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.
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.
ReplyDeleteYes, 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.
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.
DeleteI 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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