Common Questions About my Tourette's

·      Do you swear?

o  "Coprolalia" is involuntary swearing or shouting obscene words or socially inappropriate and derogatory remarks.  Only about 10% of people who have Tourette's have this and I do not.  

·      How many tics do you have?

o  I have six tics

·      What tics do you have?

o  I twitch my left elbow up, my right arm out, both shoulders up and down, my neck to the left and right shoulder to my head.

·      How long have you had Tourette's?

o  I have had Tourette's since I was 15, so 5 years.

·      Do your tics change?

o  Yes, I have been through multiple tics.  They change muscle groups and intensity but I usually keep about six and usually in my arms and neck. 

·      How many times a day do you tic?

o  Depends on the day, sometimes 10-30 times.  Other days, 200-300 times.

·      Can you stop?

o  No.  The best way to describe this is, when you have a sneeze, you can hold it in for a few seconds but soon it becomes all you can think about until you finally release it.  Tics are a similar sensation.

·      Is there anything that can make your tics better?

o  I have the least amount of tics when I am on stage.  I love to dance and be in theatre productions and this seems to be the time I tic the least, if at all.  But as soon as I step off stage for a costume change or a break my tics go crazy. 

·      What makes you have a "bad" day?

o  I tic the most when I'm stressed but relaxing.  For example, I won't tic during a test, but I will tic a ton after and once I get home and I'm watching TV or eating dinner. 

·      Does everyone with Tourette's have the same tics?

o  No, each and every person is very different and has their own specific tics and way of handling them. 

Tourette's Can't Stop Me #MissUtahUSA2015

I am the current Miss Cache County 2014 and I am running for Miss Utah USA 2015 this December.  Having Tourette's has changed a lot of things in my life, but it has never stopped me from doing something I put my mind to.  Most recently I have decided to compete for the title of Miss Utah USA.  I think that even competing is such an incredible opportunity for me.  In December I will have the chance to be on stage in a swimsuit, evening gown, and interview with some of the most beautiful, intelligent women in Utah.  I also think this is a great chance for me to get awareness out about Tourette's Syndrome.  Running for this pageant has caused so me so much stress, but I believe it will all be worth it in the end.  I have never worked so hard and this has helped me create a lot of new habits in my life.  Training taught me dedication in my workouts and eating/sleeping habits.  It also forced me to better at time management because I had to learn how to balance school, gym time, and work.  It taught me to be confident in who I am, and to be proud of the woman I have become.  I have prepared for so long, and now the time for it all to pay off is coming!  I really want this, and I want to be able to show the world how you can overcome struggles and trials that are thrown at you.  I want people to hear my story and be inspired by what I can do, even though I'm different and I'm going through different things then most kids my age.

Wish me luck! And catch the pageant on PageantVision.com December 5th and 6th!!

What to Expect When Dating someone with Tourette's

Don't Go To Scary Movies:
     I recently went on a blind date to the new scary movie Annabelle.  Don't worry, I did tell him that I had Tourette's before the movie started, but honestly I don't think he believed me. When the movie was intense, or suspenseful, I held all of my muscles super tight.  Then when that part was over, I relaxed and started twitching like crazy.  Poor boy probably had bruises all over his arm the next morning from how bad I was twitching.  Needless to say, I didn't get a second date.

Don't Go To A Nice Restaurant:
     I don't know when I'm going to twitch and I twitch more when I'm nervous, and who isn't nervous on a first date.  I went on a date to Rumbi Grill and chose the rice bowl.  Bad decision.  I ended up twitching, throwing my fork full of food across the restaurant and spilling my drink.  He laughed a lot, but once again, I didn't get a second date.

Don't "Lean In" At The Door Step:
     Everyone looks forward to that first kiss.  We all know its coming when he takes you to the doorstep and starts with his long spiel of what a good time he had.  Then there is that long awkward silence where he leans in 90% waiting for you to go the last 10%.  Well, I leaned in that 10%, then twitched and smacked him in the face.  Let's just say I didn't get the kiss, or another date.

Don't Go Out In Public:
     I was talking to a new guy on campus.  Its seemed like we were really hitting it off, but then I twitched.  He looked at me funny and asked me if I was okay.  When I responded with the fact that I have Tourette's, he just kind of walked off.  I didn't even get a first date.
   

Have you heard about P.A.N.D.A.S?

PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal infections.  PANDAS is an abbreviation to explain a subset of children who have OCD and/or Tourette’s Syndrome, in whom symptoms worsen following strep infections. 

PANDAS is a very new research that I have started to look into.  All of my symptoms to fit into the criteria because I did have strep, then mono, then strep, then I was healthy for a month, and then had strep two more times. This was the same winter season that I developed my Tourette’s.  PANDAS can be diagnosed, but I never did go get tested for it because it doesn’t really change anything.  It could give me the reassurance of what caused my Tourette’s, but it wouldn’t change anything about the fact that I still have Tourette’s and must now deal with it. 

For more information on PANDAS check out http://www.nimh.nih.gov/health/publications/pandas/index.shtml

Darius Ghanat's Story:

My friend Darius Ghanat is trying to get a song he wrote out to Katy Perry in order to get awareness and inspire people with Tourette's Syndrome.  He wants everyone to know, never give up on a dream.  His dream is for Katy Perry to sing his song at the halftime of the 2015 Superbowl.

Darius started writing this song shortly after he became severely disabled.  During that time, he got into music to help get through a difficult time and loved Katy Perry and what she stood for.  Darius is slowly becoming more healthy and was able to finish this song, it holds a very personal significance to him.  

He wrote his song with a Hawaiian theme because this was the last vacation he was able to go on before becoming disabled.  He would love for Katy to tie his story in when she performs.  He has not recorded the lyrics yet, because he wants Katy to be the first person to sing it.  

Want to hear it?? Here is the link to the song:  https://www.youtube.com/watch?v=f9bFl0t7Tl8 

and the link to the lyrics: https://www.facebook.com/notes/darius-ghanat/wild-and-free-come-with-me-lyrics/566748716753687  

Also follow him on Twitter at @DariusGhanat 

Let's Help Darius get the word out about his song!! Please repost to any, and all social media!!

Quick Facts about Tourette's Syndrome

·      What causes Tourette’s?

            It’s complicated and no one really knows for sure, but scientists think that TS is caused by problems in one of more parts of the brain.

·      Is Tourette’s inherited?

            Yes, we believe that there are genes that are responsible for TS, but it has yet to be proven what gene or genes are causing TS.  We do know that environmental and situational factors have a huge effect on how sever tics can be. 

·      Does Tourette’s ever go away?

            Most people develop Tourette’s in early childhood and see improvement in late teens and early twenties.  Those who develop TS in young adulthood, to adulthood usually keep their tics though out life. 

·      How is Tourette’s Treated?

       Usually, tic symptoms are mild and don’t require treatment, however when tics become too much to handle, medication can be considered. 

Want to learn more?? Check out http://tsa-usa.org/imaganw/What_is_TS_English.pdf

National Tourette’s Syndrome Association (TSA)

What is National Tourette’s Syndrome and What do they do?

• ·      They provide information and answers to common questions
• ·      Promote public and professional awareness and understanding of TS
• ·      State-by-State list of doctors and other professionals
• ·      Teacher education programs to provide guidance to parents on how to help their child
• ·      Organize workshops for those working in the field of TS
• ·      Help families by relaying their issues to the government with the goal of effecting critical policy issues including orphan drugs, health insurance and employment
• ·      Create and publish newsletters, brochures and DVD’s that discuss TS

Want to donate or get involved??  Contact TSA at http://tsa-usa.org

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