An interview with Brent Maney: Parkinson’s Advocacy.
Biography
I’m a former Air Force Pararescueman (PJ) and full-time caregiver to my wife, who’s been living with Parkinson’s for 18 years. I did 12 years active duty before transitioning into civil service. I’ve worked alongside NASA, the DoD, and special operations teams but nothing prepared me for the silent, relentless grind of being a spousal caregiver. My wife is currently on hospice, not for end-of-life, but for palliative care due to the severity of her symptoms and fall risk. We were featured on Season 33 of Military Makeover with Montel Williams, where our story was highlighted. I started HeldLight not to talk about my own resume, but to offer something real to the people barely holding it together behind closed doors. This is personal. And it’s every day.
Can you tell me more about your Advocacy?
This isn’t about awareness for awareness’s sake. It’s about survival. After years of watching the woman once full of life become silenced by dyskinesia, dementia, and the slow erosion of independence, it became clear: someone has to speak the truths no one wants to say out loud. Not to shock but to unbury the pain caregivers are taught to keep hidden. HeldLight was never meant to be a spotlight. It’s a lantern held out in the dark for others to find their footing.
What type of goals does individuals with Parkinson’s have when working with you?
People living with Parkinson’s are surrounded by medical professionals, support groups, and information. But often, there’s a deep, quiet ache underneath all of it, an emotional weight that rarely gets named. “caregiver”..That’s where this work lives. In the cracks. The moments between doses. The despair that hits when no one’s watching.
What type of training and how long are the programs?
There’s no curriculum, no sign-up form. Just real talk, raw truths, and moments of clarity posted in short-form content accessible when the house is finally quiet and the caregiver is too exhausted to pick up the phone.
What would you like to see as a future goal for your Advocacy?
A full book is in the works. The long game is building HeldLight into a digital sanctuary free to access, impossible to fake, and filled with voices that reflect the true grit of caregiving.
What events do you participate in?
Most of the advocacy happens on TikTok, where the community is active and the comments are real. Facebook, Instagram, and YouTube accounts exist (HeldLight), but the reality is there’s barely enough time to keep up with TikTok alone. This started May 28th. It’s taken off faster than expected, and the wave of comments and DMs is nonstop. Between caregiving full-time, holding down a high demand job, and trying to raise my son, this platform has to stay simple. The domains are owned, and the website is coming but right now, it’s just one voice with room for likes and comments.
How does this also assist the caregivers?
HeldLight doesn’t exist to center the story of one person. It’s built to amplify the stories no one else will tell. Late-night scrolls, breakdowns behind bathroom doors, emotional detachment, panic attacks, binge eating, anger, nothing is off limits. This is a space for caregivers who live the role every single day. Not the ones who drop in twice a week or tag-team with relatives. Not the ones whose loved one is in a facility. This is for the 24/7, full-immersion, trench-level caregivers who get up, go to work, raise kids, and come home to chaos and heartbreak without help, without thanks, and without rest.
How can someone get in touch? What is your website?
TikTok: @heldlight
Instagram: @heldlight
Facebook: @HeldLight
YouTube: HeldLight
How can others also become advocates for awareness?
Speak the truth. Especially the uncomfortable kind. Use your voice before you lose it. There is no certification for raw honesty just the courage to say, “This is hard, and it’s hurting me too.”
In your opinion what is the key to effective advocacy?
Tell the truth, even if it makes people squirm. Especially then.
How can we better fundraise to support a cure for Parkinson’s?
This isn’t about money, at least not right now. A book is underway, five chapters deep. It’s raw, unfiltered, and written for the people living this life, not the ones analyzing it from the outside. If anything comes from it financially, no decisions have been made yet about where that money goes. The focus right now is on building something that matters, not monetizing it.
What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?
Meditation, breathwork. Music. Sarcasm. Deep breaths in parked cars. A dog that knows when to intervene. A son who steps in when others ghost. Nothing flashy, just what works when everything else doesn’t.
Why should people who don’t have Parkinson’s care about this?
Because one day, it won’t be someone else’s story. It’ll be yours. This disease isn’t courteous. It shows up uninvited and brings a lot of baggage with it.
Have you had any family members or relatives affected by Parkinson’s disease?
Parkinson’s hit home hard. No filters, no breaks. Just slow, cruel erosion of someone who once lit up the room.
If you had one song that would tell us more about you or represent your life, which song would it be?
Love and Fear — written by me through the Freedom Sings program. Donovan Chapman, a close friend and former roommate, helped bring those lyrics to life. He’s the voice. But those words? They’re mine. Every line comes from the real experience of caregiving, trauma, and what it means to keep going when there’s nothing left in the tank.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
“For caregivers lost in the dark—we hold the light until they find their own way home.”
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/