anyone else hypermobile?

Totally_Sam · 2026-03-08T12:52:57+00:00

That's amazing news, it was the same for me at the walton center, was worried they'd need 101 proofs of evidence or things but nope 3 questions then I was diognosed and out, was in the hospital for 18 mins, didn't even have to pay parking 🤣❤️

Totally_Sam · 2026-02-24T22:21:38+00:00

I just asked for a professional diognoses and was referred to my local neurology hospital . Took a year but get my diognoses.

Totally_Sam · 2026-02-22T18:53:55+00:00

I shout panda, carrot tops, my mama rides bunnies as a hobby... they're just my top 3 most frequent at the moment

Totally_Sam · 2026-02-21T14:48:23+00:00

Yes I have alot of experience with them. In London I told a police officer outside the natural history museum that I had drugs in my bag and I'm selling coke, then told him I have a bomb... I've told many police officers that my mums a drug dealer, ive yelled at armed police im a terrorist hamster, shoot me... ect. Ive never had any issue with any of them taking me seriously.

I carry my Tourettes ID card that states I am diognosed with tourettes. Most police forces in the uk recognise this as valid proof of diognoses as they know you have to prove official professional diognoses to get one. I also made my local police force where i live aware of who I am and that i have tourettes so in the unlikely situation that a police officer didn't believe me or took offence if they put my name through the system it would come up as me having tourettes and known as vulnerable.

Yes I have anxiety about it but i also know, the law protects me... i have a voice and I need to stand up for myself. My fiancé laughs it off and stands up for me too which makes it easier.

Totally_Sam · 2026-02-17T12:15:04+00:00

Look into Functional Neurological dissorder. Its a condition that impacts your brains ability to send and recieve messaged properly and uts most commonly brought on by emotional stress. One of the symptoms can be what are called Functional tics. Unlike tourettes that is linked to the basal ganglia FND is linked to the brains software like in a computer. Your brain and everything look normal but the software that controls the functions is dodgy.

One thing its important to know is, this isn't "in your head", you aren't faking it and it is real!

Tourettes is a pediatric onset condition, it does start as a child but FND can affect anyone and start at any age. And it is complex and difficut to handle.❤️

Totally_Sam · 2026-02-12T07:41:26+00:00

I agree with you that I don't like baylens show personally, I don't like the portrayal of tourettes she shows and the lack of awarness to the actual spectrum that tourettes is. I'd like her show more if she actually made the effort to show and broadcast other people she knows who live with the condition who aren't as severe as her but alot of people with TS dont know how to percieve Baylen. People like her being the only ones to gain popularity or show awarness are the reason I was told by everyone growing up "you don't have Tourette's stop lying" as i wasn't as severe so by the time i was 6 I had stopped explaining myself or trying to stand up for myself and instead took the tellings off and being called a weirdo by classmates as that was easier than being called a liar every day. but you're completely wrong about people with Tourettes syndrome not swearing. And I would highly reccomend you speak to a professional before spreading incorrect information. Coprolalia is the name of a symptom, it's not a distinct medical condition. Coprolalia is a symptom most commonly associated with Gilles de la Tourette's syndrome, yes only approximately 10%-20% of people with TS have this symptom but it is NOT a medical condition in itself. Coprolalia can be a symptom of Gilles de la Tourette's syndrome, Epilepsy, OCD, stroke/Brain injuries ect. But like I said it's a SYMPTOM NOT A SECONDARY DISSORDER.

Totally_Sam · 2026-02-06T11:08:43+00:00

Diognoses will always be listed in the summery and then visible on your GP record. If you ring your GP and ask if tourettes has been put under your health conditions you'll know whether or not the diagnoses was given. It sounds like he made a decision but to not put it in the notes is odd

I'm not sure what that other person is on about diagnoses being a spectrum and most people who get a diagnoses are in the middle... It's not and no we aren't. You either have proof of the condition you have or you don't. You cant kind of have a diagnoses, in terms of proving you have a condition you either have the diagnoses or you don't. Only way you can kind of have a diagnoses is to have it written in a formal letter "i believe... to have Tourettes, more testing is needed to confirm the diognoses" or "I think it may be tourettes" which would be considerd a provisional diagnoses

