Ordinarily, a man whose introduction to professional scholarship dealt with earwax would not be famous in medical circles, but this man is different.
This man, who started out working with mental patients in the infancy of any sense of the birth of modern psychiatry, has among the best-recognized names in all of medicine, let alone psychiatry.
We should be glad he did not get the disease he was studying, as the Curies fell to the radioactive material that gave them such fame. For if he had gotten presenile dementia, his work with patients' brain cells would have been blamed, and research on the degenerative disease would almost assuredly have stopped or at least slowed down considerably.
And he would have started forgetting so very, very much of what he had devoted his life to. He would have known, until his brain lost the information, that he was to end up like Auguste, like Johann, patients whose loss of mental functions made them living corpses.
But however fortunately we can remember today Alois Alzheimer, born on this date in 1864, we look on his works, we mighty, and despair.
For Anne Frank, who started her diary on this date in 1942, and in whose literary shadow we forever weep, determined to never forget.
With great poignancy comes great pain today. With one story, part of a bigger picture we must never forget, comes another story implicit in which is we will forget.
For the story of Alois Alzheimer is, yes, the story of a brilliant laboratory technician working among similarly skilled scientists to identify the cause of Auguste D.'s diminished brain function:
At a scientific meeting in November 1906, German physician Alois Alzheimer presented the case of "Frau Auguste D.," a 51-year-old woman brought to see him in 1901 by her family. Auguste had developed problems with memory, unfounded suspicions that her husband was unfaithful, and difficulty speaking and understanding what was said to her. Her symptoms rapidly grew worse, and within a few years she was bedridden. She died in Spring 1906, of overwhelming infections from bedsores and pneumonia.
Dr. Alzheimer had never before seen anyone like Auguste D., and he gained the family’s permission to perform an autopsy. In Auguste’s brain, he saw dramatic shrinkage, especially of the cortex, the outer layer involved in memory, thinking, judgment and speech. Under the microscope, he also saw widespread fatty deposits in small blood vessels, dead and dying brain cells, and abnormal deposits in and around cells.
And it is indeed true that Alzheimer's could as easily be called Fischer's or Perusini's:
Another irony is that it may have been someone other than Alzheimer who ‘discovered’ Alzheimer’s Disease. The condition described by Alzheimer at the psychiatry conference in 1906 had already been described by Oskar Fischer, Francesco Bonfiglio and Graetano Perusini. It was largely due to Emil Kraepelin, Alzheimer’s boss at the clinic in Munich, that the condition is now known as Alzheimer’s Disease. Kraepelin, who first classified schizophrenia, included Alzheimer’s description of Auguste Deter’s symptoms and pathology in the eighth edition of his book Psychiatrie, which was published in 1910.
However, the following respectful objection to that assertion should be noted (warning: PDF):
However, the case of Johann F. may provide a better explanation. Alzheimer submitted his report on this patient together with a detailed description of the cellular pathology of Alzheimer disease in January of 1911, i.e., only a few months after the autopsy. This suggests that the study on Johann F. became part of a long planned manuscript which eventually comprised 30 printed pages. It also implies that Johann F. who was admitted with a diagnosis of possible vascular dementia (Fig. 4) was observed very closely during his stay in the psychiatric clinic. Finally, publication of the new eponym 'Alzheimersche Krankheit' by [his boss, manuscript writer Emil] Kraepelin [footnotes 3, 4] practically forced Alzheimer to write his own name as the patient's diagnosis in the autopsy book (Fig. 1b, c), only 3 years after his first description of the disease.
The argument for naming the degenerative disease Alzheimer's or naming it something else appears to this humble researcher to be beyond the scope of a day's research (not to mention all the academic journals requiring subscription).
"The lack of priority given to dementia research is illustrated by the fact that only £11 is spent on UK research into Alzheimer's for every person affected by the disease, compared to £289 for cancer patients[," said Rebecca Wood, chief executive of the Alzheimer’s Research Trust.]
