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home Dad was diagnosed with NPH last year but when I look back over the family photos I think I can see it as early as 1999. His problem of extreme tiredness began shortly after his heart surgery in 2000. We attributed his symptoms to the ordeal of open heart surgery and perhaps the medications that he took. He also started walking with shorter strides and didn't pick up his feet, around this time. He had always walked 3 miles a day and this gradually became increasingly difficult to do and was shortened. By the end of his walks he would be leaning more and more forward until he would actually begin to tip over forward. On fishing trips on uneven terrain he began falling down. He complained of difficulty with fine motor coordination and a frequent statement was, "I can't DO anything anymore!". It was very frustrating for someone who had been very capable and active all of their life. Eventually, he went on an antidepressant which was helpful. One time he explained it that he just had a "gerrr" feeling in his head, like there was a dark cloud there. In retrospect he explained NPH so well and was the classic case. He went to a neurologist a year ago and was diagnosed but it was not until a year later than the symptoms that had very gradually worsened made a sudden and alarming rise in severity. In a matter of two months the change was dramatic and was perhaps triggered by a small stroke. He barely had the energy to get off the couch and slept most of the day. Even very short walks like into a restaurant tired him out for not only that day but also the following day. And the most distressing symptom of all was the dementia that began appearing. Dad's mind had always been exceptionally sharp, and he also recognized that he was having trouble thinking. He had difficulty organizing his daily pills and remembering if he had taken them or not. He also began having bowel incontinence for about 6 months before surgery. This is a rare symptom but very difficult to deal with. The symptoms were getting so much worse day by day at this point that the days to the appointment with the neurologist seemed very long. Finally it was set up to do a spinal tap with a PT assessment before and after to see if he would be a candidate for a shunt. The day after the spinal tap he was much worse, speaking in a high stressed voice and could barely keep his balance. The following 2 days were not much better and we were all disheartened. The PT reassessment was on day 5 and she rated him improved in his balance. I don't think he or any of us saw the improvement but we hung in there. By the DR's appointment 5 days later he did seem clearer in his mind and we were referred to the neurosurgeon. That appointment was 2 weeks later, so three weeks after the spinal. During that time his mind steadily improved although the tiredness did not. His mind seemed better than it had been in months. We wondered if the spinal tap could have made this effect 3 weeks later and the Dr thought so. The bowel incontinence also had gone away. He was doing so well we hated to do the surgery, but in a few days the symptoms all began reappearing. It was horrible to watch. We went ahead with the surgery on Sept 8, 2005. There was not the dramatic improvement others had noted but his mind seems much clearer and the bowel incontinence is all but gone again. He is still very tired at this time and is hoping for improvements in that area. This is a continuing story as it is not yet a month out of surgery so perhaps I can up date it as the story unfolds. Oct 16,
2005 |