Photo-illustration by Newsweek/Courtesy of Todd Weissman
By Todd Weissman
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I am 46 years old. I’m a husband and father of two. And in December of 2024, at the age of 45, I was diagnosed with Parkinson’s disease.
First, to the uninitiated, no, I am not dying.
Parkinson’s is a progressive brain disorder that affects movement, primarily due to the loss of dopamine-producing cells in the brain. By the time symptoms first appear, the majority of these cells are lost forever, meaning the disease can progress for years before any of the telltale physical symptoms emerge—tremors, stiffness and slowness of movement, among others. But PD is also associated with a host of non-motor symptoms, including anxiety and depression, that can take a toll.
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I’m told that people with Parkinson’s are more likely to die with the disease than because of it. Treatments have significantly advanced, with new therapies focused on trying to control symptoms for longer periods of time. Still, over time, the heightened risk of falls and infections, the increased prevalence of cognitive decline, and the impact on caregivers and loved ones are among the many things I would prefer to avoid.
The good news for me is that I’m young. Not young according to my kids, as they so often like to point out, but as someone who was diagnosed before the age of 50, I fall into the category of young-onset PD, which affects about 10% of those with Parkinson’s, according to the American Parkinson Disease Association.
When I was first diagnosed, I was told that for most people with young-onset PD, the disease progresses slowly, that it’s important to be active to try and slow progression. But I was already active. I stayed active. So what did it suggest when my symptoms worsened over the past year?
Progression is a word I’ve grappled with: when my finger has gotten stuck on my keyboarddddddddddd. When I’ve had to switch hands to prepare a meal. When my arm or hand no longer moves as deftly as it once did. Progression may be slow, but it’s still progression.
Fortunately, there is a broad community of support and resources for those living with and caring for others with PD. In the months leading up to my diagnosis, I thought I would lean into that community. There was almost an initial relief once I received my diagnosis, as I couldn’t help but wonder if my symptoms were all in my head. But instead of connecting with this community or even with my own family and friends, I largely turned inward.
Telling someone you have PD is not exactly a conversation-starter. I don’t want to be pitied, or for PD to be the first thing people think of when they see me. I don’t want colleagues to question my capabilities, or to be graded on a curve.
As I’ve come to learn, these fears are not unique. While some people tell their friends and family and co-workers immediately after they’re diagnosed, others wait years, even a decade or more. Until recently I’ve only told a handful of people, and I underestimated the impact it would have on them, and on me.
So why, you might ask, am I sharing this news so publicly?
Because silence has a cost, and Parkinson’s is a disease that too often asks patients to navigate that cost alone.
There remains a stigma associated with Parkinson’s: that it’s an older person’s disease, that it only affects movement, that everyone with Parkinson’s looks the same. These assumptions persist precisely because so many people feel compelled to keep their diagnoses private. I am by no means condemning the decision. I understand the impulse.
Silence is also compounded by a disease that unfolds more gradually, and within a healthcare system that lacks the same level of integration compared to some other diseases.
Before my diagnosis, I spent years working at a cancer center. There, a cancer diagnosis typically sets off an immediate, coordinated response. Care is centralized. Specialists communicate. Treatment plans move forward with urgency. For good measure. Cancer is an acute disease; without treatment, most cancers are fatal.
Parkinson’s operates on an entirely different timeline, and within a more fragmented system. After my diagnosis, I was told I’d see my neurologist again in five months. I was given options about whether to start medication, and which medication to take. I learned that finding the right drugs and dosage is a moving target, one shaped by trial and error. Spend time in any Parkinson’s support group and you are almost guaranteed to hear people discuss their medication regimens. They become experts in their own care. For me, that was overwhelming.
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It took the better part of a year to understand how much I would need to quarterback my own care—to build a broader care team that now includes physical and occupational therapy, and to engage with a support group with others living with young-onset Parkinson’s.
It’s not an indictment on my neurologist. Far from it. Neurologists who specialize in Parkinson’s and other movement disorders are stretched thin. Though this hasn’t been my experience, I’ve heard from others that appointments can be brief. For others, particularly in rural communities but even in some cities, it may take hours to drive to a specialist. For many people, it can take years of misdiagnoses before Parkinson’s is even identified.
The system assumes a level of confidence, persistence and knowledge that is hard to summon when you’re still coming to terms with the diagnosis itself. Silence makes that learning curve steeper.
I’ve also just spent the past four years capturing the stories of people who walk the halls of a cancer center—patients and staff alike, who spoke candidly about their own fractured childhoods, self-doubt, mental health struggles, winding career paths and loss. Their vulnerability was a gift. The longer I have kept my own diagnosis private, the more I felt misaligned with the very values I spent years documenting. I don’t think of that as hypocrisy so much as fear, but it’s weighed on me.
Most of the people I connected with spoke about gratitude: gratitude for the hardships they’ve endured, how their struggles have given them perspective and made them more appreciative.
I can’t say I’m grateful for my Parkinson’s. Not yet, at least. But I am hopeful. Hopeful that the pace of scientific discoveries will suggest a different progression. Hopeful that speaking openly might make this disease a little less isolating for someone newly diagnosed, and for myself. Hopeful that it might make the path ahead just a bit easier to navigate.
Hope is not a cure, but it’s not a bad way to move forward.
Todd Weissman is the author of “The Light That Endures: Stories of Courage, Compassion, and Resilience at Dana-Farber Cancer Institute,” set for release on May 1, 2026.
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