"Spinal-Fluid Test is Found to Predict Alzheimer's"
The New York Times reports that the Archives of Neurology is today publishing a study on a test for Alzheimer's that is supposed to be 100% accurate. The news brought a most profound sense of deja vu for me. This is a situation I have faced before.
I am in the fourth year of taking care of a parent with Alzheimer's, the first 3 of which were in my home. It has not been an easy experience on so many levels. I will spare you the many details, but as you can imagine, watching your parent lose their independence is difficult not only conceptually, but practically speaking. Buying your parent dollies and diapers really brings that home. Trying to match two worlds – your's that is at least somewhat rationale and ordered, against their's that has no order, no rhyme, no sense, and which spirals down to sometimes incomprehensible depths of sadness and despair, is a great challenge to your own well-being even as your parent is increasingly unaware of her own.
And, of course, in the midst of that, you have to wonder about your own future. As you look into the face of your parent, are you seeing your own self in twenty or thirty years?
I come from a family that is an inverted pyramid. My four grandparents, my two mother's parents and my two father's parents, had 11 children. Those 11 children only produced 8 children in the next generation, that includes me. We 8 produced only 1 child. In other words, my family are a lot like America. There are a lot of people getting older with no one to care for them.
And so what do I mean by deja vu?
In 1985 I was the Director of Legal Services at the Gay Men's Health Crisis. I managed legal services for thousands of people with AIDS. In those days, the legal services consisted primarily of deathbed wills and filing discrimination cases based on new and emerging laws, for people with AIDS. Then, if you had a diagnosis of AIDS, you didn't live much longer, though I am pleased to have recently reconnected on Facebook with a diagnosed friend from back then. But for the most part, death was close at hand after a diagnosis. My partner Joe, diagnosed in 1985, died in 1987. I wrote a memoir about the 80's in New York call called A Fragile Circle. (Don't worry, I'm not hawking a book, it has been long out of print.) At work, my clients all were dying of AIDS, as were many of my co-workers and when I got home, there was Joe. AIDS was surround-sound.
I began volunteering legal services in 1982. Between then and 1985, I had done a lot of deathbed wills. I did not know whether or not I was infected with what was then called HTLV-III, and only later called HIV. In 1985, a test became available for the antibody to the virus. In the beginning, it was used to test blood products, not people. That came later.
And when it did, one was faced with a very profound choice. To take or not to take the test? After all, there was no treatment for AIDS then. If I took the test and tested positive, would I step from my small circle of ignorant bliss into the world of my clients, co-workers and partner?
And if I did, what then? The opportunistic infections could be treated, but not the underlying disease. In fact, if you developed opportunistic infections, well then, you had taken the AIDS test, and the results were not good news. The presence of the infections meant that you had the disease, just like the memory loss of Alzheimer's may signal that you have that disease.
If I tested positive for HIV, what could I do but wait and look each day for a symptom? And believe me, I and many others did just that. Day after day of looking for a bruise-like mark that might be Kaposi's Sarcoma, or to detect a swollen gland, or to wonder if you had just been short of breath that might indicate pneumonia.
Of course I might test negative, which would be such a relief. But the whole equation was a tremendous gamble. And so for the time being, I chose to wait. I did not want to know I had a disease for which I could get no treatment.
Today, there is still really not that much known about Alzheimer's, and there are no real treatments for the disease itself. Until not long ago, there were still recommendations floating around that keeping the mind active with crossword puzzles and games could help protect you against the disease. I remember that brand of advice in the 80's too. Drink certain teas. Think positively. Love yourself. Those things, it was said, could help you keep a disease away.
And so now, with this new headline, one must ask one's self, whether the availability of a test for Alzheimer's is reason in and of itself to actually taken the test?
There are a lot of parallels between Alzheimer's now and AIDS then and testing now and testing then. There is a huge responsibility attached with counseling in this area. It is something for the FDA to keep in mind should this test be licensed. It is something for which patient organizations must carefully prepare. It is something for those who conduct research in new treatments to consider. And make no mistake, the role of communications will be of extreme importance in shaping people's thinking about this test, because needless to say, there are a lot of complicated questions. Most certainly, legal considerations arise. The recent health care reform package should address the pre-existing condition aspects that come up as a result of taking such a test. But there are those in Congress who want to repeal the package. What then?
Finally, there is no single answer to the question of taking the test. The answer will be, and should be, different for each and every individual. But to make that decision, people are going to need a great deal of support and resources.
I have faced this situation before. And yet I see today's headline and once again wonder, what will I do?