June 2015 Excerpts from my friend David Kramer‘s FaceBook Page called Living Well with Alzheimer’s
Frequently Asked Questions
Last we left off, my neuropsych tests were mostly “average.” Everyone laughed at me for not being satisfied with “average.”
So one year later it’s time to test again. Not wanting to go through the same humiliating experience with the same neuropsychologist from the previous year, I opted for computer neuropsych testing given in a neurologist’s office. A nurse showed me how to use the program. It started out testing my reflex and response times. Then with the nurse’s supervision I was able to take the 4 hour test without a judgmental man (remember the “jerk” from Making the Diagnosis (Part 1)?) with preconceived biases humiliating me. This relieved a lot of the stress. The computer based test is good for following interval changes. However, for anyone needing neuropsych tests for insurance companies, it does not fit the bill.
Tiffany wisely thought it would be good to seek a second opinion from a neurologist who was outside the hospital system I worked in, and one who wouldn’t know anything about me personally. I would continue to use my neurologist as my primary doctor.
The neuropsych test results were sent to both neurologists. The results showed a significant decline in all areas. My situation had definitely progressed. Remember when “progress” was a positive concept, a good thing? Not so when dealing with a neurocognitive disease! Amazingly, both physicians said they didn’t yet know what to make of the decline. So they stuck with Mild Cognitive Impairment (MCI) pending additional data. At this point, Tiffany and I felt very frustrated. Although it was clear to us that something was very wrong no one else seemed to understand. Not having a clear diagnosis made both work and life very challenging, to say the least. We were stuck in limbo. I did learn one thing: it is SO much easier to be the doctor than the patient. The second neurologist repeated many of the same tests from the previous year (detailed history and physical, blood work, EEG, MRI). When the results were all normal, he ordered a PET scan to see if there was any functional evidence of Alzheimer’s disease.
So more hoops…More time wondering…More frustration…More anxiety at work and at home.
After all the tests were done we went back to see each neurologist. First we saw the new doctor. From the moment he walked into the examining room we could tell it wasn’t good news. His whole mannerism had changed. He looked at us with pity and compassion where before I was treated like I was overanalyzing. I had Alzheimer’s disease, defined as early-onset because I was 56. He explained that on the PET scan you could see the disease. Typical changes in the hippocampus were evident. He said I should consider when I would stop taking care of patients. He thought there might be good evidence to take medication. There was nothing more he could do. But he did ask if he could follow my case.
My visit with my regular neurologist was almost identical. He gave us a pamphlet from the Alzheimer’s Association, and basically wished us good luck. We asked if there was any kind local support group. He said there was not but that he was treating a few other patients in our community who were also in high ranking jobs and who were going through the same thing. So we asked if he could help us get in touch with these people. HIPPA (Blah! Blah! Blah!) We asked if he would give our contact information to them. He said he would. We never heard anything back from the other patients. Tiffany and I realized we had a lot of self-educating to do! We continued to see him annually to monitor the “progress” of the disease.
It was an ethical imperative that I retire from patient care immediately. I notified my chairman and the hospital’s Vice president of Medical Affairs (VPMA). A mistake in the emergency department would be intolerable and inexcusable. One simply cannot practice emergency medicine with Alzheimer’s. At my wise wife’s urging, I set up a meeting with all my emergency medicine residents, available office staff and faculty. Tiffany pointed out that I needed to be open and honest about my diagnosis and the reason I was retiring, otherwise many would assume I was fired. The response to my announcement was heartfelt and overwhelming. There were many tears when I explained all in the meeting. Many commented about my contributions to patients, the hospital, and graduate medical education. I was very moved.
Interestingly, after the initial shock, actually having a diagnosis was strangely comforting. We could move on from worrying, live life to the fullest, and make the most of every day. There was no reason to stay up north in the cold. So two months later we moved to Naples, Florida; to the beach and the sun.
Excerpts above from my friend David Kramer‘s FaceBook Page called Living Well with Alzheimer’s at
David Kramer’s Diagnosis series begins (1/3) at >> https://truthfulkindness.com/index-persons-with-dementia-pwd/david-kramer/may-2015/ ;
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