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)

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. 


Frequently Asked Questions: A Guide to Parkinson's Disease

Published by Parkinson's Foundation, 2024

This 27-page booklet (PDF) answers the most frequently asked questions about motor and non-motor symptoms, treatments, exercise and therapies, hospital safety, finding support, staying independent, the impact of PD on the family, and research. There is an appendix with a medications list.


Guide for the Newly Diagnosed

Published by the Michael J. Fox Foundation

This 32-page booklet (PDF) offers six tips for your first year with Parkinson's Disease (PD). It also talks about whether you should get a second opinion, how did you get PD (and will your children get it), managing emotions and how stress makes symptoms worse, finding good advice and information about PD, managing symptoms, making the most of doctor appointments, participating in PD research, and sharing your diagnosis with others. 


Living Well with Parkinson's Disease, 10 Things You Can Do Now

Published by American Parkinson Disease Association, 2018

This two-page educational supplement (PDF) suggests 10 lifestyle changes to most effectively care for yourself after a diagnosis of Parkinson's Disease.  Suggestions are based on research and what those with PD and their care partners have found most effective in delaying the progression of symptoms and being ready for coping with advanced stages.


Living Your Best Life: A Guide to Parkinson's Disease

Published by Parkinson's Foundation, 2019

This 52-page booklet (PDF) focuses more on the aspects of living and coping with Parkinson's Disease (PD) and less on symptoms and medications. It has chapter check ins and resources in the appendices to help you process how you feel about having PD, assess your plan for self care and the support you have in place, and prepare for the future. One appendix specifically discusses sharing your diagnosis with the workplace.


Newly Diagnosed Guide

Published by Parkinson's Foundation

This 8-page booklet (PDF) was created with direction from people with Parkinson’s Disease (PD) to ensure readers have the information they need to know. It provides an overview of PD (symptoms, causes, and treatments), 5 steps to live better today with PD, and talks about building your care team, preparing for appointments, and questions to ask your doctor. The Parkinson's Foundation Helpline is highlighted with the number to call if you have questions or need help finding resources (800-4PD-INFO).


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. 


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

5 Steps to Living Well

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

This series of webpages walks readers through how to set goals, find a Parkinson's Disease (PD) expert, find someone to talk to, create healthy habits, and be active.
Recién Diagnosticados: 5 pasos


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

5 Tips for the Newly Diagnosed

By the Stanford Parkinson's Community Outreach Program, June 2024

This four-minute video passes on tips from people with Parkinson's to those who are newly diagnosed. Information under the YouTube video provides several links to Stanford Parkinson's webpages to find a support group, exercise (benefits, classes, and videos), nutrition, and more.


Diagnosis Parkinson's Disease: You are Not Alone 

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

This 25-minute video 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 was Diagnosed with Parkinson's Disease, Now What?

By the American Parkinson Disease Association, March 31, 2022

Movement disorders specialist Stephanie Bissonnette, MD, speaks for about 10 minutes PD symptoms, diagnosis, and that your priorities following a PD diagnosis should be exercise, a healthy diet, and medication IF symptoms interfere with your ability to perform daily tasks or exercise.  Dr. Bissonnette answered listener questions on a variety of PD topics for another 30 minutes, mostly about being newly diagnosed and participating in clinical trials.


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


Let's Talk: Discussing the Diagnosis and Navigating Family Dynamics

By CurePSP, July 30, 2019

In this hour long talk at the 2019 CurePSP Family Conference, Jessica Shurer, MSW, LCSW discusses how to explain your diagnosis to people unfamiliar with it in understandable terms, and how family members and caregivers can help with this conversation.  While the diagnosis referred to in this talk is progressive supranuclear palsy (PSP), which is a parkinsonism with similarities to Parkinson's Disease, the concept is the same.

Ms. Shurer gave a similar half-hour talk at the CurePSP Family Conference in Nov. 2020.  That talk is posted on the CurePSP YouTube channel.


New to Parkinson's? Steps to Take Today

By the Michael J. Fox Foundation, February 2021

In this one-hour webinar from the Third Thursday Webinar series, panelists discuss practical tips for navigating a new Parkinson’s diagnosis, including how to build your care team, ways to connect with the community and opportunities to participate in research.


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.


Parkinson’s 101: Parkinson’s Basics

By Parkinson Association of the Rockies, 2022

Part one of a three-part educational module to help newly-diagnosed people with Parkinson’s and their care partners understand the signs, symptoms, stages, and possible causes of Parkinson’s. Participants learn about available resources and tips on how to thrive with Parkinson’s.


Parkinson’s 101: Medications & Treatments

By Parkinson Association of the Rockies, 2023

In part two of a three-part series movement disorders specialists Trevor Hawkins, MD, delves into the different types of medications used to treat Parkinson's and how they interact with the brain and work within the body.


Parkinson’s 101: Exercise as Medicine

By Parkinson Association of the Rockies, 2022

In part 3 of a three-part series physical therapist Lyndsey O’Keefe, DPT, discusses how Parkinson's Disease (PD) affects movement, the research supporting exercise as a form of medicine for Parkinson’s Disease, what kinds and how much exercise is best, how to get started exercising at home, and how physical therapy can help someone with PD.


Parkinson's Disease: New Diagnosis Workshop, Part 1

By Parkinson Society BC, February 8, 2022

Part one of this three-part workshop is one hour long.  Movement disorder specialist Dr. Jonathan Squires provides an overview of Parkinson's Disease (PD).  He explains what we know about the mechanism causing the disorder, shares risk factors for PD and how a diagnosis is made, discusses typical disease progression, pre-motor symptoms, motor and non-motor symptoms.


Parkinson's Disease: New Diagnosis Workshop, Part 2

By Parkinson Society British Columbia, February 15, 2022

Part two of this three-part workshop is also one hour long.  Nurse practitioner Joanna Davis focuses on management of Parkinson's symptoms, including non-motor symptoms,  using medications, alternative, and advanced therapies.


Parkinson's Disease: New Diagnosis Workshop, Part 3

By Parkinson Society British Columbia, February 22, 2022

Part three of this three-part workshop is nearly an hour and a half long.  Neuro physiotherapist Michelle McCarthy discusses the benefits of exercise for overall health, how exercise can help slow the progression of symptoms and how to exercise consistently and safely. Following her talk, McCarthy answers questions and hosts a panel of all three workshop series speakers for a final 30-minute question and answer session.


Parkinson's Disease 101: What You and Your Family Should Know

By the Parkinson's Foundation, July 21, 2021

This 1-hour webinar, movement disorders specialist Jori Fleisher, MD, provides a basic overview of Parkinson’s disease, including what Parkinson’s is, what causes it, common symptoms, treatments, and strategies for managing symptoms.  Following the talk, Matthew Burns, MD, PhD, answers questions.


Parkinson’s Disease - Introduction to Treatment

By Panorama Patient Network, 2017

This series of 9 short videos explore how Parkinson's Disease (PD) is diagnosed, whether PD can be predicted, long term prognosis, concern over taking too much levodopa, lifestyle changes to improve quality of life after a PD diagnosis, anxiety, depression, and psychosis.


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.


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.]


Hollistic and Supportive Care for Living Well With Parkinson's

By the Davis Phinney Foundation, November 11, 2020

In this 1-hour webinar, Dr. Christopher Tarolli speaks about how those with Parkinson's disease (PD) are often not well supported in their symptom management.  There is a better model of care for those with PD but it is not widely available.  Dr. Tarolli gives tips for finding the best experts in your area to be on your care team so you can live your best life with PD.



Last updated June 2024 by Stanford Parkinson's Community Outreach.