Nothing can prepare you for when you hear the words “you have Parkinson’s.” Everyone reacts differently when receiving a diagnosis. From confusion to relief, however you feel after you or a loved one has been diagnosed is completely natural.
In this article, we outline five common and honest reactions people have after receiving the life-changing news that they now must adapt to a new life with Parkinson’s disease (PD).
Wrapping your head around a medical diagnosis, understanding what comes with the diagnosis and making related decisions — such as where to seek care and when to start medications — can leave you feeling confused and anxious. This is especially common if you do not feel that you understand what to expect from your life with PD.
I walked into the room, the neurologist looked at me, had about a 20-second conversation and immediately said ‘Here’s Sinemet. Start the medication,’ That shocked me. I left the appointment with a prescription and little understanding of what a Parkinson’s diagnosis meant.
Learning more about the disease can help you settle into the diagnosis and your new life with Parkinson’s. Contact our Helpline at 1-800-4PD-INFO (1-800-473-4636) for answers to your Parkinson's questions.
Feeling devastated by the news of a diagnosis, especially if you don’t understand what it means or what to expect, is an understandable reaction. You may feel angry or depressed, perhaps resentful that this happened to you or regretful that you did not appreciate life before PD. This reaction is normal, and these feelings won’t last forever. Allowing yourself to feel them and move through them can help you find your new path forward.
'I'm sorry. You have Parkinson's disease.’ I stood in the parking lot, the receipt flapping in my trembling hand, completely stunned by the words I had just heard. At least my neurologist had the courtesy of saying, ‘I'm sorry’ before delivering the news. Still, it didn't seem to lessen the blow any. I felt like someone had reached into my chest and squeezed all the air out of my lungs.
When Todd connected with others living with Parkinson’s, he began to feel less afraid and more comfortable with thinking about the future. He felt accepted by the PD community and strengthened by its camaraderie.
Find your Parkinson’s community by locating the nearest Parkinson’s Foundation Chapter. Our Chapters educate the community about PD and raise awareness and funds through activities, such as Moving Day walks, Parkinson’s Revolution indoor cycling experience and educational programs to help ensure that people with Parkinson's, their families, and caregivers live their best life possible.
This can look different from person to person, but if your loved one is in denial after diagnosis, they may refuse to talk or learn about PD. They may hold unrealistic expectations about treatment or the progression of the disease, or they may seek out opinions from multiple doctors in a search for any possible explanation for their symptoms other than PD.
The doctors explained I had several tests ahead of me. PD was a clinical diagnosis and confirmed only by eliminating — through tests — all other neurological disorders. The test results came back negative. The doctors were right: I had PD. But my only symptom was that my right arm didn’t move when I walked. It seemed impossible. I didn’t want to believe it, and for a while I refused to believe it.
Rich didn’t feel comfortable sharing his diagnosis for years. If you are not ready to talk about Parkinson’s with those closest to you, consider joining PD Conversations, a place to ask questions, connect with others living with the disease and be part of a network of support without sharing your diagnosis publicly.
After experiencing worsening symptoms for years, being misdiagnosed, or suspecting you have something worse than Parkinson’s, your diagnosis may have come as a relief. You may find unexpected comfort in knowing you have an answer that makes sense and relief to have a neurologist and care team that can help you chart a course for treatment.
When I was diagnosed, it did not come as a shocking surprise. Working in a pharmacy for 32 years I knew something about Parkinson's disease and the first signs: difficulties when typing or writing, no swing with one of the arms. But the neurologist wanted me to take a scan ‘just in case’ … I was relieved when my diagnosis was ‘just Parkinson’s.’
Armed with a diagnosis, you’re ready to set personal goals based on what is most meaningful to you! Read more about setting specific, realistic goals for yourself with our 5 steps to Living Well.
Living well with PD is possible. A diagnosis and receiving PD-tailored care can help you to feel motivated and ready to embrace this new chapter. Whether you are ready to set an exercise routine, prioritize a healthy diet, or get involved as a volunteer or research participant, we can help you get started.
In 2015 I was officially diagnosed with Young-Onset Parkinson’s disease. My doctor is an amazing person who recommended that I get involved with the Parkinson’s Foundation. In 2016, I completed my training and became a Parkinson’s Foundation Research Advocate. I was encouraged to get involved in many projects and patient panels. Through my involvement with the Foundation, I became connected to a community of caring and knowledgeable individuals.
Top Newly Diagnosed Resources
Check out our tools specifically designed for anyone who has been recently diagnosed with Parkinson’s.
- New to Parkinson’s: this webpage has information and links to valuable resources.
- Helpline: contact us at 1-800-4PD-INFO (1-800-473-4636) or Helpline@Parkinson.org for answers to specific Parkinson’s questions or referrals to local PD specialists and classes.
- Find resources In Your Area: find a PD specialist and resources near you and get connected with your local PD community.
- Living Your Best Life: A Guide to Parkinson’s Disease: this book is filled with tools to help you process and cope with Parkinson’s. Download the book or listen to the audiobook.
As you process your or a loved one’s diagnosis, we are here to assist and empower you at every stage. When you’re ready, explore our Newly Diagnosed kit and start your journey to living well with Parkinson’s.