MY THOUGHTS ON THE SUBJECT ARE AS FOLLOWS

My truth. My life.

Tics, Grunts, Life… 2nd time around

This is something I posted awhile back.  I wanted to talk about it again.  I saw on t.v the other day that someone was, once again, making fun of a serious disorder.  I’m not ok with that.

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I have Tourette’s Syndrome.  TS is a neurological disorder that becomes evident in early childhood or adolescence.  TS is defined by multiple motor and vocal tics.  The first symptoms usually are involuntary movements (tics) of the face, arms, and limbs.  These tics are frequent, repetitive and rapid.  The most common first symptom is a facial tic (eye blink, nose twitch, grimace), and is replaced or added to by other tics of the neck and limbs.

Some involuntary tics may be complicated, involving the entire body, such as kicking and stamping. It’s as if I the urge to perform a motor activity. Other symptoms such as touching, repetitive thoughts and movements and compulsions can occur.   There are also verbal tics.  These vocalizations include grunting, throat clearing, shouting and barking.  The verbal tics may also be expressed with the involuntary use of obscene words or obscene gestures. Despite what you hear, this is fairly uncommon.

People with Tourette’s usually also have a form of depression, ADD, ADHD, and OCD.

Now, I am going to tell you how TS affects me.  For as long as I can remember, I have had facial tics and grunting.  Now, at the age of 35, I am able to hide these things from most people.  If you spend enough time with me you might see me twitch or hear me grunt and not realize what I am doing.  When I am really stressed or really comfortable with my surroundings my tics and grunts get louder.  When I am with my family I do it freely and do not try to cover it up. They act like there is nothing wrong and don’t even acknowledge that I am doing them.  When I am somewhere that I need to hide it, the tension builds.  It actually hurts when I try to hold it in.  When I am finally able to release them it takes a while for them to stop.

When I first met my husband he thought I was laughing or clearing my throat.  People ask me all the time what I laughing about. I just say nothing and move on.  When I have a twitch I can’t avoid, I cover my mouth, eyes or nose so that no one sees it.

I see a lot of people on tv and other media outlets that think its funny to make TS look like it’s an awful disease.  I have actually had someone respond to me before when I told them I had TS “When are you going to start cursing and throwing things” I really wish people would take the time to learn more about it.

I have chosen not to take any medicine to help control the twitches.  My symptoms aren’t as bad as many.  I believe the depression linked to Tourette’s is a bigger battle for me.  My family accepts me for the way I am.  There was a guy on American Idol this past season who had TS.  When I saw him twitch on TV with no care in the world about it, it gave me hope.

The most important  thing I have learned is : I have Tourette’s syndrome.  Tourette’s syndrome doesn’t have me.

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33 thoughts on “Tics, Grunts, Life… 2nd time around

  1. As the parent of a special needs child, I struggle daily to make life as okay as possible. I have been doing it for 17 years and having my son, who is a miracle (was born at a pound and 13 ounces), made fun of is not okay.

  2. I have a twitter friend whose daughter also has TS. She is 19 and struggles with staying on the meds to have a semi-normal life or not being on them and hoping for the best.It’s a terrible thing when your body fights itself. My brother has dystonia, which causes him to not be able to stand straight or walk forward erect. But he can jog in place perfectly straight and walk backwards the same way. The brain works in mysterious ways. Everyday is a struggle for him, as it must be for you. I have nothing but admiration for all of you dealing with such issues.

    • Thank you for your kind words. It’s like our brains live in complete chaos. I cant imagine how hard that is for your brother, but I know a great support system is everything.

  3. “The most important thing I have learned is : I have Tourette’s syndrome. Tourette’s syndrome doesn’t have me.”
    C’est le plus important car cela montre ton courage et ta vomonté à dominer la maladie et pas le contraire.
    Tu as toute ma sympathie et mon soutien.

    • Merci tellement. Il est très difficile de traiter parfois. Je suis reconnaissant pour des personnes comme vous.

      • Je me suis trompé dans mon précédent commentaire en écrivant” ta vomonté”, mais il faut lire ” ta volonté”.
        Je respecte les gens comme toi qui ont de la volonté et qui n’ont pas peur de la maladie. Je suis fier de ron amitié.

      • c’est un compliment si merveilleux à recevoir. Il chauffe mon coeur. Je suis fier de vous connaître aussi bien !

  4. I guess so often when media gets a hold of something they look for the person who has the most extreme symptoms and people think that all TS is like that…It takes people like you to help set the record straight..Diane

  5. What I love most about this is your family’s support. I’m sorry you have to deal with it and that people don’t always understand, but I’m thankful you have an amazing family who accepts all of you as is 🙂 I applaud you for talking about it. I don’t know much about it, so maybe it’s time to learn more.

  6. I love how you end this… Bravo!

  7. apparently her tourette’s has made her know French. That’s awesome.

    Me and the girls are very supportive of Bobina’s condition. In fact, we usually just touch her arm and say “you okay”.

    she was brave to post this.

  8. Well said brave words

  9. Glad that you are surrounded by people who don’t care about the outward signs of TS, except for the simple “Are you ok?”.
    Everyone should be surrounded by people like that.

  10. You are a strong woman.
    It takes a lot to accept and move on.
    It takes even more to accept and live with it.
    You are lucky to have supportive family and friends.

  11. I just want to publicly commend you on this post and your honesty. xx

  12. Great post! Like a number of people, I do not know anyone in my personal life with TS, so I honestly go by stereotypes when the subject comes my way in a conversation. Thank you for your words and your truth; much respect.

  13. i, too, had only the idea of TS from what i’ve seen in television shows. i’m happy to hear that yours is not the most severe form, though i am sure it still must cost you physically and emotionally. i’ve battled depression most of my life, so i can relate to that aspect. your attitude is AMAZING and i really admire your strength, determination and your willingness to open up publicly. you go, girl!

  14. I just want to say that you are strong, brave, and beautiful. You are smart, wise, and excellent with words. You are sensitive, vulnerable, and sweet. You are original, but also unique and exquisite. You are full of life, love and friendships. You… Are… So… Many… Beautiful… Things… TS ain’t got nothin on all that other stuff!! Love you XoXoXo ~Jen

  15. Thank you for this enlightening post. 🙂

  16. I am all over this. With a son who copes with OCD and panic/anxiety disorder, when people throw around those terms as if they are simply saying ‘the sky is blue,’ it makes me apoplectic.

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