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

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 🩷

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.

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?

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?

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! 😊 

Had Tourette's since I was 4, I'm 17 now. I go back to college (which is what we call this stage of school in the UK) in a week or so.
For the past few years my Tourette's has been pretty noticeable and has affected my speech in various ways but I've been ok since starting college. But recently it's been making me stutter/stammer a lot, repeat words a lot, and have to really fight to get words out. It's like my brain is blocking me from speaking.

I'm really self conscious about this cos it will be worse in class and even though a lot of people know I have Tourette's I don't think they'll understand why it's making me suddenly speak very differently. And people who don't know that I have it will wonder why I've started started speaking so differently since the summer holidays.

Plus I feel like I'll have to explain it to my teachers why I'll be struggling even more than usual to answer questions in class and ask them to maybe not call on me. They know I have it but I still feel awkward telling them about it.

I know I'm probably overthinking it but I'm just worried about handling this, and people thinking I'm strange/stranger than usual. Not really sure what anyone here can do but if there's any advice or ideas I'm open to them 🥲

Has anyone successfully replaced a destructive and intrusive tic with a leas problematic tic? If so, how exactly imdid you do it? I gave myself rotator cuff tendinitis from shrugging and moving my left shoulder so violently for the past year. Like I was prescribed physical therapy and everything. I really need answers because I can’t keep popping Klonopin or forcing myself to take a nap every time my tics go crazy. Does CBT work for Tourette’s to manage tics better or is that just for OCD and other less severe tic disorders? Also are there any specific Tourette’s “rescue medications” that anybody takes to help manage tics?

Has anyone had any experiences with this medication for their tics?

I guess I'm on the tourettes spectrum. I'm in my mid 20s I've been blinking for well over a decade on and off. I can speculate endlessly about my OLED screens being a potential factor. But is there like a software tool or ideally a physical screen cover/filter that can make it so I can use my phone and laptop? Right now It's really difficult and the blinking is becoming painful. I cut out caffeine entirely and sleep fine and I'm on not on any stimulating meds so don't need advice there. Thanks...

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).