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Thread: Hello

  1. #1
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    Default Hello

    I dont really know where to start. This is all kind of scary. I was recently just diagnosed with tourettes, and this site has been a life saver when it comes to info and support. I have had tics for years, but because of a new breathing tic recently that has been bad and worrisome, i have just recently been diagnosed. i dont know of anybody with tourettes, so this website and forum group has been amazing in helping me recognize tics that i have had, but that have become normal to me because of how long i have had them. Within the last 6 moths, they have become quite extreme because of several life crazy events. I figured this would be a great place to connect with people that are able to relate, as only the two people that know in my life, my mother and my girlfriend, and the random people that give me weird looks,dont really understand and continue to ask why i cant just stop haha.

    Any tips or pointers are welcome, and i am looking forward to connecting with you all and not feeling alone anymore. Thank you all so much already.

  2. #2
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    Default Re: Hello

    Hello Josh and welcome to the TSFC Forum. Indeed you are not alone, and as you have the opportunity to meet other people who happen to be afflicted with the neurological disorder of Tourette Syndrome, you should find comfort in knowing most people have found strategies to help them deal with their Tourette, to integrate socially and to have a productive academic career as well as a prosperous professional career.

    We can discuss each of the issues you have cited, but before we do, I would invite you to read through the "Sticky" posts (those that are at the top) of the Forum section titled The Tic Parade.

    You will find a series of posts that provide overviews of Tourette from various sources, and one post includes informative handouts you can print and give to family and friends whom you would like to inform about the disorder.

    Let's carry on this dicussion to address some of the concerns and reactions of family and friends.

    But first, would you share who provided you with your diagnosis of Tourette? Was it your family doctor, a neurologist, a psychiatrist, psychologist, social worker etc? We're always interested in learning how people with Tourette finally acquire their diagnosis.

  3. #3
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  4. #4
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    Default Re: Hello

    I was diagnosed by a psychologist that is a close friend to the family. I was diagnosed with ADHD by her when i was a child also, so it was a quicker diagnosis than usual because of her past history with me and her connection with my mother.

  5. #5
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    Cool Re: Hello

    Hopefully you can continue with your consultation with that psychologist, who may be able to help you develop some strategies to bolster your self confidence in the knowledge there are millions of people in the world with Tourette Syndrome, and that you are not alone nor unique.

    only the two people that know in my life, my mother and my girlfriend, and the random people that give me weird looks,don't really understand and continue to ask why i cant just stop
    Being asked, "Why can't you just stop?" is probably the most frustrating aspect for of dealing with the disorder, because the question indicates the person asking does not have an understanding of what the disorder of Tourette Syndrome is.

    This is where your initiative, to gather reliable and accurate information on Tourette and to present this information to your family should be your primary responsibility.

    I've pointed you to some of the best resources we can offer in the Tics Overview section of the Forum that describe in detail the origins of Tourette and how the disorder affects people.

    You can print out the handouts contained in those posts so your family can understand that Tourette is a neurological disorder, caused by a genetic mis-wiring inside the brain, and the expressions of Tourette such as the vocal and motor tics are completely involuntary...you cannot control them for the most part, and so, you cannot just stop.

    In the same way your mother or your girlfriend cannot resist scratching an itch or cannot resist blinking their eyes, you cannot resist your tics. A demonstration I do when explaining Tourette to groups is to ask the people in the group to not blink their eyes for five minutes...at the end of about 60 seconds, most people begin to understand what's meant by "involuntary"

    How is your Tourette affecting other parts of your social and interpersonal interactions?

  6. #6
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    Default Re: Hello

    It can be difficult to conceal at work. My tics get worse when my energy level is higher, so sometimes when it gets busy, i will echo people or start laughing which can get some weird looks. Working at a major retail store doesnt help haha. Other than work and seeing my girlfriend, i dont really prefer to socialize. Going to some of my college classes can suck, but they usually tone down considerably when i focus on the lecture.

  7. #7
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    Default Re: Hello

    Quote Originally Posted by Josh18
    but they (the tics) usually tone down considerably when i focus on the lecture.
    It is not unusual that tic activity can decrease and even be fully arrested during activities that require intense concentration. One of my Tourette heroes, Dr. Mort Doran is a surgeon, who tics in his day to day life, but is prefectly tic free during surgery.

    Would you say that under certain circumstances you might be able to temporarily suppress some of your tics, or is that impossible in your case?

  8. #8
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    Default Re: Hello

    Sometimes they just disappear for a few hours, and then they come back, or they just stay throughout the day. i can suppress them depending on how bad it gets. if the tics arent too bad, during a conversation with somebody, i can usually resist the urge, but not for long. if its too long, i start to sweat and get flushed and have to go to the bathroom where i flip out and my tics seem to go crazy. It sometimes just depends on the situation. i guess its whatever my body feels like doing. there are times at work when i have to talk to complete strangers about a product, and they can tone down or go away for awhile, although i think it is because i am very comfortable with talking to complete strangers. Usually when i am not talking to people at work, my tics increase.

  9. #9
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    Default Re: Hello

    Josh,

    You might be surprised that what you have described is not untypical for many of us with Tourette, so with a bit of work on your part, you may be able to find strategies that can make dealing with your Tourette a bit easier.

    Sometimes they just disappear for a few hours, and then they come back
    Yes, tics tend to wax and wain over time, depending on the time of day sometimes, what you happen to be doing at the time, but also vary from week to week, month to month and even year to year.

    Some people maintain a basic collection of tics that they express throughout their life while they have other tics that come and go.

    if the tics arent too bad, during a conversation with somebody, i can usually resist the urge, but not for long. if its too long, i start to sweat and get flushed and have to go to the bathroom where i flip out and my tics seem to go crazy.
    Now here's the basis of a potential strategy for you to use in situations where you might want to reduce tic activity.

    Not everyone with Tourette appears to have the ability to suppress their tics, and perhaps this is where CBT (Cognitive Behavioural Therapy) might be of some help.

    The key is to be able to recognize the onset of tic expression, called the premonitory urge...the message in your concious brain telling you a tic is coming....like the itch that needs to be scratched.

    If you can figure out a way to redirect that tic to something that is less evident, such as squishing your toes inside your shoes, or doing something unobtrusive with your hand, arm, leg..whatever works, you may be able to satisfy the need to tic in a less obtrusive way.

    This might work for only so long, but eventually the energy seems to build up and you need to completely express your tics unabated....that's when you find the bathroom, the stairwell, go back to your car or some safe place where you can express your tics without restraint.

    i am very comfortable with talking to complete strangers. Usually when i am not talking to people at work, my tics increase.
    Again, not surprising. It has to do with comfort level and in front of strangers, you might have less comfort initially, so you may want to suppress your tics. However when in the company of people you know well, and who are familiar with your tics, especially when you know they won't react in a way to draw attention to your tic expressions, you might be more at ease and show a few tics.

    If you are capable of some degree of tic suppression, then you might try using what you know now about your own tic activity to train yourself to suppress in certain situations, remembering you need to have an "escape" plan for when you need to express your tics unrestrained.

    Have a look at these two articles posted on the Forum:

    Non Drug Therapy to REduce Tics In Tourette Syndrome

    People with Tourette Syndrome Show Strong Congnitive Control

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