JOAN’S BLOG – MONDAY/TUESDAY, FEBRUARY 4/5, 2008 – THE NEUROLOGY APPOINTMENT

Many AD patients and their spouses complain that their doctors talk to the spouses only, as if the AD patient were not even in the room. Thankfully, our neurologist is sensitive to that faux pas, and does not engage in such behavior. He requests that we spouses write a detailed list of our concerns, and fax it to him before the appointment, so he knows what the issues are beforehand. He then talks to BOTH of us about them, always asking Sid’s opinion.

Since my stress and anxiety over the driving situation kept the Message Boards hot last week, you know what the main topic of discussion was today. I had already told Sid (who was definitely NOT in the mood to hear it) and Dr. S. (who WAS in the mood to hear it) that it was NOT the mechanics of Sid’s driving that had me so worried. It was the overall cognitive decline that could affect the driving that was stressing me to the breaking point.

Dr. S. and I understand each other very well. Because of my background in language disabilities and years of administering tests of cognitive assessment, he warned me, right from the beginning, that I had to be careful not to “over analyze” my husband. Not to over react to what I saw. (Drama Queen Syndrome) Not to try to “fix” what cannot be fixed. For this reason, I knew that if he thought my concerns were off the mark, he would tell me straight out. I received no lectures today – he was just as concerned as I.

The end result is that we have an appointment next week for a complete cognitive and driving assessment by an occupational therapist. They give a written test, similar to the neuropsychological testing that is done to determine a diagnosis of Alzheimer’s Disease AND a driving test that assesses vision, reaction time, range of motion, and other physical abilities needed for good driving. If he passes that test, they clear him for driving. And believe me, that doesn’t end the liability problems – the laws are very murky. Every State has different laws, so as I mentioned last week – thoroughly check out the laws in your own State.

DRUG TRIAL INFORMATION: Because Sid is considered “young” for Alzheimer’s Disease – diagnosed before age 65 – Dr. S. is very anxious to get him into a drug trial, before the cognitive decline accelerates. Unfortunately, Sid’s diabetes and other physical problems have excluded him from most trials. We have one more physical problem to address, and as soon as that is resolved, the doctor is hoping to get him into a trial by Elan Pharmaceutical for “scylloinositol” – This is a drug that is supposed to PREVENT the amyloid deposition. There is going to be another trial for IVIG , an intravenous trial for a drug that modulates amyloid deposition. I apologize for not understanding or knowing much about these drugs and trials. I am basically a scientific moron. I am just passing on the information, so you may follow up with your own doctor if you wish.

Now, I know that my old college roommate, who understands all of this scientific mumbo-jumbo (You know who you are!) is reading this, and she will research it, and e-mail me with her findings. If I comprehend any of what she says, I will share the information with you.

And so the journey continues, draining me of every ounce of energy that I have.

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