching for answers. Because I’m claustrophobic, I couldn’t do a traditional MRI, so I tracked down a “stand-up” MRI. I sat on a bench, helmet on my head, watching an episode of Law & Order: SVU while the scan was done. The results? Inconclusive.

Still, I told almost everyone I met that I had Parkinson’s. I needed to say it out loud to make it real.

Through a connection, I started physical therapy. Several times a week, I worked on the treadmill, balance exercises, and walking on uneven ground. My therapist, Jason, was kind and patient. One day, while struggling with a simple exercise, I broke down in tears. He quietly led me to a back room so I could cry in private. I never forgot that moment of compassion.

Eventually, I had to pause therapy for work travel — and then for foot surgery. A podiatrist diagnosed me with hammer toe and assured me surgery would fix the cramping and rolling in my foot. It didn’t. The surgery, where all but my big toe on my left foot were broken and repaired was one of the most painful experiences of my life. And I’ve had three children.

A week before that surgery, I finally received my prescription. Relief didn’t come all at once, but it came. Slowly, steadily, I began to feel better.

Every day is a balancing act — managing hydration, low blood pressure, anxiety, vivid dreams. I’m constantly learning, adjusting, and searching for ways to make life more manageable.

The Parkinson’s Foundation has been a lifeline for me. Offerings like the Mindfulness Monday Series provides coping skills and helped me discover a real sense of community.

Three years ago, I had an idea for a podcast: Sick As Your Secrets. I recorded one episode — 20 takes later, I realized how hard it is to speak into the void alone. About a month ago, I decided to try again.

This podcast is part personal journey, part shared space — where I tell my story and invite others to tell theirs. My goal is simple: to help, to guide, or even just to let someone know they’re not alone. So… here we go.

Explore the Parkinson’s Foundation podcast, Substantial Matters, as we interview PD experts on the issues that matter most to the PD community — from ongoing research to nutrition and mental health.

Steve Fischlin’s journey with Parkinson’s disease (PD) started with a tremor in his foot, followed by his right arm not swinging while he walked. His next symptom was a stoic expression that left his wife, Lisa, asking if he wasn’t having fun — she noticed he wasn’t smiling. Two appointments with different neurologists and a series of tests confirmed Steve had PD and left him and his family with more questions than answers.

One thing Steve did know was that exercise is proven to help ease Parkinson’s symptoms, so he got moving.

“That first year he was walking every day,” Lisa said. “Rain or shine, he went out walking. His friends at work made sure he walked during his lunch hour. We walked together, our neighbor walked with him, it was a consistent routine.”

All this walking made Steve and Lisa wonder if there was a race or walk that supported the Parkinson’s community, which led them to Moving Day, A Walk for Parkinson’s.

“We immediately got on the committee and started making connections,” Lisa said. “We were both working at the time and had a fairly large Moving Day team, and we were one of the top fundraising teams for the last four or five years for Sacramento. It was a great way for all of us to come together and support Steve and his diagnosis.”

Steve retired in 2020 to focus on his health, and Lisa joined him when she retired in 2023. They wanted to dive deeper into the Parkinson’s community and became members of the Parkinson’s Foundation California Chapter Board. They continued fundraising for Moving Day, but they wanted to do more.

They created the non-profit, FISCH 4 Parkinson’s, a Steven J. Fischlin Charity, dedicated to raising awareness and supporting people with Parkinson’s. They launched a signature fundraising event through the non-profit, the annual FISCH 4 Parkinson’s Golf Tournament. The first tournament, held in August 2024, raised more than $26,000, which they donated to the Parkinson’s Foundation. The event returned in August 2025, raising $35,000 to support the Foundation.

“In the second year we were able to expand the tournament, get sponsorships and really reach out to the wider Parkinson’s community beyond our family and friends,” Lisa said. “It took some time to explain what we were trying to accomplish, and for Steve to feel comfortable telling his story and making connections.”

This tournament has helped Steve and Lisa support the Parkinson’s Foundation and has helped them create their own support network of people near them in the Parkinson’s community.

