My mom's puppy is slowly training herself to assist with my tics, despite being afraid of them like a month ago.
I started up with some self injurious tics and she came to me immediately, climbed onto my lap, and laid upwards across my chest so I had to hold her. No free hand for the self injurious tics, and even when I got a full body shake she stayed put.
Once my tics passed, she got back down and went to my mom.
I've never specifically trained any of my animals, they just learn what helps and do it themselves. I've thought about getting them specially trained and certified but ik that would be a long and difficult process.
For now, they just help me when I'm home, and that's more than I could ever ask for.
Omg so today my mom and I were running errands and we pass a sign about shorkie puppies for sale.
We get to talking about them and after saying the name a few times I go off with my "SHORK" tic. So I tell my mom if we get one (we absolutely do not need another dog btw) that we have to name it Shork.
An hour or so later I go off with "shork" again, and my mom is like "see, you do want one." I reply with something along the lines of "Of course Archie (nickname for my Tourette's gremlin) wants one, he just wants another dog to bark at." I've had a tic recently of barking back at dogs, especially my own. It's just one sharp yap but it's kinda embarrassing when I have to fight against barking at the neighbor's dog. So it gets suppressed A LOT when I can.
Mom jokingly replies along the lines of "see, Archie says yes, Archie bark!"
AND I FUCKING BARKED
Mom was mortified but I was cracking up laughing which made her laugh too and we were both like "I can't believe that actually worked"
Looking back it shouldn't be so surprising bc my tics can get triggered by hearing the words or hearing them spelled out, but in the moment it was like shocking that it worked out that way.
Of course my mom was like "see Archie thinks it's a good idea" and I replied "of course he does he's literally my lack of impulse control. If it were up to him we'd have 7 dogs, 8 cats, and a ton of reptiles. That's why we don't let Archie make decisions!"
And right at that moment my right hand fling went off as if to smack the window, which was thankfully open. So now I'm 100% certain my tics are trolling me.
Every year May15th-June15th is considered Tourette's Awareness Month. Last year I tried to do a post a day all month, but I missed quite a few days. I'd like to try again this month, but I could use some topic ideas.
If there's anything you want to ask about Tourette's in general or my Tourette's in particular, I'd be happy to answer them ☺️
I'll open asks, but you could also reply/reblog this post, or even message me directly if you'd prefer. Even if you don't have any topic ideas or things you'd like to ask, please reblog!
As of writing this, there is no cure for Tourette Syndrome. There aren’t even medications geared directly towards tics. There are, however, a few options. There are ups and downs to each option, and not all options will work for everyone. As this is the informational/medical sector of the month, I will be giving only the medical information and saving my experiences with some of these options for the personal section, if I touch on it at all. No one should form your opinion on treatments apart from yourself and a medical professional, I am neither of those, I am just here to present the information.
Medications:
As previously stated, there are no medications for tourettes directly, but some medications for other conditions have been shown to sometimes reduce tics to more manageable intensity and frequency.
Dopamine inhibitors were the first medicines that had a noticeable decrease in tics. Usually used to treat conditions like schizophrenia, stimulant psychosis, and bi-polar disorder. These aren’t often prescribed unless absolutely necessary, as they have a host of possible negative side effects, such as weight gain and involuntary repetitive movements.
Stimulants, such as those for ADHD have also shown a decrease in some cases, but also have a risk of increasing or exacerbating tics.
Central adrenergic inhibitors are another option. Commonly used for high blood pressure, they have side effect including drowsiness, dizziness, and headaches
Anti-seizure medications are a newer player in the possible treatments for Tourette Syndrome. However, it can cause brain fog, dizziness, fatigue and weakness.
Botox is one I don’t fully understand, but from what I do understand it can relax the muscles involved in the tic to lessen the intensity of some tics.
Indirect Treatments:
Another form of treatment for Tourette Syndrome is by treating underlying issues that may be contributing to the intensity and frequency of tics. This usually relies on treating things like anxiety and depression separately from the Tourette’s, in hopes that reducing possible triggers can lessen the tics.
Therapies:
Some Therapies have been shown to help reduce tics as well, but of course are not guaranteed to work.
Behavioural, or Occupational, therapy focuses on helping people with TS learn to recognize their premonitory urges and redirecting the tic to a less noticeable or less destructive movement.
