Losing your balance and losing your memory are frightening symptoms, but not all outcomes are as dire as you may think, doctors say.
The cause is unknown, and it’s often undiagnosed.
In the United States, studies estimate some 700,000 people have NPH but only about 20% have been correctly diagnosed.
One such person is retired Canadian engineer John Searle, who started falling down and losing his memory at age 69. Doctors did not determine a definitive diagnosis as he began to need a walker and a wheelchair.
“You start thinking, ‘Is this it?’” he said. “There was no hope. I was sitting in the window watching life go by.”
Early diagnosis is critical
NPH is an accumulation of excess cerebrospinal fluid in the brain’s ventricles. It’s actually an adult version of hydrocephalus, a word derived from the Greek words for water and head, that occurs among newborns.
If left untreated, NPH causes difficulties with movement, memory, cognition and bladder control, symptoms similar to those of degenerative diseases such as Alzheimer’s, Parkinson’s and dementia.
The most common treatment for NPH is the insertion of a brain shunt to drain the fluid. Most people see improvements after shunt surgery, but the chances grow smaller as the condition advances, so early diagnosis is critical.
After Searle got a shunt, his mobility and memory improved. He takes walks, works out with a personal trainer and has started traveling again.
“NPH is a condition that is not well understood yet,” Fasano said. “This is a disease that is probably more common than we think it is, and this is a disease that can be treated very well, with a huge dramatic change of quality of life for these people.”
But Fasano and other experts caution that while misdiagnosis is a problem, patients with Alzheimer’s or Parkinson’s should not have false hope, especially if neurologists have provided their diagnosis.
Canadian Gilda Katz saw doctor after doctor before she was diagnosed with NPH, and she had a shunt inserted at age 67.
“My earliest symptoms had been a sensation like that of walking on gum and progressed to an inability to walk without a walker, uncontrolled urination, difficulty concentrating and understanding complex ideas and trouble remembering things,” she said.
Six years after getting her shunt, she said, “I feel in many ways like my old self, but it has taken a lot of hard work.”
NPH patient John Thompson, 57, underwent multiple surgeries and now has a programmable shunt that is adjustable from outside his head with specialized magnets.
He still has trouble with his walking and balance, issues believed linked to the length of time his NPH went untreated.
“Living with NPH definitely takes an emotional toll. I do have days when I feel really, really down and wonder if this will ever get any better,” he said.
“As my neurologist says, ‘You may not walk well, John, but you can still walk.’”
Reading the news today (oh, boy)
When it comes to navigating the tricky waters of what studies to believe and which ones to toss aside, Rebecca Edelmayer, Ph.D., the director of scientific engagement at the Alzheimer’s Association, offered some advice. “There’s nothing wrong with reading science news and research. It is important that people are trying to base some of their decisions about their lifestyle choices in evidence-backed research.
“[Remember to] really look for some of the details and whether these studies were done in large, diverse populations, and whether or not the studies may be very interesting, but still very preliminary. Maybe some of the research is being done in cells or in mice and have not yet actually moved into human clinical studies.”
Dr. George Hennawi, medical director of geriatric services for MedStar Health, also offered some panic-preventing pointers.
“I highly recommend and encourage people concerned about their memory to stay active, stay socially engaged, eat a healthy diet — specifically, a Mediterranean diet — manage their chronic illnesses such as diabetes, high blood pressure, high cholesterol and heart disease,” he told Considerable. “Try to engage their brains in new tasks and learn new habits or new skills. Edelmayer also warned against any kind of dietary supplement that’s marketed as being good for your brain health.
“There are some myths out there such as aluminum, aspartame, flu shots, dental fillings, spices as possible causes of dementia and memory problems,” Hennawi continued, “but there is no scientific evidence to support that.”
In the same vein, Edelmayer also warned against any kind of dietary supplement that’s marketed as being good for your brain health. Just like diet pills aren’t actually an effective way of maintaining a healthy weight, you need to commit to an overall heart/brain health routine instead of relying on a pill or supplement to do so.
The Alzheimer’s Association is leading a very large clinical trial called the U.S. Pointer Study to look at exactly how a better management of cardiovascular health, diet, exercise, and social and cognitive stimulation reduce one’s risk of dementia.
The study will take a look at exactly how changes in one’s lifestyle affect the brain, and will hopefully lead to definitive steps to prevent memory loss.
In the meantime, healthy diet, exercise and socializing are safe bets to improve your quality of life — and very likely to stave off dementia.
And unless you’re battling acid reflux or indigestion, don’t panic about laying off the spice just yet.