“Last year we had several golfers at the tournament who had Parkinson’s,” Steve said. “Now we meet up with them and their wives three or four times a year. We get dinner and catch up and talk about how we’re doing and things about Parkinson’s we can all relate to. We’re always trying to find more people to join our group.”

Steve and Lisa are passionate about supporting the Parkinson’s Foundation because of the resources and information they have received.

“When you find out you or a loved one has Parkinson’s, you have to just start digging in and learning about it,” Lisa said. “We use the Parkinson’s Foundation website, attend webinars and Steve participated in PD GENEration because his kids were wondering if this was something they could be passed down.”

“The Foundation doesn’t just support people with Parkinson’s, it supports the whole family and care partners, and that’s so important.” - Lisa

Steve and Lisa have also found a great deal of support through the University of California (UC) Davis Health Center for Movement Disorders & Neurorestoration, a Parkinson’s Foundation Center of Excellence. In 2024, the center opened a multidisciplinary clinic that brings together care providers from several specialties, including neurology, speech therapy, physical therapy, nutrition and more.

“To be able to have one stop and ask all these experts questions and find support is incredible,” Lisa said. “We’ve made really strong connections through UC Davis, and we’re able to talk to them throughout the year. This clinic is possible because of the Parkinson’s Foundation, and it makes us feel like we are never alone.”

The next FISCH 4 Parkinson’s golf tournament is scheduled for August 10, 2026 at Catta Verdera Country Club in Lincoln, CA. Steve and Lisa’s goal is to raise $40,000 this year, and are excited that 100% of the money will go to the Parkinson’s Foundation, with 50% going to the multidisciplinary clinic they have found so much support through.

“Right now, the multidisciplinary clinic is only open on Tuesdays, and it runs on donation, so we want to make a difference and support it,” Lisa said. “We’re proud to support the Parkinson’s Foundation and everything it does for people with Parkinson’s, while also supporting this resource right in our own community. We want to be loud about this disease, share our story and raise money to find better treatments and a cure.”

“I’ve met other people who have Parkinson’s, and I will always talk to anyone about it,” Steve said. “It’s a small world and we want to meet with people, do whatever we can to help. We want to talk about it, and we want to help find a cure.”

Create your own Parkinson’s fundraiser! Visit Parkinson.org/DIY to get started.

In April 2023, shortly after turning 56, I was diagnosed with Parkinson’s disease (PD). At the time, I was immersed in a demanding career and didn’t have time for Parkinson’s. Wasn’t there a pill or a shot to make it go away? Well, no. I didn’t immediately accept that I was on a journey — I had a lot to learn.

Looking back, I’d been on that journey for years without realizing it. About five years before my diagnosis, my handwriting grew smaller and messier. I couldn’t hold a pen quite right. I googled it: “classic symptom of Parkinson’s.” No way, I thought. I dismissed it.

Not long after, I began to feel “off” — a kind of baseline anxiety that didn’t feel like regular stress. That eventually passed with treatment. Then, while walking one day, I noticed my left arm just hanging there. Wasn’t it supposed to swing? I checked again: “classic symptom of Parkinson’s.” Still, I pushed it aside. I was too young, I told myself.

Then came a twitchy thumb. A foot tremor. I finally asked my primary care doctor, “Could this be Parkinson’s?” The response: “Possible, but not likely.”

When the tremor worsened, I was referred to a movement disorders specialist (a neurologist with specialized training in Parkinson’s and movement disorders). After an exam and a DaTscan, I had my answer. It was Parkinson’s.

What next? I turned to the Parkinson’s Foundation to bridge the gap between diagnosis and this unexpected detour in life.

Its library of resources helped me better understand this complex, often misunderstood disease. The Helpline was invaluable. I joined a local support group and connected with others online, learning from their experiences and offering my own.

Two years into this journey, what advice would I give? First, don’t go at it alone. Learn everything you can and connect with others. Next, exercise — early and often. And finally, don’t ignore the little signs. That left arm might be trying to tell you something.

Learn the 10 early signs of Parkinson’s and What To Do After You Notice Parkinson’s Symptoms.

