MY ALZHEIMER'S STRUGGLE (11/25/08)
Ten years ago, after a year of alarming cognitive decline, I was given a "working diagnosis" of early Alzheimer's disease by Dr. Tiffany Chow at UCLA. I defied the grim prognosis, and wrote my story on the web. (See Diagnosis for details on my current diagnostic limbo.)
My first serious experience of memory loss occurred in the fall of 1997 when my mother was being diagnosed with dementia. I listened with special attentiveness to her conversation (but without taking notes) so that I could better understand how she was "losng it"--but I discovered that my own memory had gone south. I then started riding the diagnostic merry-go-round myself, hoping that mine would turn out to be a minor problem, say, of psychological issues with my mother. (There's even a name for this: "caregiver's dementia.") On June 24, 1998 I saw my MRI films and the evidence that I not only had a polyp in my nose but the cerebral atrophy indicative of a terminal dementing disease. I was forgetful because my brain had shrunk. I joined the Hemlock society and wrote an emotional letter to my children.
Since then, despite my Alzheimer's diagnosis, I've been able, as I never would have thought possible, to get my life back. I began studying rehabilitation, at first tentatively. I had just assumed that, since neurologists and psychologists didn't mention it, and there were no books on rehabilitation for Alzheimer's patients, and rehabilitation institutes didn't invite them, there was nothing to be done. But one thing I learned when I was a sociological researcher was to question conventional "reality." Now I have come to believe that rehabilitation can powerfully improve a patient's quality of life, allowing him or her to regain much lost ground and then maintain for years. What is needed is not an expensive institute, but some concepts which are not too complicated, the support of a good friend or psychotherapist, and lots of hope and hard work.
I'm honored that Linda Clare quoted these lines in her authoritative Neuropsychological Rehabilitation and People with Dementia (Psychology Press, NY: 2008). See also my Dementia Survival--A New Vision (my principal article on rehabilitation).
I believe that an important reason patients go downhill the way they usually do is because society sends them a devastating message that their lives are already over. In 2000 several of us conscious patients organized what became DASNI (Dementia Advocacy and Support Network International). Our members have written books and served on Alzheimer's boards. DASNI's mission is symbolized by our logo: a winged turtle bearing a forget-me-not in its beak. We stand for the human dignity not only of ourselves but of all who are old, poor, weak, disabled or incurable.
And it was in DASNI that I met Andrea. In 2002 I moved to Houston to be with her. We celebrated our 5th anniversary this year.
More of my story is told in the essays below. And I'm grateful to three authors for including parts of it in their books. David Shenk (The Forgetting, Anchor, NY: 2002) writes of my struggle to rehabilitate myself and to give others hope. Spencer Nadler (The Language of Cells, Random House, NY: 2001) describes my brief attempt to make a new life for myself in rural Montana. Finally, Christine Bryden (Dancing with Dementia, Jessica Kingsley, Philadelphia: 2005) tells how I went to Australia to join her in speaking out for ourselves and for all those whose disabilities stigmatize them as "biologically inferior."
What keeps me going? Ultimately, I want to leave behind a message for my descendents that when life pitches them a curve they don't have to curl up and fade away. They can get back on their feet and continue being the persons the Source of Life meant them to be.
Like many persons facing catastrophic illness I have found spirituality helpful. Liberal Judaism teaches that no matter how difficult my situation I can aspire to be a "mensch," a responsible person who also knows how to enjoy life and is interestingly individual. Buddhism teaches universal compassion based on universal sympathy. It teaches that, whatever my suffering, "this too shall pass," and that the dreaded "loss of self" is, to a significant extent, the mere shedding of an illusion. Secular humanism reminds me to continue to value reason despite my mental weakness. Unitarianism provides a community where persons like myself who create their own "fruit salad" of faiths can come together. One of my goals as a dementia activist was to see whether I could draw on the wisdom of concentration-camp survivor Viktor Frankl's Man's Search for Meaning--while rejecting his questionable religiosity. I believe I succeeded in doing this.
ALZHEIMER'S -- ESSAYS, PRESENTATIONS, ETC.
Remarks to the 2003 Education Conference of the California Central Coast Alzheimer's Assn. (Nov., 2003)
Tedious No More! (Sept., 2003)
I Have a Name Given by the Sea (Feb. 2003)
Holistic Interventions for the Personality-Rehabilitation of Brain-Dysfunctional Persons (Feb. 2002)
Awareness (assessing the quality of life as Alzheimer's disease advances--Dec. 2001)
Onward Through the Valley (Nov. 2001)
Dementia Survival -- A New Vision (March 2001, rev. Dec. 2003)
Christine Bryden and Morris Friedell, Dementia Diagnosis -- "Pointing the Bone" (March 2001)
The American Dream and Alzheimer's (Jan. 2001)
Eva -- a parable (Jan. 2001)
A Meditation (Oct. 2000)
Is the "Loss of Self" Inevitable? (Oct. 2000)
Invictus (Oct. 2000)
Through the Valley--the First Two Years (Aug. 2000)
Potential for Rehabilitation in Alzheimer's Disease (June 2000)
The Loneliness of a Person with Early Alzheimer's Disease (March 2000)
Incipient Dementia -- A Victim's Perspective --written when the likely diagnosis seemed FTD (July, 1998)
The Road to Alzheimer's--excerpts from my journals in late 1997 and early 1998