The Michael J. Fox Foundation for Parkinson’s Research (MJFF) launches an educational resource, “If I Knew Then What I Know Now: The Michael J. Fox Foundation Patient Council’s Guide for People Newly Diagnosed with Parkinson’s.”
Authored by people living with Parkinson’s, the new guide provides patients and families with insights, wisdom and practical strategies to answer common questions about navigating life with PD, a media release from MJFF explains.
“If I Knew Then What I Know Now” was created by experts on Parkinson’s — those living with the disease. The patient-authored guide includes reflections from five members of MJFF’s Patient Council, an advisory group established in 2009 as a formal channel for input from the PD community. In addition to contributing writers from the Patient Council, guide topics were sourced by audience questions from the Foundation’s “Parkinson’s IQ + You” national event series and the content received review from the entire Patient Council and a diverse sampling of community members living with PD.
“A Parkinson’s diagnosis brings many questions and concerns and a series of inevitable hurdles. We may not have a choice in our diagnosis, but how we face those challenges is ours to determine,” says Soania Mathur, MD, guide contributing writer and co-chair of MJFF’s Patient Council, in the release. “My advice to those newly diagnosed is to become an active participant in your disease management — educate yourself, adopt healthy lifestyle choices and optimize your quality of life. And a good place to start is with this guide.”
Woven throughout the patient reflections, the resource also offers tips on managing Parkinson’s care written by MJFF Vice President of Medical Communications and movement disorder specialist Rachel Dolhun, MD. In this informative 32-page guide, patients and families can explore:
- Comforting and knowledgeable first-hand insights on PD;
- Perspectives on common questions around diagnosis and what to expect with the disease;
- Practical tips and strategies to navigate life with Parkinson’s; and
- Information on a variety of resources to learn more about life with PD.
“Many people can recall the exact moment they heard the words ‘you have Parkinson’s,'” Dolhun shares. “The Michael J. Fox Foundation has helped countless people process their diagnosis to move through their earliest days with the disease. This guide is about empowering those in the community — whether you’ve lived with Parkinson’s for days or decades — to connect with others who are on a similar journey and who have found answers to the questions you might be asking for the first time.”
[Source(s): The Michael J. Fox Foundation for Parkinson’s Research, PR Newswire]