I was 56 when I was diagnosed with Parkinson's disease (PD). Now, almost 10 years later, I look back on how the disease has affected my life but also how I continue to adapt. I never thought I’d be at the gym so much, or that I’d have to take early retirement, but I have learned that I am resilient and that even as the disease progresses, I can still have a great deal of joy in my life.

A few months before being diagnosed, I noticed symptoms of Parkinson’s, such as a small tremor in my hand and a loss of smell. At the urging of my wife, I saw my primary care doctor, who suspected Parkinson’s. I then saw a general neurologist who confirmed the diagnosis.

I sought a second opinion at Northwestern Medicine Parkinson’s Disease and Movement Disorders Center because it is a Parkinson’s Foundation Center of Excellence. Northwestern Medicine Neurologist Danny Bega, MD, confirmed my diagnosis and created a personalized treatment plan addressing not only medications, but also lifestyle changes and exercise to manage symptoms and enhance my quality of life.

A central element of my life is attending Rock Steady Boxing classes specifically designed for people with Parkinson’s. I also attend Parkinson’s-specific ping pong, golf and Second City Improv classes. Who knew Parkinson’s could be so funny? Many of these initiatives have received Parkinson’s Foundation community grants.

The Parkinson’s Foundation has been a key resource for providing me and my family with ongoing education. I found the Hospital Safety Guide to be helpful when I was diagnosed and continue to use it as a resource. Each year, I attend the Parkinson’s Disease Patient and Caregiver Symposium, co-hosted by the Parkinson’s Foundation and Northwestern Medicine, to stay updated on treatments and research. Through the Foundation’s events like Moving Day walks and Parkinson's Players activities, I have found support, camaraderie and a sense of belonging.

My journey with Parkinson’s disease has taught me many things. One is that Parkinson’s isn’t limited to older adults; it affects people of all ages and can happen to anyone.

I’ve also learned to celebrate milestones. I’ve been living with Parkinson’s for nearly a decade, and every year that my symptoms are managed is a milestone. I appreciate that I have been able to live well enough to take several international trips with my wife and daughter since my diagnosis.

I am proud to have stuck with a vigorous exercise program over the years, and it’s paying off. I have definitely learned that exercise equals medicine, and the community of supportive coaches and friends is invaluable. I hope fellow people with PD will approach this disease with a positive attitude and a commitment to being active — and keep pushing to live the best life possible.

Learn more about the Northwestern Medicine Parkinson's Disease and Movement Disorders Center. 

Find the Parkinson’s exercise class that works for you! For virtual options, explore our Fitness Friday videos. For in-person classes, visit your local chapter’s webpage or call our Helpline at 1-800-4PD-INFO (1-800-473-4636).

My Parkinson’s disease (PD) story started with a severe orthopedic injury on July 26, 2015. I fell off a ladder in my garage and suffered a tibial plateau fracture of my left leg (I broke my left knee joint). After two weeks in the hospital and two surgeries, I was recuperating at my daughter’s house since I was non-weight bearing for over four months and could not live alone. In October, I noticed that whenever I was sitting still, I felt like my right hand was shaking, but when I looked at my hand, I couldn’t see any movement.

I mentioned this to my orthopedic surgeon and his initial thought was let’s keep an eye on it since I had suffered a lot of damage to my sciatic nerve because of my fall in July. 

By April of 2016 the internal tremor had turned into a resting tremor, and I scheduled an appointment to see a neurologist. I had my initial neurology appointment in June 2016. I scheduled the appointment over my lunch hour because quite frankly I thought the tremor was related to the nerve damage from my fall — a Parkinson’s diagnosis was the farthest thing from my mind.

During my visit the neurologist took me through a battery of tests. When the neurologist had completed all the screenings, she asked me if a family member came with me to the appointment — of course, by now I’m getting concerned. I said that I came alone as I scheduled this appointment over my lunch hour. The neurologist proceeded to tell me that I have young-onset Parkinson’s disease.