My name is Kim Lundgreen. I just turned 68. I was diagnosed with Parkinson’s disease (PD) in 2017 at the University of Utah’s Movement Disorder Clinic, a Parkinson’s Foundation Center of Excellence, in Salt Lake City. I remember thinking, “What a strange name for a place.”

My wife, Mindy, was 50 at the time. She cried when we heard the diagnosis. I was stunned. Shocked. 

Prior to my diagnosis, running was more than exercise. It was my therapy, my prayer time, personal solitude time, my way of solving the world’s problems. I was an ultramarathon runner with nearly 50 marathons and ultramarathons under my belt. I ran the St. George Marathon 25 years in a row. I once beat ultramarathon legend Dean Karnazes at the finish line there during his famous 50/50/50 tour. That moment qualified me to run Boston two years later.

When I received the diagnosis, my first reaction was dramatic but honest: “If I can’t run anymore, I’ll go to Yosemite and base jump off El Capitan without a parachute.” That’s how much running meant to me.

Parkinson’s had forced me to stop running altogether. Symptoms like rigidity (stifffness), cramping and neuropathy made training nearly impossible.

Then, last June (after Cassie Webster, my Rock Steady Boxing coach kept encouraging me for years to try) I completed the Logan Peak Trail Run with a right sprained ankle, an ultra-distance race of 28 miles with over 7,000 feet of elevation gain with virtually no training. It was my first race in five years.

I fought my way back.

A news article in the Herald Journal highlighted the run. KSL News out of Salt Lake City, after getting wind of my seemingly impossible feat, covered my successful summit of the Middle Teton via the Southwest Couloir, which I achieved just a couple weeks prior. We climbed at night with headlamps, ice axes and micro-spikes. My “soul brother” David Toone saved my life more than once on that descent as my symptoms kicked in. Exhaustion, vertigo and total fatigue set in hard.

Throughout everything, I needed information about Parkinson’s and I found on Parkinson.org — I love the website and it has been very helpful for me.

Two years after my diagnosis, in the fall of 2018, Mindy received devastating news of her own: serious ovarian cancer. We had no warning, and the shock was overwhelming. Suddenly, we were both facing life-threatening diseases, and the reality of our situation hit hard. We both wept when Mindy’s doctor gave us the grim news while we were shopping together.

In that moment, I felt a heavy burden of responsibility. I had to be strong for Mindy, and I also had to manage my own Parkinson’s. We were both in for the fight of our lives.

Mindy was only 52, and I had just turned 62. Our dreams for our golden years felt shattered. I remember lying awake that night, overwhelmed by a sense of doom. I prayed to God, “Why now? Isn’t Parkinson’s enough for us?”

I lost Mindy, my beautiful wife of 23 years, in 2024 to ovarian cancer after a brutal five-year fight. She was only 57. We were both strong, active and healthy. We mountain biked, ran trails, paddle-boarded, lifted weights, practiced yoga and stayed committed to our physical and spiritual health. 

Experiencing loss with Parkinson’s is horrible, however movement and exercise — especially weight-lifting, trail running combined with my Rock Steady Boxing now — are so vital for me in providing hope and light each new day!

A few months ago I spoke to the Salt Lake City support group alongside the doctors from University of Utah neurology, a Parkinson’s Foundation Center of Excellence, and that was very powerful for me and for the audience. It was a win-win.

Parkinson’s disease is relentless. The only real weapon against Parkinson’s is movement. Exercise, especially strength training and cardio, has been shown to slow the progression of the disease.

I’ve made intense exercise a daily part of my routine, seven days a week. It’s the “silver bullet” that keeps me fighting, and I’m convinced it’s the key to maintaining a good quality of life while living with PD.  Also, it is so helpful to me in coping with Mindy’s death.

Now, I carry her with me through every climb, every run, and every battle with Parkinson’s.

Exercise is essential for people living with Parkinson’s. Find your nearest Parkinson’s Foundation Chapter to explore exercise and wellness PD exercise classes near you.

