When someone is diagnosed with Parkinson's Disease (PD) under the age of 50, it is referred to as young onset Parkinson's Disease (YOPD). (Researchers often designate those younger than 20 as YOPD.) While the symptoms are the same, regardless of the age a diagnosis is made, the issues facing those at a younger age are significantly different due to their stage of life.
Younger people are often still employed and may have children in school. There are legal and financial issues that require careful planning. Insurance coverage is crucial until one qualifies for Medicare (or Medicaid). These resources will help you understand and navigate these issues.
Downloadable Documents | Online Articles | Podcasts & Webinars| YOPD Stories
My Mommy Has PD, But It's Okay: A Guide for Young Children About Parkinson's Disease
By Jan Quist. Published by American Parkinson Disease Association
This 24-page booklet (PDF) was developed to assist you in talking with your child about Parkinson’s disease and in answering some of the more common questions children ask about the disease. Reading the booklet together provides an opportunity for discussion within families.
Sharing Your Parkinson's Diagnosis at Work, A Practical Guide Part One
Published by the Michael J. Fox Foundation
This three-page guide (PDF) provides practical tips and tools for crafting a personalized strategy to bring Parkinson's into the workplace.
Talking about Parkinson's at Work, A Practical Guide Part Two: Managing Long-Term Professional Relationships
Published by the Michael J. Fox Foundation
This five-page guide (PDF) recommends strategies for continuing conversations, handling common reactions and situations, and managing long-term professional relationships.
Young Parkinson's Handbook: A Guide to Patients and Their Families
Published by American Parkinson Disease Association National Young Onset Center, 2008.
This 53-page booklet (PDF) provides the basics on PD and YOPD. There are also chapters on mind, memory, and behavior as well as changing roles and relationships. This is an excellent print publication for someone newly-diagnosed with young onset PD.
Early & Young Onset of Parkinson’s Disease
Published by Parkinson Association of the Rockies
This webpage outlines differences between young onset Parkinson's disease (YOPD) and later onset PD. Considerations unique to those with YOPD, including links to pages with more information about how YOPD affects employment and financial planning.
Early onset/Young onset Parkinson's
Published by the European Parkinson's Disease Association
Of particular interest on this web page is the list of articles in Parkinson's Life online magazine including YOPD personal accounts, research papers, and more.
Parkinson's and Your Children/Teenagers
Published by the Parkinson's Foundation
Natural reactions children and teens may experience when a parent has young onset PD, and how to help them adjust. Also included are a Parkinson's book list for kids, tip sheets for kids and teens, and online Parkinson's parenting resources.
Spotlight YOPD
Published by Spotlight YOPD, UK
This website offers information to help those diagnosed with young onset Parkinson's disease (PD) navigate issues unique to those in midlife, including emotions, sex and being female with PD.
What Young-onset Parkinson’s Can Look Like
By Sherri Woodbridge. Published by Parkinson's News Today, July 19, 2017
This short webpage shares a personal account of some ways in which young onset Parkinson's disease (YOPD) can manifest and how YOPD symptoms can be misdiagnosed due to a person's youth.
Young Onset Parkinson's Disease
Published by the Michael J. Fox Foundation
This webpage features a five-minute personal account video to illustrate the challenge of having young onset Parkinson's disease (YOPD). Also included is information about employment, financial, family planning, parenting, relationship and marriage considerations specific to those with YOPD.
Ask the MD: Young-Onset Parkinson’s Disease
By the Michael J. Fox Foundation, July 23, 2019
In this 4-minute video, Dr. Rachel Dolhun defines the age at which Parkinson’s is termed young-onset and outlines unique circumstances (may have young children and be employed). Those with YOPD are frequently misdiagnosed as they may have different symptoms from those diagnosed later in life. Approach to symptom management may also differ due to long-term use of medications.
Challenges and Treatment of Young-Onset Parkinson's Disease
By the Michael J. Fox Foundation, June 15, 2017
In this one-hour webinar, patient and clinician panelists discuss the unique challenges that face young onset around work, family and different approaches to treatment. [Registration is required, but is free.]
