My PD Story

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.