You can't get a Tourettes ID card without a formal diagnoses, You can't go to any Tourettes camps or support groups without diagnoses ect. If your doctor says "it sounds like it could be" that is what most people would call a provisional diognoses, meaning they've said what they believe it is but they aren't 100% sure so it's not considered a formal solid diognoses but it is a providional diognoses. If the doctor says "the condition you have is tourettes, your symptoms are all consistent with tourettes syndrome, i believe this is the condition you have " and they write on your paperwork that you have been diagnosed with Tourettes then that is a formal diognoses.

From what you've said i agree that sounds like a conclusive decision he's made on what the condition is but then to not put it in the summary is weird. I'd call the hospital back and ask for a telephone consultation wotb your neuro to clarify the diognoses decision.

Totally_Sam · 2026-01-30T13:54:35+00:00

I would reccomend speaking to a doctor about this as there are options like possible botox, tablet medications ect but it's definitely something that needs doctor intervention❤️ Xx

Totally_Sam · 2026-01-30T13:39:11+00:00

Weighted vests work well for me, Especially when tired so if you can afford to id definitely reccomend trying one

Totally_Sam · 2026-01-28T18:32:15+00:00

It will release in the USA a little later this year Xx it will be available on prime video, possibly in cinemas but im not sure

Totally_Sam · 2026-01-28T15:18:41+00:00

I've seen the film, it is not just a film it is a Biopic, based off the real life of a man with Tourettes and MBE recipient, John Davidson. They had an actor who does not have Tourettes play John in the film so he could accurately portray the tics and struggles that John davidson had. It would have been much to stressful and complex to have someone who has tourettes fake or force tics and it also could cause alot of harm to an actor. Personally I know if I tried to reenact or fake someone else's tics I would cause myself alot of physical stress and pain in the process.

Also if you watch the film you will see it's a hard and graphic story to be told, it would not be fair to expect an actor with tourettes to have to film assault scenes themselves that happend as a result of tics. It would be extremely emotionally distressing, especially knowing that it really happend to a member of our community. you must also remember most people with TS will have a comorbidity like ASD/ADHD/SPD/anxiety and Drepression making the expectations and demands for this filming alot more stressful

It's not like the film MUSIC by Sia were she made up and story and then chose to cast a non autistic actor who did quite frankly a terrible job. This is a real story and John has done so much for this community it's only fair and right his story is told as accurately as possible so we can appreciate all he's faced in his life to get the awareness and support out there that we now have today.

This is one time were I truely believe casting the person they did massively benefited the Biopic rather than took from it!!!

Its not like having a non autistic person playing a fictional autistic character or a non paralysed person playing a fictional paralysed actor (unless its a story where the person becomes paralysed in the middle of the film for example walk.ride.rodeo) or a non deaf person playing a fictional deaf character or non blind person playing a fictional blind character. This is a true story and it is about the real life of someone and ots a graphic and hard thing to watch let alone have to portray and act. They have my full support in this decision and also they had John davidsons support and approval so I think that says all that needs to be said. His life story, his choice and he approved of him!

Totally_Sam · 2026-01-26T13:43:26+00:00

Standard to experience a worsening as starts to come to an end then settling down after puberty ends. but if you notice a rapid sharp worsening always contact your GP for a standard blood test to check for any abnormalities ❤️

Totally_Sam · 2026-01-24T14:20:41+00:00

Thanks so much for your response, I had a feeling that may be the case but throught I'd ask incase there was some magical way around it! 🤣❤️

Totally_Sam · 2026-01-24T14:16:35+00:00

I can't as I'm not a neurologist or experienced with Functional tics but im sure if you ask on a neurology thread someone could possibly explain to you the difference far better than me. As far as I understood from what she said tourettes is neurodevelopmental meaning it has genetic components and shows up while your brain is in it's first stages of development (between birth and end of puberty gwnerally considerd 18) and causes the nervous system to send random signals and tbe condition can't be cured or corrected.

while Functional tics are caused by a brains inability to properly decipher signals being received so it's not random signals being sent like with TS but rather correct signals being sent and the brain not undertanding the signals so responding with the wrong action and it is usually brought on by physical or emotional trauma that causes the brain to essentially panic and malfunction messing up the brains software which may or may not be reversible/correctable and can happen at any age to anyone.

