Herbert's wife of 51 years, Betty, first noticed it about 2 ½ years ago: Herbert was shuffling his feet when he walked. Herbert was aware of it, too, and although he tried he couldn't seem to pick up his feet.
A few months later the couple was traveling and Herbert bought a cane. Once he started using it, "I couldn't walk without it," he said. "It got so bad at its worst that it was impossible for me to even wipe my feet on a mat. It was like my feet were glued to the floor."
At around the same time, this North Carolina father of three, grandfather of six, and great grandfather of two also realized that his memory was getting bad. A carpenter by trade and by hobby, Herbert was no longer able to build the birdhouses and children's toys that he enjoyed making for his family.
"I was against him using any tools," said Betty, whose worries about her husband's safety were increasing. Herbert couldn't remember the names of people he had known for years. He couldn't remember how to lock the car doors. He began to have problems with incontinence. He couldn't take the long walks the couple enjoyed anymore. "Every step he took, I took," Betty said.
Then one day in January 2005, Herbert saw an NPH ad on TV featuring Bob Fowler. "I saw how he walked and I was pretty sure I might have what he had." Herbert's daughter, at her home in Texas, had seen the same commercial. His son in Florida got online immediately and went to the LifeNPH™ website and printed off the information his dad needed and mailed it to him.
Herbert called his family doctor and asked for a referral to a Neurosurgeon whose name was on the website. The family doctor scheduled an MRI and told Herbert he'd need to see a Neurologist next. Herbert took the MRI to a Neurologist, who said he would diagnose Parkinson's except there were no other classic symptoms present, except for the gait and memory issues. He told Herbert it was like his feet and legs forgot how to walk. The doctor sent him to a Neurosurgeon, who recognized on the MRI the enlarged ventricles in Herbert's brain that are one of the hallmarks of NPH.
Before he ran the lumbar puncture test that would confirm his suspicions of NPH, the doctor had his new patient seen by a physical therapist. "He had set up an obstacle course for me with blocks that were about 8 inches high that I had to step up onto and then over," Herbert explained. "Even though he held my belt and I used my cane I could hardly lift my foot up. Without him, I couldn't do it at all."
Then Herbert had the lumbar puncture test where doctors removed approximately 5 teaspoons of fluid. Forty-five minutes later, "I felt wonderful!" he exclaimed. "I walked to my room, changed my clothes." Twenty-four hours later he repeated the obstacle course with the physical therapist, but this time he needed no help and no cane. The effects lasted 72 hours. But the diagnosis of NPH had been confirmed and Herbert was scheduled to have the CODMAN® Programmable Valve implanted the following week.
On Wednesday, March 16, 2005 Herbert got his life back. A four-day stay in the hospital was followed by more physical therapy, but he's had only improvement, no further problems, with his gait, his memory, or any incontinence.
"I'm so happy to have it," Herbert said of the valve. "I can lift things, I can walk distances. I'm trying to catch up on the projects around the house that I couldn't do." Recently Herbert and Betty helped an elderly friend move out of her home and into an apartment. And Herbert is nearly finished building a child's rocker his daughter-in-law requested. "I'm doing great!" he said.
What's the best thing that's come out of this diagnosis and surgery? For Betty, "to see Herbert be able to walk again," she said, adding, "This is one of God's miracles and prayers answered." And for Herbert, "I know it sounds ridiculous, but just to be able to wipe my feet on a mat."
While most experts say that approximately 375,000 people have NPH, estimates have ranged from about 200,000 to 750,000 cases of NPH. Hospital discharge data shows that only about 11,500 cases a year are currently diagnosed and treated with surgical implantation of a shunt. Since NPH is often mistaken for other conditions, most cases of NPH go unreported and many are left untreated. Only a specialist can properly diagnose NPH. Surgery is not for everyone. There are potential risks and complications; recovery may take time.DSUS/COD/1014/0194