PITTSBURGH — Mary Mehl feels so lucky to share a laugh with her husband, Joseph Mehl, when two years ago such moments with her high school sweetheart were slowly fading away.
“Just to get from the car to the grocery store was like climbing Mount Everest,” Mary Mehl said.
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Joseph Mehl was 66 and starting to shuffle his feet and forget little things.
“Maybe in the span of three months, he aged 20 years,” his wife said.
Finally, he went to the doctor and heard the diagnosis they were fearing: Parkinson’s. But a few weeks later, the couple went for a second opinion.
“Dr. Weissman took one look at Joe and said, ‘You don't have Parkinson’s,” Mary Mehl said. “I think you have normal pressure hydrocephalus, which sounded worse than Parkinson’s.”
Normal pressure hydrocephalus is an abnormal buildup of cerebrospinal fluid in the brain's ventricles, or cavities. In other words, the body isn’t absorbing enough brain fluid, causing Parkinson’s or Alzheimer’s-like symptoms, such as unsteady walking and dementia-like behavior.
However, unlike Parkinson’s or Alzheimer’s, normal pressure hydrocephalus is treatable. According to the Hydrocephalus Association, 80 percent of cases remain unrecognized.
Dr. Nestor Tomycz, Joseph Mehl’s neurosurgeon who works at Allegheny General Hospital, said part of the problem is that doctors only started understanding hydrocephalus about 40 or 50 years ago. He added that since the treatment is so invasive, not every patient can be helped.
“We don't cure it per say, but we can control a lot of the symptoms,” Tomycz said.
According to Tomycz, the disease can be caused by a head injury or develop for no reason at all like in Joseph Mehl’s case.
To see if Joseph Mehl would respond well to treatment, doctors first ran an invasive spinal test to drain some of the fluid.
“Suddenly he was walking. He wasn't shuffling like a 200-year-old man,” Mary Mehl said.
Tomycz went ahead with brain surgery and inserted a shunt to drain the fluid every day.
“I was able to think clearly, walk. I was able to talk,” Joseph Mehl said.
While the couple’s story came with a happy ending, it also comes with a warning to other families.
“If it's a diagnosis that you can't bear, don't give up,” Mary Mehl said.
A recent study estimates that 700,000 older Americans are living with normal pressure hydrocephalus.
Tomycz said if anyone had doubts about a diagnosis, he or she should talk to a neurologist and not be afraid to get a second opinion.