Welcome to my life thus far with Tourette's Syndrome with all its ups, downs, and sideways moments.
Wednesday, April 11, 2012
Talk about your Tourette Syndrome on video! (Vlog Chain Campaign)
I can be very self-conscious about video, which I partly blame on the fact I have Tourette. But I’m willing to do a video of myself talking about my life with TS anyway to help out get this vlog chain started. Would you guys be willing to do the same of yourself or your child talking about or being interviewed about Tourette?
Even though I am self conscious about it, talking openly about Tourette on video both spreads awareness and creates more understanding. Here is how to do it:
Pick out the questions you want to answer from the list below! The more the better! You can upload more than one video, so if you want to answer all the questions, go for it! More power to ya!
Film yourself answering the questions you picked from the list.
That’s it! Remember the goal is to really bring us into your life with TS! Put us in your shoes as much as possible. Tell stores from your life, and do whatever you can to show other people what it is like to be you.
We already have received five responses, including my own video! Here are the links to them on YouTube:
And now, without further ado, here are the questions:
General questions for everyone with TS
What is your name and how old are you?
What conditions do you have? (TS, OCD, ADD, SPD, etc.) What is it like to live with these conditions? What is the hardest condition, in your opinion, or the one that interferes with your life the most and why?
When were you diagnosed with Tourette, and what was it like for you and your family? How has your Tourette progressed since your diagnosis? How did the diagnosis affect you, and how are you now that you have the diagnosis versus when you did not have a diagnosis?
What tics do you have? What motor tics/what vocal tics?
Is there anything that is harder for you because you have TS? (e.g. going to movie theaters, taking tests, reading, etc.)
Tell one or more personal TS stories that are funny, sad, inspirational, moving or one that just gives us a look into your life with TS!
How do your friends react when you tic? Do you tic around them often? What have they said in the past about TS? Are they supportive? Are they OK talking about it, or would they prefer to ignore it?
Do you prefer to ignore TS or talk about it from time to time?
Are there certain people you feel okay ticcing around and others you supress around?
Where and in what situations do you supress the most? Let it go the most?
What does a tic feel like to you? How do you describe it to other people?
What do you think people should know about Tourette?
A lot of time — out in public on in school, if you have a tic — will people look or ask you about it? How much patience do you have with people who ask about it?
Most of the time, do you try to explain your Tourette to people or do you prefer to mask your tics and not tell people out in public or people that you are not that close to?
Any specific struggles you face every day with TS? With associated conditions?
How can other people make you feel more confident about your TS?
What is the strangest tic you have had or the one that has bothered you the most?
What do you want others to know about your life with TS?
Kid Specific Questions: (For a parent interviewing their child or a child doing a video on their own)
What is your name and how old are you?
What other conditions do you have besides TS?
What is it like to be a kid with TS? Do you feel different than the other kids in your class?
Do you remember being diagnosed? If so how old were you and what was it like?
What are your tics?
What tic bothers you the most or is the one you dislike the most at the moment?
When are your tics the worst? The best?
If you had to pick a favorite tic what would it be?
Is there anything that is harder for you to do because you have TS or other conditions? Going to the movies? Taking tests in quiet rooms?
What do you dislike the most about having TS?
What do you like the most about having TS?
Is there anything about TS that you think makes you special or unique? Do you think there is anything positive about having TS?
Do you have any funny stories about Tourette’s you can tell? If so, tell it!
Do you tic when you are in public a lot? How do you feel when you tic out in public at stores, restaurants, or at the super marker? Do people look at you/stare? If they do, how does this make you feel? Do you do anything about the people who stare or does your mom?
Do you tic more or less at school? How do you feel when you tic at school and around your friends or classmates?
Do you tell your friends and classmates about your TS? If so, do you think they understand?
What do your friends and classmates say about your TS?
Who do you feel the most confortable ticcing around? Why?
Who understands your TS the most?
Have you ever met other kids with TS? If so what was it like? Did you become friends or like spending time with them? If so why?
Do you have siblings or cousins? How are they about your tics? Do they understand?
What would you want to tell other kids who have TS who were maybe just diagnosed? What advice would you give them? What would you tell them to be prepared for in the future?
What is one thing you think everyone should know about TS?
What do you want to be when you grow up?
What is your favorite part of school?
Questions for those in elementary, middle or high school
Do you tic more or less in class?
Do people in your classes know about TS, and are they understanding?
Do you feel more self-conscious in class or feel that you are disruptive? How do you feel as a student with TS, and how does this impact you?
Do people in your classes ever comment about your TS, or do they just ignore it?
How have teachers been now and in the past about it? Are you accepted? Have they been helpful and understanding?
Have you ever talked to your classes or grades about TS?
Have you ever been bullied? What was it like?
Questions for college students
How was your transition from high school to college? Did it affect your tics in a negative way or positive way?
Do you or have you ever had a roommate? Did you tell your roomate you have TS? When did you decide to tell your roommate? How did you tell your roommate? What was his/her reaction?
How does your roommate deal with your tics? How does your roommate feel about your tics? Are they OK if you are making noises or ticcing? How accepting and understanding are they?
How does your roommate deal with your associated conditions? How does your roommate feel about your associated conditions?
Do the people in your college classes know you have TS? How obvious are your tics in college classes, and how did you tell your class about your TS, if you did?
Do you choose to tell friends in college? How did you tell them, and how do they react and/or feel about your TS?
How do college professors feel about/react to your TS, if they know?
Questions for adults
Do you have a job/career, and if you do, do you tic at work?
Do your co-workers or boss know you have TS?
How do the people you encounter while at work react to your TS?
Has your TS ever caused a problem in the workplace?
Has it ever created something beneficial for you in the workplace?
Talk about what it is like for you to be an adult in the workpace with TS. Bring us into your life with TS as an adult in the workplace.
What is your life like as an adult in terms of social life outside of work? How do friends and people you come across in your everyday life react to TS?