"Furthermore, studies show that mice who have a disease similar to HD are found to show much slower progress in their disease if they are exposed to a stimulating environment."

My name is Brad, I live in Tokyo and I'm a Zen Buddhist priest as well as a person at risk for Huntington's disease. I have no medical qualifications. My mother, 60 years old this year, has rather pronounced symptoms. I've worried about HD since I was a teenager. But recently I have begun to understand that I need not wait helplessly to see if the disease will strike. There is action that can be taken by at risk people which I believe may be extremely effective.

About 2 years ago I began to notice things in myself that could be the early symptoms of HD. These included twitching muscles, sudden involuntary jerking movements of the fingers and feet, involuntary movement in the tongue and a general tendency towards anger and irritability. Of course, many non "at risk" people can say the same thing. But I was worried. After searching in vain for answers from others (books, websites, friends, doctors), I decided the only person who could deal with the problem was me. So what could I do?

The Heart of Wisdom Sutra, the main text of Zen, says "form is emptiness, emptiness is form." This is one of those cute little Zen phrases stupid people like to throw around as if it were something cool and mysterious. It isn't. It is a straight forward description of our everyday experience. We tend to divide the world we live in into two parts, mental and physical or spiritual and material. Yet we never experience just one side or the other. All of our activities have a physical/material (form) side and a mental/spiritual (emptiness) side. In fact, there is no sharp discontinuity between the two. Body and mind are the same thing. I decided to use that as a basis for seeing if anything could be done about my symptoms. I did not concern myself with the question of whether or not these were actual signs of HD. I just wanted to see what I could do. For anyone who has qualms about the religious nature of what I am saying, Zen Buddhism is not a religion. Think of it as an exercise program with pretty statues. Whatever beliefs you have are no hindrance to Zen practice.

There are muscular movements which we call voluntary and involuntary. My strange jerks and things seemed to be involuntary. But I needed to find out what "involuntary" really meant. If I reach across my desk, pick up a paper clip and use it to pick my nose, that's called "voluntary movement." In most cases I don't actually think about what I'm doing. I may not even be aware of the action at all until the girl who sits at the desk opposite mine asks when I got my nose pierced. Nevertheless, in these cases we have a sense of intention in the movement. We don't imagine the movement prior to doing it, nor do we verbalize it mentally. But some kind of what we might call "movement within the mind" occurs before the physical action takes place. I decided to look very closely at my involuntary movements and see if there was any corresponding activity within my brain which I could detect.

I sit in Zazen every morning for 45 minutes and every evening for between 20 and 30 minutes. This is a simple practice which is better thought of as an exercise than as "meditation." You sit on a small cushion, facing a wall and try to keep your spine straight for a set period of time. Believe me, it is far easier said than done! There are no weird words to concentrate on, no special things to think about, no funny questions to answer. For a complete explanation of the practice check out http://www.windbell.com/download.html#anchor126613. Zazen provided a very good opportunity to watch my body, like a bird of prey waiting for a mouse to pop its head out of its hole.

Since I don't have such movements all the time, I had to watch for a long while. It took about a year and a half of doing this before I could confirm very clearly that there is some kind of mental activity which takes place prior to any of these so-called involuntary movements. It is very subtle and occurs almost simultaneously with the movement. But the mental activity always comes first, no matter how short the gap between mental activity and movement. Once I caught the mental side of the activity, I found I could control it. As with everything else, I found there was no sharp line dividing voluntary and involuntary movement. It was more of a fuzzy, gray area.

As I was beginning to do this I found I had developed a twitch in my left cheek. This was a particularly annoying little twitch which went on and on and on for about 6 weeks. It was very difficult not to get completely discouraged by this. But I persevered. After a very long time I discovered something surprising. I was making my cheek twitch! And I was doing so in precisely the same way I might pick up that paper clip and shove it up my nose. The intentional activity within my brain that produced the movement was extremely subtle and hard to detect. But once I found it, I could stop twitching as easily as I could stop picking up that paper clip. It wasn't so much stopping an involuntary movement as not doing a voluntary one.

