‘Are you going to tell them or should I?’
Mom said nothing.
It was early June of 2022, a few months after my eldest brother’s wedding, and my family had gathered for lunch in Brooklyn, near the apartment he had just moved into with his wife. My parents had organized the meal after realizing there was a rare weekend all three of their sons would be in New York. I assumed it was meant to be celebratory. Instead, it was the moment my dad delivered the news no child ever wants to hear.
“It’s Alzheimer’s.”
My mom was 61 years old. She had been struggling for years with mysterious symptoms that no doctor could explain. She’d ask me how my day had been, sometimes three or four times in one evening. She sometimes wouldn’t remember that she’d fed the dog. She had debilitating migraines and was often unsteady on her feet. We had spent countless hours fretting over what could be wrong, but not once did I think it could be early-onset Alzheimer’s. That diagnosis belongs to other families, I thought. Not ours.
Dad was sobbing, but I kept quiet, looking at my brothers and sister-in-law. All of us were still in our twenties, but it was as if the news had aged us; we were caregivers now. Alzheimer’s gave us a name for the thing that had troubled us for years. In the months that followed, all we could do was pray: pray for time, for a cure. I never expected our prayers to be answered.
But a year ago, my family experienced a miracle.
In January 2023, my mom went into the hospital to have a small surgical procedure, meant to patch a leak of spinal fluid. Instead, it cured her of all her symptoms. In just a few weeks, she became the person she had been 20 years prior: a healthy mother of three, who makes my dad howl with laughter. It turns out she never had Alzheimer’s. It was a misdiagnosis.
As a family, we are still trying to make sense of how this happened. My mom had been treated in New York City’s best hospitals, by world-leading authorities on Alzheimer’s. But somehow she had fallen through the cracks of a fragmented medical-research system, which failed my mom—then saved her.
My mom’s misdiagnosis was 20 years in the making.
The story begins in the early spring of 2001, when my dad received a panicked call. Mom was on the side of the highway, vomiting; she’d been driving home when she suddenly experienced a wave of nausea and a debilitating headache. Her doctor said it was a migraine, but a few months later, Mom lost hearing in one ear. She was diagnosed with Ménière’s disease, a disorder of the inner ear.
And so Mom adapted, restricting her movement to avoid triggering vertigo, becoming the only fortysomething she knew to wear a hearing aid, taking medicine daily to manage her headaches. For years, she tried to shield me and my two older brothers from her suffering. Somehow, she managed to be devoted and steady, shepherding three boys through years of soccer practices and rehearsals for school musicals, waking up early every day to make our packed lunches. She was never late to church, to appointments, to anything.
But hanging over my childhood was the perpetual worry—the fear—about Mom’s mysterious health issues. We would overhear hushed phone calls with her doctors. I felt a pang of anxiety each time she had to spend an evening in bed, instead of at the dinner table with us.
Then, in 2010, my dad looked down our hallway, and saw my mom crawling towards him, crippled by nausea, pain radiating across the back of her skull. It terrified him. This must be more than a migraine.
Mom’s neurologists at Columbia University ordered an MRI, and diagnosed her with a Chiari malformation, a structural defect where the brain is pushed through the opening at the base of the skull. It was caused, they thought, by a leak of cerebrospinal fluid—probably a result of the epidurals she had while giving birth. The leak had lowered the pressure in her skull to the point that her brain had sunk. But they couldn’t identify the source of the leak, so were unable to treat it.
I started high school in 2015, and around that time, I began to notice the quiet dislocation of my mom’s mind. When we cooked dinner together, she would have trouble following recipes. She’d stare at her calendar for long stretches of time; making sense of it seemed to require more effort than usual. She started to repeat herself. By the time I left for college in Rhode Island, the phrase “You already asked me that” had become a common refrain in the house I grew up in, but at first, we blamed her, telling her she needed to pay more attention. I’d feel frustrated whenever she wanted to know, again: What does your friend Anthony do? Who do you live with up in Providence?
The strange thing was, her intellect was untouched by her illness. I’d tell her about my coursework, and we’d have debates about everything from Zen Buddhism to Sigmund Freud. But her emotions were oddly flattened; she rarely laughed anymore, or cried. There was the fatigue, too; by dinnertime, she could hardly hold a conversation. Most nights, she’d be asleep by 8 p.m.
My brothers were just starting to build their adult lives, and I was on my way to graduation, but if we looked too hard at the future, it seemed so precarious. What would it mean for our mom’s symptoms to remain unresolved? What would it mean for them to get worse? At my brother’s wedding in 2022, in the middle of my senior year, I watched her fade as the night progressed, and wondered whether she would even be present at mine.
Mom had a doctor for headaches and another for hearing, and yet another for anxiety. She saw at least five semi-regularly, all of whom specialized in one of her symptoms. No one paused to wonder if they all had the same root cause.
It was worry about her memory that pushed my parents, in April of 2022, to turn to NYU Langone Health’s Center for Cognitive Neurology, seeking treatment from the most elite doctors they could find. My mom was tested extensively—and two months later came the diagnosis, with the finality of a punctuation mark. Alzheimer’s. When it hit her that there was no cure, my mom was bedridden for three days.
All the doctors could do was offer treatment that might slightly delay her memory loss. There were two routes. The first was the drug lecanemab, which had received FDA approval in July 2023—only five months earlier. It had been shown to slow the progression of Alzheimer’s by about five months, but required biweekly infusions and came with risks of brain swelling and bleeding—both of which could be fatal. (These extreme side effects led the European Union to deny the drug a license this summer.)
