Five years ago, right before her seventy-eighth birthday, my mother was diagnosed with Alzheimer's. The symptoms had been apparent for several years but alcohol masked some of them and denial, perhaps, masked others. Once my mother finally entered a rehabilitation facility and was no longer drinking, it became obvious that something was seriously wrong. Within weeks my sisters and I had cleaned out and sold her house and moved her into a secure assisted living facility with an attached unit for when her memory finally and completely gives out. She was given Aricept to try and slow the progress of the disease and it seems to be working. After a couple of years of railing at her fate and moments of clear and painful lucidity she has stabilized. Although her short-term memory is completely gone, she still knows family and friends, can still dress herself, and enjoy certain limited events, although she has no recall of any of those events as little as hours later, and conversations with her are repetitive in the extreme.
More than a dozen years ago, my grandmother, her mother, died after a long battle with what we now believe was Alzheimer's, although at the time was diagnosed as senile dementia. Her symptoms were the same as my mother's, although she became progressively and more quickly worse: unable to manage even the simplest of tasks.
I know that my chances of suffering from Alzheimer's have increased exponentially, perhaps as high as fifty percent, by having both a mother and a grandmother who suffered from the disease. And now, science has made breakthroughs which may well lead to an early diagnosis, as early even, as the age of fifty. I am fifty five.
So, do I wish to know? Do I wish to take the new spinal-fluid test which, according to the New York Times is "100 percent accurate in identifying patients with significant memory loss who are on their way to developing Alzheimer's disease"? Do I wish to live with the knowledge that ten years down the road I will be unable to think, remember, perhaps even dress or recognize family and friends?
I don't think so.
Although I admit that part of me wishes to know, if only to put to rest my fear of the disease, the larger part of me just can't cope. If there were a cure, yes, of course. But the fact is that the medications that are currently available may only slow the progress of the disease, and only in some persons. And the new medications being tested have side effects I am simply not ready to cope with. Although I sympathize that early detection may well help scientists to "save the brain" as they put it, of patients who otherwise would degenerate swiftly, I am not ready to offer myself as a guinea pig. Call it the ostrich syndrome but at this point I prefer the knowledge of no knowledge.
In addition, what if, like the early tests for AIDS, I got a false positive on the spinal-fluid test? The stress of waiting for another painful test would be nigh unbearable. And ultimately, and perhaps most crucially, if I should test positive, that particular information would severely limit my sense of my future and my ability to enjoy the life I lead now. Even should medications be able to slow the progress of the disease, the mere information that I had it would, for me, lead to impossible despair.
I assume I have "biological markers." I can live with that. I also assume that in ten years time the research will be perfected to a point that it may well make sense to take the spinal-fluid test and, should I show the markers, begin treatment. But for the present, doctors have run the usual tests for early memory loss on me and I seem to suffer no symptoms. A check of the ten early warning signs of the disease lets me know that none of the more serious incidents: repeatedly losing things, acting inappropriately, forgetting simple tasks, personality change, have reared their ugly head. But do I worry? Of course I do. My mother was a brilliant, accomplished woman. To see her reduced to a shattered shell of her former self is heart-breaking.
I have watched the progression of the disease in both my grandmother and my mother. My mother, five years after her diagnosis, remains physically healthy; she could easily live five more years at the least. But what is her quality of life? She can no longer read, no longer remain interested in a film or a television program. Her beloved stereo sits gathering dust. She gets anxious and disoriented if taken out of the safe haven of her assisted living for more than a couple of hours. She forgets her children's and sister's visits, can't remember what she did a day earlier. Her joy is fleeting, her grief palpable, and her life an endless stretch of things she can no longer love. The possibility of that sort of future for me is painful enough in the abstract. I do not wish to know for certain.
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Do you want to know: If you are relatively young, in good health, blogging for the Huffington Post,and have a strong family history of AD? Lisa Solod Warren makes an eloquent case for "No".
Do you want to know: If you are experiencing clear signs of memory loss and your physician is trying to determine the cause of your decline before prescribing treatment? The evidence supporting better treatment efficacy in early AD strongly suggests "Yes".
I read both sides of this debate in the popular press on a regular basis and I really don't think it is overly complicated. No one should have unwanted testing thrust upon them but physicians should have access to advances that can help their willing patients.
I explore this in more detail on the Brain Today Blog at http://braintoday.blogspot.com
The practical implications in our Alice and Wonderland health care maze--are monumental here as well---like "knowing gives my insurance company a reason to deny coverage."
This piece succeeds on all levels.
http://www.psychiatrictimes.com/display/article/10168/1633640?GUID=7387D22F-51F8-41AB-9F3C-7C18E294BCAC&rememberme=1
The biomarker(s) at this point will have more social and ethical ramifications than clinical as well as economic and political overtones, given the direction and velocity our society is currently progressing.
The clinical utility will only come when there is a significant breakthrough in treatment that requires early intervention. There is little chatter about that compared to the "biomarkers"
Joseph J. Sivak MD
http://alzheimmers.blogspot.com
A lumbar puncture (spinal tap) is also somewhat more invasive than a venipunture or getting a tube of blood drawn from your arm. It is reserved for such things as diagnosing meningitis and treating some rare neurological conditions like pseudotumor cerebri.
The real issue, will be once the biomarker(S) have made it to clinical medicine, will be when will the onset of the disease be. Alzheimer's increases logrithmically with each decade starting in the 50's.
We will want to know when, the biomarkers are not near telling us that.
My mother was diagnosed in 1979 with AD at age 62, I was seventeen at the time. No one heard of the disease back then, despite its discovery in 1908. I could not afford the biomarker testing, my insurance sure would not cover it, and I just have not had the time or wearwithall, and would have to travel to get it. I have not explored the genetic testing for the autosomal dominant forms, I am 49 and at risk for those too.
Knowing allows you to put your "house" in order. This would start with finance and legal considerations like Do Not Resuscitate, Power of Attorney, Advance Directive.
Knowing allows you to mend fences and take care of personal matters.
Many people that suffer from Alzheimer's in their 60s have their life cut short. They won't get to do many of the things they planned during their retirement years. Maybe they would do them sooner.
Knowing is not only about the person suffering from Alzheimer's. My mother suffers from Alzheimer's disease. I would have welcomed the opportunity to tell her over and over, to reassure her, that she would not be put "away" or put in a "home".
As for me, I want to know. Nevertheless, my answer is No. Taking the test would likely allow a healthcare company to cancel or deny me coverage.
Bob DeMarco
Alzheimer's Reading Room
http://www.alzheimersreadingroom.com/2010/02/about-alzheimers-reading-room.html
Your life sentence would be the catelyst that allows you to mend fences with family and friends. The kinds of behaviors that are often evidenced by the terminally ill. The difference here you would have plenty of time to enjoy life after these fences were meant.
During your life sentence it is likely that you would feel empowered to say what is on your mind. And, to do
CHRIS FLORES, MD, Palm Desert, CA