Walter is a 77-year-old man who leads an energetic life as a social worker with the aged and visually impaired and as a Jewish religious leader in both Conservative and Reform congregations. Despite having a hereditary neuromuscular disorder called Charcot-Marie-Tooth (CMT) – a slowly progressing disorder that effects the lower extremities and can cause walking difficulties – he has continued to lead an active life, working part-time, volunteering, and learning how to drive with hand controls.
Two years ago, though, Walter's energy began to diminish and he napped a lot. At about this time he was diagnosed with sleep apnea. Over the course of the next year, Walter's walking declined rapidly and he began to fall more frequently. He had used an orthodic for support for years because of the CMT, but his doctor recommended a walker and then a motorized wheelchair as his abilities worsened. Walter thought the CMT had suddenly progressed more rapidly. He also became lethargic and was gradually withdrawing from his many activities, which revolved around music and the synagogue. He began experiencing bladder problems and memory problems.
His wife, Lonnie, fills in details Walter doesn't fully recall. "He started ‘furniture walking'," she remembered. "Even though he was prone to napping, it became extremely excessive. I was losing my husband. He was fading away." In addition, Walter's driving was becoming a safety concern. Minor accidents resulted in dents and mirrors broken off the car several times. On being reevaluated on his ability to drive with hand controls, he flunked and voluntarily gave up driving.
In May 2005, things got worse. Walter fell at home and he couldn't get up. "I knew something was terribly wrong," Lonnie said. A CMT expert was brought and it was then that Walter got a surprise: It was not CMT causing his symptoms. The CMT expert suggested that Walter be tested for Normal Pressure Hydrocephalus (NPH). An MRI and a lumbar puncture resulted in a diagnosis for the disease-state. In June 2005, Walter received a CODMAN® HAKIM® Programmable Valve and the changes in his symptoms were apparent right away. HAKIM is a registered trademark of Hakim USA, LLC and is used under license by Codman & Shurtleff, Inc. "The results happened so quickly," Lonnie exclaimed. "There was such a marked difference right away."
Aside from some discomfort at the site of his abdominal incision and the challenge of physical therapy following surgery, Walter noticed he felt better and walked easier. "I feel so good now – the lethargy is gone and I have energy and enthusiasm," he declared. The cane and walker he relies on for his CMT are the only ones he needs now. "People who know me see a huge difference," he continued. "And I haven't fallen any more."
Walter continues his wellness program, doing circuit training two times a week. He's had no need for a readjustment of his valve. Sleep apnea is no longer a problem. The best part, he said, is that he has been tested and approved to drive again. He also resumed his volunteer activities and has a new part-time job working as a recreation aide with recovering mental health patients.
"It was a most difficult year for Lonnie to endure," Walter said. Lonnie agreed: "It was a year of major changes. But it's wonderful having my husband 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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