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Curing Tourette’s Part 2 – Tourette’s Syndrome Facts

tourettes

the man himself

Good day sirs and madams, and welcome to part 2 of Curing Tourette’s. Today we’re going to be starting a list of Tourette’s Syndrome facts. I’ve been thinking a lot about how I want to approach this series. There is an incredible amount of variables I’m testing, and a whole mess of data I am tracking. Frankly, the project of figuring out exactly what I have to say and what order I want to say it in has been a little daunting, but I think I know how I want to do it.

But I will need your help. Now, it will probably be most helpful to hear from the readers who actually have Tourette’s Syndrome, or from parents of children who have TS, but I do not want to exclude anyone. If you know someone with TS, or you think you might, or you overheard something in a movie, on TV, or anywhere else about any sort of tic disorder that might be Tourettes, please let me know. Speak up.

This page will be the Tourette’s facts headquarters. In the comments section, please tell me anything that you consider a fact about this movement disorder, or anything you know of that anyone else considers a fact. As the list grows, I will add to the article, up here in the body of the post. I will discuss every point as my own experiences and hypotheses will allow, and whenever possible I will provide suggestions that I believe are worth testing.

Read: not providing medical advice, but trying to help us all ask better questions and know what data to focus on and what we can discard.

So I’ll start for now with something I know to be a fact about Tourette’s. It was named after this guy, Gilles de la Tourette. That link will take you to a brief bio I wrote of the man that I buried in the background of the blog so I could link to it in this series.

So, please help if you can. This post will probably eventually span a few thousand words, but it is going to be a helpful discussion, I promise.

Tourette’s questions and associations

Okay, I am back. I’m going to start listing some of the questions and associations that I’m going to be exploring on this page and in this series. I’ll refine them with your input, observations, and update them as my own experiments and perceptions shift.

  • Why is Tourette’s more prevalent in males?
  • Why can’t neurologists agree on when normal fidgeting stops and TS starts?
  • How many people actually have TS? This gets a lot tougher to answer when you consider the second point.
  • Why do the ages of Tourettics vary so wildly with respect to the  onset of the symptoms?
  • What role does breathing play?
  • What environmental factors are associated with increases and decreases in tics?
  • I associate movement from one room to another with an increase or decrease in tics
  • What role does nutrition play? I’m particularly interested in the effects of stimulants on Tourette’s
  • I associate the time of day, or the amount of hours spent conscious as a gauge of how strong my urges to have tics are
  • It seems consistent that when two people with TS are in the same area where they can hear or see each other, they will both experience a worsening of tics. I am very interested in seeing whether a person who can control their tics, or banish the urges altogether like I have, can have the same effect on someone else with tics. In other words, can two people make each other better in the same way they can make each other words, symptom-wise? I suspect this is something along the lines of entrainment on the biological level
  • Simultaneous tics versus sequential tics – can one be changed to the other?
  • I believe that tics can be altered to the point where they will do the least possible damage to any tissue involved in the movement or vocalization – I also believe that it is this process that eventually led to the ability to eradicate my own tics

That’s it for now. I’ll be back later to expand on these.

And…back to the post

Then, early next year, I am going to release a DVD that will outline, step-by-step, what has happened to me. Some things must be shown to you in a different format in order to make sense.

Thanks!

PS: for anyone who might have wondered if I declared myself cured prematurely, I didn’t. Better than ever!

Josh

Strength Training For Body and Mind

Comments on this entry are closed.

  • frank November 18, 2010, 12:59 pm

    Josh my wife and I have noticed that out oldest son, is having soon tics, grabbing his ears, constant blinking and soon others. I tell him to stop and he says he can’t. This is not all the time, just when he is relaxing. When he is doing stuff he never does it.

    Thanks
    Frank

    • Josh Hanagarne November 18, 2010, 1:53 pm

      Frank, when did this start? How old is he?

  • frank November 18, 2010, 2:52 pm

    He will be 4 in January. My wife noticed it maybe 6 months ago. Josh they are not really baby, but they are getting a little worse.

    • Josh Hanagarne November 18, 2010, 3:05 pm

      Frank, write down any associations you have that seem to be related to the symptoms. Don’t stop at “When he relaxes.” Lights? Time of day? Food? Tell me whatever you can and I’ll add it to the post up above for discussion.

