Learning you’ve got a chronic neurodegenerative disease like Parkinson’s can be a shocking and very emotional experience, especially when you are not yet 30 years old. Even at 40 or 50, it can wreak havoc on your future plans – physically, mentally, financially, socially and emotionally. That’s why Parkinson Society Canada has funded two educational resources – one for individuals and one for physicians – to help address the unique needs of people who are newly diagnosed with young-onset Parkinson’s disease (YOPD). The new resources were developed by Michael Ravenek, PhD, with funding from PSC’s National Research Program.
Although the average age to be diagnosed with Parkinson’s is around 60, young-onset Parkinson’s (before age 40) occurs in five to 10 per cent of people diagnosed. Twenty per cent of those newly diagnosed are under the age of 50. While some challenges living with Parkinson’s disease are universal, regardless of age, there are a number of additional issues specific to younger people.
The first reaction is often the shock of a diagnosis of YOPD, even though individuals may have been experiencing symptoms to varying degrees. “I think when you get the diagnosis, your life sort of stops,” recalls one of the contributors to the booklet with 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.”
These latest resources help to fill that gap. Written by Michael Ravenek, PhD, an assistant professor at Western University, the two booklets, Young-onset Parkinson’s disease: Advice for those newly diagnosed from individuals currently living with YOPD (2nd ed.) and Young-onset Parkinson’s disease: Advice for physicians from individuals living with YOPD (2nd ed.) provide advice on topics such as when to reveal your condition to your employer, planning finances for possible disability or early retirement, sharing your diagnosis with young children, teenagers and parents, and sexuality, among several others issues.
With funding from Parkinson Society Canada and the Canadian Institutes of Health Research, Ravenek interviewed 39 people living with YOPD for varying lengths of time drawing on their unique, personal experiences 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, and incorporated into the second editions.
“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 people with Parkinson’s, their families 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.
To find out more about living with Parkinson’s disease and the programs and services available near you, call 1-800-565-3000, or visit www.parkinson.ca. Use the interactive map to find support groups, access to local programs and support groups for those newly diagnosed, people with YOPD, exercise and more. Other Parkinson’s news and resources are regularly featured on our Twitter page, @ParkinsonCanada and Parkinson Society Canada on Facebook.