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Resources for Parkinson s Disease

By Erin Archer Kelser, RN and Christina VogtMedically Reviewed by Jason Paul Chua, MD, PhDReviewed: September 15, 2021Medically ReviewedParkinson's disease organizations offer information and support to people with the condition and those who care for them.iStock If you or a loved one has been diagnosed with Parkinson's disease, you may be feeling overwhelmed and unsure of how to move forward. Here are some resources that offer information and support for people with Parkinson's and those who care for them.

Organizations That Educate and Offer Help

Parkinson's Foundation Formed after the National Parkinson Foundation and the Parkinson’s Disease Foundation merged in August 2016, the Parkinson’s Foundation provides support to people with Parkinson’s and their caregivers, and funds Parkinson’s-related care and research. If you need more information about Parkinson’s, help with symptoms, or a referral to a health professional, you can reach its helpline at 800-4PD-INFO (800-473-4636). Parkinson’s Resource Organization Aiming to ensure no one is isolated because of Parkinson’s disease, the Parkinson’s Resource Organization connects patients and caregivers with expert resources through its Wellness Village resource directory. You can sign up for monthly support groups addressing various aspects of life with Parkinson’s, as well as a monthly newsletter. The organization also has a YouTube channel with videos on topics like how you can get moving if you have Parkinson’s. You can reach the Parkinson’s Resource Organization by calling its toll-free number: 877-775-4111. The Michael J. Fox Foundation for Parkinson's Research This foundation — first launched in 2000 by actor Michael J. Fox after he was diagnosed with young-onset Parkinson’s disease in 1991 — funds research to help accelerate the development of improved treatments for people living with this condition. The foundation offers Parkinson’s 360, a guide for navigating life with Parkinson’s, as well as monthly webinars on topics like deep brain stimulation and how you can build connections within the Parkinson’s community. Parkinson Voice Project With a mission to help preserve communication and speech among people with Parkinson’s disease, this nonprofit organization offers a 12-week speech therapy program called SPEAK OUT! The Parkinson’s Voice Project has its own clinic in Richardson, Texas, but if you live elsewhere, check out the provider search tool to find a SPEAK OUT!–affiliated speech-language pathologist in your area.

News and Updates in Parkinson s Research

Parkinson’s Today Blog Featured on the Parkinson’s Foundation website, this blog covers topics ranging from the latest Parkinson’s research to day-to-day life with this condition. Check out its blog posts on exploring Parkinson’s-related grief and common questions about Parkinson’s, answered by genetic counselors. Parkinson’s Recovery Blog Authored by Robert Rodgers, PhD, whose mother was diagnosed with Parkinson’s and eventually died, in 1998, the Parkinson’s Recovery Blog offers support and resources to people with Parkinson’s disease. Check out Rodgers’s posts on symptom-relieving therapies for Parkinson’s, shutting down anxiety, and more.

Read Patient Blogs Voicing the Real Experience of Living With Parkinson s Disease

The Perky Parkie Written by Allison Smith, who was diagnosed with Parkinson’s disease at age 32 after surviving colon cancer at age 24, The Perky Parkie covers all things Parkinson’s. Check out Smith's posts on Parkinson’s and fatigue and her "anti-bucket list."

Learn More About Wellness and Exercise for People With Parkinson s Disease

Davis Phinney Foundation for Parkinson's, Every Victory Counts This manual for living well with Parkinson’s Disease contains information from more than 60 physicians, scientists, and therapists, and guides on topics like nutrition, exercise, emotional health, and medication as they relate to Parkinson’s disease. Rock Steady Boxing This first-of-its-kind nonprofit organization — geared toward teaching boxing skills to people with Parkinson’s disease — enables participants to work on conditioning skills like speed, agility, muscular endurance, and hand-eye coordination, among other skills. Find a class in your area. Dance for PD Founded in 2001, this award-winning program provides specialized dance classes to help address balance, motor skills, cognition, depression, and physical confidence among people with Parkinson’s disease. You can sign up to attend live classes or check out its archive of prerecorded or previously streamed classes. All live classes are currently offered online due to the COVID-19 pandemic. Learn more about its class offerings.

Finding a Neurologist Who Can Help You Manage Parkinson s Disease

International Parkinson and Movement Disorder Society, "Find a Specialist" Directory This search tool allows you to identify specialists in your area who have expertise in areas like neurology, psychology, genetic counseling, nutrition, and more.

Find Clinical Trials That Address Parkinson s Disease

The Michael J. Fox Foundation for Parkinson's Research, Fox Trial Finder If you’re interested in participating in a clinical trial, the Fox Trial Finder can help connect you with researchers studying Parkinson’s disease, multiple system atrophy, Lewy body dementia, and more. ClinicalTrials.gov Here, the U.S. National Institutes of Health lists publicly and privately funded clinical trials being performed around the world. The ClinicalTrials.gov search tool allows you to search for trials by condition, location, and more. NEWSLETTERS

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