My PD Story

My name is Liz, and I was diagnosed with Young-onset Parkinson’s disease (YOPD) in 2018 at the age of 46. I made an appointment with a neurologist due to trouble moving my arm. I went into the appointment hoping I had pinched a nerve. Instead, I walked out with a Parkinson’s diagnosis. This left me completely devastated — my diagnosis was unseen, unknown and unplanned for. 

Part of the initial shock started at that very first appointment. Before I could begin to process the news, the neurologist rattled off a plan to run several tests and prescribe medications I had never heard of. She said, “Don’t cry about it.” This coldness was paired with a lack of information and resources. Being told not to have an emotional response to my Parkinson’s diagnosis was incredibly difficult. 

Following the appointment, I called my mom to break the news. Next, I called my therapist, who also happens to be a social worker — someone who specializes in helping others navigate a range of difficult life situations. As a social worker myself, I knew I needed this type of professional support to help guide me through this life-changing diagnosis.  

I worried about how Parkinson’s would affect my ability to work and parent my 15-year-old son. As a single mom, it was important for me to talk through the questions that swirled in my mind. Would I need to go on disability? Would I be able to walk at my son’s high school graduation, or play with my future grandchildren? These life milestones and the unknown progression of Parkinson’s disease were difficult to process. 

With the help of my social worker, I worked through these uncertainties by creating short and long-term plans for my new life with Parkinson’s. She connected me to relevant resources for my lifestyle and symptoms, encouraging me to prepare for the worst but hope for the best. For me, I will continue to do everything I want to do in the way I want to do it, until Parkinson’s takes that from me.  

Part of a social worker’s role is to support people by helping them live in the present. There are also very few resources just for women with Parkinson’s, so I decided to “social work Parkinson’s.” I started a support group for women living with Parkinson’s. We met in person before the Covid-19 pandemic; the group then transitioned to Zoom and we’ve stayed there because it allows more women to access the support.  

Ever since I found the Parkinson’s Foundation has various ways to get involved, I’ve been volunteering. I joined the Parkinson’s Foundation New England Chapter (find your chapter here) and participated in Moving Day Boston this past October. Thanks to my amazing team, I was surprised and happy to be on the leaderboard as the top fundraiser and top team fundraising team!  

Volunteering with the Parkinson’s Foundation is an important part of my fight. It allows me to use my skills as a social worker to help others while also empowering myself. 

Here’s the main takeaway: It’s easy to get stuck worrying about all the bad and challenging things that can come with a diagnosis like Parkinson’s. I don’t want to live my life in fear; fear keeps you from actually living. Yes, Parkinson’s impacts every part of my life. I’ve worked to keep it in perspective as just a part of who I am and not the thing that defines who I am.  

Learn more about Young-onset Parkinson’s and resources that can help.