Wednesday, September 24, 2008
Yesterday we saw a new neurologist. The doctor we've been seeing for the past year is a lovely man but his approach to Flip's disease is completely laissez-faire, what-will-be-will-be. Sitting in his presence for a few minutes every three months feels like a coffee klatch without the coffee, so I sought a doctor who specializes in Alzheimer's.
Dr. G is personally quite repulsive. He creeps me out, and not only because of his attire: Blindingly bright turquoise nylon shirt so tight that his belly bulges between the buttons in flaccid bits and a tie that looks like Salvador Dali vomited. He walks like a chicken and his hair appropriately resembles a cock's comb. Let's just say that he is old enough to know better.
He enters the room, strutting, and informs us that he doesn't have to work -- he does so because he loves it. I think this is meant to be reassuring but it falls far short of its mark.
I am uncomfortable that he makes eye contact only with me the whole time he is with us. To be fair, I have done most of the talking because Flip's disease is impeding his verbal skills. Since doctors allot only so much time per patient, it is more ergonomic for me to explain what is going on. But if he is going to treat Flip as a nonentity, then he is not our man.
He touts himself as being on the "cutting edge," an expression which I have found usually indicates a huge ego. And while some degree of ego is probably necessary to accomplish anything, too often it controls the beast and blinds it to its own faults.
He has one of his assistants, of which there are several, make us copies of the particulars on two drug trials he is running. The sheaf of papers is a good two inches thick. I have my reading material for the next millennium right there.
One drug is an hour-long infusion by needle which is given every six weeks, followed by an MRI to monitor swelling of the brain which is a possible side effect. He minimizes the seriousness of this for us, but I am a lay person. Swelling brains do not sound good to me.
The other medication is a daily pill, the possible side effects of which are: headache, diarrhea, rash, head cold, dizziness, problems with balance, nausea, tiredness and muscle pain, vomiting, abdominal pain, cough, sore throat, itching and visual disturbances, as well as intestinal blockages requiring hospitalization. Confusion is another, although I am not sure this could be determined in a patient with Alzheimer's.
Either of these regimens could have been an important part of Dr. Mengele's repertoire, or the Marquis de Sade's. It seems that quality of life should be a factor.
Flip asks me if there is a third party regulating these trials, and I tell him there is not. Basically, I am all he has. Unfortunately I am not a trained medical person, but on the plus side, I am reasonably intelligent, I can read, and I am absolutely devoted to protecting him.
I hate that the doctor must be considered an adversary. We are between that rock and hard place in that seeing Doctor #1, who is a nice man and seems genuinely regretful when he tells us there is nothing he can do, has begun to feel too much like giving up. Our visits to him are basically a quick conversation after which he pronounces, "Yep. You've still got it."
I need to feel more proactive and less resigned even if we are fighting air or tilting at windmills.
Doctor #2, on the other hand, may be on the cutting edge but he is also clearly in the pocket of the drug companies. He is probably being paid for every body he brings into the studies so there is no way his first concern is for the patient. It is obscene that drug companies and insurance companies control medical care in this country.
While I understand the necessity for drug trials, I am extremely reluctant to subject someone I love to them. I want a drug that will erase all symptoms of the disease with no side effects, a drug that will spring fully formed and armed to the teeth like Athena from Zeus' head. I want to know that no animals, human or otherwise, were harmed in the making of this drug.
Is that too much to ask?
This disease is a maelstrom whirling faster and faster. As rational beings, we want to make sense of our life's experiences. Understanding them is second nature because we have no other way to navigate the future. Accepting that perhaps there is no sense to be made here goes against all our conditioning as reasoning beings.
Alzheimer's is the best reason I know for living in the here and now.