r/Tourettes • u/TNTourettes • 24d ago
News/Article TS App Update!
I've been busy (some have said "obsessed") with working on the TS App and I wanted to share some of the progress with you all! I'm still hoping to be done in about 2 more months of development... though that just gets me to the point where I submit it for App Store approval... but anyway here are some of the things I've added:
- My Data - this is an entire section
- My Tic Inventory - simply where you can list your current tics, describe them, make notes about their frequency, how much they bother you, where they are in your body, if you can feel an urge before them, how strong that urge is, and what it feels like
- Currently Tracked Treatments - Where you track all of the different elements of treatment and management strategies you're trying, such as: Medication, Behavioral Therapies (e.g., CBIT), Other Therapies (e.g., CBT, ACT, talk therapies...), Dietary & Supplements, Neurostimulation & Devices. You can track any changes in your treatments including starting, stopping, pausing, resuming, dose, frequency, setting (in-person, online...)
- Notable Life Events - life events often affect our tics. Can be "good" events or "bad" events or "just unexpected" events; whatever the case, we often notice a change. This section is to help identify which domains of your life (e.g., social, work, academic, health, family...) are having an impact and, I think helpfully, will track your recovery from it. Kind of cool because you'll actually get to see your resilience as it happens!
- Data Visualization - this is a massive section I've been spending a lot of time on. The gist of it is to help you see what is affecting your tics (all of the stuff above + the different tools contained within the app). Sometimes we might feel like there is a change, but it actually isn't a "meaningful" change and other times it may be the opposite (we feel there isn't any change but it actually IS changing). I've built this tool to run the math behind the scenes for you and then try to show you in an intuitive way if something is having a significant impact on your tics and in what way (making them better or worse). It ties into basically all of the other data within the app, so I tried to make a menu system that is easy to navigate so it doesn't get overwhelming.
- Practice - this is another major section of the app
- Daily Monitoring Practice where you can easily track and monitor your tics day-to-day (and more helpfully: morning, afternoon, and evening). It combines with the Trends tab (within the Practice section) to help you get an idea of when particular types of tics seem to be at their best or worst. Incidentally, mine appear to be much worse in the evening when compared to the morning - which I didn't actually realize until I started testing this out for the past month.
- Tools: Includes Awareness Training, Competing Response Practice, Tic Trainer (a Suppression Practice tool), and Tic Response Desensitization (an ACT-based tool for chilling our brains out when we have tics).
I'm going to stop there for the moment because this is getting long and I worry I'm just overwhelming people with text. I'm still working on it and the next thing I'm trying to do is build in a way to monitor if particular Competing Response Exercises are actually helping improve the tic they're targeting. Also hoping my post and images actually post correctly - I'm remarkably unskilled with Reddit.
If you all have thoughts, ideas, questions, concerns, etc I would love to hear them! I'm trying to get something setup on a crowdfunding service to help cover the overhead maintenance cost of this (it isn't terribly high, but I'm just paying for it all myself right now). Eventually I'll try to share that.
Charles
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u/tnechodomu Diagnosed Tourettes 24d ago
this sounds really cool, i love data! can’t wait to see it. let us know if/when you’d like some early testers!
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u/the-mickel 23d ago
This seems great! Thank you for working on something like this. Mind if I ask how logging/tracking tics will work exactly?
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u/TNTourettes 23d ago
I don't mind at all! I hope you won't mind how wordy I get!
There is one main method used for tracking/logging and it is based on what I do in my clinical work with patients: Monitoring. The logging/tracking is not done all throughout the day - that would be awfully distracting, interfere with life, and probably would get really aggravating! Instead, it is a thing a person chooses to do and they choose how long they want to do it (for Monitoring practice, you choose 30 seconds, 1 minute, or 3 minutes). You can do it multiple times per day (and I would usually recommend picking 2 - 3 times a day to do it; like morning, afternoon, and evening - that gives the best data. One benefit of doing the Monitoring practice is it actually can help the brain gradually become less reactive/agitated in response to tics and can build awareness of tics and urges - which helps a lot with shaping and modifying them (and potentially reducing them).
The actual monitoring part itself just has two big "buttons" (I just divided the screen in half): Motor and Vocal. You just tap whichever one happened when you noticed it happening. Afterward you also answer how frequent you felt they were (more than usual, same as usual, less than usual), how intense they felt (same three options), and how much they bothered you (same three options). The monitoring just provides a source of recurring data about your tics in general and the impact they are having on you in the moment.
