Saturday, June 28, 2008

Lewy Body Dementia

I just finished reading Dr Tom Graboys memoir describing his descent into dementia and Parkinson's disease. I give the writing 3 stars, the tremendous effort it must have take to organize and write the book a 4th star, and a big fifth star for the moving poem at the very end that was written by his dying first wife a few years ago. It's a quick read but well worth it.
I was amazed at how many symptoms Dr Graboys experienced that were also part of my dad's disease. My dad suffered from Lewy Body Disease and died in 2004 of an overdose of an anti-psychotic drug-Olanzapine (Zypreza)-after he contracted Neuroleptic Malignant Syndrome, an uncommon but not improbable outcome of overdose with this class of drugs. Dr Grayboys talks about his struggles with driving and with writing. My father clung to his right to drive for as long as he could, even driving my mother to the coast 60 miles from their home just months before he was hospitalized for the last time. When they got to the boarding house that night, he could not figure out how to get the car into the driveway so the hotel owner had to park the car for him as he stood by my mother's side and watched. Looking back, we realize what a tremendous feat of concentration it must have been to drive for 2 hours after dark to take my mum on that last trip. She spoke to me during the holiday, full of dread for the journey home. He made it admirably, going no faster than 30 miles an hour at any time. My dad always loved to drive and once his disease had really taken hold it was one of the few expressions of his utility to the family that he should continue to taxi folks here and there. Later, when he was in the nursing home my mum sold the car (she didn't drive) but we could never tell him it was gone. It would have broken his heart, at least what was left of it.
Dr Grayboys talks about his disease as being primarily Parkinson's Disease with some Lewy Body Dementia. In my father's case, the doctor had suggested he had full blown Lewy Body Disease and that the difficulties with gross motor skills were Parkinson-like rather than actual Parkinson's. After a review of the literature on Lewy Body it seems as though the symptoms define the disease and having Parkinson-like symptoms along with dementia means one has Lewy Body Dementia. Dr Graboys described his stooped appearance and I remember looking at my dad at one point and thinking he was physically reverting almost to the stage of fetal development where the fetus looks looks like a stumpy seahorse. His neck was thickened and stiff so he could not properly look up which emphasized the curvature and his stoop even more. It also gave him an appearance of extreme humility, which was fitting, because my father had always been one of the most humble human beings I have ever known. Dr Graboys seems more aware of his disease than may father was although the extent of denial was similar in each. Every symptom was entertained with an elaborate theory until finally in Dr Graboy's case, he had to give up practicing medicine, and in my father's case, the men in white coats came to take him away.
Lewy Body Dementia is not well-understood and according to the Lewy Body Society, under-diagnosed. 1 in 199 people are afflicted in their later year which adds up to about 150 million people across the States. There is no cure, yet, but Dr Graboys does mention a drug regimen that seems to be helping him- a combination of Aricept and Namenda, both indicated for dementia but usually with little long-term benefit. My father was considered past all help in that department and spent his last two years being calmed with the Zyprexa that eventually killed him. The Lewy Body Dementia Organization has an excellent website at The latest issue of their newsletter has an article on Dr Graboys and a touching picture of him in his local coffee shop which he still drives to everyday. There is also an article on one of the most fascinating symptoms of the disease (although it is not a definitive sign)--REM Sleep Behavior Disorder (RBD), where sleepers act out their dreams. For my dad this started many years before any other symptom and was a source of continual pain in my parents relationship. My mum couldn't help but take it personally when he would lash out is his sleep almost every night, and took to sleeping in a different bed once the flailing began. My dad remembered nothing of these episode of course.
To me, the disease is fascinating, terrifying and deeply sad. I look forward to researching more about the underlying pathophysiology and reporting back on what I find to this blog.
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