5 Steps That Can Help You Process a Parkinson’s Diagnosis
Nothing can prepare you for hearing the words “you have Parkinson’s.” 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 steps to help you process a new Parkinson’s disease (PD) diagnosis, including PD Stories from people after receiving their own life-altering news.
1. Determine Your Goals
Planning ahead with a new medical diagnosis can feel overwhelming if you do not know where to find resources and support. This is especially true if you were previously unfamiliar with Parkinson’s and your options for care. Equipping yourself with up-to-date information can help you set short and long-term goals to navigate your journey with PD.
When I was diagnosed with Parkinson’s… my response was to go on a crash course to learn as much as I could about this ‘progressive’ disease and see what action I could take.
My goal is to be as active as I can physically and mentally. Having the diagnosis has also prompted more reflection about life. While not sure what the future will bring, I am grateful to have found a ‘power through weakness.’ Because of this experience, I have a new perspective, and hope for the future.
Armed with information on PD, you’re ready to create healthy habits based on what is most meaningful to you. Read more about setting specific, realistic goals for yourself through diet and nutrition and find inspiration from our PD-tailored fitness videos that feature a different at-home workout every week, including balance and coordination exercises to meet your fitness goals.
2. Find an Expert
There are many benefits to seeking advice from a PD expert as you process a new diagnosis. We recommend receiving care from a movement disorders specialist, or a neurologist who has completed training in treating Parkinson’s disease. However, these specialists may not be available depending on where you live.
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 at Rush University Medical Center, a Parkinson’s Foundation Center of Excellence. It was confirmed — I indeed had Parkinson’s.
Finding a specialist doesn’t have to be a daunting task. Here are some ways you can find a PD specialist:
- Find a Global Care Network center that provides expert care near you
- Contact the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (1-800-473-4636) or Helpline@Parkinson.org for a referral
- Ask your primary care physician for a referral
- Contact your insurance provider for a list of neurologists or movement disorders specialists in your network
- Seek referrals from other people living with Parkinson's
3. Find Someone to Talk To & Build Your Support Network
Parkinson’s can be difficult to talk about. Voicing your feelings and concerns is an important step in processing a PD diagnosis. Additionally, there are many benefits to talking with a social worker to help relieve your anxiety and create a plan.
With the help of my social worker, I worked through 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.
We recommend joining PD Conversations, a place to ask questions, connect with others living with Parkinson’s and be part of a support network. This is a great solution for those who are not yet ready to share their diagnosis publicly. You can also follow us on social media to stay connected.
4. Create Healthy Habits
As you process a diagnosis, setting personal goals to stay mentally and physically healthy can help. Meet Frank below to learn from his personal experience of creating healthy habits following a diagnosis of young-onset PD.
A pivotal turning point was when I engaged with a movement disorders specialist. This collaboration reshaped my perception of how to manage Parkinson’s. Together, we created a holistic approach to tackle my symptoms head-on, establishing a plan that revolved around exercise, diet and stress management. We connected in a profound way that changed my outlook and helped me learn new techniques for dealing with PD.
Fueled by positivity and visualization, I envisioned a life free of mobility hindrances, propelling me towards greater activity and diminished fear. This journey of embracing Parkinson's became a lesson in understanding my body and its signals.
To learn more about creating healthy habits, explore our webinars featuring PD experts, aimed at providing education and addressing your most pressing questions.
5. Be Active
Living well with PD is possible. A diagnosis and receiving PD-tailored care can help you feel motivated and ready to learn how to live with PD on your terms. Whether you are ready to set a new exercise routine, prioritize nutrition, or get involved as a volunteer or research advocate, we can help you get started.
I have been a strength and wellness coach for the last 40+ years. As my ability to train for sports began to decrease, I found it rewarding to put more effort into training my athletes. It’s been a couple years now and I am truly enjoying putting my effort into training clients.
The Parkinson’s Foundation has helped me with resources and information, webinars, blog articles and podcasts. The material and information have been invaluable. My advice and my recommendation for anyone with PD is to not give up and keep moving.
Find your Parkinson’s community and local PD-tailored wellness and exercise classes by visiting your nearest Parkinson’s Foundation Chapter website. Help raise awareness through activities, such as Moving Day events, our Parkinson’s Revolution indoor cycling experience and local programs to help ensure that people with Parkinson's, their families, and care partners live their best life possible.
Ready to get involved? Learn about volunteering with the Parkinson’s Foundation or help advance Parkinson’s research when you enroll in our PD GENEration study!
Top Newly Diagnosed Resources
Explore these tools designed for anyone who has been recently diagnosed with Parkinson’s:
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New to Parkinson’s: webpage with information and links to valuable resources.
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Helpline: contact 1-800-4PD-INFO (1-800-473-4636) or Helpline@Parkinson.org for answers to your PD questions and referrals to local PD specialists and classes.
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Find resources In Your Area: find a PD specialist and resources near you and find your nearest chapter.
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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 learn how to live with Parkinson’s, we are here to assist and empower you at every stage. When you’re ready, explore our Newly Diagnosed Guide.
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Managing "Off" Time in Parkinson's
Medications for Non-motor Symptoms
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