An interview with Joanie Rollins: The Truest Version of My Life
Biography
I grew up moving from place to place, mostly on or near Air Force bases, so change felt normal long before I even understood why. I learned early on how to adapt and how to belong and then leave. As an adult I got diagnosed with young-onset Parkinson’s in 2020 at 40 years old, then breast cancer in 2023. Around the same time, my mom was diagnosed with ALS and died the next year, and suddenly illness and grief weren’t chapters, they were the whole landscape. I live with questions that don’t have clean answers, and I’ve stopped pretending they should. I’m still here, loving, living, and asking the uncomfortable questions, trying to make meaning without lying to myself about how hard this has been. I’m still me, just a moving version on a sliding scale and I’m definitely not done yet.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
My passion is that nobody feels alone and we have to educate and find a cure. We don’t know what we don’t know.
What type of goals do individuals with Parkinson’s have when seeing your Advocacy?
I think most people feel grateful.
What type of training and how long are the programs?
I’ve only down the support group leader training online with PMD Alliance
What effect can your Advocacy have on an individual with Parkinson’s?
Significant because I’m living with YOPD and awareness we need so we can find a cure
What would you like to see as a future goal for your Advocacy?
I want to grow my network of change makers and bring awareness nationally
What events do you participate in?
I participate in local events in Orange County CA.
How does this also assist the caregivers?
Caregivers can come to group and are always welcome we believe they need education and support too
How can someone get in touch? What is your website?
@I_still_need_me_YOPD
How can others also become advocates for awareness?
Anyone can do it, start talking about it connecting with the PD world, raise money and I hate saying that but we do we need research
In your opinion, what is the key to effective advocacy?
Social networking
How can we better fundraise to support a cure for Parkinson’s?
Not sure but we definitely need this.
What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?
I know everyone says exercise and I try but apathy sucks but I try to educate and keep connecting with people.
Why should people who don’t have Parkinson’s care about this?
Because it’s the fastest growing neurological disease even over Alzheimer’s and that’s super scary to think about but what are you doing about it.
Have you had any family members or relatives affected by Parkinson’s disease?
No
If you had one song that would tell us more about you or represent your life, which song would it be?
“Shake it Out” by Florence and the Machine
It’s just like me dealing with a heavy history, but I’m not letting it define the ending. I’m not done yet!
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
Please never think you are alone we are here and we are all not old, and your life is not over it’s just going to look a little different. Never give up
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TogetherForSharon® In memory of my mother, Sharon to voice awareness & hope for a Parkinson’s Disease cure. Sharon’s Son, George
Support https://www.togetherforsharon.com/shop/
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