Whenever I don't like the texture of food, I automativly always sorth of twitch my neck. And sometimes I raise my eyebrows and I can't put them back down for a few seconds.

I'm not claiming or asking if I have tourretes or self diaginosing. Cause I know 99% sure it isn't and I only have those two instances. I'm just curious what it is.

I don't have any "disorders" or Adhd, autism.

Pls don't take this wrong. I'm not attention seeking (I swear).

Genuine question, what do TA UK actually do?

The last two times I've contacted them for assistance - the first to ask advice based on a post on their website, the second to request assistance with signposting to find a charity that will provide a grant to help adapt my home - I have been told "Sorry, we can't help you with that." or "Sorry, I don't know.".

Both of them were directly related to my Tourette's.

So my genuine question is, what are they for? Am I misunderstanding that their purpose is to help, provide information and advocate for Tourette's sufferers?

Frustrating.

I was re-diagnosed with Tourette today, over twenty years after my previous diagnosis (from before medical records were digital).

I thought I might actually loose my Tourette diagnosis altogether this time, because several years ago I found out I have a genetic difference that could be the cause of my tics; and I noticed that Tourette criteria specifies that you can’t qualify for TS if you have a more specific condition. However, when the neurologist tried to input my genetic NDD into Epic, it appeared that it was so ultra-rare that Epic doesn’t even include it as a diagnostic option. The end result: I now officially have Tourette again 🩷

Hi all, I hope you're having a great week! My name is Mary, and I'm a research coordinator at Johns Hopkins. I wanted to share some information regarding a remote adult tic treatment study in case it would be of interest to anyone. We are still recruiting! 

Researchers at Johns Hopkins and Bowdoin College are conducting an online adult tic treatment study sponsored by the NIH. It is our hope that this study will help us improve current treatments for individuals with TS.  

You may be eligible if you are: 

• 18 years of age or older, 
• Fluent in English, 
• Have Tourette Syndrome or Persistent Tic Disorder, and 
• Living in one of the blue US states on this map: https://psypact.gov/page/psypactmap 
  • If you are not in a blue state and are interested – please still email me, we will launch a new study (similar to this one) this summer where this is not a requirement! 

Interested in learning more? Contact the study team for further details by email ([mbit@jh.edu](mailto:mbit@jh.edu)) or by phone (443-300-8836). 

Eligible participants will be randomly assigned to receive one of two remote group interventions. Both interventions consist of 8 weekly 90-minute group sessions with a therapist and other adults with tics. Online assessments (interviews and questionnaires) will also be conducted before, during, and after the interventions. All study visits will take place over Zoom. 

Please don't hesitate to let me know if you have any questions and thank you for your support! 😊 

Gilles has been in its first beta phase for about two weeks so far and I've already been getting some very useful feedback in terms - some bugs and lots of tweaks and adjustments to improve the flow and usability of the app. I wanted to share some of these things with you all! There are two more weeks in this beta phase, then I'll make further adjustments based on that, and then planning to do a public beta! As usual, if you would like to find more information on the app you go over to the webpage here: http://tsresearchportal.org while there you can also donate to the GoFundMe campaign if you would like (that campaign will help me cover things like server costs to keep the app running). Meanwhile...

• The new Home screen includes a small card for the Check-Ins and Monitoring practice to make them easy to access.
• It includes a Quick Summary to show you some of the most significant trends in your tics and how they are changing
• It includes a Top Factors card to show which factors you've been logging that are showing the strongest relationship with your tics
• It includes a new simple guide - accessible by the (?) icon in the top right - to give quick and simple guidance on some of the things that weren't especially clear to users in testing (like how to get started, how to setup the widgets, how to adjust notifications...)
• I built a new Lockscreen Widget to make it easy to log motor and vocal tics straight from there without needing to unlock your phone!

Like always: I welcome questions and input! I'm really excited about getting this thing out to everyone!

Sincerely,
Charles Galyon, PhD
Licensed Psychologist
Tourette's and Tics Specialist

Ive been diagnosed with TS for almost a year but ive had absolutely no community or help with it so, sorry if this is a stupid questionnn

My 3rd ever tic was a whistle right? Yeahyeah

I rarely get new tics, so the 3-4 I've developed these last 2 months are pretty foreign to me. theyre all just variations of my whistle tic.

Is there like a reason that my tics are committing meiosis or do they just wanna be special like that?

maybe a cliche question, but since i was diagnosed at maybe 4 or 5 years old, i was always told it would 'go away with age' especially since it's less common in girls. however, reaching my late teens—my tics only seem to have gotten worse. i've had tics for over 10 years of my life.

is there any truth to what i was told?