Parkinson’s disease (PD) entered my life long before my own diagnosis. Not too many years ago, I walked the caregiving journey alongside my mother as she lived with Parkinson’s and eventually passed away from its complications. Watching someone you love face the progression of this disease is heartbreaking, and it gave me a deep respect for both the strength of people living with Parkinson’s and the quiet resilience of caregivers.

Because of that experience, when I was diagnosed with Parkinson’s myself, it felt surreal. Suddenly I was no longer just the caregiver. I was the patient.

Like many people newly diagnosed, I had to face the uncertainty that comes with Parkinson’s. Some days I function very well, but there is always the question in the background: what will the future look like? Learning to live with that uncertainty has been one of the biggest challenges.

Another realization was that Parkinson’s is about far more than tremors or movement. Many symptoms are invisible — fatigue, anxiety, brain fog, sleep disruption, constipation and stress sensitivity. These symptoms can affect daily life in ways that others may not see or fully understand.

What has helped me most is focusing on the things I can control. Staying active, managing stress, prioritizing healthy habits, and leaning on supportive relationships have all played an important role in how I live with Parkinson’s today.

I’m incredibly grateful for a loving and supportive husband and family who walk alongside me on this journey.

One unexpected gift of this diagnosis has been the opportunity to connect with others in the Parkinson’s community. I began sharing my experiences online to bring awareness to both the visible and invisible aspects of Parkinson’s. What I discovered is that many people living with Parkinson’s — and their caregivers — simply want to feel seen, heard and understood.

Those conversations have become deeply meaningful to me. If sharing my story helps even one person feel less alone, better informed, or more hopeful, then something good is coming from this difficult diagnosis.

Participating in research has also become important to me. I enrolled in PD GENEration, the Parkinson’s Foundation genetic study. The process was extremely straightforward — easy, painless and honestly very impressive in how they carried out the entire experience.

Participating made me feel seen and valued, and I felt honored to contribute to research that may help others in the future. I was also relieved to learn that I do not carry a known genetic component to pass on to my children.

This was my first time participating in a Parkinson’s research study, but it won’t be my last. I’m very open to participating in future studies whenever possible. I also shared my genetic results with my family.

What keeps me hopeful is the resilience of the Parkinson’s community and the progress being made in research and treatment. Organizations like the Parkinson’s Foundation play an essential role by providing trusted education, resources, and advocacy that empower people living with Parkinson’s and their families.

If I could give advice to someone newly diagnosed, it would be this: take a deep breath. Parkinson’s looks different for everyone, and many people live well for decades. Stay active, build a strong care team, and stay connected to others who understand the journey.

Parkinson’s has changed parts of my life, but it has also deepened my sense of purpose. Today, I try to use my voice to raise awareness, encourage others living with Parkinson’s, and remind people that even in the face of uncertainty, there is still life to be lived, community to be found, and hope to hold onto.

Explore ways to get involved with Parkinson’s research today. Visit our Join A Study page and learn more about PD GENEration, the Parkinson’s Foundation genetics study that offers genetic testing and counseling at no cost to participants.

Bob’s PD Story

After living with Parkinson’s disease (PD) for 14 years, I find the most hope in connecting with people who are newly diagnosed. Which leads me to my own story with Parkinson’s.

Early on after being diagnosed, a series of kidney stones landed me in the hospital. Some of the nursing staff had no clue as to the importance of PD medication and wanted to take my medication away. I used the Parkinson’s Foundation Hospital Safety Guide to get medication management under control and have been connected to the Parkinson’s Foundation ever since.

Coping With Parkinson’s as a Team

When I was diagnosed with Parkinson’s, my movement disorders specialist (MDS) told me that PD is not like falling off a cliff. ‘You don’t go from no symptoms to a plethora of symptoms overnight,’ he said. After that appointment, I realized that the way doctors deliver news can quickly impact my depression and mood from one day to the next. So began my committed efforts to better my own mental health with mindfulness.

Learning to cope with Parkinson’s is an active endeavor for me and Deb, my amazing wife and care partner. Since day one we have been committed to finding ways to get involved with the PD community. We quickly found Moving Day Chicago, where our team, Martini Shakers, blended humor with PD and allowed us to build a support network I never anticipated.

