Useful PD Links
Organizations*
Parkinson’s Foundation makes life better for people with Parkinson’s disease by improving care and advancing research toward a cure. In everything we do, we build on the energy, experience and passion of our global Parkinson’s community: parkinson.org
Michael J. Fox Foundation exists for one reason: to accelerate the next generation of PD treatments. In practice, that means identifying and funding projects most vital to patients; spearheading solutions around seemingly intractable field-wide challenges; coordinating and streamlining the efforts of multiple, often disparate, teams; and doing whatever it takes to drive faster knowledge turns for the benefit of every life touched by PD. michaeljfox.org
European Parkinson’s Disease Association is the only European umbrella organization created to ensure that people living with Parkinson’s and their families have access to the highest standards of treatment, support and care they need to live a full and comfortable life. epda.eu.com
American Parkinson Disease Association is the largest grassroots network dedicated to fighting PD and works tirelessly to help the approximately one million with PD in the United States live life to the fullest in the face of this chronic, neurological disorder. Founded in 1961, APDA has raised and invested more than $226 million to provide outstanding patient services and educational programs, elevate public awareness about the disease, and support research designed to unlock the mysteries of PD and ultimately put an end to this disease. apdaparkinson.org
International Parkinson’s and Movement Disorder Society is a professional society of clinicians, scientists, and other healthcare professionals who are interested in movement disorders, including Parkinson’s disease, related neurodegenerative and neurodevelopmental disorders, hyperkinetic movement disorders, and abnormalities in muscle tone and motor control. The assistance of our members, who work tirelessly to help further the Society’s mission, enables MDS to educate and inform others around the world about the latest news, research, and advances in movement disorders. movementdisorders.org
The Davis Phinney Foundation created in 2004 by Olympic medalist and retired professional cyclist, Davis Phinney, to help people with Parkinson’s live well today. As a national leader of quality of life research, the organization’s singular focus is to provide programs and resources that offer inspiration, information and tools that enable people living with Parkinson’s to take action that can immediately improve their quality of life. Through The Victory Summit® event series, Every Victory Counts® manual, Ambassador program and extensive online content, the organization impacts hundreds of thousands of individuals each year. www.davisphinneyfoundation.org.
Magazines*
Parkinson’s News Today is a digital platform intended to provide the Parkinson’s disease community with the most recent news and information on Parkinson’s, as well as first-hand community perspectives from our patient and caregiver columnists. All articles on Parkinson’s News Today are original content produced by in-house writers and editors. Occasionally, we seek the opinion of outside experts for interviews and Q&As. parkinsonsnewstoday.com
Journal of Parkinson’s Disease publishes original research in basic science, translational research and clinical medicine in Parkinson’s disease in cooperation with the Journal of Alzheimer’s Disease. It features a first class Editorial Board and provides rigorous peer review and rapid online publication. https://www.journalofparkinsonsdisease.com/
Parkinson’s Life is an online ‘lifestyle’ magazine for people affected by PD. We are a voice for the international Parkinson’s community, which means anyone with an interest in the disease including people with Parkinson’s and their families, carers and healthcare professionals. Parkinson’s Life aims to be a leading platform for the sharing of personal stories, expert opinions, resources, tools and information about good Parkinson’s practices from around the world. Parkinson’s Life is a European Parkinson’s Disease Association (EPDA) website. parkinsonslife.eu
The Parkinson is the only magazine from Parkinson UK. Packed with features to help you live well and manage your condition. Inside you’ll find real life stories and experiences from people living with or caring for someone with Parkinson’s, Q&As with experts, tips from people with Parkinson’s and the people who love and care for them. https://www.parkinsons.org.uk/information-and-support/parkinson-magazine
Inspiring Lectures, Podcasts & Books*
“When Life Gives You Parkinson’s” Podcast MJFF Patient Council member Larry Gifford, diagnosed with PD in 2017, hosts the inspiring, engaging and honest podcast “When Life Gives You Parkinson’s.” Through laughter and tears, Gifford and his family have opened their lives to the listeners and introduce us to how they and others in the Parkinson’s community are dealing with the symptoms and progression of the disease. https://curiouscast.ca/podcast/160/when-life-gives-you-parkinsons/
You, Me, and PD (Parkinson’s Disease) Podcast a unique conversation between Jeremy Likness who was diagnosed with young-onset Parkinson’s Disease in early 2020, and his caregiver and wife, Doreen. They host candid conversations about living with Parkinson’s Disease, share stories and tips, and discuss the physical and emotional impact of the diagnosis. https://youmeandpd.org/
No Time Like the Future: An Optimist Considers Mortality Michael J. Fox In his fourth memoir published in 2020, Michael uses his trademark sense of humor to share personal stories and observations about illness and health, aging, the strength of family and friends, and how our perceptions about time affect the way we approach mortality. https://static.macmillan.com/static/fib/no-time-like-the-future/
Goodbye Parkinson’s, Hello Life! Alex Kerten presents the Gyro-Kinetic method of exercise that combines dance therapy, behavior modification and martial arts to help people with Parkinson’s manage their symptoms and cope with the disease. https://divineartsmedia.com/collections/books/products/goodbye-parkinsons-hello-life-span-the-gyro-kinetic-method-for-eliminating-symptoms-and-reclaiming-your-good-health-span
The Wellness Principles: Cooking for a Healthy Life Gary Deng, MD, PhD An accessible guide with 100 delicious tried-and-tested recipes for healthy living — to eat well, live well, and stay well. Tapping this holistic approach, The Wellness Principles also touches on healthy living beyond the plate through physical exercise, stress management, better sleep, and complementary therapies. https://www.phaidon.com/store/food-cook/the-wellness-principles-9781838664756/
5 Outstanding TEDTalks for People with PD: parkinsonslife.eu/five-more-tedx-talks-for-people-with-parkinsons-disease/
Useful Apps for PD Patients
StrivePD is a HIPAA compliant, trusted iOS app and disease management tool for Parkinson’s care for both patients and clinical care teams. Paired with the Apple Watch and Deep Brain Stimulation (DBS) devices (if applicable), patients are able to track and share their summarized disease experience with care teams outside the clinic. https://www.strive.group/
Pzizz Up to 90% of people living with PD suffer from sleep problems, and Pzizz is an app designed to help users achieve higher quality sleep. It helps you quickly quiet your mind, fall asleep fast, stay asleep, and wake up refreshed by creating beautiful “dreamscapes”. https://pzizz.com/
Peak Brain Training uses a combination of neuroscience, technology and fun to get those little grey cells active and striding purposefully towards their full potential. https://www.peak.net/#download
Swallow Prompt gives a prompt to swallow saliva and can help patients who have difficulty swallowing due to the muscles in the jaw being less efficient. It can be set to vibrate or beep through a headset at set intervals. https://speechtools.co/swallow-prompt
Staybl browser app uses virtual counter-movements to compensate tremors in real time. Parkinson’s patients and all other people suffering from tremors can finally surf the internet comfortably and smoothly tremors. https://www.staybl.app/
*We welcome additional websites, organizations, magazines and app developers which provide useful information and tools for the management of Parkinson’s’ Disease