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.

Turning a Diagnosis into a New Purpose

I was diagnosed with Parkinson’s disease (PD) in 2019 after my wife noticed a tremor in my left hand. Like many people, I left that initial doctor appointment with more questions than answers. For a period of time, I focused on following medical advice, maintaining my routine and not projecting too far into the future. I believed I was managing Parkinson’s, but in reality, I was largely reacting to it.

Over time, it became clear that a passive approach wasn’t neutral — it had consequences. I noticed gradual changes and realized that waiting for Parkinson’s to dictate next steps limited my options. That marked a shift in how I approached the disease. I decided to take a more active role, both in managing my own health and in contributing to broader efforts aimed at improving outcomes for people with Parkinson’s.

One of my first focus areas was exercise. As I began educating myself, the Parkinson’s Foundation resources on movement were critical. Their recommendation to incorporate four types of exercise — aerobic activity, strength training, balance and agility work, and flexibility — gave me a clear, practical framework. It became the foundation of my exercise plan. I used it to structure my weekly training, build variety into my workouts and ensure I was addressing multiple aspects of movement.

From that base, I began setting goals and layering in events as a way to stay consistent and accountable.

Over the past few years, that approach led me to complete seven triathlons, eleven Spartan obstacle course races and three races up the Empire State Building stairs. These events weren’t about competition. They provided structure, measurable milestones and a reason to remain engaged over the long term. Training for events helped translate an abstract recommendation (exercise is important) into a concrete, sustainable practice.

With each event, I gained confidence — not only in my physical capacity, but in my ability to influence my own trajectory. That confidence began to shape how I approached other aspects of living with Parkinson’s.

I took a broader focus on wellness. Again, Parkinson’s Foundation information played an important role, particularly around nutrition, sleep, stress management and overall lifestyle balance. None of these elements are cures, but together they help tilt the playing field in my favor. I became more intentional about what I eat, how I recover, how I manage stress and how consistently I support my body and brain. The goal wasn’t perfection; it was building habits that support resilience over time.

Advocacy followed. I became involved in efforts supporting the National Plan to End Parkinson’s Act, meeting with the staff of seven U.S. Senators. Three ultimately committed to supporting the legislation. That experience demonstrated how individual stories, shared clearly and persistently, can influence policy. It also reinforced my belief that advocacy isn’t limited to professionals — it’s accessible to anyone willing to engage.

Learn more about Parkinson’s-related Policy and Advocacy

At the same time, I became increasingly involved in Parkinson’s research. What began as curiosity developed into active participation. I enrolled in studies, learned directly from researchers and gained insight into how essential patient involvement is to scientific progress. Research provided clarity and purpose, and it led me to become both a Parkinson’s Foundation Ambassador and a Research Advocate — roles that enable me to help ensure patient perspectives are reflected in the work shaping future treatments.

Looking back, I realized I hadn’t just been responding to Parkinson’s. I had been building a framework for how to live well with it.

Once that became clear, I felt a responsibility to share what I had learned. It all led me to write a book, Living Parkinson’s, and to create livingparkinsons.com as a place to organize information, resources and lessons learned along the way. My goal was to document practical strategies — grounded in lived experience and supported by science — that together form the core of an actionable plan anyone can adapt. Rather than offering prescriptions or guarantees, the focus is on helping people take ownership of their disease and actively fight back in ways that fit their own circumstances.

This journey I’m on has been about agency. Parkinson’s changes life, but it doesn’t eliminate the ability to influence outcomes. Whether it’s exercise, wellness, education, advocacy or research participation, each step builds momentum.

Parkinson’s has altered my story, but it hasn’t determined its direction. My journey isn’t defined by a diagnosis — it’s defined by how I’ve chosen to respond. If sharing that perspective can help someone else take a more active role in their own journey, then the effort has been well worth it.

Help champion policy changes that make life better for people with Parkinson's. Get involved today.