  • frank November 18, 2010, 3:19 pm

    Will do josh. Thank you big guy

  • Larissa November 19, 2010, 11:51 am

    I don’t know if I consider the following, facts, but they are what I have observed while watching my son, Ethan:
    – tics are brought on by stressful situations/performance anxiety
    – tics are almost always present when he is not mentally stimulated ie. watching TV, sitting in church ;), waiting in line, etc
    – not making a big deal about his tics has helped him tremendously
    – making a big deal about the things he is good at has helped tremendously as well – my feeling is that when he is experiencing victories in the things that he is good at, it gives him more confidence and strength to “fight” off the tics. This is hard to explain, but I’ve seen him do this, and it is really amazing. When he is in this state of mind, he is able to choose to tic in a different way.(in a similar way to what you have said, Josh) I could go on and on, but let me just add a couple more things: I don’t know how often Ethan is able to do this because I don’t ask him about his tics. He comes to me when he is frustrated, and I listen. So the only thing that I can go by is the fact that he hasn’t been coming to me as often.
    Also, Ethan’s dad spends a lot of time with him doing the things that Ethan excels at like shooting, fishing, biking, golfing, really anything that is outdoors and competitive. The more he does these things, the less frustration we seem to see.
    I hope this information helps someone! 🙂 Josh, I will always be continuously thanking you for your kind words and support during such a scary and confusing time. We would not be where we are today as a family without you. 🙂

  • mg March 8, 2011, 3:12 pm

    I’m an adult male with multiple tics (off and on since childhood). The urge to tic is much stronger in the evening for me. Some days are mostly (maybe completely) tic free, other days the urge to tic is fairly strong. In social situations (even around immediate family) and public situations I generally suppress tics automatically, although there is often a slight feeling of tics “bubbling up under the surface” in this situation, sometimes leading me to perform the tic in a slower, controlled way that I believe is less noticeable. I am in no way impaired by my fairly mild symptoms, but when stressed, frustrated, or tired, the urge to tic is increased. The situations where I most frequently allow myself to express tics are while walking alone or while alone at home.

    While I have a history of ADHD diagnosis, I have never taken prescription stimulants. I drink several cups of coffee with breakfast each day. I do not notice any increase in tics after consuming caffeine. In fact, the I am fairly sure that I tic the least (and I am most productive) during the time after my daily coffee.

  • Jason Cohen April 27, 2011, 3:57 am

    I have had tourettes for years, unfornutaley it has got a lot worse in which i am looking into Deep Brain Stimulation. To be honest i havent found anything to do with day to day life or [practise that helps with any efficiency as when your brain knows you are using methods to supress or controll it then the activity of electricity in the part of the brain causing tourettes increases causing a massive increase in involuntary movements or verbal tics. If you want to find out more or you have any good advice for medical/surgical procedures please add me on face book Jason Cohen. Thanks

  • allen russell May 9, 2011, 3:29 pm

    i suffer tourettes but i only find my swearing is far worse than the twiches and im un aware that i swear.I shout out random sh*t (like my favourate soccer players name @ liverpool football club,which is steven gerrard)I want to know will it get worse?will the twitches start and can u grow outy of it plz e-mail me asap with the answeres thank you so much allen russell

    • Josh Hanagarne May 9, 2011, 3:53 pm

      Hi Allen, I’d recommend subscribing to the newsletter and watching the video. When you’re done there, please let me know if you want to talk and we’ll set up a time to chat.

  • kelly September 25, 2011, 8:07 am

    Hi,

    Our sons tics are definately worse when he is not stimulated – we have found an ipad excellent for the time he has inbetween activities to keep him busy. His verbal tics come and go – but he just about has a new movement tic each month.

    We are interested in anything that may help

    • Josh Hanagarne September 25, 2011, 12:31 pm

      Kelly, feel free to send me an email through the contact form if you’d like to set up a time to chat.

  • Molly August 3, 2012, 6:55 am

    Hello. I have diagnosed myself with tourettes syndrom. I have 2 little boys and am terrified I will pass it along to them. They are 3 and 7 monrhs old. My TS is very mild but I realize I have a large chance if passing it along and that it could be more severe than mine. Would live to discuss this with you.

    • Josh Hanagarne August 3, 2012, 10:07 am

      Molly, if you’ll send me an email through the contact form, I’d be happy to talk.

  • Molly August 3, 2012, 6:57 am

    Sorry about typos! On my phone.