Colombian Families, Bercaws & a Brand New Twin

Dears,

Today, the New York Times ran an excellent piece about how the brain begins to deteriorate years before a person shows signs of dementia.

Click here to read full story.

The news involves my beloved (albeit heretofore unmet) soul mates in Colombia–an extended family ravaged by early-onset Alzheimer’s. And the research about them is being done by my acquaintance in Phoenix, Dr. Eric Reiman of the Banner Alzheimer’s Institute.

Here’s an excerpt from the Times’ piece:

“The prevailing theory has been that development of Alzheimer’s disease begins with the progressive accumulation of amyloid in the brain,” Dr. Reiman said. “This study suggests there are changes that are occurring before amyloid deposition.”

One possibility is that brain areas are already impaired. Another possibility, experts said, is that these brain differences may go back to the young developing brain.

“It is a genetic disease, and it’s not hard to imagine that your gene results in some differences in the way your brain is formed,” said Dr. Adam Fleisher, director of brain imaging at the Banner Institute and an author of the studies.

Okay, so I’m not a researcher, but this feels exactly right to me. Indeed, this was my father’s inkling when he was a medical student and his father was grappling with AD, way back in 1963. I believe, as my father came to believe, that you can sense dementia’s impending onset.

Your DNA whispers, “it’s coming,” even if you don’t speak the language of Deoxyribonucleic acid.Later in life, certain traits segue into tell-tale signs. And, eventually, sound becomes fury. What you feared becomes what you have.

Dr. Reiman suggested this could mean that the pre-Alzheimer’s brain has to expend more effort to encode memories than a normal brain.

My father worked hard to encode memories–living large, traveling, doing math puzzles, and everything humanly possible–to thwart what he saw coming from his gene pool. I have, instinctively, done the same.

And now, I worry about slight changes myself. As does my new-found twin, who sent me this email:

My father is a retired neurosurgeon who fears nothing more than AD.  Like your father’s obsession with supplements and math, my 83-year-old dad literally spends hours exercising and reading.  His bedside table is piled up with books on every subject imaginable, so complicated that you wouldn’t bother to read them unless you were getting a PhD. 

Both of my grandmothers lived with us (at the same time) when they were dying of AD.  The disease left one as mean as a hornet – buzzing and lashing out continuously.  The other was sweet and funny – believing that the globe lights leading up our neighbor’s driveway were many beautiful moons, lighting up the sky (by the time this grandmother died, she could only speak in the language of her childhood – Lithuanian).  My mother’s brother died of AD at 54 years of age.  I’ve always hoped that his disease had more to do with a Vietnam War head injury than it did a hereditary trait.  As you can probably tell, I, too, am scared.  Not in an immediate way, but kind of in a looming cloud in the distance way.

I think my new friend and I have much in common with our like-minded Colombian compatriots. They have it now; we may get it later. All of us connected by a freakish amyloid plaque that knows no bounds. Again, the Times’ reporter gets to the heart of our gray matter:

So, the high level of amyloid fluid in the Colombian family supports a hypothesis about a difference between the beginning phases of genetic early-onset Alzheimer’s and the more common late-onset Alzheimer’s. The difference may be that early-onset Alzheimer’s involves an overproduction of amyloid, while late onset involves a problem clearing amyloid from the brain.

I wonder what will come of this research. Of the Colombian families. Of me. Of my new friend. Where will be in 10 years? Closer to the forgetting or closer to a cure?

Love,

Nancy

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