
Learn More About Parkinsonâs Disease:Â Overview |Â Symptoms | Diagnosis | Treatment | Resources
The Mightyâs Parkinsonâs Community |Â National Parkinsonâs Organizations | International Parkinsonâs Organizations |Â Research Opportunities |Â If Your Loved One Has Parkinsonâs Disease
Parkinsonâs Resources:Â Support for Living With Parkinsonâs
Getting diagnosed with Parkinsonâs 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. Itâs so important to find support, whether thatâs through your loved ones, other people with Parkinsonâs or Parkinsonâs 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 youâre going through.
Join The Mightyâs Parkinsonâs Community
On The Mighty, youâll find insight and support about what to expect when living with Parkinsonâs 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 youâre a Mighty member, you can ask and answer questions to others in the community by posting a Thought or Question.
Parkinsonâs Disease on The Mighty
The Mightyâs Parkinsonâs disease page is a hub for our Parkinsonâs community. Find articles written by people with Parkinsonâs, news about the latest scientific developments and notable people with Parkinsonâs, and helpful advice about diagnosis and daily challenges. You can also join conversations like this one, or start your own:
Whatâs your best advice for someone just diagnosed with #ParkinsonsDisease ?
Mighty Parkinsonâs Facebook page
Follow The Mightyâs Parkinsonâs disease page on Facebook to stay up-to-date on all the latest stories and videos about Parkinsonâs as theyâre 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."
Posted by Parkinsonâs Disease on The Mighty on Friday, October 4, 2019
National Parkinsonâs 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.
Parkinsonâs Foundation
The National Parkinson Foundation and the Parkinsonâs Disease Foundation, both founded in 1957, merged to form the Parkinsonâs 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.
Michael J. Fox Foundation
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 Parkinsonâs. They also have a searchable list of Parkinsonâs specialists in every state.
Davis Phinney Foundation for Parkinsonâs
Davis Phinney Foundation for Parkinsonâs (DPFP) sets its focus on living well with PD today, rather than putting its resources toward a cure like many other organizations. DPFPâs 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 DPFPâs website.
Parkinson Alliance
The Parkinson Alliance is the umbrella organization for the Parkinsonâs 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 Parkinsonâs.Â
International Parkinsonâs Organizations
European Parkinsonâs Disease Foundation
The European Parkinsonâs Disease Foundation is the only European Parkinsonâs umbrella organization. Its online library is the largest in Europe for PD research and information, and the organization represents national Parkinsonâs associations across Europe in advocating for policy change.
Parkinsonâs UK
If youâre in the U.K., this organization offers support and information tailored for you. Parkinsonâs UK offers a confidential helpline, local support groups, research funding and information about Parkinsonâs disease on its website. The organization also offers a helpline to connect you with additional resources.Â
Research Opportunities
Itâs certainly not a quiet time for Parkinsonâs 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 Parkinsonâs 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
ClinicalTrials.gov is a resource of the U.S. National Library of Medicine and features a search tool that allows you to find Parkinsonâs studies in your country that are currently or soon-to-be recruiting participants. Use the search tools to enter Parkinsonâs as well as your location, and look for studies that are labeled as ârecruiting.â   Â
Fox Trial Finder
The Michael J. Fox Foundation created the Fox Trial Finder, a tool for people with Parkinsonâs 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.Â
If Your Loved One Has Parkinsonâs Disease
Finding out a loved one has Parkinsonâs 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 Parkinsonâs. 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 Donât Understand About Parkinsonâs Unless You Have It
- What It Feels Like to Be âOnâ With Parkinsonâs Disease
- Is There Anything Good About Living With Parkinsonâs? These Women Say Yes!
- When My Mom Agreed to Let Me Document Her Life as an Artist With Parkinsonâs
- 7 Early Symptoms People With Parkinsonâs Disease Noticed First
- The âLord of the Ringsâ Quote That Reveals the Choice People With Parkinsonâs Have to Make
- 7 Things Healthy âParkiesâ Do
- Choosing Parenthood With Juvenile Parkinsonâs Disease
- How I Fight the Apathy That Can Come With Parkinsonâs Disease
Learn More About Parkinsonâs Disease:Â Overview |Â Symptoms | Diagnosis | Treatment | Resources
source https://www.programage.com/news/Parkinson_s_Disease_Support_Resources_1596042015446551.html
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