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Pat Sabin

My father was diagnosed with NPH the summer of 2002 at the age of 79. His symptoms were evident for around four years before he was diagnosed, but he was "between" primary care physicians (two had retired). The only doctor who saw him regularly was his urologist who was treating him for an enlarged prostate.

Since his heart surgery in 1986, the most important part of my Dad's routine was his daily walk. We, and his neighbors, began to notice that his gait had changed. He walked leaning forward from the waist, with his feet almost "running" to catch up with his upper body. When he stood still for more than a minute, he would gradually lean forward until he had to hold onto something. Seated in a booth or chair without arms, he would lean sideways until almost falling onto the floor. He never felt dizzy, never had headaches or nausea, and was unaware that he was no longer upright.

He had several sudden falls over the years. From the CT scans, we know that he had a couple of mini strokes, so two of the falls may be attributed to those. He would try to turn, and just go down on the floor, unable to get up without assistance.

Once, when he had an upper respiratory virus and fever, he became delirious. We saw that same sudden decline in cognitive function, loss of balance, and urinary incontinence again when he's had urinary tract infections. (We now recognize the reappearance of these symptoms as a sign of something else "not quite right.")

His short term memory loss and confusion gradually increased, and he had times of such confusion that he refers to them as "black outs". He remembers some events in "vignettes" but has no memory of many of the events and the people he met during those years. He could no longer walk except to the mailbox, couldn't drive, could not watch the news on television and absorb the information, could not read and retain information. He was overwhelmingly sleepy and mildly depressed.

Urinary urgency became a huge problem, making it almost impossible not to have accidents. This probably is the symptom that patients hide most from their doctors. Again, this was a gradual progression, from urgency to almost complete incontinence, over a period of several years.

By the time he was diagnosed, the ventricles of his brain were so enlarged, his neurologist discouraged him from having shunt surgery. She felt that he was too old, his condition too advanced, and the risks too great to recommend surgery. With all due respect, we now know that this was just ignorance. We insisted on a referral to a neurosurgeon, who felt that Daddy had an 80% chance for significant improvement.

Even then, it took eight months for us, with the help of his primary care doctor, to convince him to have the surgery. We all agreed that, even considering the possible side effects of surgery (including death), anything was better than the alternative. We also agreed that, even if the surgery only slowed down the progression, it was worth it to our family. Although the neurosurgeon predicted an 80% chance of improvement, it's fair to say that our expectations were very modest.

I should stress that prior to the onset of this condition, my father was generally in good physical health. He had heart by-pass surgery in 1986, and since then had not smoked, had watched his diet, and had walked 3-5 miles a day. Except for slightly high blood pressure, he was in good condition for a 79 year old.

Typically, the patient would undergo some time of spinal drain, either a one time lumbar puncture or an in-patient drain in the hospital over a period of days, to help predict the success of a shunt. Our neurosurgeon did not require that step, and we were glad to skip it. Evidently, that's very unusual!

The surgery was performed in February 2003 at Emory University Hospital in Atlanta. He was only in the hospital for one night, and that seemed a bit short for us. For a few days after surgery, all of his symptoms were far worse than before surgery. He was very confused, could not walk without assistance, and was incontinent. We took turns spending the night at his house, and had a home health care worker there during the day. However, as he recovered from the actual operation and anesthesia, his symptoms improved steadily all week.

He had no real pain or discomfort from the shunt itself (I'm sure this varies from person to person). His balance and gait improved within a short period of time, and have not changed since then. He now walks three miles a day. When he is tired, and when he stands still for too long, he begins to fall backward or forward. However, to our knowledge, he has had no sudden falls with no apparent cause.

Except when he has a urinary tract infection, he is no longer incontinent.

Although his short term memory has not improved much, he is more alert, more *present*, and less depressed. He's sleepy all the time, but admits that he doesn't sleep well at night. Big events are exhausting for him, so we try to be sensitive to his need for rest.

He is living more or less independently, able to drive to the local grocery store, bank, drug store, barber shop, and park. He really enjoys seeing other people on the walking trail at the park every day.

He does a great job of keeping up with his doctor appointments. I write the appointment on his calendar, and he calls me the night before to remind *me*. He keeps up with the news, reads the newspaper, reads magazine articles (but not novels). Interestingly, as he felt better, he stopped going to his company's retiree luncheons. He says it depresses him.

Since his shunt surgery, he has had two cataract surgeries and a prostate biopsy. He had no problems at all with the "twilight" anesthesia. The first time his symptoms came back were two years after surgery and were due to a urinary tract infection. With 20 days of antibiotics, he was fine. Just to be sure, he had a CT scan and Shunt Series, and the neurosurgeon said that his ventricles have shrunk and everything seems to be working fine.

We just passed his third "anniversary" since diagnosis, and we are so glad that we have our Daddy back.