This Man Battled Dementia for 20 Years Before Finding a Solution
For two decades, Stanley White battled mental fog, falls, and urinary incontinence. Finally, he got a diagnosis—a little-known—but treatable—brain disorder called normal pressure hydrocephalus.
Courtesy Stanley White
Suddenly, he fell
Stanley White was on a morning jog near his home when the first symptoms hit. It was 1986, and the retired aerospace engineer was running a familiar route, from his home in the hills of San Clemente, California, down to the end of a local pier and back.
“I fell. In the street. Got bloody knees,” White says. “And I thought, ‘What the hell is going on here? Careless, I guess.’ And I got up, and I went a little farther, and I fell again. ‘Uh, this ain’t right.’ So I went back home and called my doc,” he says. (Here’s how to prevent falls.)
White was only in his mid-50s at the time and knew of no health problems that could explain his falls. His doctor, however, did not share his curiosity about what was happening. “He said something like, ‘Welcome to old age,'” White recalls. “Not very encouraging.” (Here are some common age-related health problems.)
White’s condition continued to deteriorate, and his mobility issues were joined by other symptoms. Yet despite continuing to search for answers, it would be another 20 years before he knew what was wrong: a mysterious and widely underdiagnosed condition called normal pressure hydrocephalus (NPH).
NPH is a brain disorder that can masquerade as other common age-related health problems. It’s also known as “treatable dementia,” according to the Hydrocephalus Foundation. The underdiagnosed condition affects more than 700,000 adults in the United States, but less than 20 percent receive an accurate diagnosis. (Here’s the difference between dementia vs. Alzheimer’s.)
After two decades on the wrong end of that percentage, here’s White’s journey as he unraveled his health mystery.
About a week after his first symptoms showed up, White and his wife went to an anniversary party. “We got up on the dance floor, and it was the first time it happened to me: Suddenly I was immobile. I understood in retrospect why they call it magnetic feet. I could not move my feet from the floor.” Mobility problems are one of the three primary symptoms of NPH, including frequent falls as well as “magnetic feet,” a reference to someone’s feet seeming magnetized to the floor.
White’s mobility wasn’t the only issue. “Neurologically, things were happening that shouldn’t have been happening,” he says. “My thinking was getting fuzzy. My fine motor skill was going. Things like buttoning buttons and tying shoes, anything that required fine motor control, went to hell.” (Try these memory exercises to keep your brain sharp.)
Looking back, White has found a record of his disease progression in his penmanship, especially in his checkbook register. “You can see in the entries over time how the handwriting had just degraded,” he says. “It went from a neat engineering script to a childish scrawl.”
Twenty years of no answers
White’s issues with motor control and mental clarity were also compounded by a third major symptom: urinary incontinence. Any of these symptoms could be overwhelming on its own, and together they had a major effect on White’s quality of life. All the while, his search for answers continually came up empty.
“I went through 20 years of frustrating interactions with doctors of every stripe,” he says. “Twenty years of downhill.”
He spent two decades trying fruitlessly to understand what was happening to him until he happened to see a note written by a radiologist on one of his MRI reports.
“Written in light pencil it said, ‘Enlarged ventricles may suggest NPH.’ Oh my heavens. At that time I really didn’t know anything about ventricles. So I asked my neurologist, and he said, ‘Oh yeah, I’ve heard of it; I don’t think it’s really a disease. No, you don’t have it.’ So he dismissed it. But I had a clue.”
What is normal pressure hydrocephalus?
Buoyed by hope, White began to research NPH. “I started reading through the [case study] abstracts,” he says, “and every damn one of them, as far as I was concerned, described me. I felt I had found a gold mine.”
Normal hydrocephalus pressure is caused by an excess of cerebrospinal fluid (CSF) in the brain’s ventricular system. This can happen in young children as a birth defect, or it can happen later in life due to factors such as a tumor, an infection, or a brain injury. There is also another form, known as idiopathic NPH, that tends to occur in older people. Idiopathic means the cause is unknown.
It’s unclear what triggers the condition, and what exactly is happening in the brain to cause these symptoms, explains Abhay Moghekar, associate professor of neurology at Johns Hopkins University in Baltimore.
“If you look at a scan, you do see more CSF in the brain of someone with hydrocephalus,” Dr. Moghekar says, “but the mechanism by which it accumulates is not quite well-known.”
Patients with hydrocephalus tend to have at least one of the condition’s three classic symptoms: mobility problems, mild dementia, and urinary incontinence. Idiopathic NPH is difficult to recognize in older patients because its symptoms mimic common ailments that already affect the elderly population, Dr. Moghekar notes. In some cases, including White’s, the symptoms of NPH are mistaken for Alzheimer’s or Parkinson’s.
An open-and-shunt case
White noticed that a large group of researchers who focused on NPH were at the University of California Los Angeles (UCLA), which is relatively close to him. He contacted a UCLA researcher about his condition, and two weeks later he was in his office.
“He watched me and said ‘Yeah, I do think you have hydrocephalus,'” White recalls. White was recruited to join a research project, in which doctors drained away his excess CSF. “All my symptoms went away,” he says.
The medical team then removed the drains and sent him home with a notebook to keep a journal about the return of his symptoms. After a month he submitted his notes for their research, and he then got a longer-lasting treatment: a ventriculoatrial shunt, which drains CSF from the brain into the atrium of the heart.
“I had this procedure 14 years ago, and I’ve had zero problems,” White says of his shunt. “Absolutely zero problems. I just couldn’t be happier about the way it came out.”
A shunt isn’t suitable for all NPH patients
That is not a universal experience—a shunt isn’t suitable for all patients, Dr. Moghekar says, and even when it is, the benefits sometimes dwindle after a few years, for reasons that aren’t entirely understood. There are also some neurologists who doubt the effectiveness of treating NPH with a shunt, Dr. Moghekar adds.
“One of the reasons why, I think, is there has never been a big, double-blind, randomized, controlled trial of shunt surgery in hydrocephalus,” he says. Researchers have made a dent with smaller studies, he notes. Dr. Moghekar is part of a large research group that did a pilot study on around 30 people. Researchers have requested federal funding for a larger study, he adds, “but it’s a slow process, gathering this gold-standard evidence.”
Once that evidence is available, though, Dr. Moghekar thinks awareness will “automatically increase, both among the physician community and neurologists, but also the general public.”
It’s important for NPH patients to undergo screening before shunt surgery, Dr. Moghekar explains, to help weigh the likely risks and benefits for each individual case. In the right patients, though, this relatively simple procedure seems to offer dramatic benefits.
Life after normal pressure hydrocephalus
White now serves as a peer counselor for the Hydrocephalus Association, helping raise awareness of the disease as well as helping counsel people who struggle with it.
He’s worried about potentially hundreds of thousands of Americans living with undiagnosed NPH, especially those in poor or rural communities, who may have less access to neurologists and neurosurgeons familiar with NPH.
After spending 20 years of his life battling NPH, White is passionate about helping others avoid that fate. While shunt surgery may not work for everyone, there are still countless people who could benefit from it but don’t know it, he says, and he wants to reach as many as he can.
“It was a 40-minute surgery,” he says, “and I got my life back.”