The annual economic burden of dementia is over £17 billion - more than stroke, heart disease and cancer combined - of which the majority falls to families. Delayed diagnosis ultimately results in spending at a later stage on more costly services.
In 1993, the FDA approved the first drug to treat Alzheimer's disease, Cognex®* (tacrine), which increases the amount of the neurotransmitter acetylcholine in the brain and can slow cognitive decline.
I spent several hours a few weeks ago making the pain of ALS bearable for one person for one night.
With a similar disease comes a similar desire. Nonclinically speaking, ALS and Alzheimer's work in a similar way: You just slowly shut down. It is not easy, it is not fun, and ALS and Alzheimer's are part of a family of diseases that are far easier on the patients than those around them. Alzheimer's can even be a gift in a way: The patient eventually doesn't know anything's wrong.
I am taken back, in thinking of turning loss into gain, to words with which Lauren Holly, as Linda Lee, ended Dragon: The Bruce Lee Story, the movie about Bruce Lee's life.
Bruce Lee died young, possibly because of a drug interaction. (He was on various painkillers because he was often hurt doing his own stunts.) To close out Dragon, Holly said:
All these years later, people still wonder about how he died. I prefer to remember how he lived.
It is not easy. Thirteen years after my first significant familial loss, my grandfather, most of my strong memories of him are of his last few months. Much of what I'll remember of my father is his time dealing with the chronic illnesses that will slowly wear him down.
But you who have known people for upwards of 30 years can have a different perspective. And you can react in any number of ways to an Alzheimer's diagnosis.
One such reaction is to use Alzheimer's as a reason to record (on paper or as video) the life of your loved one. Start writing down family stories. Re-enact the births of family members with the (adult) kids playing their parents, the Alzheimer's patient as the doctor and some dolls as the babies. Use YouTube as a way to both immortalize and make available to friends and family (and anyone else) your family stories.
Write or film walkthroughs of your loved one's place of residence so s/he can find things when you're not around. Label the walkthroughs clearly so that if s/he forgets where the video is, it's sort of in plain sight.
But don't restrict the stories to just those that center around your loved one. Have relatives include their stories. First, it's a great way to get your oral history started (or more complete). Second, it triggers a sense of inclusion in the determination to not lose the events you and your family have experienced. Third, it provides scaffolding for when the memories start to be harder to corral. If your loved one is having trouble remembering the names and relations of relatives, showing a video of those people, before they come, can be useful in familiarizing. (And, of course, helpful in not having an overly emotional relative lose it, thus making the visit less pleasant.)
Yes, at a certain point, the videos will have nothing to latch onto, and you'll be in denial thinking that a walkthrough of how to brush teeth is actually going to work. But the things you can do to protect memories are things you might do anyway. And those videos are absolutely therapeutic, especially in the last weeks of your loved one's life and the moments after that life ends. When my wife's grandmother died, she and her cousins spent about the next two hours watching home movies of holidays. Part denial, part reliving those moments: In the wake of her death, they preferred to think about how she lived.
There is, of course, the potential medical science brings to the table. In addition to Aricept and other drugs, a new (and controversial) treatment has emerged in etanercept, or Enbrel, which I have written about before, and which is (more accurately than I and others have stated before) a drug that helps fight auto-immune diseases. (Thanks to emidesu for noting the distinction.)
I'm not a doctor. Enbrel's mechanism is beyond my knowledge. And how you can heal atrophied tissue that doesn't grow back is similarly beyond my knowledge. But it can work. And it costs $800 a week, none of which is covered by insurance because it's an experimental treatment.
Here's a woman talking about some of the economic impact of Alzheimer's. (Thanks to LarryO for alerting me to the possibility that some people might think I was in this video in any sense. I don't know her any more than y'all do. I just find her message thoroughly powerful.)
(The title of my diary comes from Alois, Alzheimer's commonly cited first name [shortened from Aloysius], and a lament in the Bible in which Jesus says "Elohim, elohim, lama sabachthani?" or "My God, my God, why have you forsaken me?" I welcome reader comments on the appropriateness of this title.)