I was hesitant to share my diagnosis with everyone, but my friends and business associates supported me through Moving Day. We ended up hosting fun martini parties and raising $60,000 through our team, but what was most amazing was how people showed up and continued to spur my fight, after Moving Day.

The Power of Mindset

My mindset, mindfulness and support team, have shaped our experience with Parkinson’s.

I love to talk to people when they are first diagnosed because it’s so important to talk about mindset. Their mindset is going to change how they deal with Parkinson’s. The first opportunity to start healing from PD is at diagnosis. Being involved socially, being in support groups, all of it works hand in hand. I don’t think one works without the other.

When it comes to Parkinson’s, it seems like a lot people with Parkinson’s isolate themselves and that’s something they don’t need to do, especially when the Parkinson’s Foundation is there to support them.  

The Parkinson’s Foundation Helpline (1-800-4PD-INFO) has always been there for me. It can be a support system and helps you find local resources such as exercise classes, support groups and events. They can also help you find a movement disorders specialist, which is essential to everyone with Parkinson’s.

Actively Managing Parkinson’s

My care team is an instrumental part of my support network. I go to Northwestern University Movement Disorders Center, a Parkinson’s Foundation Center of Excellence, where I feel I have some of the best care available.

I think everyone with PD should see a doctor who knows Parkinson’s. When I talk to people who are new to Parkinson’s, my first question is if they are seeing a neurologist or movement disorders specialist. That can make the difference, as these doctors know the medicine, therapies and what’s happening in PD research.

Over the years, my care team has guided me from medication adjustments to deep brain stimulation (DBS), which I recently underwent. DBS changed my life. The procedure is hard to promote to people, as being conscious for the procedure is tough, but I would do it again.

To keep a positive mindset and keep anxiety at bay, I also exercise and attend PD events. Parkinson’s means you have time to adjust your life as your disease progresses. If I gave in to all the stress that comes along with it, I feel I would progress quicker. I’m able to look at things through mindfulness.

Answering PD Questions & Advice

My questions about living with Parkinson’s have changed over the last 14 years. Those first few years I had a ton of questions, mostly for my neurologist: do I really need these medications? Are there other treatments? Can I work?

But over time, my questions morphed to What exercises help my symptoms? How can I find more people with PD? How can I get involved with the Parkinson’s Foundation?

Today, I barely ask questions about Parkinson’s and focus on staying positive. Deb and I have really worked to adapt to Parkinson’s, together. But that didn’t come without surprises. After years, Deb told me she didn’t know how to talk to me about her fears because it might take away from my positivity. With this disease, people with PD can tend to neglect their caregivers and children, but for me, all my support comes from the people around me so it’s important to have these conversations.

Parkinson’s has made me more adaptable. I used to say that Parkinson’s will not define me, but the joke’s on me. I’ve written a book, given a Ted Talk, volunteered, speak about Parkinson’s and even appear in the Parkinson’s Foundation PSA. I talk about Parkinson’s all the time — it has become my identify, and I’m thankful for that.

Deb’s PD Story

Since the moment of Bob’s diagnosis, we have chosen to remain optimistic and positive. Parkinson's disease is progressive and affects each individual differently. We accepted the diagnosis; we couldn't change that but have always reacted with hope. It is our attitude that we can control.

I am a middle school instructional assistant, and I work with special education students. Every day, these students face challenges and we always try new ways to encourage and support them. This outlook has guided my experience in how I can support my husband, Bob.

Together we brainstorm different strategies to stay successful in everyday life. It's these successes and positive beliefs that give me courage and keep me happy and hopeful.

From the onset of Bob’s Parkinson’s, we got involved. We participated in many Moving Day walks as a team (Martini Shakers) and as volunteers. We hosted our own fundraisers, we attended the World Parkinson Congress, where Bob spoke with Dr. Okun, the Parkinson’s Foundation National Medical Advisor, and we continue to talk with others facing challenges with Parkinson's.

All of this inspires me and keeps me going. I truly believe making the choice to be positive and optimistic has been the key to my husband's success, and mine as a care partner in this journey.