Vincent Brévart

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Huntington's disease Français

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Huntington's disease





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Research on caffeine

By an article in the Figaro of September 9, 2014, I heard of French researchers who studied the possible role of caffeine in the earliness of onset of Huntington's disease. I found their work interesting even though I have not drunk coffee since 1984. I used to drink coffee and tea when I was young, but never in the afternoon for my sleep was highly sensitive to caffeine. In 1984, I started computer programming and my pace of life slowed down considerably. It's at that time that I felt "big thumps" in my chest, as my heart seemed to stop for a second and give a big thump on the next beat. I could feel it mostly when sitting and working, or even during the nap, with then a feeling of moving horizontally on the bed at the time of the stronger beat. It was rather unpleasant. After consulting a cardiologist, I was told that it was caused by an occasional extra heartbeat (called extrasystole), and that it was probably due to caffeine. Even then I opted for the simplest and most radical solution to the problem: stop drinking coffee and tea.

But since the years 2000, I had started drinking decaffeinated coffee again, with a little milk. I used to drink one or two cups in the morning, and one in the early afternoon. In May and June 2015, I had small unusual movements of the right hand, almost every evening around 8 pm, when I stopped working to watch a little television. It was jerky movements affecting the top of the hand, near the thumb and the forefinger but different from those shown on my video. The fingers were not concerned, there was just a repetitive and marked tremor of the top of the hand. I wasn't too worried about it. I was just waiting to see how it would evolve.

During my two weeks vacation in July 2015, these movements disappeared completely. I attributed that to my holiday activities. But when I got back, after only two days spent at home, the hand movements reappeared as if by magic. I was still on vacation, I had not really changed my habits. The only thing that had changed was that I could drink decaf again. Because during these holidays, as I was renting, I had bought a small pot of decaf, but I had forgotten the sugar! As a result, I said to myself: too bad, I'll do without decaf. I come back home, I drink decaf again and then, the movements are back. I found that very odd. So, I visited websites about decaffeinated coffee, and much to my surprise, I learned that there was caffeine in some of these products. In smaller amounts, but there was some all the same. Immediately, true to my motto Take heart! Run away!, I stopped drinking decaf. And my hand movements of the evening, so characteristic, have not reappeared (not once) since August 2015.

A similar phenomenon occurred in December 2016. I had bought dark chocolate truffles for Christmas, and I could eat 2 or 3 of them every day, with delight. But after about two weeks, the little finger of my left hand started to regularly move. On the last days, it moved a few times every fifteen minutes or so, which was rather worrying. I said to myself: It cannot possibly be the chocolates. There is no caffeine in chocolate! Well, in fact, there is quite a lot, and particularly in dark chocolate. Like a shot, I threw all my truffles in the bin, and two days later, my little finger stopped moving. The more it goes, the more I think caffeine is a real poison to me.

There again, when eliminating event A, event B does no longer occur. It seems to show that A causes B, but it's not irrefutable proof. I leave the information here, for researchers working on caffeine and Huntington. I have contacted them several times, but how could they respond to me?

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About the difficulty of studying my case

Because I am not an easy case: I'm all right! When I tell my neurologist, that I consult once a year, that everything is fine, he answers me with a smile: People don't often come to tell me that, but I'm glad you do every year. Then he tests my reflexes, makes me walk a lot. Maybe he sees that the disease is developing? But he doesn't want to tell me. As I'm still fit and my symptoms have not reached a severe stage, the disease has not yet started and the doctor is not allowed to make a diagnosis. It's then difficult to talk of a possible treatment since there is not even a real disease!

Besides, I'm not a subject easy to compare with others. I don't smoke, I don't drink alcohol and I never take medicines (apart from vitamin B9). Moreover, I have a stress-free way of life, with good control of my diet and physical activities. It's not very common, and it will most likely be difficult to analyze whether these behavioral factors play an important role in the development of the disease or in the effectiveness of any treatment.

Anyway, studying my case would be very complicated. How to observe my symptoms? They are too infrequent, I can't make them happen on the same day and time of a doctor's appointment. And I refuse to let them get worse because I'm afraid of no longer being able to get rid of them later. I strive to find ways to prevent symptoms from appearing, but if I manage it, how can I prove it? I had the idea of a short experimental protocol, which could perhaps show a result. But I'm probably wrong about the conclusions that could be drawn from it. Here is the idea:

Test idea

The researcher prepares groups of 4 tablets, each group being numbered. These test groups contain either folic acid (active group) or an inactive product (placebo group). The researcher sends me the tablets, he is the only one to know which group is active or placebo.

As soon as I get the test groups, at a time of my choosing, I use a test group (taking 1 tablet every hour) instead of my normal tablets of folic acid. In the following 2 or 3 weeks:

  1. If I notice no change in my health, I label the group number as active. And I can continue the test without further delay.

  2. If I notice much stronger movements, I label the group number as placebo. And, before continuing the test, I wait until I get back to a stable state with no movements.

That way, I never set myself a delay of more than 4 hours when taking my vitamin. I make sure I'm always able to get back to my initial state before the test. To prevent any aggravating factor from distorting the test, I take a test group only if I am in a stable state with no movements. If just after taking a test group an aggravating event occurs (like being late with my vitamin or an adrenaline rush), I label the group as unknown without result.

In the end, I must be able, after a test that may last one or two years, to give with no error the numbers of the placebo groups and show the active principle of folic acid on my movements.

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A funding problem?

But who will fund such a test, or a more serious study of my case? Researchers are already all busy working on drugs that could soon improve the condition of severely affected people. And anyway, for any research, you need funding. Who will fund a research on a product like folic acid that has already fallen into the public domain?

Or is it a problem of medical education, with doctors much more oriented towards the cure of people in bad health? In an article in the International New York Times dated December 29, 2014, several American researchers report the case of a man whose family is affected by an early onset of Alzheimer's disease. As this gentleman was still fine at the age of 62, he thought he had escaped the genetic mutation of the disease. Yet, he decides to have the test and finds that he has the same mutation as the other members of his family, who were all ill very early. The researchers are interested in his case for they want to understand why he didn't develop the disease. But they recognize that their research is not simple because it goes against their medical education. The range of possibilities is endless, they must study the genetic and environmental factors, and in the end they admit that it is not really easier to understand why people are in good health than to understand why they are not. But they have confidence in their research and the gentlemen in question says he wants to help them.

I am in about the same situation. I wonder why I am still in good health. And I'm looking for a doctor or a researcher who would ask the same question. Maybe in a year I'll be ill and I will start degenerating like the other patients affected by this disease. But even if that were the case, considering that I am probably going to live longer that my father who died at 66, wouldn't it be wise to look for the possible reasons for my longer survival? A few more years to live pleasantly, even under treatment, isn't it worth it? And are there not, behind my observations, some of which are very likely erroneous, one or two truths that could lead to a better understanding of the disease?

So, who? Who will study this treatment path that my story seems to bring to light? And who, if his (or her) research is successful, will get the Nobel Prize in Medicine for his (or her) discovery of a preventive treatment for Huntington's disease?


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