Voices from Our Community: Milton Newman Shares His Story of Normal Pressure Hydrocephalus

Fog is Lifted After 15 Years of Confusion and Misdiagnosis

Milt Newman’s retirement was not living up to expectations due to a slow progression of seemingly inexplicable mental and physical decline. What no one knew was that Milt, then 73, was suffering from Normal Pressure Hydrocephalus (NPH), a treatable neurological disorder in which excess fluid accumulates in the brain.

Of the 1 million people living with hydrocephalus in the U.S., an estimated 375,000 people, mostly 60 and older, suffer from NPH. Because the symptoms closely resemble Alzheimer’s and Parkinson’s disease, an estimated five percent of those with NPH may have been inaccurately diagnosed with one of these conditions or some other type of dementia. Worse yet, even more are left untreated, with their symptoms attributed to aging. In Milt’s case, it was repeatedly misdiagnosed for over 15 years.

His wife of 60 years, Phyllis, recalls some scary days, like the time she found Milt face down in the backyard. She also noticed some activities which had always been routine for Milt became frustrating because he couldn’t concentrate for more than a few minutes at a time. In 1989, Milt voluntarily left his dental practice when, he felt that he could not perform to the very best of his abilities.

Phyllis persisted, taking Milt to see several doctors over the years, but his condition was always attributed to something else – “mini” strokes, high blood pressure, or dementia. They were told by one doctor fairly early on that nothing could be done. In 1995, Milt underwent triple bypass surgery. The cardiologist who was treating him performed a CAT scan and noticed enlarged ventricles in his brain – an indication of excess fluid – but NPH was not diagnosed. Milt and Phyllis eventually resigned themselves to living with the condition and enjoying their lives as best they could.

By December 2002, Milt’s health and quality of life began to deteriorate dramatically. He was exhibiting the triad of symptoms characteristic of NPH – incontinence, difficulty walking and dementia. Phyllis, a retired mental health therapist, was afraid to leave Milt alone because he was falling frequently. Their three grown children saw what was happening to their father and suggested to Phyllis that she research nursing homes because they feared that help would be needed in the near future.

“Milt had lost a lot of confidence by that point because he was making frequent mistakes,” said Phyllis. “He couldn’t remember things he had to do or where things were, even when they were in the next room.”

But the following spring, on a routine visit to Milt’s primary care physician, he couldn’t get up from his chair when called for his appointment; it was as if his legs and feet were frozen in place. The doctor ordered a CAT scan and Milt was diagnosed with NPH.

Phyllis was referred to the Barrow Neurological Center in Phoenix and Harold Rekate, MD, a leading neurosurgeon who surgically implanted a programmable shunt into Milt’s head. Nine months after the initial shunt placement, overcoming several blood clots in his brain, and one reprogramming of his shunt, Milt began to feel and function better than he had in years.

Today, Milt is once again doing the activities he had given up. He is currently preparing for a theater performance, driving again, singing tenor in his choir, on the board of directors of his temple, and planning his 60th anniversary cruise with his wife, children and grandchildren. This is what retirement is all about.

“The difference in how I feel is like night and day,” says Milt. “Now I’m living; I wasn’t living before. I waited for Phyllis to do everything for me. Now I can do things I couldn’t do before.”