Newly Diagnosed with PD?

Learning you have Parkinson's disease (PD) may bring up feelings ranging from disbelief and despair, to relief at knowing the cause of previously unexplained symptoms.  Now that you have this diagnosis, what is your first step?  The short answer is, take a breath and learn about living with PD before making any significant life changes. 

PD is not a death sentence, but it is progressive.  The resources on this page will help you come to terms with your diagnosis, think about when and how to tell friends and family, understand that your symptoms are unique to you, and teach you to build on others' experience for your best quality of life with PD.

More general information about Parkinson's disease can be found on our Overview of PD page.


Downloadable Documents | Online Articles | Podcasts & Webinars


Downloadable Documents (PDF)

Diagnosis Parkinson's Disease: You are Not Alone

Published by Parkinson's Disease Foundation (Now the Parkinson's Foundation), 2012

This 30-page booklet (PDF) serves to answer questions that may arise upon diagnosis. 


Every Victory Counts

Published by the Davis Phinney Foundation, 2017

This 382 manual (PDF) is free in either paper or digital form. It provides an overview of Parkinson's disease, direction in assembling your wellness team and getting involved in research. It discusses managing emotions and both personal and workplace issues. The bulk of the text is about living well and managing both motor and non-motor symptoms through exercise, nutrition, counseling and medications. 


Guide for the Newly Diagnosed

Published by the Michael J. Fox Foundation

This is a list of 45 questions and answers (PDF), applicable to someone newly-diagnosed with PD. It is a compilation of the experiences of six people with PD. 


Parkinson's Disease Handbook

Published by American Parkinson Disease Association, 2017

This 44-page booklet (PDF) reviews the symptoms, cause, and treatment of PD. There are also sections on social issues and patient support as well as a glossary of key terms. 


Parkinson's Disease Q&A, Seventh Edition

Published by Parkinson's Disease Foundation (Now the Parkinson's Foundation), 2017

This 68-page booklet (PDF) answers the most frequently asked questions about PD symptoms, treatments, common problems and research. 


You, Your Loved One and Parkinson’s Disease

Published by the Michael J. Fox Foundation

Three pages (PDF) of advice from Lonnie Ali and the Michael J. Fox Foundation on diagnosis and the first days with PD, PD and your marriage, PD and your friendships, taking care of your own emotional life (as a caregiver) and learning from each other over time.


Online Articles

Advice for the Newly Diagnosed

Published by Parkinson's Disease Foundation (Now the Parkinson's Foundation)

This series of 18 webpages, written by people with Parkinson's, addresses Parkinson's issues initially encountered by the newly diagnosed, including adjusting emotionally, telling family and your employer, relationship changes and communication, medication decisions, travel and driving.


Care Partners

Published by the Michael J. Fox Foundation

This webpage outlines the care partner’s role as part of the care team.  It offers advice for care partners in managing your loved one’s care, caring for yourself, discusses Parkinson’s and your relationship and provides a list of relevant blogs and caregiving associations.


Newly diagnosed: Building a Better Life with Parkinson’s

Published by the Parkinson’s Foundation

This webpage contains a short video featuring advice from people with Parkinson’s and caregivers.  There are also links to other Parkinson’s Foundation webpages on living well, accessing the Parkinson’s Foundation helpline, ordering the free Newly Diagnosed Kit and signing up for PD Conversations (an online Parkinson’s community).


Parkinson's 101

Published by the Michael J. Fox Foundation

This one page info-graphic gives the statistics on Parkinson’s disease to promote awareness and research support.  It tells how many people have it, what are some lesser-known symptoms, when the best drug was developed, what causes it, what tests are there, that are the early symptoms, and more.


A Primer on Parkinson's for the Newly Diagnosed

Published by the Davis Phinney Foundation, January 3, 2017

This webpage has five expanding sections with information answering these questions: How is Parkinson’s diagnosed?  How did I get Parkinson’s and when did it start?  What is a Parkinson’s care team and who should be on mine?  What can I do to live well with Parkinson’s?  Where can I find more resources and information?


Surprising Gifts Parkinson’s has Given Me

By Amy Dressel-Martin, MA.  Published by the Davis Phinney Foundation, January 23, 2017.

This short essay was written by a woman with young onset Parkinson’s disease, who had DBS.  She reflects on how Parkinson’s has changed her priorities for the better, and introduced her to wonderful friends.  She may be happier now than she would have been without Parkinson’s disease.  She certainly has more gratitude.


Podcasts & Webinars

Diagnosis Parkinson's Disease: You are Not Alone 

By the Parkinson's Disease Foundation (Now the Parkinson's Foundation), 2009

This 25-minute video is a companion to Parkinson's Disease Q&A. It was created to provide some comfort and encouragement for a person who has just been diagnosed with Parkinson's disease. It includes testimonials from people with Parkinson's on how they learned to cope and live with the diagnosis, scientific and medical information from healthcare experts and helpful tips and resources.


Diagnosis PD, Now What? Managing the First Few Years with Parkinson’s

By the Parkinson’s Disease Foundation (Now the Parkinson's Foundation), March 7, 2017

In this 1-hour webinar Dr. Suketu Khandahar reviews the basics of Parkinson’s symptoms and diagnosis and the honeymoon period. He uses simple diagrams to demonstrate the benefit of exercise, developing a care team and working with them effectively, when to start medications, the importance of becoming an informed patient and creating a sense of community.


I’ve Got Parkinson’s…Now What? Navigating a New Parkinson’s Diagnosis

By the Michael J. Fox Foundation, May 21, 2020

In this 1-hour webinar expert panelists and people with Parkinson’s discuss practical tips and personal viewpoints on being diagnosed with PD as well as ways to connect with the community.  [Registration is required but is free.]
Webinar Notes on the Stanford PD Community Blog


Newly Diagnosed: Living Your Best Life with Parkinson’s 

By the Parkinson's Foundation, June 9, 2020

The objectives of this one-hour webinar are to understand the importance of patient education and support from the time of diagnosis, understand caregiver burden and how to prevent it, understand the interdisciplinary team approach to care and the role of palliative care in Parkinson’s disease.


ParkinsonWISE

By the Parkinson Association of Northern California, October 8, 2020

While this 20-minute video is intended to educate the fitness and wellness communities about Parkinson's disease, it provides a good overview of the disease and how a combination of treatments and a positive attitude leads to a good quality of life.


Parkinson’s 101: Parkinson’s Basics

By Parkinson Association of the Rockies, August 2019

Over nearly 2 hours this webinar covers the basics of Parkinson’s Disease (PD), including terminology, disease stages, causes, symptoms and your care team.  Following the basics, a woman with PD speaks about the benefits of exercise in slowing PD progression, and her husband who explains why care partners should participate in the same exercises.  [Registration is required, but is free.]
Webinar notes on the Stanford PD Community Blog


Parkinson’s Disease - Introduction to Treatment

By Panorama Patient Network, 2017

In this 12-minute video, neurologist Matt Stern, MD, explains how Parkinson’s disease is often best treated with a mix of medications.  Using low doses minimizes the risk of long-term side effects.  In the second half of the video, neurologist Susan Fox, MD, discusses the importance of lifestyle in dealing with Parkinson’s disease, emphasizing the importance of sleep and exercise.


Patient Voices: Parkinson’s Disease

By Karen Barrow with The New York Times, August 2008

Patient Voices is an audio-visual series that tells the stories of people living with chronic illness.  The Parkinson’s Disease edition has five videos about people diagnosed in different stages of life and their different paths to live with it.  [Subscription to The New York Times may be required.]



Last updated August 2020 by Stanford Parkinson's Community Outreach.