Remembering Dad. Catching up with Alzheimer's.

I am interested in the mental machinery that keeps us sane (or not) but have always been somewhat afraid of being taken over by unwanted demons in the head.  I know nothing of my genetic heritage since I was adopted as a baby but a part of me wonders if my birth mother or birth father, if still living, are mad yet.  My adoptive father did succumb to dementia as I've written about in earlier blogs and experiencing him disappear was at once terrifying and fascinating.  As a daughter, it was hard to watch but the scientist in my could not look away. 

In the early days, each strange statement, or out-of-character emotion, led me further into the rabbit hole of madness and I was consumed with understanding this terrible disease and the human response to it that was evident all around me; my mother's denial, my father's hope, my own morbid curiosity about the devious neuronal aberrations.  As time went on of course, it became starkly obvious that he was over the edge, never to return as the father I loved for his quick, intensely inquisitive mind, and seemingly endless well of knowledge about the most obscure topics.  While there were glimpses of his old self, in an impish grin or a half-told joke (he could never remember where he was in relation to the punch line, or even that one was expected, closer to the end), my dad was now someone different and my memory of him was all that existed of that former self.  We were able to talk sometimes, but rarely to hold a whole conversation. Often, these talks were about things I couldn't see; the boys playing football in the courtyard of the nursing home; the red lights of the signals ahead as the train approached; the car he had just taken into the shop for a repair he thinks he could have done better himself; his mother calling him for tea in the distance.  He was living a full life, but not one he could share or that anyone else would believe.

This week, several news items came up about Alzheimer's Disease. This one from ABC laments the lack of preventatives or treatments for the growing number of Baby Boomers who are entering the early stages of the disease. Here, Medical News Today describes a couple of studies that show patients with signs of Alzheimer's on a brain scan but without any symptoms fall more often than people with no brain signs,  while another study showed that retinal scans can indicate which patients might be at risk of the disease. Yet another study shows certain brain proteins predict disease progression in patients with mild cognitive impairment.  Plenty of research findings that may help determine who of us is just forgetful and who might be on the slippery slope from which there is no return.

This still all leaves me a little cold.  Research is good. Science is good. But for those who have seen the disease take those we love, the fear of knowing what's ahead without any credible way to forestall it is almost cruel.  It presents a dilemma for me as a scientist because I understand the value in identifying the predictors and prognosticators associated with a disease; it's one of the surest paths to eventual prevention and treatment.  However, my emotional side tells me we shouldn't know.  Like watching my dad, I have to get comfortable with seeing it from both sides.  Even so,  the tests are not for me. Yet.