I have to say that I took many, many wrong turns trying to do this. The main problem was I looked at these movements as if they were somehow apart from me and I had to use my force of will against them. Actually, the trick was to understand that I was initiating the movements and that I could refrain from initiating them. Our action is what we are. The twitching is always the result of some sort of subtle intentional activity. But often the activity is so subtle it is nearly impossible to see that you are the one doing it. There is no separation of body and mind. Drop the intentional activity and the movement stops.

My Zen teacher told me "There are two factors, habit and heredity. Heredity cannot be changed. But habit can be changed. And habit is stronger than heredity."

In Buddhist philosophy the word "habit" applies to a far greater range of things than it does in usual speech. Much of what we call our "personality" would be described as "habit" by a Buddhist. These are mental and physical habits developed through repetition. The symptoms of HD might also be a kind of habit which we may be able to correct. Even in a hereditary disease we inherit not only the genes, but the patterns of mental activity which, when added to the genetic tendencies, produce a disease.

Dropping these kinds of habits isn't easy or quick. I can't imagine anyone could learn this little trick without practicing Zazen every day. I also can't imagine anyone who did this would see any results at all for at least 18 months. I play guitar and I assure you that for at least the first three years I was lousy. Anyone who plays any instrument or sport can tell you that developing such a skill takes practice and patience. But I do believe anyone could start working on this at any stage in the disease and see real results.

There are many ways to look at what I am doing. No one really understands the mechanics of how HD causes the deterioration it causes. Part of the brain is destroyed by the disease, but no one's quite sure why. One theory has it that a problem in energy production within the affected parts of the brain is to blame. Maybe what I am doing is righting that problem as it occurs. It is true in the case of any disease that if you can deal with the symptoms while they are still minor, you have a better chance of arresting the disease. What I am proposing here is not supernatural. It is not the result of some kind of psychic power. It is a natural ability which most of us are not aware that we have.

If nothing else, what I am working on removes the sense of helplessness most at-risk people feel. You still sometimes find the statement that "if you have the gene you will develop the symptoms of the disease unless you die first." That statement is not scientific. My 9th grade science teacher asked us if the statement "when I drop this pen it will hit the ground" is a scientific one. It isn't. We do not know what will happen when we drop a pen. A sudden gust of wind could come along and propel it into the ceiling, and so on. Science only talks about probabilities. At any rate, if I cannot stop the symptoms of HD entirely by this method, I can most certainly slow down the progression of the disease tremendously.

Two things I have learned recently make me believe I am onto something. One is that persons with HD are said to be unaware of their own choretic movements. This is significant because a strong awareness of the body and its actions is the most important part of what I am proposing. Secondly, Jerry, who runs his site, told me an anecdote about witnessing his HD affected wife once brush some hair out of her eyes and once walk perfectly normally to the bathroom while half asleep. He noticed that the chorea stopped while she was asleep. The balanced mental state which occurs while practicing Zazen does sometimes resemble the state of mind we often experience just before falling asleep. The first time I was able to control an involuntary movement happened just before falling asleep. Furthermore, studies show that mice who have a disease similar to HD are found to show much slower progress in their disease if they are exposed to a stimulating environment. One of the side-effects of long Zazen practice is that everything in our environment becomes far more stimulating. Colors are brighter, sounds are clearer, sensations more present and so on. Even a drab and dull traditional Zazen hall is a rich and stimulating environment to a person who has practiced for a few years.

I am interested in hearing from anyone, pro or con, about this idea. Anyone who wishes to contact me about this can do so by e-mail at; doubtboy@gol.com

Visit the Brad Warner (Zen Master) website at http://www2.gol.com/users/doubtboy/

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Source: For the HDLighthouse by Brad Warner, Zen Buddist priest 09-May-2001

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