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My husband was 37 years old when I watched him slowly begin to change. First it was intense anxiety that seemed to take hold of him overnight. Then the emotion left his face, replaced with blank stares. The last changes came on suddenly ― the limping, stiff muscles and inability to pick his left leg up and walk with a normal stride.
After test after test, doctor after doctor, we finally found the reason for his suffering: early-onset Parkinson’s disease.
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Parkinson’s is a progressive brain disease that affects muscle control and movement. In my mind, it was a disease of the elderly. I was picturing a tremor in an old man, not my young, healthy husband.
My husband was 19 when he started as a lineman at the power company. The job was hard: long hours, navigating storms, physical strain. But he loved the adrenaline of it, the moment the lights came back on for people who had been sitting in the dark. He was the man who restored the power.
For 18 years, work was his life. But before we even had a name for what was happening to him, he was in pain every day. Then there came a point when he could not tie his own shoes. A man does not climb a light pole when he cannot trust his legs. He had to leave the only work he had ever done for a less demanding desk job.
He is lucky to still be working, but the spark that the work gave him, the thing that defined him, was the first thing the disease took.
Parkinson’s begins its work years before anyone suspects anything is wrong. By the time symptoms show up, 60 to 80% of the brain’s dopamine neurons have already vanished. The symptoms that are visible are only the opening chapter of a much larger story.
This is why many people underestimate the demands of Parkinson’s caregiving. The easy part is the physical, the things that need a steady hand — buttons, a knot, the precise work his fingers cannot always do now.
The rest is harder. The disease changed his moods. There are days his behavior is similar to a person with PTSD. Crowds overwhelm him now, so we plan around them. The disease causes depression, and I watch the same thoughts circle in him — that he is not good enough, not strong enough, not the man his family needs.
He was the man who restored the power. Now he sits with the fear that he is failing us, and there is no button I can fasten for that.
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And then there is the impact on our children. I have had to find the words to tell them that Daddy cannot run and play the way he used to, but it is not because he does not want to. They are small, still trying to figure this world out. I am trying to teach them how to love someone whose body is changing. I hope I am doing it right.
The hardest part is missing him while he is still here. He is not the same man I married. I catch myself getting frustrated when a task takes him longer than it used to, or when he does not have the energy he had a few years ago. When I remember why, the frustration turns into guilt.
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And yet Parkinson’s has made us closer. He spent his whole life doing everything at full speed, 100%, and the disease has forced him to slow down. We have had to get to know each other again, the way you do at the beginning. I am meeting him and grieving him at the same time.
It’s hard not knowing what’s next. He may reach a point where he cannot walk, or he may not. The cognitive decline is not a maybe. We know that is coming. I lie awake wondering whether I will know how to support him through it.
For decades, scientists have been working toward what patients and families most want: a way to detect the disease before it takes hold, and a way to slow it once it does, rather than only managing its symptoms.
At Duke University, a neurology researcher named Laurie Sanders has developed a blood test that can identify Parkinson’s in its earliest stages, years before the tremor or the limp appears. In laboratories across the country, other researchers are testing therapies designed to change the course of the disease, not just manage it.
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But in February 2025, the National Institutes of Health (NIH) abruptly began cutting a sweeping number of active grants, targeting research areas that had fallen out of favor with the administration. Despite legal challenges, on Aug. 21, 2025, the U.S. Supreme Court, in NIH v. American Public Health Association, cleared the way for the administration to cut nearly $783 million in grants that fiscal year, about $2 billion counting future-year payments.
Federal funding, mostly through the NIH, funds the basic research that makes drug development possible. One study found that the NIH contributed to research connected to nearly every one of the 356 drugs the FDA approved between 2010 and 2019, about $1.4 billion in NIH research per approved drug.
For FY2026, the Trump administration proposed cutting the NIH by about 40%; Congress instead gave NIH a small increase. Continued funding rests on what Congress decides for FY2027, which begins Oct. 1. That decision determines whether the research that might reach my husband survives the year.
The question researchers have been trying to answer with that funding is the one that matters most to families like mine: Why does anyone get this disease at all? Only about 10% of Parkinson’s cases have a clear genetic cause. For the remaining 90%, the cause is largely unknown, though decades of research have linked exposure to certain pesticides, industrial solvents, heavy metals and traumatic brain injuries to higher rates of the disease.
The Department of Veterans Affairs already recognizes Parkinson’s as a service-connected condition for veterans exposed to Agent Orange in Vietnam, and for Marines who served at Camp Lejeune between 1953 and 1987, when its water was contaminated with industrial solvents.
Agricultural workers exposed to certain pesticides, and industrial workers exposed to trichloroethylene and related solvents, develop Parkinson’s at higher rates. Utility workers, like my husband, work with many of the same substances, though the research on them specifically has not been done.
None of these populations knew at the time what they were being exposed to. Veterans did not choose to breathe burn pit smoke. Marines did not choose to drink contaminated water. Farm workers did not choose to spray a pesticide that would show up in their brains decades later. Utility workers, like my husband, did not choose the solvents that soaked into their gloves.
In every one of these cases, science eventually caught up with the exposure, but only because researchers had the time and funding to do the work. Without that work, we would still be telling these people that their diseases were their own fault, or a coincidence or bad luck.
When a Parkinson’s grant is terminated, a postdoc leaves science. When a lab closes, a graduate student chooses a different career. A country that stops training its scientists stops producing scientific advances, and the cost of that will not fall only on people with Parkinson’s. It will fall on every future patient, in every future disease, in a country that is no longer producing the medicine it once did.
A democracy decides what it owes the people inside it, and for a long time this country decided it owed them the search for cures, paid for in common, belonging to everyone. I am afraid that promise is being withdrawn. A cure paid for in private reaches only the families who can afford it.
When people ask what I hope for, the answer is simple. I hope the research keeps going. I hope that in his lifetime there is not just a way to slow this disease but a way to end it, and that our children’s generation inherits a disease that can be caught early and stopped. That hope depends entirely on work that is happening right now.
My husband is getting worse, slowly, in ways that will not reverse. Somewhere, in a lab that may or may not still be funded next year, a researcher is working on a therapy that might slow the progression of his disease. We are running a race against decisions being made in Washington. My deepest fear is that we are losing.
Amber Dembnicki is a writer in Moore County, North Carolina. She writes about foreign policy and the human cost of political decisions, and her work has appeared in International Policy Journal. She writes regularly on her Substack.
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