Psychotherapy, or talk therapy, can help cope with the stress of Tourettes and other conditions, which may help to reduce triggers.
Deep Brain Stimulation (DBS) is yet another one I don’t fully understand, and as such don’t feel very comfortable talking about it. There’s very limited information on this, and though it is listed as a therapy, it does involve a surgical procedure.
Once again I want to clarify this is purely for informational purposes and is in no way medical advice. If you want to try medical interventions, please speak about it with your doctor, and preferably with a Neurologist. While I’ve tried to remove any chance of biases from myself, there’s probably still traces of them, so please keep that in mind when processing this information.
Just a reminder that tomorrow will largely be a rest day, but I'll be open for questions or topic requests if I can. When we return, we're moving into the more Personal section of the month.
As always, thank you for reading, and I hope you have a great day!
So I've been putting off talking about my tourettes recently bc it seems everytime I have the words to express what's going on, something new happens. So instead of trying to organize things or put them into like a semi story-time post, I'm just going to list things out. These will probably not be in chronological order because so much has been going on the last 2 or so months that I've lost track of all the "when"s.
⚠️everyone's experience with Tourette's or tic disorders will be different, I can only speak to my own⚠️
⚠️TRIGGER WARNINGS for descriptions of tics/tic attacks, description of self injurious tics, abilism ⚠️
1. Nicknamed my Tourette's gremlin "Archibald" or "Archie". I tend to yell at my tics already when I get frustrated or annoyed, so I named him. It's mostly to make myself laugh. Saying "Archie's being an ass" or "apparently Archie didn't like that" makes me giggle, and more so when my friends play along in cursing Archie. It also lets my mom/friends know I'm not hurting from my tics.
2. Developed a lot of new tics. Some I've had before as one offs but are now common ones. The new tics include saying "knock-knock", "hi" (hi being said in not my normal voice), "Beetlejuice!". I've also developed biting at the air? Like my head goes forward and I bite so that my teeth clack.
3. Developed a frequent, kind of self injurious tic. On the same day or week that "knock-knock" came about, I also started knocking on my head twice w my right hand. It can be really soft or really hard to the point it concerns my mom. We tried having me wear like a beanie but it seemed I knocked harder with the hat on, and I'm really picky about hats bc sensory.
4. Got told by the family member I work for that I could easily find another job if I "weren't so picky". I then had to explain to her that I have seen the change in an interviewers face from "You look like a great canidate" to "finish this up as quickly as possible and never contact them again" when I had to disclose my Tourette's (noticeable repeated tics, otherwise I'd never disclose). I also had to tell her that I was "coincidentally" let go from a job the day I had to disclose, after being told repeatedly that I was doing well before. I also had to tell her that the one job that seemed chill about my tics that wasn't family connected, I had to quit bc it was 30/40min away and I don't drive so was begging people to drive me.
5. Fully convinced Archie is actively trolling now, as the "Beetlejuice" tic came about after mom said her coworker said it and she had to repeat it 3 times fast (she also has tics but is undiagnosed). Then the "Beetlejuice" started and she had to repeat it everytime.
6. I've been working for like 4 weeks now, and have had Tourette's related issues 4 times now. I've left work an hour early twice, 5 hours early once, and had to miss a day due to tics/tic attacks.
7. The missed day actually happened this week. I started getting intense head jerk tics about an hour before my shift finished, but I wanted to try working through it. Every few minutes I'd be forced to quickly/violently look to the right 5-10 times in a row. It started to hurt really bad but I managed to finish out my shift. By the end of my shift my head, neck, and shoulders hurt like crazy, and pain meds didn't seem to help at all. (Wasn't sure if they'd help for repetitive motions but figured was worth a shot). It kept going like that for 3 or 4 hours before I relented and said I won't be able to come in the next day. I couldn't lift my arms above my head or look to either side from the pain of it all. I'm still sore like 2 days later but able to move around now.
8. Biting the air tic came about when I was kind of hungry, but apparently also happens when I'm pissed? Happens randomly too, but thought that was funny.
