A Parkinson’s diagnosis at any age has unique challenges
Resources for individuals and physicians offer advice from those who've been there
TORONTO, ON, April 29, 2015 – Learning you've got Parkinson's disease, a chronic neurodegenerative condition, when you're not yet 30 years old, can be a shocking and very emotional experience. Even at 50, it can wreak havoc on your future plans – physically, mentally, financially, socially and emotionally. Parkinson Society Canada has funded two educational resources – one for patients and one for physicians – to help address the unique needs of individuals who are newly diagnosed with Young-onset Parkinson's disease (YOPD), developed by a National Research Program grant recipient.
Although the average age to develop Parkinson's is around 60, young-onset Parkinson's (before age 40) occurs in five to 10 per cent of people diagnosed. Twenty percent of those newly diagnosed are under the age of 50. Some challenges in living with Parkinson's disease are universal, regardless of age, and there are a number of additional issues specific to younger people.
The first is often the shock of a diagnosis of YOPD. "I think when you get the diagnosis, your life sort of stops," recalls one of the contributors to the booklet on advice for other patients. "You have to deal with your kids, you have to deal with your job, you have to deal with getting up every day and all the things you're supposed to do and then deal with this at the same time. And there's no instruction book on how to do that."
With funding from Parkinson Society Canada and the Canadian Institutes of Health Research, Ravenek interviewed 39 people living with YOPD to write the initial editions of the two booklets. Feedback was later gathered from across the country from others with YOPD and their families, as well as health professionals to inform the second editions.
Helping those with young-onset Parkinson's disease
"There is a big gap in information available to those who face everyday life challenges combined with the unexpected and unique aspects of living with YOPD.' says Grace Ferrari, National Manager, Professional & Public Education, Parkinson Society Canada. "We are very pleased to provide these additional resources in both digital and printed formats, in English and French, to support families, people with Parkinson's and their physicians."
The physician booklet highlights specific areas of the physician-patient interaction that all physicians should consider in their encounters with individuals with YOPD. Both booklets contain a sample "log" for daily medication, meals and exercise, along with a place to record "Questions for my next doctor's appointment," to help make the most of self-care efforts and doctor/patient interactions, respectively.
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