'Starting at age 69, symptoms including difficulty walking, incontinence and dementia, gradually robbed Alicia of her mind and body over the next six years. Some thought her age was catching up on her and one doctor even prescribed an Alzheimer's drug'
dementia: a condition of deteriorated mentality characterized by forgetfulness, emotional apathy, and by noticeable deterioration in the level of functioning in everyday life
His personal battle with NPH
The characteristic symptoms were clearly present - the stuttering walk, urinary incontinence, ataxia and the first traces of dementia and memory loss. Yet it would be several years before my husband, Richard, would be correctly diagnosed with adult-onset normal pressure hydrocephalus. Those years would prove to be extremely frustrating and painful for all of us. Often I would catch sight of Dick - a man ordinarily stoic by nature - with his teeth tightly clenched and his hands twisted into fists. Bafflement and defeat seemed to be his constant companions.
Neither of us could understand what was happening to him. For my part, I suspected Alzheimer's disease and I would draw the children aside to voice that judgment, but it was one I, as well as they, was loath to accept.
At one point we had a physical therapist come to the house to assist Dick with his walking, little knowing that all the training and exercise in the world would never again allow those feet to walk normally. Even more demoralizing to his spirit was the loss of bladder control, the terrible urgency that resulted in many accidents and changes of clothing and bed linens.
So over the years, with the help of a hired driver with strong arms, we floundered, consulting a corps of physicians - but to no avail. It was not until we met with a neurologist, young and bright and thorough, that we saw a ray of hope for diagnosis. At once he ordered a CT scan and a radionuclide cisternogram. The resultant findings were consistent with normal pressure hydrocephalus. At last we had a diagnosis. Yet the name of Dick's disease held words of meaning as foreign to us as Jabberwocky. But help was on the way!
The children were of vast assistance. Immediately they were on the internet, talking to other doctors and patients and ultimately discovering the Hydrocephalus Association, based in San Francisco. With support and encouragement from the Association we were gently led on to the next step in treating NPH - a shunt inserted into Dick's cranium to drain the cerebrospinal fluid into the abdominal area, a procedure often associated with malfunction and other complications. The concept was scary, but it seemed the only recourse and the neurosurgeon was optimistic. Coming home that sunny blue day from our appointment with the neurosurgeon, following along Lake Erie's shore, Dick said, 'Oh, just to get back in the boat on that lake again!' There were tears in his eyes. He was so hopeful.
The shunt insertion was successful - for four days. For four days the witty, dynamic, clear-thinking Richard was with us again. But then we lost him to a stroke, a sad terminus to a renewed life so eagerly awaited.
Later, after Dick's death, we discovered a CT scan taken six years prior to the final diagnosis of NPH. It distinctly pictured the telltale abnormality of enlarged ventricles. To this day that CT scan remains a mystery. Who read - or didn't read - it? Why was this condition not recognized? If we allowed ourselves, we could play the 'what-if' game. What if adult-onset normal pressure hydrocephalus had been diagnosed back then, giving Dick a six-year head start? The what-ifs could go on and on. ...Suffice it to say, the earlier this condition is detected, the brighter the treatment results.
Granted, adult-onset NPH is not always readily diagnosed, its symptoms so similar to other diseases and conditions of aging. Yet to my mind, consideration and testing for NPH should be mandatory in the assessment of any apparently 'psychiatric' illness of old age.
Thanks to the brilliant work of several neurosurgeons and neurologists, NPH - while not yet a household term - is more commonly recognized and diagnosed. Shunt technology, too, continues to advance, including a shunt that is now externally programmed and regulated, a giant step forward in treating the disease.
Through the efforts and research of dedicated doctors (many of whom contributed to this booklet) and hard-working patient advocates like the Hydrocephalus Association, much has been learned about NPH and its treatment. Thanks to them, there is hope for a more promising consequence for other new patients.
Dick's struggle is being vindicated.
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