Normal Pressure Hydrocephalus

[bkeil]

My father was diagnosed with NPH back in 2002. He had symptoms for several years but we just thought it was the aging process and we really did not know about NPH, it was just beginning to be publicized in the media. I had to do a lot of internet time and medical library time to ask the doctor what the impression of hydrocephalus on the CT scan meant, and I am a nurse. He had shunt surgery in 2003 and had some improvement in symptoms for 2-3 years and was able to live in assisted living for about 5 years. He has, for the most part, lost all the function that he had gained after the surgery and the shunt has been opened all the way(neurosurgeon is no longer interested). He has lived in a nursing home since last August, he can not walk but uses electric mobility, he needs assistance to stand and pivot as his feet do not move and he can not stand by himself anymore. He is incontinent and has some slight dementia, mostly concentration and attention span. I have asked several doctors about the life expectancy and course of the disease but apparently none of them have known an elderly patient that had survived for so long after shunt placement. He is frail and has diabetes and some heart failure but otherwise nothing acute going on.
I came back to the NPH forums thinking that I might find some new and updated information about NPH and was surprised to see from the postings that after all these years and commercial promotions for shunt devices that there still really is not a lot of information for families about the long term outlook, quality of life, and what to expect once the gains of shunt placement begin to receed. The only thing I find is the admonition for families to be realistic in their expectations which does not tell me a lot.

I would be interested in any new information about long term survivability and quality of life issues from others who are several years removed from shunt placement surgery.