My PD Story

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 another institution. It was confirmed — I indeed had young-onset Parkinson’s disease.

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. The movement symptoms of PD were not too bad, but the non-movement symptoms were overwhelming me (fatigue, brain fog, insomnia, just to name a few). My MDS put me on amantadine to help with my overall symptoms.

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 University Medical Center Movement Disorder Clinic. It was through this support group that I learned about the Parkinson’s Foundations Learning Institute. I was immediately interested when I heard the presentation and was 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 American 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 as a newly diagnosed patient that wasn’t on any medication for the first year of my diagnosis.  Thankfully, there are other studies that I can participate in. As of now, I’ve participated in five different studies including PD GENEration.

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.

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.