This week, we’ve invited our YOPD Council leaders (Amy, Steve, Gaynor, Kat, Tom, Erin, Heather, and Kevin) to take over the blog and share their stories. We hope you’re as inspired by them as we are.
Interview with Erin Michael, Davis Phinney Foundation YOPD Council Leader
Two years ago, Erin Michael went to her doctor thinking she had pulled a muscle in her arm. Several visits to several doctors later, she found herself in a neurologist’s office, where she was diagnosed with Young Onset Parkinson’s. “I had gone to the appointment by myself because I wasn’t expecting anything major to come out of it,” she says. “When I was told that it was Parkinson’s, I spaced out to everything else that was said. I thought it was the end of the world.”
After getting a second opinion and spending a few months doing her own research, certain that her symptoms were caused by something other than Parkinson’s, she accepted the reality and made a plan. Learn how she navigated her career, healthcare, support groups, and outlook on life as she learned to live well with Parkinson’s.
“People genuinely do care. The support I have felt has been tremendous. And I’m very hopeful about what the future may hold.”
- After being diagnosed with Parkinson’s at age 41, Erin searched for online support groups for advice and community. It was a challenge to find other young people with whom she could relate, and she felt the tone of some of the groups was too negative.
- Then, when searching for #Parkinson’s on LinkedIn, Erin found an article by someone who lived just five minutes away. She reached out and set up a meeting and says he “instantly put me at ease and put me in touch with a bunch of people in my age group. He had all the answers I needed. It gave me hope.”
- Erin loved her job and didn’t want to leave it. She didn’t disclose the diagnosis right away, and when she did, a few people thought she was joking, and a few shared the news without her permission. “I felt like I was under scrutiny,” she says.
- She felt “completely taken aback” by how much her company’s HR department didn’t know in terms of the benefits and disability aspects. “You learn to become an advocate for yourself” in those situations, she says.
- Joining the Davis Phinney Foundation’s YOPD Council has given her a community of other young people experiencing many of the same issues she is. “There is a huge stigma around Parkinson’s and with the young onset group in particular. When you’re young and you tell someone you have Parkinson’s, they’re like, ‘Are you sure?’ That can’t be. My grandpa has Parkinson’s and he’s 80.’ Being able to share experiences with other young people has helped change some of the stigma.”
- One of Erin’s biggest challenges with Parkinson’s was “getting the medication menu right.” Trial-and-error and personalized pathways is the key to finding the right balance.
- To someone who has just been diagnosed with YOPD, Erin would say to take a pause and breathe; to seek help to financially protect yourself and your family; to stay active in your community; to support others; and to coach people you meet in life who do not know much about Parkinson’s. “To teach someone is a positive thing.”
WANT TO learn more about the yopd Council?
You can register for the entire YOPD Council series here. We meet on the third Thursday of every month to discuss the unique challenges of living with YOPD.