Huntington's disease

Vincent Brévart
Vincent Brévart


Huntington's disease





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Aggravating factors

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Strenuous physical activity

I am fortunate to be in a privileged position to watch my symptoms and see the way they develop over time. I have a very quiet and regular life. I sit in front of my computer for long periods (sometimes more than 8 hours a day), writing my programs peacefully. And even if I am very focused on what I'm doing, I easily spot the slightest involuntary movement of my body. It's not the same when I train at the swimming pool or ride my bike. During these more active periods, there must be some symptoms that escape my notice. But overall, I am most probably in the best position to describe the slow development of the disease, or its non-development. Besides, I keep a Symptoms diary where I carefully record the dates of occurrence of the movements, their intensity and precise description, as well as all the events that may have had an effect on them, like when I'm late taking my tablets, for example.

To be sure to get my beauty sleep, almost every day I have a little nap of one hour around midday. I then don't sleep deeply, but even so there is a short phase of relaxation that has certain similarities to falling asleep. As soon as 2010, it became obvious to me that each time I had a strenuous physical activity in the morning (bike ride or weight training), my nap was more agitated. I had at least a brusque leg or arm movement, rather powerful. I often had a contraction of the lips and around the mouth, and sometimes of the tongue. I could also have my both eyes blinking strongly at the same time. Or the forefinger (sometimes even the little finger) of one hand that would go up on its own, with strength. My movements may considerably vary in their suddenness and amplitude. Those of a nap after a sports morning were clearly sharper than those of a normal nap.

So, I made the experiment of taking double doses of folic acid during my sports activities, and rather than opting for two tablets of 5 mg every two hours, I tried the rate of 1 tablet every hour. The result was significant. It could probably be verified by a doctor. When I increase the doses of vitamin during my physical activity, I still have a few movements during the following nap, but they are much weaker. The leg hardly moves, the finger may go up but very slowly, smoothly. Some naps may be done without any movement.

During my 2011 holidays, when as usual I move around a lot with 3 to 6 hours of bike ride every day, I noticed that my symptoms were increasing in the evening, even before going to bed. I was quietly sitting in an armchair, reading a book or consulting my region maps to prepare the ride of the following day. And then, I could have several little foot or hand movements. The foot slightly moved at the ankle, and the hand seemed to retract, all fingers at the same time. The phenomenon, absolutely not annoying, could still occur about ten times in the evening. So, I decided to take 1 tablet every hour in the daytime, and a few days later, the evening movements had disappeared.

The two following years, I increased in this way the dose of folic acid during my holidays and my days of physical activities. And as during the rest of year it seemed to me that the little movements were coming back in the end from time to time, I thought in 2013 that it was wiser to change to the following treatment:

  • During the day, 1 tablet of 5 mg every hour

  • During the night, 2 tablets of 5 mg every two hours

It may seem to be a heavy and dangerous treatment, but when you know how serious is Huntington's disease, which ends with the total inability to do anything, the person being stuck in a wheelchair, eyes haggard and empty, you don't hesitate to take risks.

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The adrenaline rushes

It also very quickly became apparent to me that if I had a strong emotion (watching a soccer match on TV for instance), my movements were more numerous on the following days. Same thing when trying to ride up to the top of a big hill. Or when doing a timed sprint at the swimming pool, or when letting myself race with another swimmer. The nights and the naps of the following days always seemed to be disturbed by sharper and more numerous movements. So, I've gradually eliminated the situations with a very high increase of heart rate, by recording matches and watching them later more quietly, or by avoiding excessive physical effort. I also avoid running after a bus, or getting upset after a message from a dissatisfied user who, having lost a few belote games in a row, sends me insults and accuses my program to cheat against him.

I installed on my computer a little program that spots the discourteous messages and automatically responds to them in a very polite way. This saves me from entering into endless arguments. Moreover, my belote program now includes the best answer: you can give an advantage to North-South! Which goes to show that you can always find a solution to a given problem. All you have to do is search.

At the end of the 2011 season, I also decided to stop playing in bridge tournaments. I used to play only one afternoon per week, but except on very rare cases (nothing but bad hands, nearly no hand played as declarer or only too easy contracts), I always felt a big surge of adrenaline. I just had to bid a more or less difficult slam, or to double a contract bid by players of a higher level than me, and my heart started to beat fast under the excitement and the desire to win. It was not unpleasant, but I had the impression that starting from the next day, I was more restless. And as it happened every week, it became difficult for me to observe anything about my treatment. This is why in the summer of 2012, I replaced my weekly bridge tournament with a short bike ride, with no stress or great effort. And then I felt much better for it.

