Dealing with a diagnosis: a guide to Parkinson’s

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Author: Saskia MairPublished: 28 May 2020

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The Michael J. Fox Foundation has released a free guide, dedicated to helping those who have recently been diagnosed with Parkinson’s. ‘If I Knew Then What I Know Now’ provides first-hand perspectives, practical tips and answers common questions about life with the condition


A new guide from The Michael J. Fox Foundation (MJFF) offers support to people recently diagnosed with Parkinson’s – and it’s written by others who’ve experienced life with the condition.

‘If I Knew Then What I Know Now: The Michael J. Fox Foundation Patient Council’s Guide for People Newly Diagnosed with Parkinson’s’ covers subjects from medication to doctor’s appointments. People with the condition draw on their own experiences to answer a range of frequently asked questions – such as “should I get a second opinion?” and “whose advice should I listen to?”.

The guide aims to provide “comforting insights, wisdom and practical strategies” for those dealing with diagnosis, as contributors reflect on Parkinson’s, through essays and discussions. The free downloadable booklet also features short summaries of key topics and links to relevant resources.

Parkinson's diagnosis guide

The 32-page guide is authored by a team of five members of the MJFF’s Patient Council – an advisory group formed in 2009 to provide advice and offer the perspective of the Parkinson’s community.

Rachel Dolhun, MD, vice president, medical communications at MJFF, said: “One of the best first things you can do is connect with others who are living with the disease. They share your feelings and concerns, and they’ve found answers to many of the same questions you’re asking for the first time.”

The Foundation also hosted an hour-long webinar on the subject, “I’ve Got Parkinson’s… Now What? Navigating a New Parkinson’s Diagnosis”, moderated by physician and guidebook contributor, Soania Mathur, MD.

“A Parkinson’s diagnosis brings many questions and concerns and a series of inevitable hurdles,” Mathur says. “We may not have a choice in our diagnosis, but how we face those challenges is ours to determine.”

Read more about ‘If I Knew Then What I Know Now: The Michael J. Fox Foundation Patient Council’s Guide for People Newly Diagnosed with Parkinson’s’.

Download the guide for free here.

For more information about Parkinson’s diagnosis, please visit the EPDA website.


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