ALZHEIMER'S: LOOKING FOR THE EXIT RAMP

Several years ago Joe and I were traveling from Oregon to California on a route that skirted around one side of Los Angeles and on toward the Coachella Valley.  This was by far my preferred route, avoiding as much LA traffic as possible and thereby saving my sanity.  We were making good time when our navigation system notified us it was time to make a right turn at the next exit.  Having just driven nearly 900 miles without missing a beat following its directions, I did as directed and exited right, even though my instinct told me the system was wrong.

We hadn’t driven but a few blocks when I realized my mistake.  The system had dumped us in the middle of L.A.’s China Town.  Thinking there must be a freeway entrance nearby we continued to drive while we waited for the navigation system to catch up, recalculate our route, and get us back on the freeway.  It didn’t.  Nearly an hour later (and after several loud exchanges between me, the driver, and Joe, the navigator) we finally stumbled upon a freeway entrance and were on our way once again, nerves somewhat shattered.

It’s so easy to rely on the experts and trust their direction above your own instincts.  I couldn’t count the times I’ve said to myself, “Why didn’t I just do what my instincts were telling me?”

Technically we need both instinct and reason to make the best possible decisions, but I’m often uncomfortable with the idea of using instinct as a guidance tool.  Maybe it’s cultural but when I follow a “hunch”, which I often do, I’m reluctant to admit it.

Just after Joe’s first appointment with a neurologist after his MRI showed very early signs of brain shrinkage, the doctor concluded Joe’s cognitive issues were likely early stage Alzheimer’s disease.  Of course we were both in shock, unable to listen too much beyond the word “Alzheimer’s”.

I recall the Neurologist saying something about other tests that could be done, a PET scan or something, but that there was no single test that could conclusively show a person had Alzheimer’s (other than an autopsy, which Joe and I both thought was a bad idea).   The scan might cost four or five thousand dollars and would not be covered by insurance so, we took the doctor’s recommendation and didn’t do the test.  End of story.

 Well, not quite.

Over the last two and a half years, I’ve read just about everything I can regarding Alzheimer’s and its diagnosis.  I’ve discovered that once a doctor charts a likely diagnosis of Alzheimer’s and the drugs are prescribed, the testing basically stops.  At that point you can call it Alzheimer’s or you can just stick with dementia, your choice.  Most would say it really doesn’t matter because the prognosis is basically the same. 

Early on, Joe had a feeling (an instinctive feeling) that what he had was Vascular Dementia (not Alzheimer’s) which is basically damage to the brain’s blood vessels that reduces their ability to supply the nutrition and oxygen required to perform thought processes.  He’s said this to me many times.  And, based on the fact that he’s a diabetic with a history of high blood pressure and heart disease, he could be right.  His instincts could be just as valid as what little factual information we have.

It might sound like “six of one or half a dozen of the other”.  But if it were Vascular Dementia, there might be a more appropriate treatment than what Joe is currently prescribed.  

Later this month we’re seeing a new doctor at an Imaging and Neurosciences Center near us.  I’m hoping he will again address the diagnosis. 

It wouldn’t break my heart if we had to say good bye to Al.  But the fact is, we’d only be saying hello to another villain.  I’d have to come up with another name, maybe “Vassy” because I couldn’t just use the initials for Vascular Dementia, or “VD”.

I’d much rather be looking for the exit ramp that could get us off the dementia freeway altogether. 

  

Don’t it always seem to go
That you don’t know what you’ve got
‘Til it’s gone
They paved paradise
And put up a parking lot.

“Big Yellow Taxi”, Joni Mitchell, 1970

This month Joe’s daughter Juli came for a visit.  What a shot in the arm.  Being with her and hearing about all the grandkids and their busy lives serves to remind us that we’re part of something larger than our selves.  We’re a multi-generational tribe, and there is indigenous strength to be drawn from each other.

Daughter Juli, Joe and Grandson Joey 2014