The second option was to join the Viva-Mind study, a nationwide Alzheimer’s clinical trial for the drug varoglutamstat, which was also thought to stabilize memory loss. My parents, frightened by the controversy surrounding lecanemab, began the process of enrolling her.
While she waited to begin—it took a year and a half—my family entered a surreal period of suspension. Dad retired at 65, to spend more time with Mom; part of me wanted to travel after graduation, but part of me wanted to spend every day with her. There will come a time when Mom will not recognize you. Just the thought could bring me to tears. While starting my first job in the city, I watched her live a life that was coming to an end, and I felt a deep, renewed wellspring of love for her—a fiercely protective love. The kind she had always showed me. Her doctor had told her to keep exercising, so she aimed to ride our stationary bike every day, and while home for Easter in 2023, I saw a note she had stuck on the handlebars: “Pedal harder, for your boys.”
By the summer, my parents had sold the house I grew up in and downsized to an apartment, trying to conserve as much money as they could in preparation for the yearslong, at-home care my mom was one day going to need—care that could bankrupt them. Leaving my childhood home for the last time, I was devastated but resolute, like my dad. We will do whatever it takes to care for Mom.
The clinical trial felt like Mom’s last hope.
As they settled into their new apartment, my parents found out more about how the trial would work. To test whether varoglutamstat was having an effect, the researchers would need to periodically extract some of the cerebrospinal fluid surrounding my mom’s brain. Then came yet another shattering pronouncement: The doctors had always suspected that my mom had a leak somewhere in her spinal system—and now they not only confirmed this fact, but also explained that it made extracting fluid impossible. Her system was just too fragile. She couldn’t participate in the trial.
In the weeks that followed, my family shifted from focusing on solutions to being consumed by despair. Just saying goodbye to me on the phone would bring Dad to tears. But a few weeks later, the doctor called to say there was one option left. Very recent medical innovations made it possible to find—and fix—the leak, which would allow my mom to participate in the trial. It wouldn’t buy her much time, but even one extra day of lucidity would be precious.
And so, five months later, two doctors injected dye into mom’s spinal fluid. They traced the path of her entire spinal system to locate the leak, and found a weak spot, where cerebrospinal fluid was draining directly into a vein. This small spot in the middle of her back turned out to be the root of all her symptoms—but the doctors didn’t know it yet.
It was another month before a surgeon inserted a probe through the femoral vein in her leg, fed it upward toward the shoulders that had borne the weight of so many years of disease and anxiety—and sealed the leak.
Two weeks later, I visited home, and found Mom more alert than she had been in years. There was no absent look in her eyes. As the day went on, I waited for her to start fading—but she was still wide awake at 10 p.m.
After three weeks, her vertigo was gone, and her physical therapist told her she didn’t need treatment anymore, because she no longer had any balance problems.
After four weeks, she told us she felt 20 years younger. She had stopped taking migraine medication, and hadn’t had a single headache. I spent a weekend with her, and she playfully chastised me for telling her the same thing twice. Afterward, my brother texted me, putting words to the restrained optimism we were all starting to feel: “I think Alzheimer’s might be a red herring.” None of us said this out loud. Speaking it risked breaking the spell.
After six weeks, her problems with memory were completely gone.
And eventually, Mom’s neurologist confirmed: She did not have Alzheimer’s. The surgeons who fixed the leak were shocked. They had never seen a recovery like it.
We later discovered that, a year before Mom had her procedure, Cedars-Sinai Medical Center had published a newsletter subtitled “Physicians Treating Dementia Should Look for Cerebrospinal Fluid Leak—A Treatable Cause of an Otherwise Incurable Condition.” The study had examined 21 patients who presented with headaches, significant fatigue, and a diagnosis of Chiari and dementia; nine of them were found to have a leak, and repairing it had entirely cured their symptoms.
In my mom’s case, so many specialists, at so many different hospitals, treated her symptoms as separate, missing the underlying cause. But we resigned ourselves to blaming nobody, not a doctor or institution, for it was the medical system that misdiagnosed her, before it saved her life. More than anything, we feel grateful that a scientific breakthrough came at just the right time; that the real cause of her suffering was found.
It’s been a year since Mom’s procedure, a year since my family was restored. We’ve lingered at the dinner table and danced at a Maggie Rogers concert; my parents took a trip to the Galápagos, where they had dreamed of going before she got sick. Now, when she laughs with my dad, they look young again.
It’s a rare thing to see life restored, to have your grief turned on its head. But in recent months, Mom has been haunted by a feeling of lost time. For years, everything was a blur of doctors, fatigue, confusion, and fear. She’s troubled by the moments she missed.
She also worries about how many Americans are experiencing the same tragedy—and waiting for the same miracle. How many have been misdiagnosed with an incurable disease that robs them of their memories, their energy, their freedom? How many are receiving dangerous infusions right now, or wilting away in nursing homes? How many could be cured?
But through it all, we never lost sight of who Mom was—who she is. In the depths of her illness, when she was struggling to grasp certain memories, my dad would smile, squeeze her hand, turn to me and my brothers, and tell us stories about her past, about her summers at camp in the middle of Maine. She was a sharpshooter, he’d say. What else did you do up there?, he’d ask, before prompting her: canoeing, archery, swimming. There was an end of summer dance where she hung out with her girlfriends instead of the boys.
Maine was where we went, as a family, after Mom was brought back to life. She was cured last January, and as spring emerged, my family journeyed northward together, driving the path Mom had driven countless times before, every mile bringing her closer to her old self. Every now and then, I would gaze at my dad through the rearview mirror and catch him looking out the window at the spruces and budding oaks—one hand clasping my mom’s, the other held to his face.
“This feels like a dream,” he said.
