An interview with Melissa Marie Livingston on the topic of YOPD on June 16, 2023 by George Ackerman, Ph.D, J.D.
Biography
I was diagnosed in 2020 after a four-year process in which my doctors chased a Multiple Sclerosis diagnosis. I was alone when I found out I had PD, and even after I told my family I still felt like I was on an island.
Please tell me a little about your background and what got you involved with awareness.
At just 13, I lost my mother and had to overcome so much though my life. I was diagnosed with YOPD (Young Onset Parkinson’s Disease). One of my accomplishments is I have gained over one million views on my #parkinsonslookslikeme hashtag.
Can you tell me more about your advocacy?
I started using my Instagram account as kind of an electronic journal to just express myself regarding my diagnosis and journey with it, thinking that if my words helped even one person then that was pretty cool.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
Around this time last year, I posted about a hashtag I had created and was using to put a new face on the tired old Parkinson’s stereotype – #parkinsonslookslikeme and it resonated with the online Parkinson’s community.
So now I spend my time just helping people through their struggles with Parkinson’s and try to provide a positive, supportive platform for others.
What type of feedback do you get from your social media followers?
Most are supportive and kind enough to share their experiences with others on the same topic.
What type of effect can your posts and platforms have on an individual with Parkinson’s?
I have learned, through feedback, that shared experiences are kind of an equalizer and allow us to give ourselves grace.
What would you like to see as a future goal for your social media?
I’d like to expand my advocacy to mental health and chronic illness not just Parkinson’s.
What events do you participate in?
I do the 60 miles challenge with the Parkinson’s foundation as well as collaborate on and help plan events throughout the year with Gray Strong where I am also the social media manager and publish our blog.
How does your social media advocacy also assist the caregivers?
Often caregivers tell me that my posts help them understand their loved one’s experiences better, particularly if their loved one is not comfortable with discussing with them.
How can someone get in touch? What is your website?
Missmliv @ Instagram and undeniablyhoneybee on TikTok
If you had one final statement or quote you could leave for the Parkinson community, what would it be?
Your diagnosis is not the end. It will change your perspective, often in a positive way. With hard work and resilience, you can live a beautiful life with PD.