Families and PD
PD affects the whole family. This is true whether you are diagnosed with Parkinson's disease (PD) over age 65 or under age 50 (and have school-age children). These resources will help you navigate parenting with PD, as well as changing family roles as Parkinson's progresses.
Published by American Parkinson Disease Association, 2007
Four-page educational supplement (PDF), written by a neurologist, addresses how family relationships are stressed when one member has PD. Adjustment to spousal roles may occur. Author notes outside resources available including extended family, friends, church or synagogue, the physician, support groups, and national organizations.
Published by Parkinson's Disease Foundation (Now the Parkinson's Foundation), 2007
One-page fact sheet (PDF) offers six tips for talking to your kids about PD. Tip #1 is: Explain your diagnosis in simple terms, including the symptoms and what behaviors to expect.
Published by National Parkinson Foundation (Now the Parkinson's Foundation)
This 45-page booklet (PDF) has chapters on a basic understanding of PD, medical and surgical treatments, staying well with PD, taking charge of your health care, accepting and adapting to PD, and special concerns of those with Young Onset Parkinson Disease.
Published by Parkinson's Disease Foundation (Now the Parkinson's Foundation), 2008
In reflecting upon caring for her husband with PD, the author offers twelve lessons for the person with PD and the primary care partner. Lesson #6: Educate yourself about PD in stages (PDF).
Published by the Parkinson’s Foundation
Nine tips for when and how to talk with your children or grandchildren about a Parkinson’s diagnosis.
By the Davis Phinney Foundation, October 14, 2018
In this 21-minute podcast, Kelsey Phinney talks to Jacie (17 when her dad was diagnosed) and Matthew (six when his mom was diagnosed) about their experiences. Jacie and Matthew share common experiences children of parents with Parkinson's face, the importance of keeping a positive attitude about Parkinson's, the role children can play in encouraging their parents, the good and bad parts about being a parent's emotional support system, and how living with a parent with Parkinson's can influence everything from relationships to career choices and the values that matter most.
By the Davis Phinney Foundation, October 31, 2018
In this 27-minute podcast, Kelsey Phinney inverviews two brothers whose father was diagnosed with Parkinson's well into their adulthood. They talk about what it was like when their dad was diagnosed and what it's like at the time of this interview, 10 years later. They discuss what they did to understand PD so they could better help their dad. The brothers also address how they navigated changing their role from being cared for to being the ones caring for their parents. They offer advice for others about bringing your family closer through PD.
Last updated August 2020 by Stanford's Parkinson's Community Outreach.