In the United States, studies estimate some 700,000 people have NPH but only about 20% have been correctly diagnosed.
In Canada, one in 200 people over the age of 55, or more than 57,000 people, is believed to have NPH.
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.”
But things took a turn for the better when Dr. Alfonso Fasano, a neurologist in Toronto, diagnosed him with NPH.
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.”
Some research indicates that of the estimated 5.2 million people in the United States diagnosed with dementia, 5% actually have NPH.
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.’”