A good friend was quite excited to tell me about new research being done in which certain brain exercises can actually re-wire the brain. He gave me a book on the topic, which, out of deference to him, I will at least look at. His thought, of course, is that I should get involved. “It’s only an hour or two a day,” he said.
But I’m not inclined to spend much time evaluating the treatment, even though I have heard that it might be effective in the case of certain types of stroke. To re-wire a brain in which specific neurons have been knocked out while leaving all others untouched—as happens in a stroke—seems to me quite different from rewiring a brain with Alzheimer’s generalized damage.
But my reaction certainly raises the questions: Why not? What can I lose? Why not try everything? My reluctance seems strange even to me.
Perhaps it’s just apathy, a well-known symptom of Alzheimer’s. But there are more objective reasons for my hesitation, too.
First, deciding to do one thing means deciding, if only passively, not to do others things. One or two hours a day of brain exercises is a significant diversion from living the limited time I have left.
Second, this research is in its very early phases with no actual evidence of effectiveness in Alzheimer’s. So the chance of this approach having a positive effect is tiny. There are many such untested treatments out there. Already in my emails I’ve had at least three others suggested to me, each one with its small chance of success. Why not try this one, or that one, or the one over here?
But it’s more. Spending time and energy trying to fix myself seems to me like a form of denial of my disease and its terrible future.
I’ve been in this position before. During my public teaching or lecturing or writing, I’ve often referred briefly to my depression . It’s a way of bringing depression out of the shadows and reducing the stigma that sticks to it. Almost invariably after such a lecture, someone would come up and suggest a “new treatment” that usually seemed at least reasonable and was purported by someone to be effective; there were dozens of them. Each person, I’m sure, meant well but behind their “suggestions” I felt the implicit challenge: How could you not do absolutely everything possible to treat this disease?
When I was practicing as a rural physician, I had a patient, Peter, a man with Multiple Sclerosis (MS). At the time there was no effective treatment for the disease. Peter would come in every month or so having heard about or read about a new treatment that he wanted me to facilitate. In medicine the number of “possible” treatments is inversely proportional to the effectiveness of accepted treatments: If there are a hundred treatment options out there, you can be pretty sure that none of them is effective. I had no confidence at all in these new treatments for MS, but I wasn’t about to interfere unnecessarily with Peter’s path of hope. But as I watched him chase one mirage after another, I wondered whether he could ever come to peace with his illness.
Might not one of these new treatments for Alzheimer’s actually work? Of course. But which one and with what likelihood? I prefer accepting my future and dealing with it as best I can. I could see that following these leads could bring mostly frustration and tension, inability to talk so openly about my disease, decreased ability to notice the fine differences in my condition, and less time enjoying the newly emotional and loving connections I’m making with family and friends.
I have a particular vocation around this disease: to share with others my experience of it in order to reduce the fear it produces, puncture the stigma, point out the positive sides, help others to accept their disease and reduce their isolation. And part of what that means is to accept what’s happening, pay attention to it and chronicle it. Others will choose to fight the disease; more power to them; perhaps they will find an effective treatment; perhaps trying it out will further our knowledge. But I know that this is my path, which may very well not be right for others. Certainly many people will judge my decision as crazy. I could come to regret it, too. But after living with myself these past decades, I know that I must recognize my limitations and not struggle against them.
I fear this post will make no sense to anyone. But I’m clear about what I’m doing.