I have delivered ALS diagnoses. I know the exact weight of those words, the way the room changes when a person hears them, and the composure and presence a physician is trained to maintain. I spent nearly a decade in medical training learning how to sit across from someone and explain, gently but honestly, what their future might look like with a progressive, fatal disease that today has no cure.

Then I found myself where I never expected to be: on the other side of that conversation.

I grew up in South Florida and was the first in my family to pursue higher education. I became a neurologist and landed my first attending position at UC Davis. I was seeing patients, conducting research, and finally beginning to live the life I had worked so hard to build. I cooked and baked for everyone I loved. I swam, practiced yoga, and biked everywhere.

Then, in the fall of 2023, I noticed weakness in my right hand. Then my left. Then my voice changed.

As a neurologist, I knew what the signs might mean. But it still took two years before I received a formal ALS diagnosis. That is unfortunately the norm for this condition for several reasons: unfamiliarity with the signs and symptoms, discomfort with the finality of the diagnosis, or just the difficult process. Even for the well connected and well insured, it can take several months of waiting for tests and shuffling around to various specialists to get answers, as anxiety eats away at your mind and spirit. During this period, I continued working full time while harboring this great uncertainty.

ALS is a neurologic disease that causes the loss of functioning motor neurons of the brain and spinal cord. The loss of these specialized cells causes weakness and then paralysis of all of the muscles of the body under our control — including muscles that allow for breathing, speaking, and swallowing. It spares the muscles of the heart and gut. It typically affects older adults, but it can happen at any age.

What started as weakness in one thumb has now spread to all four limbs. I can no longer examine patients or perform procedures. My hands are too weak to cook, bake, write, or type. My legs were the most recent to give out, and I can no longer stand or walk. I now receive all of my nutrition through a tube in my stomach because I can’t swallow. My voice has completely disappeared. I rely on my partner and family for nearly all of my physical needs. I now communicate with a specialized tablet that has cameras which track my selections made by my eyes on an on-screen keyboard. That is also how this article was written.

Though much of my time and energy is now devoted to adapting to and surviving the challenges ALS brings, I have also found a new role: using my “voice” to advocate for policies and practices that protect and improve the lives of people living with this disease.

The irony is that through this experience I have accumulated countless observations that I wish to share — even as my channels of communication have become profoundly limited.

Losing the ability to speak and move has taught me how quickly society conflates physical dependence with diminished personhood. People who do not know me often direct questions to my family members instead of to me. Even within loving families, preserving autonomy requires intention as caregiving needs increase. Most people agree in principle that patients should direct their own lives and medical decisions. In practice, honoring autonomy is more difficult.

For health care professionals, protecting patient autonomy does not always come naturally. It must be taught early and reinforced throughout training. It means addressing the person with the disease before turning to those accompanying them. It means recognizing that needing assistance with eating, bathing, or communication does not diminish an individual’s capacity to express preferences, values, and goals.

At a systems level, autonomy must also be protected through laws, policies, and enforcement so that disability never becomes an excuse to sideline the voices of those most affected.

What has surprised me most is how adaptable I have been as these changes arrive. I have found new activities and interests such as playing chess online against opponents from around the world. I have tried to stay engaged with the things I can still do like reading and writing. And I fully direct my own care, requiring me to continuously work through new challenges as they arise, often on a weekly basis.

Of course, I have grieved many losses, but remaining hopeful has also been easier than I would have expected at times. I see this same resilience in many of the people with ALS whom I have met.

Continued research at every level of understanding ALS is essential. We still lack a basic understanding of the disease, and there is currently no meaningful treatment to slow or stop the paralysis it causes for the majority of those affected. At the same time, there are critical questions about how best to care for people with ALS and support their families. Finding answers requires stable and sustained funding and support for the researchers who dedicate their lives to this work.

What I cling to is the knowledge that science is moving. Researchers are closer to understanding ALS than at any point in the history of this disease. New therapies are entering clinical trials. Genetic targets once considered theoretical are now being addressed through precision medicine. As a neurologist, I find this progress remarkable. As a person with ALS, I find it urgent.

Until we have a cure, people living with ALS need more than hope for the future. We need a health care system and a society that recognize our dignity, protect our autonomy, invest in research, and ensure that our voices remain central in the decisions that shape our lives.

Christopher Campos, D.O., is a neurologist and assistant professor at UC Davis Health in Sacramento. He was diagnosed with ALS in 2025.