During my 2014 holidays, I signed up for a bowls tournament organized in the holiday village where I was staying. I was going to play with a very kind pensioner who could only roll the bowls. So, I was going to have to throw them, and as I try my hand at throwing but I'm not a "thrower" at all, I thought we were going to be eliminated in the first round. But we went to the final! Of course, my heart was beating hard during this last game that we unfortunately lost. We had a wonderful evening, but I was a bit worried about the consequences of these long hours of play with a lot of adrenaline. And I wasn't wrong. Two or three days later, during the night, I was waken up by a new symptom that I called electrocution because it really gave me that impression. I was peacefully sleeping on my front, as I usually do. When suddenly I pushed up with my hands, my chest raising off the bed, the back of the neck extended upward. My entire body was constantly agitated by a continuous but non painful spasm that lasted nearly 2 seconds. I was awake and conscious since I was afraid of falling out of the bed, but I could no longer do anything. It was a sensation quite close to the strong leg or arm movements, but over a much longer time and concerning all limbs at the same time. At last, the convulsion stopped. I got up, took a double dose of folic acid and went back to bed. The rest of the night was quiet.

The electrocution phase, as I call it, came back on the following days, during two other nights, but always diminishing. The last spasm lasted only about a second, with much lower agitation.

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The experiment of 2015

In September 2015, I tried an experiment. As my electrocution symptom had only come back once in June, but very slightly, I had the idea of playing again in bridge tournaments, to see if I could prove the link between adrenaline and my night spasm. I also had the secret hope of managing to keep calm and cool when playing a contract, by the sole power of my mind. Alas, this was not at all the case! In the first tournament, yes, I did well, but it was mainly because my partner had done most of the job. But at the second and third sessions, the power of my mind didn't resist more than five minutes! And I felt adrenaline rush and quicken my pulse during the three hours of the tournament. Strangely, I didn't get the electrocution symptom I was expecting. However, I had so many leg and arm and shoulder movements during the following nights, I've been waken up by such painful stings in the toes, with instant contraction of the lower leg, that I ended up canceling all the tournaments I intended to play with my different partners. Quite obviously, for me, it was not a good idea to get back into regular high-stress and high-adrenaline situations.

But one of my partners was still on vacation, and I couldn't cancel in time a tournament I was to play with her one month later. So, I took part in this last tournament rather casually, and regretfully of course, as I was sad to have to deprive myself of this exciting activity in such a warm club. Once again, I realized how incapable I am of staying totally relaxed during a tournament, maybe because we could have finished first, and as usual I felt the effects of adrenaline throughout the whole afternoon. Well, during the night of the following day, at 5 o'clock in the morning, I again experienced an electrocution of the same type as that of my bowls tournament of 2014. According to what I wrote in my diary, I had the impression that the spasm lasted 4 seconds, always with the fear of falling out of the bed, the convulsion being so violent. The rest of the night was calm, and the phenomenon has not occurred since that famous day of November 2015.

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Analysis errors

Of course, I know that one can be mistaken when analyzing events and linking some of them while they have no relation of cause and effect. I know it all the more so since I receive numerous messages from Belote players in which they maintain that they are 100% sure to be disadvantaged during the card dealing. And they tell me that they have made many experiments on my program, they have carefully counted all the points scored, they have played a large number of games. They are certain of what they say, they have a blind belief in it: their opponents get all the aces and all the melds, they are quite convinced of it. And that is untrue. But they initially have a preconceived idea which will then influence all their analysis. They will not count properly, not memorize correctly, or just be mistaken about the number of occurrences necessary for a test to have any reliability.

We are not always aware of the rigor required to demonstrate a piece of knowledge. One can easily understand this by running an automatic test on my Belote or Bridge programs. After around fifty deals, the East-West team may be 15 deals ahead of North-South. What was I saying?!, some will say. All right, they make another test. And then again, East-West is 10 deals ahead. Is that not evidence enough?!, they will continue. Well, no, not at all. It doesn't mean anything. The number of tests is far too small and their duration far too short. Much longer tests are needed to analyze a random phenomenon like dealing cards. Only a test of more than 10,000 deals can be used to check that the win rate of each team always nears 50%.

So, I know very well that I can make a mistake analyzing that an event A (an adrenaline rush) is connected to an event B (an electrocution symptom). Yes, we can accept that the connection between these two events seems to be confirmed by the fact that when eliminating A (adrenaline), event B (electrocution) no longer appears. But it's not a real scientific proof. It may be only an analysis error.

To correct my errors or confirm my observations, it is therefore imperative that a researcher establishes strict and serious experimental protocols, and that he (or she) carefully works on my case. Hence the title of my next page:

Next page:

I'm looking for a researcher

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