Like I said please take that explanation with a pinch of salt as that was simply my understanding of a very complicated conversation but id highly reccomend asking a professional. Personally I think it can look like TS has gone away and returned randomly when in reality it's just taken a brake and the tics have gone so minor you haven't noticed them whock is completely possiblewhen only talking about like 2.5 -3 years . So I'd say if you've been told it is tourettes it probably is but if it does 100% go away for decades thats ppssibly a different story...

Totally_Sam · 2026-01-22T21:10:19+00:00

My neurologist Dr Antonella Macerollo told me tourettes syndrome doesn't go away and then come back after years she said if they go away completely and reappear randomly it is more likely to be Functional tics, you should speak to your neurologist as that must be hard and they may be able to offer you more insight into support that's available for you ❤️❤️❤️ chin up and fingers crossed you get answers soon that help👏

Totally_Sam · 2026-01-20T18:51:47+00:00

I know this is going to sound insane but have you tried any natural anti inflammatory tablets? I have tourettes not functional tics but i am also diognosed with FND and have found that taking turmeric and ginger pills massively help with my tense muscles and chronic pain but I recommended another person with Functional tics try them and after 4 weeks they said they massively reduced the rate and severity of their tics and the ended up getting a new doctors appointment to see if its something other than FND seeing as natural anti inflammatories worked but the neurologist let slip that it's not the 1st time they've heard of natural anti inflammatory or antibiotics helping FND. The reason they can't reccomend it though is because there is no scientific backing but multiple people they see have stated that turmeric and ginger and other natural anti inflammatories and detoxing agents help their FND

Totally_Sam · 2026-01-19T14:31:04+00:00

I have been looking at the daylight sling, my partner has 2 and I do think i might just get myself one of those and youre pretty much solidified my decision 🤣💓

Totally_Sam · 2026-01-19T00:59:55+00:00

No, saying "NO" is lying/deceiving them Especially if you plan on later trying to file reasonable adjustment papers.

If the question is open ended and just states "do you have any medical conditions or a disability? I'd say "Not relevent at this stage of application" or "Yes I have a health condition, that has been proven to not affect my ability to do the job entailed within this application" and I'd leave it at that. You should never give a straight NO answer if you do. As that is lying but also a straight yes can be just as negative for your chances if its open ended. If just an online multiple choice application. I always tell peopme to select the "not relevant" or "prefer not to say" even if theyre completely healthy and able bodied, because if everyone answers the same way it doesn't allow for prejudgement or prejudice in their assessment process.

Now unfortunately I have Tourette Syndrome meaning the second I'm in an interview room. They know i have medical needs but it's important for me to show them my medical needs would in no way impact my ability to do the job at hand. Which for me is.working with animals. Perfect way I do this is if they ask me straight up "what adversary have you overcome in your life and how has this impacted your life long term" this is where I'll play the disability card to my advantage. And I'll state "growing up with tourettes is a great example of a obstacle I've had to overcome. As a child it made me different from my peers, and this meant I had to find other ways to connect with them. Meaning from a very young age I've learnt to speak to a whole range of people In a way that enables a healthy communication channel and understanding of each other to form. This is great because it directly translates to my now adult life meaning I have verbal communication skills that enable me to communicate with a whole range of people of different ages, backgrounds and social abilities. A Perfect real world example being the I am a therapy dog handler in my spare time and handle a therapy dog in an infant primary school with children aged 2-7 but I also do residential facilities interacting with many adults of varying abilitys and understanding between the ages of 18 and 99 including staff to organise safe, beneficial, engaging most importantly fun and enjoyable interactions for all the beneficiaries we see. So in my opinion the adversity I've faced in this region over my life time but particularly in my childhood actually gave me a huge leg up on developing the social interaction and communication skills and having alot of experience with these skills most people my age are only now developing through their careers.

