June 2015 Excerpts from my friend David Kramer‘s FaceBook Page called Living Well with Alzheimer’s
Frequently Asked Questions
As always, special thanks to Tiffany for her excellent memory!
First trip was to a neurologist colleague of mine for initial evaluation.
After a thorough history and physical, he said he didn’t think I had any significant problem, but he would do a standard dementia work-up to see what the tests showed. In addition, the initial tests should rule out any acute, imminently dangerous, and/or treatable condition. I definitely remember asking if I was still safe to practice emergency medicine. At that point, he said “yes.” He also commented on the challenge of evaluating someone who is “highly educated and very high performing”, adding that I was likely very skilled at covering up and compensating well for any memory deficit I might have.
This was followed by blood tests, EEG, and CT scan. They were all essentially normal. All treatable causes of dementia were thus ruled out. After being poked, prodded, injected, inspected, jabbed, stuck and struck I was sent to the Group W bench for neuropsychological testing. (Thank you, Arlo Guthrie, for “Alice’s Restaurant”, my favorite anti-war song.) Basically, my neurologist felt he couldn’t adequately evaluate my cognitive ability in his office because of my high level of education and also because I had administered many bedside Mini Mental Status exams to my patients. So he sent me to a neuropsychologist for more detailed and specialized testing.
Following Arlo Guthrie’s instructions, I walked in, sang “Shrink, you can get anything you want at Alice’s restaurant,” and walked out. Having no appreciation for my fantastic sense of humor, it all went downhill from there. Seriously, this was a very difficult situation. First of all I was very embarrassed to be there at all. I wanted Tiffany to come in with me for the initial “meet and greet” part of the appointment. Even then she clearly remembered far more of my history than I did. The neuropsychologist (hereafter known as the jerk, or any other four letter word of your liking ((wink)) was rude and said “no,” adding that I was a big boy and would have to do this on my own. Then right up front the jerk said that because of my age (54 at the time) I couldn’t possibly have any kind of dementia. He remained rude and abrupt with me as I tried to answer questions about my history, which only added to my stress and slowed down the whole process. We hadn’t even gotten to the testing part of the visit yet and he already had me pissed off! Before we moved on to the testing he was kind enough to allow me to take a break. I went out to the waiting room and Tiffany helped me calm down a bit.
This initial neuropsych testing was scheduled for four hours and was designed to evaluate how my brain was functioning and performing. I was tested on vocabulary, spelling, reading comprehension, oral story comprehension, puzzle shapes, mathematical skills, decision-making skills, executive function, etc. It included the Wechsler Adult Intelligence Scale and the Minnesota Multiphasic Personality Inventory. Any time I took “too long” to answer a question or said I didn’t know the answer the jerk would accuse me of lying. He said I wasn’t trying hard enough. Sounds like I’m making this up, doesn’t it? But it’s true. His attitude and behavior really made the testing situation very uncomfortable and challenging, to say the least. The test ended up taking close to six hours rather than four. Although clearly abnormal from any objective point of view, the neuropsych testing was initially viewed as indeterminate since the psychologist thought I wasn’t trying hard enough when I couldn’t answer his questions! His obvious bias (believing that I couldn’t possibly have dementia) was incredibly frustrating to me. My neurologist later told me that he had had other patients complain about the “doctor” who administered the test.
Fortunately, my neurologist took the results at face value and reviewed them with me. My performance was essentially average (100) in every category but one. On that one, I had scored a 70. I was upset and tried to explain to him that this was proof I was having a problem. I told him I was never “average.” I tried to explain that I always prided myself as being very bright, even exceptional. He just smiled, humoring me. He said this was a good baseline. Tiffany joked on the ride home about me trying to convince my doctor that I wasn’t average. I felt like crying. I could feel my brain changing, but no one seemed to grasp the seriousness or urgency of my situation.
Regardless, I was initially labeled as MCI (mild cognitive impairment) and scheduled for a 6-month follow-up visit. I wanted to know the diagnosis immediately, not six months later. It sucks to be patient, especially an impatient one. ((wink))
Part 2 of this What the FAQ will be about the follow-up tests which, spoiler alert, proved I was right all along. Stay tuned!
Excerpts above from my friend David Kramer‘s FaceBook Page called Living Well with Alzheimer’s at
David Kramer’s Diagnosis series continues (3/3) at “Diagnosis 2” >> https://truthfulkindness.com/index-persons-with-dementia-pwd/david-kramer/july-2015/ ;
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Thanks David. Your entry is in this month’s “Perspectives” newsletter https://paper.li/f-1408973778