After the diagnosis

You are in charge of your own health. But if, and when, you need advice about Parkinson’s, there are many resources available in your community and people willing to help. Your local Parkinson organization is an integral part of your support.

Educate yourself. Learn all you can about Parkinson’s. Seek information from reputable sources. Start with Parkinson Society Canada for up-to-date, reliable information and resources and links to the Parkinson Society in your community. Call our national toll-free Information and Referral Centre at 1-800-565-3000. Visit our web site at www.parkinson.ca or send and e-mail to general.info@parkinson.ca.

Share the diagnosis. Discuss your diagnosis and share information about Parkinson’s with your family and, as time passes, with friends you can trust. Proceed at your own pace. Recognize that you may experience a variety of emotions: anger, denial, frustration, fear, confusion, disbelief and sadness. Do not isolate yourself. Share your feelings.

Consider joining a support group. Support groups offer a safe environment where you can gain emotional support, learn practical coping skills and strategies and find out about resources from people who understand. Look for a support group that suits your style and addresses your needs. Through our 12 regional partners, Parkinson Society Canada has over 235 chapters and support groups across Canada. This includes groups for newly-diagnosed, Young-Onset Parkinson’s and care partners, traditional in-person support, telephone support and online.

Consider Joining a Support Group
Consider joining a support group

For example, Parkinson Society Central & Northern Ontario has a Young-Onset Parkinson’s chat support group that meets at 1:30 p.m. on the fourth Monday of each month. The chat room provides anonymity – no voice, no face, no picture – which is often a major concern for younger people with Parkinson’s, says group facilitator Jon Collins. “It allows people to come to terms with having Parkinson’s and get the support they need even if they are uncomfortable.” Since the group’s first meeting in October 2009, discussion has typically centred on work and family issues.

Seek one-on-one support if you are not interested in participating in a group. Your local Parkinson Society may be able to assist you in finding peer support or counselling resources in your community.

For more strategies for dealing with the diagnosis, see Taking Control: 10 steps to help you cope with a recent diagnosis of Parkinson’s (PDF).

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