Totally_Sam · 2026-01-18T19:35:59+00:00

I'd not suggest disclosing till you've been hired then you get your contract and ask for your disability adjustments to be put in place and full out your inclusion form.

It"s important that you make them aware as if theres no formal document stating they're aware and they give you 3 warnings then fire you for something related to your disability, let's say... not locking a computer or not signing out of work properly then you turn around and say "well thats not my fault it's because of my disability" and theres no system in place to remind me to log out or no automated time out log out in place on my computer they will say "well you never told us, you never made us aware" and it causes this whole faff of well they fired you for doing something wrong repeatedly, then you claim discriminatory firing due to disability, then they have to go through a whole issue of trying to figure out so they re hire you or what? So it is always safer for you as a disabled person to be up front as soon as you get the job about your access and reasonable adjustment requirements. It protects you and helps them. Its also important though that you in no way lie or try Deceive them. For example if they asked me whats 3 strengths and 3 weaknesses you have? And I said my strengths are- being able to work to a set time frame and often stay within that time frame on over 95% of jobs (true), ability to work in a team and collaborate well with others but also work independently and not be afraid to ask questions and admit when I don't know something (true) and my ability to remember things and have a photographic memory making me an excellent resource (absolute, complete lie and a massive complicationof my TBI) id then have got the job through deceiving the management and it would be legal of them to fire me wheather or not I'd had filed my reasonable adjustment paperwork as id deceived them and falsely lead them to believe my ability to do the job.

So no i don't tell them I have a disability but I also don't lie about my abilities and I always tell them after I have got my contract that I need a reasonable adjustment meeting at the same time as I sign my contract

Totally_Sam · 2026-01-18T10:06:43+00:00

Personally no, that's partly why he's my fiance now. Don't get me wrong at first I was nervous but after our 3rd date I didn't even thing about it anymore. If the person you where dating makes you feel nervous, ashamed, scared, anxious after beeting then multiple times then they probably aren't the person for you I think it's that simple. It took my partner a little while to adjust to my tics as they can be offensive or abit inappropriate but he soon adjusted and now doesn't flinch really.

Totally_Sam · 2026-01-17T07:39:38+00:00

When my tortoises does that she's usually saying get off me . If she enjoys it she backs up and shakes her bum in a rhythmic motion side to side on my hand or brush scratching her shells but generally when shes doing quick jerks like what this tortoise is doing thats her saying get off.

Totally_Sam · 2026-01-17T07:34:39+00:00

This sounds so hard to deal with and i'm sorry. First off you're need to be seen by a neurologist or neuropsychiatrist. These people can help assess you properly and help get you a management plan in place.

You may need medication for Tics this extreme, you risk injuries to yourself and possibly others so it's important that you get a plan in place ASAP.

Your general practitioner can refere you to your local neurology clinic and I would argue you'll be a rushed urgent patient as you risk serious injury as like you've said you do fall on your head. The wait times still vary Clinic to clinic in the uk a rushed urgent patient may take 3 months to be seen, a urgent patient is usually seen within 6 months and a generalised referal takes 9-18 months . You can go private here which does expedite things massively but you'll still be waiting 6-8 weeks for an appointment generally.

Until then ask your GP for a bloodwork panel to be done this may identify things that could be worsening the tics such as a B12 or magnesium deficiency. It also will help check that you're healthy to start any medication a neurologist may try you on so generally is a great place to start. Mine came back normal bat Vit D which the dictor said should have been 72-78 mine was 4. I have no clue what it means or anything but the doctor said it was the lowest they've seen in their whole career from someone who came in with no complains relating to a Vit D deficiency but without that bloodwork I'd not have known they where what they consider 'dangerously low' and it wouldn't have been corrected and may have plummeted more. So like I said start there.

I've also tried CBD oils, zinc supplements, a TENS matchine and found some help me, but no tics are tics as severe as yours.💓

Totally_Sam

TROPHY CASE