9. Trying to figure out how to get my family to understand that just bc tics CAN mean something is wrong, they don't ALWAYS mean something is wrong. I know they're just worried and wanting to help me but if I tic 3 or 4 times in a row they keep asking "what's wrong" and won't take "nothing, it's just happening" as an answer. At which point I end up getting frustrated because they keep asking and the frustration leads to more tics.
10. We pulled up at a gas station that was advertising hot dogs and my mom ticced "hot dog" in the same voice she uses when our puppy brings her her hotdog toy. She was trying to suppress it, and afterwards she looks at me and goes "I couldn't NOT say it, like it physically hurt trying to not, is that how you feel all the time?" And I was just like yeaaaah pretty much. Mom's tics are usually reactionary, and she doesn't get a lot of premonitory urges, so it was really unusual for her.
That's all I can think of at the moment, thank you for reading. If I think of anything else I'll probably make another post but I'm not sure if I will. Sorry this one was so dense, I've been putting this off for a while lol.
Gilles de la Tourette Syndrome, also known as Tourette Syndrome/Tourette’s Syndrome/TS, is a neurodevelopmental disorder that causes involuntary actions.
Its diagnostic criteria is usually the presence of both motor and vocal tics over a period of time that were onset before age 18, the average onset age being 6. These tics can either be complex or simple, but must be unrelated to anything else, such as other conditions, medications, or substances. While there is no test specifically for Tourette’s, one may be asked to undergo MRIs or other imaging and blood tests to ensure there isn’t another potential cause.
Tourette’s can sometimes be overlooked when one’s tics could be attributed to other things (ex. A sniff-like tic being attributed to allergies). Once thought to be extremely rare, it’s now suggested that about 1% of school age children have Tourette’s. As it is a developmental disorder it can appear unexpectedly, and disappear as well.
Many with the disorder report a drastic decrease or disappearance of their symptoms as they become an adult. It’s also easier in some cases for adults to suppress or redirect their tics to be less notable. In other cases the symptoms can stay the same or even become worse.
Personally, I find the history of Tourette’s interesting, but if you aren’t looking for a history lesson or historical abilism you can skip this section.
Initially called “maladie des tics”, Tourette’s was first documented as a medical condition by Georges Gilles de la Tourette in 1885, one year before he was officially recognized as a doctor. His mentor then had the condition named for Gilles de la Tourette.
Tourette’s was possibly documented previously in 1498 when a priest had motor and vocal tics, however at the time they considered him possessed. Then in 1825 Marquise de Dampierre was documented as having involuntary movements and inappropriate verbal outbursts. She ended up being one of the nine cases mentioned in Giles de la Tourette’s research. There was also a notable increase of documentation of what would now be called tic disorders after the Marquise.
After the death of its namesake, Tourette’s was neglected medically, and thought to be simply acting on one's subconscious desires. That was until in the 1960s when a neuroleptic (also known as antipsychotic) drug was shown to reduce symptoms of Tourette’s. Then in the 1970s the National Tourette Syndrome Association was founded, bringing the disorder back into social consciousness. Beginning in 1984 the Association was able to award research grants, encouraging more research to be done, and more organizations to be founded.
Finally, a little about me since later this month we might be getting real personal.
I go by Fen here, and I was diagnosed with Tourette’s around Dec 2017. I figured I like to run my mouth and answer questions, so I might as well do some good while I’m at it. As such, I’ll be the tour guide for this Tourette’s Awareness Month endeavor. If you’d like to know more than I’m covering here, I’m usually around, and if I don’t know an answer, I can try and find it for you. However, I always try to give the warning that my experience won’t be the same as everyone else’s with Tourette’s, so on some topics I can only give my personal thoughts, or on occasion the experiences that have been told to me by others in my life with Tourette’s or tics.
So going forward if I'm describing tics in detail I'll add "tic depiction" in the tags as well as on top of the post. Self injurious tics will be tagged "self injurious tic depiction". I want to make sure if you're prone to picking up tics or to start ticcing when they're described (like me on bad days) that you can more easily avoid it.
Also! So long as everything goes to plan, I've scheduled my Tourette's Awareness Month posts. They are roughly grouped into Medical (May 15-21), Personal (May 23-June 1), and Social (June 3- June 15), but some may overlap multiple categories. Anyway, here's the schedule:
May 15: Intro and Overveiw- a general introduction to what Tourette's is.