I was stunned and in shock. The neurologist explained that Parkinson’s is a clinical diagnosis and I had several of the movement symptoms (tremor, bradykinesia and rigid muscles). The neurologist also ordered some diagnostics tests including blood work, a brain MRI and a DaT scan.

A few months later, I sought a second opinion on my diagnosis and saw a movement disorders specialist (MDS) at Rush University Medical Center, a Parkinson’s Foundation Center of Excellence. It was confirmed — I indeed had Parkinson’s.

Initially, my symptoms were mild, so I wasn’t put on any medication, which was fine with me because I was still very much in denial. I went on with work like nothing was wrong, but that didn’t last very long.

By 2017, I was struggling to manage my work and personal activities. Working in international accounting, I traveled a lot for work. I would hide my tremor during presentations, but the non-movement symptoms overwhelmed me (fatigue, brain fog, insomnia). It wasn’t until my MDS put me on amantadine when I started to believe I had Parkinson’s.

In 2018, I retired from my position as an accounting manager at a pharmaceutical company. Retirement was the right decision for me because I could see how the stress of work coupled with all my other responsibilities was negatively affecting me and making my PD symptoms worse. I started taking Carbidopa-Levodopa.

Fast forward to now, 2024. I’m actively involved in the newly formed African American support group at Rush. It was through this support group that I learned about the Parkinson’s Foundation Learning Institute. I was immediately interested and thrilled to be chosen (along with my daughter who is my care partner).

In September 2023, I was in the first graduating class of all Black and African American research advocates.

As a Parkinson’s Foundation Research Advocate my focus is twofold:

1.  Participate in Parkinson’s research studies.

African Americans are severely under-represented in research studies, which can impact our ability to have effective therapies developed for us in the future. I wish I had more information early in my diagnosis because there were several studies that I could have participated in being newly diagnosed and not on medication for the first year of my diagnosis.

I was really excited to participate in PD GENEration because I knew I would get to talk to a genetic counselor, and I would see the results. I felt empowered while participating in PD GENEration because I was doing something about my Parkinson’s. I also felt relieved, because I didn't have any mutations. That made me feel better as far as my kids’ future. If something were to happen, and my children were to have Parkinson’s, there would hopefully be a whole different landscape for them treatment-wise versus what we have right now.

When it comes to participating in PD research and navigating life with this disease, I feel very strongly about sharing information with family.

PD GENEration just opened the door for me, and I felt more at ease about participating in research. PD GENEration was my first research study and I’ve participated in five studies since.

2.  Raise community awareness.

African Americans are less likely to be diagnosed with Parkinson’s due to lack of information and access to care (to name a few). We also need to understand the importance of participating in Parkinson’s research and to learn the early signs of Parkinson’s. I did not know that loss of smell and diminished taste is an early sign of PD, both of which I recall being an issue for me as early as 2012.

As a Parkinson’s Foundation research advocate, I want to break down the fear of talking about Parkinson’s and the fear of participating in research. I know we have a lot of issues based on prior history, but things are different now.

When I speak at community events — from health fairs in churches to our community center —  I tell people that when you participate in a study, you'll go through a confirmation process where you’ll get answers to all your questions. Research is something that can help you, not just right now, but down the line. That really does make it matter to me. I want us to be able to be represented in the PD GENEration database and have it be more diverse so everybody can get effective treatments for this disease.

In conclusion, I know that this disease can be overwhelming. Find something within the PD community that you are passionate about, there are so many areas that you can get involved in. I went from being in complete denial about my disease in 2016 to becoming a Parkinson’s Foundation research advocate in 2023. 

I now feel empowered to fight this disease every day and I have a community of support with my fellow research advocates, friends and family. Living with Parkinson’s is a long and sometimes uncertain journey, but even on my challenging days I know that I have an advocacy plan and that my efforts will make a difference in the long run — that is what keeps me going each day.

Explore ways to get involved in the Parkinson’s Foundation — from our research advocate program to joining a research study and exploring volunteer opportunities.