ThirdAge Health Close-Up: NPH, the Curable Dementia

By Sondra Forsyth

During 2004, when Alicia Harper was 69, her husband began to notice heartbreaking changes in the way his smart, vibrant wife was behaving.

“She was becoming disconnected,” Nildo, now 83, says. “She was confused and always forgetting things. And when we would visit with any of our four children and eight grandchildren, she didn’t seem to feel anything for them. I just assumed she had the beginnings of Alzheimer’s disease. I took her to several doctors and they thought so, too.”

Alicia’s cognitive decline worsened as the years passed. She also began to have trouble controlling her bladder. Nildo, a retired physics and math professor, became her round-the-clock caregiver. “I couldn’t believe that this woman who is the love of my life was slipping away from me,” he says. “She had a long career as a teacher of secretarial science and as the secretary at our church here in Orlando. Yet day by day, she was losing her intellectual abilities. She started saying, ‘Why am I in this bedroom? Where am I?’ And we had lived in the same house for 25 years.”

Because Nildo knew that Alzheimer’s is progressive and eventually fatal, he resigned himself to the fact that Alicia would never get better. Gone were the days when the whole family would gather around the piano while Alicia would play from memory the national anthems of the three countries where the Harpers had lived before settling in Florida – the Dominican Republic, Puerto Rico, and Mexico. “We had singalongs,” Nildo says. “It was a wonderful bonding experience. But it got so she would just stare at the piano as though she didn’t know what it was for any longer.”

Then in 2009, five years after Alicia first started to disappear into mental oblivion, a doctor who was treating her for diabetes began to suspect that Alicia might not have Alzheimer’s after all. She had cognitive decline, to be sure, but she also had a shuffling gait and a lack of bladder control. “That’s what we now know is the ‘triad of symptoms’ for a condition called normal pressure hydrocephalus or NPH,” Nildo says. At the suggestion of the diabetes doctor, Nildo took Alicia to an NPH specialist, Dr. Phillip St. Louis.

“In the classic clinical setting, the diagnosis of NPH is usually considered after the patient has seen anywhere from two to five physicians,” Dr. St. Louis says. “Dependent upon the time delay, the patient may present in relatively advanced stages of this disorder. In general, those patients who are bedridden and have an advanced form of dementia are less likely to respond to a treatment called cerebrospinal fluid diversion or CSF. Fortunately, Alicia was still a good candidate for the procedure.”

Dr. St. Louis, who is on the staff of the NPH program at Florida Hospital Orlando, performed a CSF trial over the course of three days with a temporary shunt and baseline testing including neuropsychological, physical therapy, and radiographic imaging.

“I was pleasantly surprised to see a significant improvement in Alicia during the trial,” Dr. St. Louis says. “I believed that the placement of a permanent shunt might indeed prove to be of benefit.”

According to Nildo, the result of the procedure was “a miracle.” He recalls that during Alicia’s third day in the rehab center, she told him she needed to go to the bathroom. “I was shocked!” Nildo says. “For years, she didn’t know when she needed to go. I would set the alarm for 3 a.m. and wake her up to prevent an accident. Then I would have trouble getting her to the bathroom because it seemed as though her feet were stuck to the floor. And when I tried to get her back in bed, I couldn’t always get her close enough and she would fall. Eventually, she needed a wheelchair. But there we were at the rehab center and she knew she needed to go. I got her up and she could walk! I could hardly believe my eyes.”

Not long after that, when Alicia was back home, the family gathered like old times and Nildo suggested singing the national anthem of Puerto Rico. He started humming what he thought was the tune and Alicia just laughed. “He wasn’t humming the right melody,” she says, sounding as delightful and bright as ever at 78. “I sat down at the piano and played a couple of stanzas from memory to prove him wrong. Everything came back to me as though I had never had NPH at all.”

Alicia says she doesn’t waste any time regretting the five years she lost to NPH. She focuses on the good times she now has going to church, traveling, and enjoying her family. “All 17 of us went to Disney World one year when they came for Christmas,” she says. “I didn’t need a wheelchair and when I looked at my children and grandchildren, I could feel love for them the way I used to do before I got NPH. Nildo is right to call the cure a miracle. I got my life back.”

Nildo starts to speak and then pauses to regain his composure. Finally he manages to say, “And I got my wife back. We will have our 59th anniversary soon. I’m so grateful to Dr. St. Louis for making it possible for Alicia to be present for the celebration, not just physically but mentally and emotionally. I would urge anyone who has a loved one with that triad of symptoms to get a test for NPH. It might not be Alzheimer’s after all!”

Sondra Forsyth is Co-Editor-in-Chief of ThirdAge.com