An interview with Mark Milow, Parkinson’s Advocate on June 6, 2023 by George Ackerman, Ph.D, J.D.
Please tell me a little about your background and what got you involved with awareness.
I was diagnosed in 2021 with PD. When that happened, I really struggled with the “why?.” I was always purpose driven, but my mind struggled to put meaning to it. I found by posting online and sharing my experiences, people were responding and finding help or answers going through what they were. Through that I gained a passion for advocacy and speaking out about Parkinson’s because I realized how misunderstood many were. I thought I would like to change that. It was therapy for me to talk about what I was going through but in turn I was also helping others.
I created Mark In The Park 21 shortly after I was diagnosed with Parkinson’s Disease in February 2021. I was searching for information online and I found an entire community. I have also found great purpose in Parkinson’s Awareness and Advocacy.
Can you tell me more about your advocacy?
My advocacy started with Tic Tok, Instagram and a Facebook group. I started posting online, things I was learning, things from other Parkinson’s patients and caregivers. Caregivers play a large role in the process. I was enrolled in a Parkinson’s Foundation “moving day.” I was amazed how many people were attending and it was great to see so many in the Parkinson’s community.
I have partnered with the Parkinson’s Foundation, and I proudly represent them as a Parkinson’s Foundation Ambassador, a Hospital Care Lead, and a Chapter Advisory Board Member. My work with the Parkinson’s Foundation and other organizations and individuals in the Parkinson’s community spans a myriad of social media platforms. I can be heard on podcasts such as “Two Mikes” and seen on Instagram Lives with professionals across the Parkinson’s community. I created this space as a sort of “home base” for the various projects I’m involved in.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
As of late, I have been speaking to long term care facilities through the Parkinson’s Foundation and I do the presentations. I get to meet caregivers, staff and the individuals with Parkinson’s. I really enjoy speaking and working with the Foundation.
What is the biggest issue today in the Parkinson’s community?
We need a cure. I love the legislation moving through Congress with the Michael J Fox Foundation. Today there is no dedicated federal funding for Parkinson’s disease. I was fortunate enough through the MJFF to be on a call to discuss how important this is for my community as well. I told them the medication has been around for a long time and has negative side effects with prolonged use and discussed many areas the legislators were not aware of. They promised to back the bill and get more involved.
What type of goals do individuals with Parkinson’s have when following you on social media?
I believe when people come to my social media pages, they feel positive. I find caregivers, families contact me and ask many questions. They were supported and to know others are out there just like them. People have opened and shared their hearts with me. They have literally contacted me, and I have talked for hours trying to provide my experiences so they can also have hope and direction.
One of the biggest struggles is for people newly diagnosed to find resources. Many are told by doctors to take pills and see you in a few months. You walk out and feel lost and do not know where to go and resources for individuals are huge. I cater to the young onset Parkinson’s crowd and a focus on the early diagnosed. I am trying to create a support system for the PD community.
What would you like to see as a future goal for your advocacy?
I am attending the World Parkinson’s Congress which focuses on Parkinson’s as a whole. They bring doctors, caregivers, individuals with PD all together to network, support and build relationships around the world. See https://wpc2023.org/
Another goal is improving the information available for the newly diagnosed. I have proposed with the Parkinson’s Foundation and more resources for Young Onset Parkinson’s.
What events do you participate in?
Parkinson’s Foundation “Moving Day”, The World Parkinson’s Congress, Parkinson’s revolution (a biking event) and Michael J. Fox Events.
How does your advocacy assist caregivers?
This is a very under focused section of the Parkinson’s community that needs attention. Caregivers are just as important because they bear so much weight. There needs to be more resources, support groups and focus due to the mental and emotional drain caring on individuals with PD. I have had several caregivers contact me, but I feel we need to do more. Especially as the stages of the disease advance.
How can someone get in touch? What is your website?
You can reach Mark at https://www.markinthepark21.com/
Biography
My background in relation to Parkinson’s Disease started when my wife and I cared for my grandmother, who had Parkinson’s Disease and dementia. My grandfather also (both on my mother’s side of the family) suffered from PD (both in the ’90’s). And then in 2020 I began to experience symptoms and was diagnosed in February of 2021 with Young Onset PD. After my diagnosis I became obsessed with finding out more about PD. I created a couple of social media accounts (TikTok and Instagram- @markinthepark21 for both platforms) and began “vlogging” about my experiences, more as a therapy for myself than anything else. But I found that those “Vlogs” were helping people through their own journeys.
I began advocating for PD awareness over the next 18 months, which led to the Parkinson’s Foundation asking me to join their Ambassador Program, and to be part of their Southwest Chapter Advisory Board. So now I do what I can to be a voice for the PD community, while still working full time. As an example, near the end of 2022 I had the privilege of joining the good folks at the Michael J. Fox Foundation in meeting with AZ Representative Debbie Lesko’s office in asking for her support for the “End Parkinson’s” legislation that was introduced last year. And now I am working to raise the funds to go to the World Parkinson’s Congress held in Barcelona Spain this coming July as a volunteer to help at the convention.