Opinion: We’re late for Parkinson’s Awareness Month, and maybe that’s the point

Just like so much of the research on Parkinson’s, we’re running late.

It’s the last day of April, the tail end of Parkinson’s Awareness Month, and honestly, maybe that’s fitting. Parkinson’s has spent too much of its history arriving late to the public conversation: late to be understood, late to be funded, late to get the urgency it deserves.

I’ve been thinking about that a lot over the last few years. My Dad, Pat Apel, was a brilliant prosecutor, author, soldier and pastor who died in November 2024 after living with Parkinson’s disease and Lewy body dementia, and there’s no way to describe what those diseases do that doesn’t rip your guts out.

It was horrible for him to endure. It was hard to watch. There’s no polished way to say this: it is an evil disease.

Parkinson’s can begin quietly, maybe a tremor, stiffness, a lowered voice, or a shuffling gait. But for many families, they learn that’s just how it starts. It goes on to affect sleep, speech, balance, memory, mood, swallowing, even your grasp on reality. When Lewy body dementia enters the picture, it can bring hallucinations, confusion, terrifying fluctuations, and losses that feel impossible to measure.

It devours a person in pieces. And if that sounds harsh, it’s because sugarcoating diseases like this has never helped anyone. If anything, it has helped policy makers look the other way as if it were a hopeless cause.

There’s growing recognition that Parkinson’s and Lewy body disorders are deeply linked. Some studies suggest most people living long enough with Parkinson’s may eventually develop dementia. That reality deserves far more attention than it gets, because too many people still hear “Parkinson’s” and think aging Katharine Hepburn and shaking hands.

They don’t live inside the whole storm.

And yet, for all I could say about grief, this isn’t a column about despair. It’s about hope, because there is real hope, and I say that from the other end of the fight — the end where we didn’t win. We took a devastating loss, though I wish you could have seen what a hero my Dad was.

About 1 million Americans are living with Parkinson’s, with nearly 90,000 new diagnoses each year, according to the Parkinson’s Foundation. Those numbers are daunting, but they’ve also helped drive research into places that felt unimaginable not long ago.

That’s where I want to focus. For decades, Parkinson’s treatment mostly meant trying to manage symptoms. Now researchers are chasing something bigger: slowing progression, catching it earlier and, one day preventing it.

Think about how profound that could be if we could go to those coping with this terrible disease, and interrupt it.

According to the Parkinson’s Foundation, scientists are studying biomarkers that may help identify Parkinson’s and Lewy body dementia earlier. Researchers are pursuing therapies targeting alpha-synuclein, the protein implicated in these disorders. Gene therapies are advancing and new continuous infusion treatments are helping some patients smooth out debilitating motor fluctuations. The federal National Plan to End Parkinson’s Act has created new momentum for research coordination.

That’s big, because the hope in diseases like this rarely arrives as one giant breakthrough. It comes in steps, like better diagnostics, better symptom control, longer independence.

Maybe one day there’s more dignity, and maybe, eventually, consistent prevention.

Heck, maybe one day we can find a way to convince whoever the evil overlords are that memory care, which is the only option for many families with loved ones suffering from Lewy body dementia, should be covered by insurance… BECAUSE IT CURRENTLY IS NOT.

When I asked why that’s the case, I was told that dementia is “not considered a medical condition.” The words that come to my mind even as I type that are not fit for mixed company.

That’s around at least $8,000 a month out of pocket in Mississippi and Ohio, which is where we paid for it for about four years. We were so blessed that our grandfather had left us some inheritance that was meant to go to us when our parents died — we used most of it to see to it that Dad was cared for, but most people don’t have that.

Most families have to make the choice between working to pay that kind of treatment and make sure it’s done right, or someone has to come home from work to provide around-the-clock care for their ailing loved one. It’s not okay, it’s not fair, and someone political should be held accountable.

But in that moment of frustration just now, I digress. To get back to the medical side of Parkinson’s, every move forward is important, maybe more than we know.

I do think there’s growing hope in how people talk about caregiving now. For too long, families were expected to carry these burdens in silence. More people are speaking openly about the emotional toll, the exhaustion, the heartbreak. That honesty needs to be heard at the highest levels, too, because if you’ve watched someone you love navigate Parkinson’s or Lewy body dementia, you know this isn’t an abstract policy issue or a colored ribbon awareness campaign.

It’s deeply personal. It’s hard nights. It’s adapting, grieving, and adapting and grieving again. It’s loving someone through changes neither of you asked for and that you’ll never be able to erase from your memory unless dementia comes for you, too.

For us, it was being grateful that Dad remembered who we were until his last day. He remembered his favorite authors, his favorite foods… and as a lifelong prosecutor and military man, he even was talking about cases and missions right up until the end. He lived so much life before his body and brain were taken hostage, and mercifully, God let him live the excitement of that life in his mind even from his room at the Blake in Flowood.

But after a life of service and selflessness, my Dad deserved better than this disease. So do countless others. And while I can’t rewrite what Parkinson’s and Lewy body dementia took from him, I can say this: I’m more hopeful for others than I was a few years ago because of what science is doing. Some of it is FDA approved, and some of it is still in the process.

Researchers seem to be asking bolder questions and awareness seems to be on the rise, because maybe we’re finally treating Parkinson’s with the urgency it has always deserved.

So yes, we’re late, but maybe that’s the lesson. Awareness doesn’t belong just to the month of April anyway.

Maybe it belongs in what we fund, what we study, what we talk about, and the things that affect us that we refuse to ignore. Perhaps that’s worth remembering, even on the last day of the month.

And for my Dad, who loved the truth above all else but his Maker and whose fight with Parkinson’s and Lewy body dementia ended his life too soon, may our telling the truth about this disease help honor your legacy and move us closer to better answers.