JOAN’S BLOG – WED/THUR – JUNE 10/11, 2009 – THE NEUROLOGY APPOINTMENT – VALIDATION FOR ME AND GOOD INFORMATION FOR ALL.

I have finally earned a star (maybe not Gold, but a star, nonetheless) for being a good student. It is the philosophy of Sid’s neurologist that both the AD patient AND the caregiver need his care, attention, and education.  When he met me three years ago, he thought, “Uh, oh. A type-A, high achieving control freak. She is NOT going to adapt well to Alzheimer’s Disease.” We developed a good rapport, and always joked about me being the one who could not adapt to change. As you know, and he came to know, I could not accept the differences in my husband that Alzheimer’s brought to his brain. I wanted him to be the way he was, and I was going to fight to make him that way. Dr. S. has also always been calm, kind, and soft-spoken with both of us, but has had a tough time teaching this emotional wreck to “go with the flow. ” Today he told me that I had learned my lessons well. Yes, I have, and it was good to hear it from a doctor who wasn’t sure I was going to make it. I have learned not to argue, not to try to reason, to ignore rages, and stay calm in a crisis. This ability has not come without stress, anxiety, and tears, but it has come. It has been well documented in many of my blogs that I learned that Alzheimer’s Disease will always win, and I either accept it or have a nervous breakdown.

Next, he turned his attention to Sid and that Mini-Mental Exam I detest. Sid always scores between 26 and 28. Today was a 28. That score has bewildered me from the beginning. How can this be? He cannot remember a word, sentence, paragraph, conversation, 10 minutes after he hears it. He has language comprehension issues serious enough that even he admits that he misinterprets a lot of what he hears. There is rage, depression, impulse control issues, slow processing, and confusion. If his routine is interrupted, there is agitation and anger. The “Question Queen”, as I am known in the doctor’s office, finally asked point blank today – “What is going on here?” The answer was as I expected. The Mini-Mental Exam DOES NOT TEST any frontal lobe issues – the exact ones with which Sid has problems. A good example is the question – Repeat the sentence, “No ands, ifs, or buts.” Sid can do that perfectly. But the test does not ask WHAT DOES THAT SENTENCE MEAN? When asked what it means, he has no idea. The extensive neuropsychological testing that Sid participated in 3 years ago, targets ALL areas of the brain, including the frontal lobe, and those are the tests that demonstrated his problem areas. He does not have frontal lobe dementia. He has Alzheimer’s Disease, but it is has attacked the hippocampus (memory) and frontal lobe areas much more prominently than other areas of his brain.

“Well, if the MMSE is so narrow, why is it used to determine how the AD patient is functioning, and more importantly, why is it the cognitive criteria used by drug companies to determine whether or not a patient is eligible for a trial?”, asks The Question Queen.  The answer to the first question was encouraging. Neurologists are beginning to use a different short exam that targets ALL areas of the brain. The answer to the second question was not so encouraging. Apparently, neurologists have been trying to change the minds of the drug companies as to relying so heavily on the MMSE for drug trial eligibility, but they are not listening.

What that means for us is that Sid’s MMSE is too high for him to qualify for the few drug trials that do not exclude him because of his diabetes. Yet at the same time, his memory, and all frontal lobe functions are diminishing. But he can draw a clock and copy shapes.

We ended the session with some news that may interest you. Participants are being recruited for a new trial. It is being conducted by Dannon (Yes, the yogurt people).  They are testing the efficacy of DANONE on memory. Danone is a very strong concentration of Omega-3 oil.  It is a double-blind study – placebo vs. Danone. Those with MMSE scores between 14 and 24 are eligible. Check the Memory Disorder Centers in your area to find out if they are involved in the study.

Oh, and for those of you who were appalled at my treatment by the psychiatrist (Blog # 395 ), it was suggested today that Sid may want to find another psychiatrist.

Validation that I am finally a good student; that the MMSE is faulty; that I am not as crazy as the psychiatrist thinks I am; and worthwhile information on a new drug trial and how AD is affecting Sid’s brain. Everyone was calm today, including Sid. It was a good day.

MESSAGE BOARD: News from the Neurologist - Omega 3 Drug Trial and Info. on the MMSE

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