Dementia and Young Onset Parkinson's
By the Davis Phinney Foundation, April 15, 2021
In this 1-hour webinar movement disorders specialist, Rodolfo Savica, MD, explains that YOPD is not the same disorder as older-onset PD. Generally speaking, people with YOPD have the same life expectancy and develop the same types of dementia at the same ages as the general population. He offered tips for coping with YOPD, like taking higher doses of dopamine medications during vigorous exercise or stressful times of day.
Webinar Notes on the Stanford PD Community Blog
Not What I Planned For Me or My Family
By the Parkinson's Foundation, September 15, 2020
This one-hour webinar describes benefits of interdisciplinary care early in diagnosis of Young Onset Parkinson's Disease (YOPD), identifies three proactive strategies for living well with Parkinson’s at a young age, and identifies at least two steps for planning ahead for your family.
Parenting and Parkinson's: Raising Children While Living with Parkinson's
By the Parkinson's Foundation, Substantial Matters, December 4, 2018
In this 17-minute podcast, social worker Elaine Book shares how she helps families cope with PD by discussing some of the new challenges and demands, what changes may occur in the family, and those things that remain the same.
YOPD: Balancing Life, Family, and Work
By Parkinson Society BC, July 13, 2021
Clinical Social Worker Elaine Book talks for about 50-minutes about the challenges and possible solutions that will create more balance in your daily experience while managing your health, work demands, and life's responsibilities.
YOPD Council Webinar Series
By the Davis Phinney Foundation
Offered the third Thursday of every month from 12p-1p PT, this series of moderated panel discussions with members of the YOPD Council focuses on topics related to issues unique to people living with YOPD. The panel shares experiences and resources, and answers questions from attendees. Recent topics include Sex, Love, and Dating & PD, Work, Money, Meaning & PD, Disability, Insurance & PD, and more.
Young Onset Parkinson's: A Conversation of Our Unique Needs
By Parkinson Canada, May 26, 2020
In this one-hour video, a panel of people with Young Onset Parkinson's Disease (YOPD) discuss the challenges faced by those with YOPD. The panel features Larry Gifford, famous for his podcast "When Life Gives You Parkinson's," Dr. Soania Mathur, a member of Parkinson Canada's Medical Advosory Council, Tim Hague, who won the first Amazing Race in Canada after being diagnosed, and Omotola Thomas, founder of ParkinStand.
Webinar notes on the Stanford PD Community Blog
YOPD Women Webinar Series
By the Davis Phinney Foundation
Offered the first Wednesday of every month from 11am-12:15pm PT, this series of talks with doctors, specialists, and YOPD Women Council leaders focuses on the different challenges YOPD women face related to contraception, pregnancy, menstruation, menopause, hormones, body image, aging, and more.
I’m 35, with two young children – and Parkinson’s
By Lucy Wallis. Published by BBC News, April 11, 2019
At 29, Ellie was diagnosed with Parkinson's disease. Despite how people sometimes react, and having to accept compromises in caring for her children, she decided it wasn't going to stop her living her life the way she wanted to. This 5-minute read includes Ellie's story and a link to her blog about life as a young mom with Parkinson's disease, PD Mom.
Kathleen Kiddo, Parkinson's Advocate
By Heather Kennedy, 2017-present
Heather Kennedy (aka Kathleen Kiddo) is a motivational speaker, writer, blogger, visual artist, and mother of two. Diagnosed with Parkinson’s disease in 2012, after many years of misdiagnosis, she works to raise awareness about the disease, and especially the challenges that living with Parkinson’s presents. This website features her periodic blog posts and other writings and a link to her YouTube videos.
Tim Brandt
By Eric Beam, MD. Published by History of Present Illness
After receiving a diagnosis in his early 40s that rendered him disabled far sooner than he'd hoped, Tim rediscovered his love of art and built a business around it. This 8-minute read includes Tim's story and a link to his business website, Shaking Arts.
Last updated July 2021 by Stanford's Parkinson's Community Outreach.
