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Parkinson’s Resources: Support for Living With Parkinson’s
Getting diagnosed with Parkinson’s disease might feel like your life has suddenly taken an unexpected turn toward unfamiliar treatments, lifestyle changes and a whole new way of managing your health. It’s so important to find support, whether that’s through your loved ones, other people with Parkinson’s or Parkinson’s experts who can help guide you. To start, check out the following groups and organizations. You can also share these with your friends and family so they can better understand what you’re going through.
Join The Mighty’s Parkinson’s Community
On The Mighty, you’ll find insight and support about what to expect when living with Parkinson’s disease from others who are going through it, as well as people coping with other chronic illnesses. You can join The Mighty by visiting the website or iPhone or Android app. Once you’re a Mighty member, you can ask and answer questions to others in the community by posting a Thought or Question.
The Mighty’s Parkinson’s disease page is a hub for our Parkinson’s community. Find articles written by people with Parkinson’s, news about the latest scientific developments and notable people with Parkinson’s, and helpful advice about diagnosis and daily challenges. You can also join conversations like this one, or start your own:
Follow The Mighty’s Parkinson’s disease page on Facebook to stay up-to-date on all the latest stories and videos about Parkinson’s as they’re published. We also occasionally ask our Facebook community questions about their PD experience and include the responses in our articles, so follow the page if you want to participate.
"If I were able to go back in time… this is what I would say."
Related: What Is Parkinson's Disease?
National Parkinson’s Organizations
There are many nonprofit organizations dedicated to PD research, fundraising, support and resources. Here are a few of the largest ones. Also, remember there may be additional organizations in your local area, so do some research to find any others in your hometown to see what other support is available for you.
The National Parkinson Foundation and the Parkinson’s Disease Foundation, both founded in 1957, merged to form the Parkinson’s Foundation (PF). PF funds research, offers up-to-date information on its website and leads community events including the Moving Day Walk. Plus, if you need help figuring out where to go for treatment, PF has designated 45 PD treatment centers around the world as Centers of Excellence.
Actor Michael J. Fox became one of the most famous people with PD after he revealed his diagnosis in 1998. He created his namesake foundation in 2000. Since then, the organization has granted over $800 million to fund research projects to find a cure and better treatments for Parkinson’s. They also have a searchable list of Parkinson’s specialists in every state.
Davis Phinney Foundation for Parkinson’s (DPFP) sets its focus on living well with PD today, rather than putting its resources toward a cure like many other organizations. DPFP’s Victory Summit symposia series brings local communities together for a day of learning about the latest information and practical tools about PD. The events are free and located around the U.S. You can also find videos, podcasts, webinars and printable guides on DPFP’s website.
The Parkinson Alliance is the umbrella organization for the Parkinson’s Unity Walk, an annual fundraising event, and Team Parkinson, which hosts other fundraising events around the U.S. The Alliance also funds grants to researchers and offers patient surveys to gain a better understanding of Parkinson’s.
International Parkinson’s Organizations
The European Parkinson’s Disease Foundation is the only European Parkinson’s umbrella organization. Its online library is the largest in Europe for PD research and information, and the organization represents national Parkinson’s associations across Europe in advocating for policy change.
If you’re in the U.K., this organization offers support and information tailored for you. Parkinson’s UK offers a confidential helpline, local support groups, research funding and information about Parkinson’s disease on its website. The organization also offers a helpline to connect you with additional resources.
It’s certainly not a quiet time for Parkinson’s research. There are new studies happening at research institutions around the world, studying everything from biomarkers that could allow for a quicker diagnosis to possible new treatments, the effectiveness of non-PD medications on Parkinson’s disease and discovering a cure. Of course, every research study and clinical trial needs volunteers with PD. If you are interested in learning more about joining a study or trial, talk with your doctor about which opportunities might be right for you. You can also go online to find out about new studies and trials. The following two websites are great places to start.
ClinicalTrials.gov is a resource of the U.S. National Library of Medicine and features a search tool that allows you to find Parkinson’s studies in your country that are currently or soon-to-be recruiting participants. Use the search tools to enter Parkinson’s as well as your location, and look for studies that are labeled as “recruiting.”
The Michael J. Fox Foundation created the Fox Trial Finder, a tool for people with Parkinson’s to find studies and trials that need volunteers. Some of the studies are sourced from ClinicalTrials.gov, but you may find it easier to browse the Fox Trial Finder since it is specific to PD.
If Your Loved One Has Parkinson’s Disease
Finding out a loved one has Parkinson’s can be a confusing, frightening experience. You likely want to help, but may not even be sure exactly what your loved one is going through or what you can do to help. To start, check out these stories written by people with Parkinson’s. They can give you insight into the physical and emotional impact of PD and help you understand where your loved one could use some support.
- 12 Things You Don’t Understand About Parkinson’s Unless You Have It
- What It Feels Like to Be ‘On’ With Parkinson’s Disease
- Is There Anything Good About Living With Parkinson’s? These Women Say Yes!
- When My Mom Agreed to Let Me Document Her Life as an Artist With Parkinson’s
- 7 Early Symptoms People With Parkinson’s Disease Noticed First
- The ‘Lord of the Rings’ Quote That Reveals the Choice People With Parkinson’s Have to Make
- 7 Things Healthy ‘Parkies’ Do
- Choosing Parenthood With Juvenile Parkinson’s Disease
- How I Fight the Apathy That Can Come With Parkinson’s Disease