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How public are you about your life with PD?
A lot of advocacy and awareness initiatives rely on people with lived experience sharing their stories. That can be a pretty vulnerable experience for some. How comfortable are you with talking publicly about your life with Parkinson’s disease? Have you ever been asked to be a guest speaker at an event or have you used social media in any way to tell the world about your experience? How have others responded after hearing you talk about your life with PD?
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4 Replies
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I try to explain as well as I can especially at church I’m amazed at how little people know about PD. I’ve beeoto a support group here in my city the members are all much older and further along than me I’m (early onset) the woman in charge is a retired teacher and has asked if I’d be willing to help her and eventually take over the group I’m still thinking about it.
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Marcus, that would be wonderful if you could take over the support group eventually. I am sure you would be an inspiration to many.
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Thank you for responding, Marcus. What kinds of activities do you do with your support group? Are you hesitant about taking on the leadership role in the future?
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We have visiting neurologist’s question and answer sessions. Therapist visits big and loud rock steady and the like. I would like to help out more but our group is a little older than me further along in their progression. Still I would like to help out more maybe bring a younger element to the group.
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