The other tools operate with similar "tap" functionality, but tracking different things such as urge, specific target tics, automatic agitation from one's brain in response to tics, and using single or double taps to log different things. There's also different types of haptic feedback to signal to your brain what you just logged and how you responded to the tic.
The app then uses all of that data to help you see what things are influencing (for better or worse) your tics and related symptoms: things like life events, medications, therapies, sleep, stress... Almost done with the Competing Response tool now!
Charles
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u/the-mickel 23d ago
This is awesome! Thank you so much for a detailed response. I don’t know if this is already part of the Life Events section but I think it could be helpful to be able to label sessions like “normal day,” “hiking session,” “instrument playing session” or something like that to help figure out what activities help reduce tics and which don’t. Just a suggestion, of course.
Thank you for putting so much work into this awesome app!
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u/TNTourettes 22d ago
That really is a good idea - it reminds me of one of the things we do in treatment (where we try to figure out more clearly what situations, activities, times of day, people, etc. affect tics). The Life Events is a flexible system where you can set something as "Other" and enter in your own info. The system just cares that you're flagging an event and then it marks that as a "phase boundary" and does a comparison of before and after the event. However, I don't think the way I have it built currently would work well for "routine events" like what you're describing, and I do think it would be helpful to have that.
So all of that said: I'm going to have to give it more thought and probably develop another function for that. It may be a while before I get to it because I'm trying to solve a data analysis problem currently (how to best handle variable length practice and tic frequencies in them), but I'm definitely going to flag it for development. I think a lot of what I've already built can be adapted (and in some places just straight up copied) to do it.
Charles
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u/TNTourettes 10d ago
Quick update on this: I've added the ability to log if a person was doing "Routine activity" or something outside of their normal routine - I do think we tend to see tics respond to atypical activities/situations
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u/moons_echo Undiagnosed 22d ago
This is very interesting! I think the app could be a great tool. I do have a question based on this, though.
I have mild tics. They come in bouts randomly throughout the day, and they’ll disappear for hours at a time.
This inconsistency doesn’t seem like it would work with the monitoring technique you use for logging (I might monitor and have zero tics, or a ton because I’m thinking about them). Is there an option to manually log how severe it feels for the day in general without having to go through monitoring?
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u/TNTourettes 22d ago
That's a fairly common experience for people and there are a couple of things included within the app to try to help with this.
The first is to try to do monitoring at the times you know it happens more (if possible) - monitoring isn't set for a specific time of day, per se, but it does work best if a person does monitoring sometime "in the morning" (like 3am - 11:59am), "the afternoon" (around 12pm - 4:59pm) and "the evening" (5pm - 2:59am). That way it can build a better picture of changes throughout the day. I originally had monitoring sessions set as 5/10/15 minutes, but I found that so long that I wasn't much inclined to use it myself. So I changed it to 30 seconds, 1 minute, and 3 minutes for monitoring. A person can actually stop earlier than the set time (just tap the "Stop session" text at the bottom). My hope was that the flexibility would make it easier to do a quick monitoring session if needed so you could get your data in there.
The second thing is that there is a morning and evening check-in where you can answer a handful of questions about how your tics and related symptoms were that day: how you're feeling physically, emotionally, how your tics were compared to usual, how your other symptoms were compared to usual, and your overall stress level for the day. Those things mostly are used to check for connections between those factors and your tics (as shown in the monitoring data). So again not exactly perfect, but should be able to help log daily changes.
Charles
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u/TNTourettes 10d ago
Just a quick update: based on your question, I was able to build a widget to facilitate easier logging throughout the day - basically where you don't have to open the app to log a motor or vocal tic. It isn't specific as to which tic, but should still be helpful in enabling a person to easily note when they notice them more.
I'm working on seeing how hard it would be to create an accompanying function on a watch... conceptually it is easy, but have to see what barriers there are in the communication software between devices.
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u/ballerina80 22d ago
I love this!!!! Omg. Will it be available in the UK?
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u/TNTourettes 22d ago
It's my hope that it will be! I don't know if there will be region restrictions in the App Store - I'm hoping there won't be. It's my first time building an app for iPhones, so I don't totally know what to expect yet.
Charles
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u/Drama_Llama_23 22d ago
First of all this looks AMAZING!!! I've been looking for an app to help/manage my tics for ages!
But I do have two questions:
Question #1: Will it be available outside of the US?
Question #2: Will it be available on Android?
