Vincent Brévart

Vincent Brévart

Huntington's disease Français

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Huntington's disease





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My very first symptoms

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The first clicks

The first strange symptom I had dates back to the night of November 23, 1985 (I was 30 years old at that time). It was just a "click" in my head, while I was about to fall asleep, lying motionless on my bed. I thought it odd. It was like a short high-pitched sound in my head, but not coming from the ear itself. Not a snap but instead a very little "electronic" noise, with a loud beginning and a short echo at the end.

I was not overly worried by that. Except that this click came again on the next day, always when I was falling asleep, and that I heard it in the same way on the following nights. Later, I didn't pay much attention to it, but I remember that during summer 1986, it was always a single click that would occur each night. And then soon it was two or three clicks, spaced by a few minutes, that seemed to make sure I would fall into deep sleep. It was not unpleasant after all. If laying on my bed I was still mentally active and not about to fall asleep, no click would occur. Next, if I turned and drifted off into daydreams more conducive to sleep, then, click, click, click, the sandman, by some clever mouse clicks, would seem to come and close my few windows still open.

These clicks never stopped until June 2007. And they have always increased, so far as to become much more numerous and much stronger. Towards the end, I would feel about fifteen clicks, sometimes very close together, and around ten times louder than the very first click of 1985. But I'd got used to them, all the more so since they would occur only when I was falling asleep and that it's always comforting to fell sleep coming on. What was more worrying was the question about the development of these unexplained clicks. I knew how they had developed over my last 20 years. And when extrapolating this development, I was forced to wonder: how was all this going to end?

In June 2007, the clicks stopped all of a sudden.

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My first movements

The clicks went away suddenly and definitively. One night, I was lying after a very busy day, and dozing on my back I was waiting for the famous liberating clicks. And surprisingly it was not my usual clicks that appeared, but some little and jerky leg movements, both legs at the same time, very light but clear all the same. There were about ten of them. And then I fell asleep, as though nothing had happened.

But the following night, when the leg movements came back instead of the clicks, I had to admit that I had passed a milestone. At the age of 52, I had my first involuntary movements, and even if they would occur only when falling asleep, it was a bad sign for the future. As for the clicks, I never heard of them again. It was not either clicks or movements, sometimes the former, sometimes the latter, no. When the movements appeared, the clicks vanished definitively.

Passing this milestone was not a problem for me, inasmuch as my movements would not appear during the day but only before falling asleep. And my first click had taken 20 years to become a leg movement. I could hope many more years before it would change into something more bothersome. But in December 2007, while my little leg movements had become my inevitable ritual of the night, I was intrigued by a strange phenomenon. About once a month, my evening movements would not appear during two or three days. I was not very happy about it. As a developer, I didn't like it. It was a kind of "bug in the bug" that I had to explain.

So, I tried to find out. My movements seemed to always stop on the same day of the week, that was odd! I studied whether in my activities of that day there was some particularity that could explain the phenomenon. But no, my weekly activities were so regular that if my movements depended on the activity of this precise day, either they had to stop every week, or they should never stop at all. Then I had the idea of studying my meals. Was there a food that I would eat only on that day, but not every week? I remembered very well what my evening meal was the last time the movements stopped. And indeed, incredible as it may seem, there really was in this meal a food that I would only eat on that day, and around once a month. And this food was...

Canned spinach!

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My first six months of treatment

Spinach! Do you believe in this sort of treatment? Well, not me. In any case, not at first glance. If anything, I had fun believing in it. All right, I said to myself, I'm going to make some tests and I will see, but I must not delude myself, it cannot work. But, and I agree that I didn't make things in a very scientific way, it so happened that the first day I ate spinach at the evening meal, the night movements didn't appear. Now, after that, I should have carried out many experiments, with spinach, without spinach, etc. Yes..., but no. Me, I want above all to be all right. And I stupidly said to myself: if it worked, then I eat them two or three times a week, and that's all. And that's how I started my spinach treatment. Yes, it's true, my reasoning was not very rigorous, I admit.

In fact, the treatment didn't seem to fully work. One week, it was good, but the following week the movements would come back. So, I gradually increased the doses by adding one tablespoon of spinach to my two meals (lunch and diner). So, at noon for example, a fried egg with ham and... a spoon of spinach. And in the evening, a grilled meat with spaghetti and... a spoon of spinach. It was tolerable and seemed effective for I had practically no more movements at night.

Even so, without being really rigorous, I tried twice to stop eating spinach because it seemed to me that believing in such a treatment was not serious. The only thing was, I then couldn't sleep anymore! And it was no longer little movements occurring when I was falling asleep. It was sudden and brusque movements of my legs, arms and shoulders, appearing around every 3 or 4 minutes and literally preventing me from falling asleep. On my two tests (I should have made more, I know), I had no other option but to open a spinach can at about midnight, to warm it up in a saucepan, and eat a few spoonfuls of it. I can tell you that in the middle of the night, with no accompaniment and no seasoning and no real hunger, it was not delicious. But strange as it may seem, each time it proved to be the solution to stop my movements and allow me to go back to sleep.

So, I ate spinach twice a day for six months (in addition to a balanced diet, of course), with almost no more movements in the night. My summer holidays 2008 were the most pleasant ones. And above all, it's there that I had a brilliant idea that had not crossed my mind yet (I'm a bit slow!). When back home, I imperatively had to search on the internet which component was so important in spinach. I thought it was iron, as people were inclined to think in my younger days, at the time of the cartoon series Popeye the Sailor Man. Could Huntington's disease have something to do with an iron deficiency? I was longing to find it out.

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My intense symptoms of 2009