Mother and Daughter Share Their Emotional Story

In the period of about a year, Edythe Magduff went from an independent, financially savvy mother and grandmother living on her own to a woman who needed round-the-clock nursing care and a wheelchair to get around. She had the money to pay her bills; she just no longer could focus her mind enough to write checks and put them in the mail. Her condition continued to worsen. She became incontinent. It became so bad, her daughters had agreed that if Edythe showed no signs of improvement by April 1, 2005, they would start the process of moving her into a nursing home.

Edythe saw a variety of doctors along the way, and received a number of diagnoses that turned out to be incorrect. The correct diagnosis was that she had Normal Pressure Hydrocephalus (NPH), a treatable neurological condition that affects about 375,000 people in the United States, many of whom don't know they have it. Many think they have Alzheimer's disease or another form of dementia, or even Parkinson's disease.

"For a year, I couldn't do anything," said Edythe. "I couldn't walk. I couldn't think. I didn't know if it was Christmas Day or the Fourth of July." By early 2004, Edythe could no longer drive and was falling down daily – often multiple times a day. She ended up in the emergency room once after she fell face down on the sidewalk, fracturing two ribs and cracking her front tooth.

A network morning show that Debbie just happened to be watching one day held the key to Edythe getting the correct diagnosis. A neurosurgeon and former NPH patient were being interviewed about NPH and Debbie, a pharmacist, thought the guests on the show were talking about her mother. They described three primary symptoms: magnetic gait or shuffling, incontinence, and dementia. Her mother had all three. She realized that if her mother did have NPH, she might be able to be treated and, perhaps, her condition could even be reversed. After a year of searching for the correct diagnosis and feeling hopeless about her mother's situation, Debbie believed she finally had an answer.

Having just learned from the news program that an MRI can help detect NPH, as a last ditch effort Debbie requested that Edythe's doctor perform an MRI to determine if she had NPH. The doctor expressed doubt that NPH was the source of Edyuthe's condition, but in fact the MRI showed that she had enlarged ventricles in the brain, a sign of NPH. Edythe was referred to a neurosurgeon who confirmed that Edythe had NPH, based on the MRI results.

Two weeks later Edythe underwent surgery to implant a tube called a shunt into her brain. This tube drains the excess fluid from the brain and moves it to the stomach where it can be absorbed. After it is implanted, the shunt may need to be adjusted because removing too much or too little fluid can be dangerous. That adjustment used to require further surgery, but now programmable shunts are used that can be adjusted painlessly in a doctor's office by holding a magnet device to a patients' head.

Edythe's results were dramatic. Within 48 hours of her surgery, her clarity of thought returned, and in less than a week she could walk on her own for the first time in four months. Edythe recently "graduated" from her physical therapy and now works out three to four times a week with a personal trainer. She is driving again and says she is grateful to have regained her independence, paying her own bills, spending time with her family, and picking up where she left off.

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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