National Parkinson Foundation Helps the Recently Diagnosed Navigate a Parkinson’s Diagnosis
Release date: 9/19/2013
—First Connect My Page Provides Tailored Information Written by People with Parkinson’s—
MIAMI—September 19, 2013—The National Parkinson Foundation (NPF) recently launched First Connect My Page for the newly diagnosed. This tool gives people with Parkinson’s the information they need to successfully navigate the unfamiliar and difficult territory of a Parkinson’s diagnosis.
“People often feel unmoored at sea when they receive a Parkinson’s diagnosis. This tool will help them navigate this uncharted territory and is based on the experiences of people who have been there before,” said Joyce Oberdorf, NPF’s President and CEO. Most physicians, especially if they are not trained in movement disorders, don’t know how to deliver a Parkinson’s diagnosis and often leave their patients stunned and adrift.
All of the articles are written by people who know the landscape firsthand; Jackie Hunt Christensen and Karl Robb (co-authors) have both been diagnosed with young-onset Parkinson’s disease. Both writers have tackled the challenges of living with Parkinson’s for many years and offer practical advice based upon personal experience. The aim is to create a road map to help the recently diagnosed minimize the life-changing effects of Parkinson’s on their own lives.
“Hearing from others with Parkinson’s can make it much easier for everyone involved to come to terms with the disease,” said Jackie Hunt Christensen, author of The First Year—Parkinson’s Disease: An Essential Guide for the Newly Diagnosed. “If I can help even one other person with Parkinson’s avoid unnecessary bad experiences, I will feel that my own journey with Parkinson’s has been worthwhile.”
NPF’s First Connect My Page allows those facing a Parkinson’s diagnosis to join an online community where they can learn how to overcome anxiety, deal with intimacy issues, how to travel with Parkinson’s, and manage medications. Subscribers can access the following:
- Series of educational articles on specific aspects of living with the disease early on
- Video segments
- “Newly Diagnosed” Online Forum
- Manuals and Checklists for further reference
To subscribe, call NPF’s Helpline, 1-800-4PD-INFO (473-4636), or visit www.parkinson.org/mypage. After providing a valid e-mail address, subscribers to First Connect My Page get tailored content delivered directly to their e-mail inbox.
First Connect My Page is made possible by the generous support of Medtronic Philanthropy and thousands of people with Parkinson’s and their families.
About Parkinson's Disease
Affecting an estimated one million Americans and four to six million worldwide, Parkinson's disease is the second most common neurodegenerative disease after Alzheimer's and is the 14th leading cause of death in the United States. It is associated with a progressive loss of motor control (e.g., shaking or tremor at rest and lack of facial expression) as well as non-motor symptoms (e.g., depression and anxiety). There is no cure for Parkinson’s, and 60,000 new cases are diagnosed each year in the United States alone.
About the National Parkinson Foundation (NPF)
Founded in 1957, the National Parkinson Foundation's mission is to improve the quality of care for people with Parkinson's disease through research, education and outreach. NPF has funded more than $172 million in care, research and support services. For more information about NPF, visit www.parkinson.org, or call the NPF Helpline at 1-800-4PD-INFO (473-4636).
About Medtronic Philanthropy
Medtronic Philanthropy focuses on expanding access to quality chronic disease care among underserved populations worldwide, in addition to supporting health initiatives in communities where Medtronic employees live and give.