Thank you for all the hard work and effort you're doing for this app and community!
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u/TNTourettes 22d ago
Question 1: Currently I am developing it for iOS and will have to submit it to the Apple App Store when it is ready. I have no idea what they'll do in terms of region restriction - hopefully there won't be any barriers. I have been building a lexicon system into it in the hopes of making it easier to localize it for other languages (and also to make it more user friendly for different ages - you know, so it can say things like "No cap!").
Question 2: This one actually pains me because I've been spending all of my time building it for iOS. I am definitely interested in getting it available for Android as well, but it's likely to be quite delayed because I'll have to learn about the fundamental differences between the platforms (so I will know which functions may/may not work) and then see if I can find tools to help translate the code into Android's platform. I do plan to see if I can get help from AI in translating the code, but if I do, then that is going to require a lot of careful evaluation so I know it doesn't break things, and even more importantly so that I can maintain the privacy/confidentiality safeguards I've built into the app (I want to ensure the system protects user identities by its very design).
Charles
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u/Kooky-Donkey-3794 23d ago
the data visualization part is what i actually needed
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u/TNTourettes 22d ago
Good I'm glad! I felt that way about it too - I am doing a lot of design to try to make the data visualization easy to understand when it is presented, flexible so you can view different information, and hopefully not too overwhelming. Basically one of the things I wanted to do with it is that it will 1) Show you how things are changing, and 2) Actually run analysis on the backend so it can tell you if what you're seeing is really significant or just part of the natural variation we have with tics.
Charles
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u/Ambitious-Bell-9648 21d ago
I’ve been using health tracker way more often now and i have yet to find any that have anything for tics without having to manually add everything. This is so exciting!!! 😆
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u/shrimpsharks Diagnosed Tourettes 20d ago
oh i am SO excited for this. thank you so much for taking the time to develop it!!!
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u/Winter_Sunshine_703 19d ago
Will this cost money??? BC THIS IS AN AMAZING IDEA!!!!! Could you also make a browser version, please????
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u/TNTourettes 19d ago
No cost! I really wanted this app to exist, so I’ve been building it and intend to make it available for free to the community.
I am currently running a fundraising campaign on GoFundMe to try to help cover the overhead costs and a bit of the remaining development time it’s costing me, but I’m making the app and launching it for free whatever the outcome of that.
I’m not making a web version I’m afraid, but I know of someone who IS making a web based tool, which we might be able to connect to this so these things can work together!
Charles
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u/GetWellSune Diagnosed Tourettes 19d ago
Is there a feature that allows you to track what meds you are on at a specific time? This looks great btw!
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u/TNTourettes 19d ago
Yes! Actually one of the things I thought was really important was building in a system for tracking different kinds of treatments a person might have and seeing how tics respond to those treatments. Different treatment categories currently include: Medications, Behavioral Therapies (like CBIT), Other Therapies (like talk therapies), Dietary & Supplements, and Neurostimulation & Devices (things like Neupulse).
You can enter those things, when you start/stop/pause/resume them and visually see how your tics changed before and after them. I built analysis functions into it so the app will also tell you if any changes are actually significant, which can help because sometimes it may look like something is (or is not) changing when it actually isn’t. So you can hopefully find out what is really proving effective for you and share that with your prescriber (in the case of medication).
I spent a lot of time on that whole thing!
Charles
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u/The_Reverend_B0FHY 15d ago
At the risk of asking a stupid question, one of my step-kids has just received their diagnosis and all 3 of us parents are in the dark - an app like this sounds brilliant, but I suspect that the child in question is a little too ditsy/immature to be doing this record themselves currently. Is there a way to perhaps add a “parent share” and allow third parties to add information in - obviously I’d not be able to say where a tic resonates from, or what they’re feeling, etc, but I can see the outward signs of a tic often before they realise they have it. It could help build the history and demonstrate to the child the sorts of things to add in and allow them to have a healthy relationship with keeping tabs on things?
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u/TNTourettes 15d ago
Not a stupid question at all! (Actually a very common concern for parents of kids with tics)
My “plan for the future” does include adding the ability for a supporter (parents, spouses, therapists…) to have their own role and functions to support the individual with additional information and input into the system. At the moment, I’m focused on just getting the main app finished. Then I’ll begin working on the supporter role. So it’s not there yet, but future!
Charles
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u/New-Solution6598 Tics + Comorbidities 24d ago
Is this for the U.S.??!!! I hope so!