Why Not Try This?

Recently a good friend of mine was quite excited to tell me about new research being done in which certain brain exercises can actually rewire 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 only takes an hour or two a day,” he said.

But I am 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 rewire 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 generalized damage due to Alzheimer’s disease.

But my reaction certainly raises some questions: Why not? What can I lose? Why not try everything?

My reluctance seems strange even to me.

Perhaps it is 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 other things. One or two hours a day of brain exercises is a significant diversion from genuinely living throughout 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 have had at least three others suggested to me, each one with its own small chance of success. Why not try this one, or that one, or the one over here?

But it is 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 have been in this position before. During my public teaching or lecturing or writing, I have often referred briefly to my depression. It is 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 am 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, one of my patients, Peter, had Multiple Sclerosis (MS). At the time there was no effective treatment for the disease. Peter would come in every month or so having heard 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. In other words, 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 was not 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 am making with family and friends.

I have a particular vocation when it comes to 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, and help others to accept their disease and reduce their isolation. Part of what that means is to accept what is 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, and perhaps trying it out will further our collective knowledge. But I know that this is my path, which may very well not be suitable 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 am clear about what I am doing.

An author and former physician, Dr. David Hilfiker was diagnosed in 2012 with a progressive mild cognitive impairment. His doctor thought it was Alzheimer's but additional testing proved this initial diagnosis to be wrong. Now David must learn how to come to terms with the reality of worsening cognitive issues that appear to have no cause.

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