On 1/1/2020……. I lost my mother, Sharon, due to Parkinson’s disease. I wanted to share my thoughts and ideas on tough topics in caregiving and send thoughts and prayers for others diagnosed and caregivers, so this BLOG was created in their memories.
The Tackling Tough Topics BLOG 27: Bans, Restrictions and Limitations on Social Media, Oh My!
This blog is dedicated to all those caretakers who care for a loved one with any disease and to those who have been diagnosed. We hear you; we see you, and we will never stop fighting until there is a cure
Awareness is critical. Imagine being banned on social media for advocating too much.
Advocacy is not something I do part-time—it’s something I’ve dedicated my life, time, and heart to, in memory of my mother, Sharon, and for everyone battling Parkinson’s disease today, along with their families. I never want anyone to face this journey alone the way our family did.
So you commit fully. You post. You share. You like. You comment. You support others. And then one day, you receive a notification like the one below—and suddenly, you can’t advocate at all.
In my experience, TikTok and Facebook are the worst offenders.
Facebook
Facebook restrictions, in particular, have been incredibly frustrating.
For example, I recently tried to congratulate and support my friend Esther (please support her at Shaking In My Boots – Esther) with a simple, positive comment—only to be told that I was restricted. It’s draining and disheartening, especially when the intent is nothing more than awareness and support.
Advocacy is already hard enough—researching, reaching out, educating, and connecting across the world. Adding the battle against social media algorithms and unanswered bots creates yet another obstacle. These systems don’t understand Parkinson’s disease, awareness, or how deeply this matters to so many of us.
But despite the frustration, the mission remains the same: awareness, support, and hope—for no one should ever have to face Parkinson’s alone.
TikTok Restrictions?
I was posting about the importance of addressing Parkinson’s disease within the context of policing when I suddenly saw a notice at the bottom of the screen stating, “Disclose Commercial Content.” As an attorney and an advocate, this is truly baffling.
Instead of offering support, these social media systems—driven by automated algorithms rather than human understanding—too often do the opposite. Still, the community that remains and continues to engage is far more important than allowing these platforms to silence advocacy altogether. That community is worth fighting for, rather than accepting permanent bans that prevent us from speaking out for a cure.
The appeal process is available, but when you find yourself appealing over and over again—especially on the majority of Parkinson’s awareness posts—it becomes exhausting. Lately, it feels like I spend more time appealing restrictions than actually posting.
And yet, the message remains simple: this is about a cure. It is not commercial content. It is not spam. Nothing is being sold. It is purely an effort to raise worldwide awareness for Parkinson’s disease and the people it affects every day.
There are so many rules online, enforced by automated systems rather than real people, that often label meaningful posts as spam without ever reviewing the intent behind them. Copyright flags, spam filters, and unrelated restrictions become barriers—not to harmful content, but to sharing a message that matters: the urgent need for a cure for Parkinson’s disease.
That is all this work is about. And once a cure exists, I won’t need social media for advocacy ever again.
Social media can be filled with negativity—politics, division, and opinion—but thankfully, one thing most people agree on is that we need a cure. I don’t think I’ve ever seen anyone argue otherwise, even in Congress. And yet, despite that shared goal, voices are still limited, restricted, or silenced for simply trying to raise awareness and volunteer time to reach as many people as possible.
Some days I wish I could take a break or step away from posting. But then I think of my mother, Sharon—what Parkinson’s disease did to her and to our family. It changed me forever. Parkinson’s doesn’t take a break, so why should I? I can’t bring my mom back, but through every person I meet, you help ensure she is never forgotten and that her story continues to matter. That is all I could ever want.
So yes, this is another obstacle in advocacy—but it will never stop us. We will keep sharing journeys, inspiring one another, and refusing to give up. It takes all of us, together, to raise awareness and reach the world for this cause.
Together, our voices are stronger. Social media may frustrate me, but it will never silence me.
You are never alone.
What are your thoughts on being banned or restricted for posting awareness? Is there such a thing as too much awareness?
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Want to share a Blog on a PD topic? Reach out to togetherforsharon@gmail.com
TogetherForSharon® In memory of my mother, Sharon to voice awareness & hope for a Parkinson’s Disease cure
Do you have a story to tell, a journey to share, or a blog you’d like to write?
We are always looking for writers, bloggers, and Parkinson’s advocates who want to team up and raise awareness together.
If you’re interested, please email us at togetherforsharon@gmail.com.
You can also explore our blog here:
https://togetherforsharon.com/parkinsons-blogs/
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George’s Biography
Dr. George Ackerman is from Brooklyn, N.Y. He now resides in Florida and works in the fields of law, police, and education. George lost his mother, Sharon Riff Ackerman, on 1/1/2020 due to Parkinson’s Disease.
George wanted to honor his mother and continue to help in the Parkinson’s awareness cause, but he did not know how to bring about change. With my family, we started TogetherForSharon® to keep my mother, Sharon Riff Ackerman, ‘s memory alive and share the message of Parkinson’s Awareness and hope for a cure.
Today, https://www.togetherforsharon.com/ reaches thousands of individuals across the country to raise awareness of Parkinson’s disease. George currently interviews individuals throughout the Parkinson’s community, including various foundations, caregivers, and Parkinson’s warriors, to help share their stories and causes.