May 16: Vocab+Slang- quick vocabulary recap and going over slang I've seen used or might use myself.
May 17: Comorbidities- a deeper look into conditions that are common alongside Tourette's
May 18: Rest/Open Day- I've sprinkled in some breaks so I don't get burnt out, but also so if another topic comes up that I feel needs an entire post.
May 19: Genetic or Environmental- Causes of Tourette's were a little iffy at best last year so I want to revisit that.
May 20: Triggers- This will go over common triggers as well as my own triggers.
May 21: Treatments- what treatments are available.
May 22: Rest/Open day
May 23: Diagnosis and Tics- this will be about how I got diagnosed and some of my common tics.
May 24: Day to Day- how my tics affect my life.
May 25: Tics+Art- how my Tourette's affects my art.
May 26: Silly Tics- some of my kind of stupid, kinda funny happenings with my tics (also using humor to cope)
May 27/28: Neurologist Experience/Rest day- I have a neuro appointment on the 27 so I'd like to talk about that, but not sure if I can in the same day though so these are interchangeable.
May 29: Tourette's and Work- my experience as a tourettic person in the work force.
May 30: Applying for Disability- how did applying for disability go for me
May 31: Adapting- some of the things I've noticed I've changed to accommodate my tics
June 1: Tourettic and Queer- since Pride Month overlaps with Tourette's Awareness Month, I figured I'd talk about my experience with both.
June 2: Rest/Open Day
June 3: Tips and Advice- just some ideas to help people with Tourette's.
June 4: What to do for my Friend with Tourette's?- for people who don't have Tourette's but want to know how to help
June 5: Avoiding Abilism- talking about off handed comments that can come off really poorly
June 6: Infantilization of Tourette's- an expansion of avoiding abilism
June 7: Rest/Open day
June 8: Social Stigma- overview of the stigmatization of Tourette's
June 9: Faking and Fake Claiming- both of these are harmful to the Tourettic Community, and I'd like to talk about why
June 10: Tourette's in the Media- how Tourette's is often depicted in media
June 11: Better Representation- what could change moving forward
June 12: Rest/Open Day
June 13: Tourettic Celebs and Creators- a collection of tourettic people you may not know about or may not know they have Tourette's
June 14: Organizations and Resources- some organizations that were very helpful with learning about or spreading awareness for Tourette's
June 15th: Why do all this?- A message about why this is so important and why I'll never stop talking about it.
I want to try to do something for at least every other day to talk about Tourettes and my experience with it.
⚠️please be aware that each person's experience is different and I can only talk about my own personal experiences⚠️
For today I'm just going to talk about vocabulary, both medical and colloquially.
Gillies de la Tourette's Syndrome- also called Tourettes Syndrome, Tourette disorder, Tourette's disease, or TS- is a tic disorder characterized by the presence of both motor and vocal tics that last a year or longer and are onset before the age of 18.
Tic- which I occasionally call a glitch- is an involuntary sound or movement. They can be motor based (shrugging, head jerks, blinking, ect) or vocal (humming, saying words or phrases, clearing the throat). They can also vary in complexity, for example saying one word vs saying a full phrase.
Prompt- idk how widely used this one is but I personally use it so including it here- is the feeling you might get before a tic. My common tics have different prompt feelings so I can sometimes know what's coming. I don't always get a prompt, and they don't mean I can change what is about to happen, it's just kind of a warning.
Coprolalia- the involuntary use of obscene language. If you only know Tourettes from popular media, this is likely what you know it for. In reality this only affects about 10% of people with Tourette's, though I have seen estimates that go up to 30%.
Echolalia- involuntary repetition of words or phrases spoken by others. I also count mimicking noises under this but there may be a word for that I'm not aware of.
Copropraxia- involuntary obscene gestures
Echopraxia- involuntary repetition/mimicking of movements.
Tic attack- a sudden severe outburst of tics.
That's all I can think of at this moment but I'll try to update if I think of anymore. My asks are open if anyone has questions I will be happy to answer to the best of my ability 😊
Trigger- sets off a tic. Not all tics have triggers but several of mine do, and some of them are very odd, I'll probably talk about my strange triggers tomorrow lol.
Tic shopping- picking up a new tic from someone else who has tics.
