A Parkinson’s diagnosis at any age has unique challenges
Resources for individuals and physicians offer advice from those who’ve been there
Learning you’ve got Parkinson’s , 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. Two educational resources are available – 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 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.”
These latest resources help to fill that gap. Written by Michael Ravenek, PhD and associate 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 personal 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 other issues.
With funding from the Parkinson’s National Research Program 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 healthcare professionals to inform the second editions.
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.