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If you're new to this blog and want some context for it, read this post from the day I announced my Alzheimer's disease and this post about the day I announced I had lost it. For more info, visit my website with my autobiography and all blog entries in chronological order for easier reading to catch up. There's also a sermon on the spiritual lessons I've learned through this journey through my damaged mind.

Friday, March 08, 2013

Why Not Try This?

Washington DC
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.


  1. Yes! While I will shortly be engaged in a clinical trial for LMTX, took part in a brain imaging study, currently take Donepezil and Namenda as there are some indications in some studies that use of these can slow the progression in early stages -- in other words, while I will do what I can to help in the research and yes -- I sure hope we find a solution soon -- I am not searching for a cure.

    Yes, I tried coconut oil in my initial desperation after the diagnosis. But due to some rather embarrassing 'side effects'??, I now use it as I did before -- great for high heat stir fries and hand cream!

    I have chosen a vegan diet, because both my mother (who died from AD) and I have very high cholesterol levels. She was vegetarian, but used a great deal of dairy. So I am vegan partly because of the cholesterol issues (and some studies indicate there might be a link) -- but mostly because I don't want to harm 'sentient beings.' Plus I my body just FEELS a whole lot better!

    And yes, I've increased my exercise -- oxygen is good for any parts of my brain that have not been damaged!

    So while there are steps I can take be help my body, I now take those steps regardless of the AD diagnosis. As you said: "I know that I must recognize my limitations and not struggle against them." -- that is the key.

    1. I had a brief taped interview on CBS This Morning today, so I've been overwhelmed again but emails and comments. So many of what people send me(including three phone calls this morning before I took my phone number off my website) is the wide variety of possible cures and treatments. I am grateful for the concern they show, but until there are double-blind placebo trials that show effectiveness, I'm not going to spend my time running each possible lead down. I hope to write a more comprehensive post on this in the near future.

  2. Anonymous6/08/2013

    I might have to agree with you on this. My Mom took two different AD pills. But after just short period of time we could tell it most likely did not work and may have caused other problems. Her Dr 's advice to me was " you can take it and hope it works or look at it like do you really want to prolong these stages because some are nit good" and he was right, it was not good for her and wad not good for us trying to take care of her. We stopped the AD drugs and did put her Resperdol and Ambien. Mainly for her to stay calmed and get sleep at night. She would go 20 hours with no sleep. And was pretty mean without the respectfully. And she had been taking Seroquel and when we increased that to help her get rest before the Ambien & respectfully, she kept getting worse with behavior. So we stopped that and started the other two. I took care of her for eight of the ten years the AD was obvious. She was a handful. But would do it all over again. She passed away in Oct 2012 I love reading your blogs. I still want to learn about AD and maybe reading your Blog may help me understand more of what she felt and went through. Thank you.


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