Jim is a 78-year-old father of five, grandfather of 10. Before retiring more than a decade ago, he enjoyed a long career with the same Midwestern company for 40 years in sales and management. He and his wife Joan have been married for 54 years. "My father and mother have enjoyed excellent health and it's been nice to watch them grow old together," said their son, Chris, who lives within a few miles of the couple. Jim has always been an active man - a recreational tennis player, he also boated and fished near the family's summer home on Lake Erie. He and Joan have been continually active in their church as well, as Board members and in the operation of the church's homeless services.
But early in 2006, Chris and his sister Kathy, who also lives nearby, began to notice a change in Jim's gait. "One day Chris came by on his way to work and told me he had noticed I was walking funny, sort of dragging my feet," Jim said. "I wasn't aware of it, but I said okay and I thought about it, though I didn't do anything about it." Kathy brought it up, too. "I was taking a walk with my father and noticed he was shuffling. To lift his foot up onto the curb was like he was climbing a mountain - it was very startling to me." Jim began to stand with his feet widespread, too, as if for balance. Chris and Kathy's other siblings, who lived out of town and saw their dad less frequently, noticed changes, too, and they all began to discuss these differences, including their father's waning interest in the people and things around him. "He had always been interested in everything, but he was developing a 'flat' affect, a disinterest that just wasn't him," Kathy explained.
Joan noticed differences, too. "The change in his walking was evident, as if his feet were stuck in mud. He was scuffing his feet and tripping," she said, "and he even fell down." More disturbing to Joan was her husband's sudden sleepiness. Jim would fall into a deep sleep after being up just a few hours, she said. "It really scared me." Memory was also becoming an issue, the family noted. Said Chris, "After one particular phone call with my dad in which I repeated the same instructions several times, I knew that something was very wrong." It saddened him to think that 'old age' was overtaking his father.
Then Kathy saw the Life NPH ad featuring Bob Fowler and called for a brochure. The ad spoke about the triad of symptoms - a magnetic gait, decline in memory, and incontinence - and demonstrated the very gait she recognized in her father. She and her siblings had conversations with Joan about Jim's rapid decline. Together they sat down with Jim and encouraged him to check into the possibility that Normal Pressure Hydrocephalus (NPH) was causing his symptoms.
"Very candidly, I was pretty reluctant to go along," Jim said, "but their concern convinced me to have this checked." A CAT scan and an MRI were inconclusive, but a subsequent evaluation by neurosurgeon Dr. Mark Luciano of the Cleveland Clinic kept open the possibility that the cause of Jim's symptoms was NPH. No immediate decision for treatment was made and Jim left the hospital relieved to return to his summer home. But by fall his symptoms had worsened. "One day I sat down to do the monthly balance of my checkbook and I couldn't do it. I sat at my desk scratching my head and thought 'what is going on?'" Jim said. "That was the thing that convinced me to go ahead."
In the winter of 2006 Jim had a lumbar puncture, where cerebral spinal fluid was drained and he was observed for any effects. In the eyes of his family, the results were dramatic. Kathy observed that as soon as he could get out of bed, her dad walked upright and normally. "I looked into his eyes and he was there! In his speech he was concise and in charge." Chris, who had been out of town during the procedure, came to see his father. "His face was animated when he answered the door," Chris said, "and his walk was crisp." But like Cinderella at midnight, Kathy said, the symptoms returned. With a collective sense of hope and anticipation, Jim and his family decided to move forward with treatment for NPH, the surgical implantation of a CODMAN® HAKIM® Programmable Valve.
Jim had surgery in March 2007 and the entire family noticed steady improvements in the weeks following. "Things were clearer to me," Jim said. "I felt like reading more and my walking was better." Though he never experienced incontinence, issues of urgency became a thing of the past. Chris noted that Jim's cognitive skills returned, the flat affect faded, and exchanges with his dad were more spirited. Joan remarked that Jim walked "straight up, shoulders back." They have resumed their morning walks and are looking forward to traveling again.
Jim has a message for others: "At this stage, in your 70s, a lot can go wrong and frequently does. It's easy to accept these changes as the natural way of life. But you don't have to. If in fact you're having these early warning symptoms of NPH, get an honest assessment from trusted family members and see a good neurologist. If left to my own devices, I wouldn't have done a thing." Instead, he and his family agreed, treatment has given Jim his life back.
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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