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If you're new to this blog and want some context for it, read this post from the day I announced my Alzheimer's disease and this post about the day I announced I had lost it. For more info, visit my website with my autobiography and all blog entries in chronological order for easier reading to catch up. There's also a sermon on the spiritual lessons I've learned through this journey through my damaged mind.

Friday, January 17, 2014

When Experts Disagree (2)

Washington DC
 In my last post I reviewed a reinterpretation of my neuropsych tests, that, in contrast to the official NIH interpretation, indicates definite impairment.  The essential logic was that the NIH report analyzed the results of each of the many separate test items in isolation rather than in relationship to one another.  While almost all of the individual tests were within normal limits, the new interpretation by my neuropsychologist friend, Carol, was that the relationships among the tests indicated impairment.

Carol also said that there were subgroups of people who seemed to do significantly better on tests (even when compared to academic peers) than in daily life.  Doctors, she said, are often in that group.  Apparently, it’s a combination of an ability to concentrate better than others with a similar IQ and having developed test-taking abilities, ie strategies that enabled better test scores than people who didn’t strategize. 

I don’t know whether or not I belong to this subgroup, of course.  But it would help explain why almost all my individual tests were normal.  Aware of the importance of the test, I remember concentrating intentionally and intensely on each item. I wanted to make sure there were no careless mistakes.  Even as I took the test, I was surprised by how well it seemed to me I was doing. 

I’m also aware of specific strategies I’ve developed, mostly based on having taken the previous tests, which have had some of the same items as in the  NIH test.  One item, for instance, required me to come up with as many words beginning with a certain letter, say “f,” within the space of a minute.  I’d done poorly on this item in previous testing, so, as I ruminated about my poor showing afterwards, I found myself repeating the test mentally using different initial letters.  I discovered that once the initial rush of words beginning with, say, “f,” slowed, I could add a second letter, say “r” and began thinking of words that began with “fr,” which brought a second rush of words to mind.  Once that slowed, I changed the second letter again and so on.  It made a huge difference.  Another test item asked me to remember a series of unrelated words or numbers.  This time, I concentrated deeply and repeated under my breath the words or numbers several times as each new word or number was given to me, thus creating an inner “aural memory” that significantly augmented my ability to remember.

So there are good reasons to consider the possibility that the cognitive exam interpreted previously as normal does, in fact, show evidence of impairment. 

This new interpretation helps me understand why my own perception of my cognitive abilities is so much more dramatic than it is to most others.  I do generally function normally, but at a lower level than before.  This is called “subjective cognitive decline” (ie the perception of impairment in the face of normal objective testing).  And perhaps the word “decline” is better than “impairment.”  Mostly I’m not impaired in a way that others would notice, but I know I’ve declined.

Perhaps the most important result that came out of the retesting was that Carol noticed something I’d overlooked in the background of the NIH narrative summary.  Commenting on the reports from last summer’s MRI, the report stated that “the recent brain MRI was read as showing generalized cerebral volume loss and small vessel occlusive disease.”

I was shocked, actually!  These findings are consistent with vascular cognitive decline, ie impairment due to the obstruction of tiny arteries in the brain, sometimes called “mini-strokes” or “multi-infarct” disease.  I had been under the distinct impression that both MRIs during the past year had been normal. 

Even after my brain scans indicating no evidence for Alzheimer’s, I never seriously considered vascular impairment; I thought it had been ruled it out.  (Several correspondents on this blog and in personal emails, however, suggested the possibility.) 

I’ll write on vascular impairment next time.


  1. With the verbal fluency test, my understanding is that comparing your score to a population (even when accounting for age, IQ, etc.) is ineffective. The only way to get a result is to look at an individual's results over time, i.e. Your healthy score compared to your current score. However, most people don't take these tests when they are healthy.

    1. Thank you for your expertise. It sounds correct to me.

    2. Yes, as someone who used to admin neuropsych evals, I think a basic screening is prudent for anyone over age 65 or so (or younger but showing symptoms) just to get a baseline. I'd like to suggest this to my mother, in fact, as she's been ditzy as long as I can remember but since retiring it's a bit worse and I'm not sure if it's the lack of routine or something medical. It's much easier to give the advice generically on the internet than in real life!

    3. As a former doctor who now "practices" on the Internet, I spent seventeen years giving advice in real life, and I can attest to the truth of your comment: Doing this on the Internet is a whole lot easier.
      And I agree with the idea of getting a screening test earlier in life. Whether you get a normal or abnormal test in the later intensive exam, you can't make too much of it without knowing what your baseline was.
      You don't say, but I hope you have enjoyed--at least to some extent--having a "ditzy" mom.

  2. Interesting that your enhanced ability to interpret the test questions (as you look for strategies that will help you to perform well) is one important factor in your results & diagnosis. However, equally important are the small details in the results of the test (which were not brought to your attention initially).

    Another factor which might be important to establishing a baseline for comparison is the presence of "learning disabilities" in an individual. I have noticed evidence of these in my mother now that I am the one monitoring her after my father's death.

    People my mother's age (85) did not routinely get referrals for testing when they were in school. If they left high school before they graduated to work (as my mother did) that would have been compounded. I see quite clearly that my mother (who is highly intelligent but also has MCI) has problems in some of the same areas that were diagnosed in her grandson while he was in high school. That compounds the challenge of an accurate assessment for our "ditzy as long as I can remember" beloved ones.

    Thank you for continuing to probe the questions and share your journey with us. It is most helpful to someone like me who is not a medical professional and must try to find an equal footing with personnel who care for my mother.

  3. Anonymous1/19/2014

    As usual, your posts are enlightening. Thank you for sharing. Thank you for sharing. Thank you for sharing. We have a new button at my house -- "I may have dementia, but at least I don't have dementia!" It reminds us to smile.

  4. Anonymous1/19/2014

    Thanks for your personal.story. You have experienced the same process, as my husband did. The difference between the personal awareness -process and mourning of the mental loss.... and the medical diagnosis of doctors. Do you trust your own ideas/gutfeelings or do you rely on specialists? You walked a long way together with the doctors, I suppose. Maybe they could be more clear. that in the beginning of the disease their comprehensive diagnostic sets are relative and not a golden standard for the Alzheimer diagnosis. All the best and keep writing.
    joop stam Holland

  5. Anonymous1/19/2014

    Thank you so much for sharing your experiences--I can't help but be amazed as to how difficult it is to get a diagnosis that fits as well as a good estimate of what can expected in the future. How many of us would have taken the "good" news of your NIH diagnosis and lost precious "early-stage time". Your pursuit of a better explanation of your symptoms is such a wonderful example for us all.

    1. As I wrote in the previous comment, the normal testing was just TOO contrary to my own experience, and I couldn't accept it.


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