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. 

Finding My Rhythm

For years, I lived with a secret. When you are diagnosed with Parkinson’s disease (PD), there is this common, almost overwhelming urge to hide it. Whether it’s the fear of not being accepted or the dread of people looking at you with pity, many of us fight to act “normal.” Trying to mask a diagnosis that has become a huge part of your life is exhausting. It’s hard to be your authentic self when you’re hiding.

I was diagnosed at age 51 in February 2021, right in the heart of the pandemic. At the time, I was working full-time as an educator, leading others through the trials of remote and in-person school. The diagnosis felt like a gut punch during an already impossible season. I kept my diagnosis a secret for over a year — I didn’t even tell my family. I had back surgery during the same time to relieve sciatica, which also caused me to have difficulty walking. This made it easier to hide my symptoms as the sciatic pain masked my rigidity.

Coming out of the pandemic and back into reality, the strain of hiding continued. Eventually, I began to let people in and felt a burden lift. I discovered that people are often far more supportive and less judgmental than I thought. Although I don’t tell everyone I meet that I have PD, I’m becoming more open about my journey, hoping that by sharing my story, I can help someone else live their authentic life a little easier.

Adapting and Moving

While Parkinson’s has affected my left side and made handwriting difficult, I haven't let it stop my voice. I’ve discovered that speech-to-text is a game-changer. It’s more efficient than my old way of writing, allowing my thoughts to flow quickly and freely.

I’ve also learned that movement is medicine. My mobility can feel constrained, so working out is a non-negotiable part of my day. If I skip a workout, I feel the difference. The breakthrough for me was finding a specific Parkinson’s exercise group. Not only has it greatly enhanced my physical ability to function, but it has provided me with a network of "warriors" who are on this same path.

The Power of the Tribe

What keeps me happy and hopeful? Connection. Spending time with family and friends is the best way to stay healthy, but connecting with my "PD tribe" is critical. There is a deep, unspoken understanding that exists between us. Attending the 2025 Moving Day Chicago was an uplifting experience — seeing so many people thriving and living well was the best kind of fuel for my spirit.

When I got a call to participate in the new Parkinson's Foundation PSA, I realized this was a chance to connect with even more people in the PD Tribe and help make others feel less alone. 

My Advice: Find Your People

If you are new to this diagnosis, my biggest piece of advice is this: Find your people. Whether it’s an illness or any other life challenge, finding your tribe is essential. The bond you’ll form with those who truly understand your journey will give you a strength you didn't know you had.

Five years into this journey, I’ve learned that staying active — physically, mentally, socially and spiritually — makes all the difference. Don’t hide; reach out. There is so much life to live!

Find your Parkinson’s community when you connect with your nearest Parkinson’s Foundation Chapter. Find your Parkinson’s Foundation Chapter and follow us on social media.