Jerry
Jerry was a small business owner in California before he retired in 2000. At age 71, he was ready to trade his life behind the counter for mornings on the golf course and evenings on the dance floor. He enjoyed driving and frequently visited other cities near his own California home. His early 70s brought with it Type 2 diabetes and congestive heart failure, but he remained upbeat and active. However, late in 2004 he began to have trouble walking. The first time he really noticed it was on a family trip, a cruise: "I couldn't walk from my cabin to the dining room," Jerry said. "I couldn't lift my legs and I had no balance." Once home, he began using a cane and eventually progressed to needing a walker. He could no longer drive, golf, or dance, and spent more and more of his time sitting at home and watching television.

"His doctors told him they suspected Parkinson's, Alzheimer's, or complications from the diabetes or other health issues he had," said Jerry's daughter, Toni. His symptoms worsened, she continued – he became forgetful and he could barely write anymore. MRI's of his neck and spine late in 2005 came back normal. "We thought we were losing him," she said, speaking for herself, her brother, his wife, and their three children.

Then, in December of 2005, Toni saw a commercial that would change Jerry's life. "I was watching television and saw an ad featuring a man who walked exactly like my dad, feet spaced apart, shuffling," she said. It was Bob Fowler, spokesman for the Life NPH awareness campaign. Toni logged onto LifeNPH.com, played the commercial again, and read every article and personal story. She felt so sure that this could be the cause of his symptoms that she sent for information and brought it to her father's next doctor's appointment. "I expected a negative reaction, but instead I was told that while it was improbable that he had NPH, it was possible," Toni explained. "That was all the encouragement I needed to ask his primary care physician to order an MRI of his brain and look specifically for the signs of NPH, to at least rule it out."

The MRI was done in January 2006 and came back with evidence of NPH. Jerry's neurologist moved forward with a lumbar puncture in February. "For three days I noticed a big difference – I was walking much better," Jerry explained. Based on these results, Jerry was referred to a neurosurgeon. Other health issues and authorization for a second lumbar puncture to be done under controlled conditions were resolved by May. A physical therapy evaluation was done prior to the procedure; five vials of spinal fluid were removed and Jerry's walking improved measurably once again. NPH was confirmed and plans were made for Jerry to receive a CODMAN® Hakim™ Programmable Valve.

"I understood that ‘water on the brain' was keeping me from walking," Jerry said. "I had never heard of this before. But the operation was marvelous – I got up and out of bed and walked within a day." Toni added, "The change was immediate! He got up and walked – it was wonderful!" Jerry walks every day now, he writes again, and he drives. Recently, he took himself to the driving range and hit a bucket of balls. "I'm not dancing yet, but I will," he promised.

"I had no social life in the last year and a half before my surgery," said Jerry. "I was bound to a chair, my daughter had to take care of me. It was pretty sad." Of being a caregiver, Toni said, "I felt I couldn't go anywhere, he fell a lot and was starting to have memory issues. He had loved doing puzzles, but he couldn't finish them anymore. He would forget about his medicines. Now his mind is clear, his writing is legible, and he has more of a social life than me!"

In 2007 Jerry will celebrate his 60th high school reunion. "I could hardly walk last year," he said of his appearance at last year's reunion. What a difference his classmates will see.

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.

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