{"id":675,"date":"2015-08-19T02:04:55","date_gmt":"2015-08-19T06:04:55","guid":{"rendered":"http:\/\/parkinson.netfirms.com\/epp_e\/?p=675"},"modified":"2015-08-19T02:04:55","modified_gmt":"2015-08-19T06:04:55","slug":"new-resources-offer-advice-from-those-in-the-know","status":"publish","type":"post","link":"https:\/\/archiveparkinson.thedev.ca\/fr\/new-resources-offer-advice-from-those-in-the-know\/","title":{"rendered":"New resources offer advice from those in the know"},"content":{"rendered":"

\"young_onset_en\"<\/p>\n

Learning you\u2019ve got a chronic neurodegenerative disease like Parkinson\u2019s 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 \u2013 physically, mentally, financially, socially and emotionally. That\u2019s why Parkinson Society Canada has funded two educational resources \u2013 one for individuals and one for physicians \u2013 to help address the unique needs of people who are newly diagnosed with young-onset Parkinson\u2019s disease<\/a> (YOPD). The new resources were developed by Michael Ravenek, PhD, with funding from PSC\u2019s National Research Program.<\/p>\n

Although the average age to be diagnosed with Parkinson\u2019s is around 60, young-onset Parkinson\u2019s (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\u2019s disease are universal, regardless of age, there are a number of additional issues specific to younger people.<\/p>\n

The first reaction is often the shock of a diagnosis of YOPD, even though individuals may have been experiencing symptoms to varying degrees. \u201cI think when you get the diagnosis, your life sort of stops,\u201d recalls one of the contributors to the booklet with advice for other patients. \u201cYou 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\u2019re supposed to do and then deal with this at the same time. And there\u2019s no instruction book on how to do that.\u201d<\/p>\n

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\u2019s disease: Advice for those newly diagnosed from individuals currently living with YOPD (2nd ed.)<\/a> and Young-onset Parkinson\u2019s disease: Advice for physicians from individuals living with YOPD (2nd ed.)<\/a> 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.<\/p>\n

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.<\/p>\n

\u201cThere 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,\u00a0\u00bb says Grace Ferrari<\/a>, National Manager, Professional & Public Education, Parkinson Society Canada. \u201cWe are very pleased to provide these additional resources in both digital and printed formats, in English and French, to support people with Parkinson\u2019s, their families and their physicians.\u201d<\/p>\n

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 \u201clog\u201d for daily medication, meals and exercise, along with a place to record \u201cQuestions for my next doctor\u2019s appointment,\u201d to help make the most of self-care efforts and doctor\/patient interactions, respectively.<\/p>\n

To find out more about living with Parkinson\u2019s disease and the programs and services available near you, call 1-800-565-3000, or visit archiveparkinson.thedev.ca<\/a>. Use the interactive map<\/a> to find support groups, access to local programs and support groups for those newly diagnosed, people with YOPD, exercise and more. Other Parkinson\u2019s news and resources are regularly featured on our Twitter page, @ParkinsonCanada and Parkinson Society Canada on Facebook.<\/p>\n","protected":false},"excerpt":{"rendered":"

Learning you\u2019ve got a chronic neurodegenerative disease like Parkinson\u2019s can be a shocking and very emotional experience, especially when you … En savoir plus<\/a><\/p>\n","protected":false},"author":37,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":[],"categories":[237],"tags":[],"yoast_head":"\nNew resources offer advice from those in the know - Parkinson Canada<\/title>\n<meta name=\"robots\" content=\"noindex, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"New resources offer advice from those in the know - Parkinson Canada\" \/>\n<meta property=\"og:description\" content=\"Learning you\u2019ve got a chronic neurodegenerative disease like Parkinson\u2019s can be a shocking and very emotional experience, especially when you ... 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