Tourette's

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    Holy **** I'm sick

    Does it ever just hit you out of left field that feeling "oh **** I am actually way worse then I realized!" Like I know I have been sick and my abilities are limited. It just hits me at random times how bad it actually is.

    So like today I had to do an assessment for my Physical therapist and for an upcoming appointment with a new Dr and say how well I was doing balance wise and ability wise. The answers were not great. Along with getting some positive test results back that my Dr got back and scheduled an appointment that night so somethings up...

    Then I started thinking about if I could get a job cus my parents where joking about my dad working at the new hobby lobby that just opened and realized I physically couldn't handle working at all maybe 2 hours a week max. No job would hire me at that and I would require acomidations so no way am I qualified for anything. As a young adult you want to work and do things on your own and realizing you can't because your body limits you so much is frustrating.

    None of this information is new to me on the contrary I have been dealing with the decline of my independence since I was 17 (3 years now). It just hits me at different times and I go "oh ****" when you go from working full time and graduating high-school to being in a wheelchair struggling to speak or do basic tasks and no one knows why. The grief of the life you lost just hits at random moments. Most days I am ok and try to stick to my homework of pt, ot, cognitive, and speech therapy and if I have the energy I work on my comics or art if I don't, I don't and I go rest. I forget how much I have lost and how bad my body is.

    Even with the diagnosises I have done explain all my symptoms and what is going on. The continuation of decline is frustrating. The constant questioning of if today will actually be better then the last but telling myself that tomorrow might be.

    But man are those "oh ****" moments hard.

    #oh **** #tics #nurologicaldisorders #FunctionalNeurologicalDisorder #Tourettes #dyskinesia #Dystonia

    Poll

    I am curious what dx'es you all may have or suspect

    0% ●
    Tic disorder or Tourette's (started in chilhood)
    13% ●
    Functional Neurological Disorder (FND)
    0% ●
    Tardive Dyskinesia (tics / movements caused by antipsychotic
    7% ●
    Restless Legs Syndrome
    13% ●
    Skin picking or hair pulling
    67% ●
    Other
    15 votes
    Post

    2 Steps Forward 6 Steps Backwards

    Do you ever feel like every time you make any progress with your illness/disease you win a little then it knock you so much father back that you will never get back to were you were before?

    So I have FND which means my nerves and brain function abdominally and communicate about as well as toddlers playing the telephone game. Add in a sprinkle of Tourettes Syndrome and Sensory Processeing Disorder, Migraine, Dyskinesia, Dystonia, and we are currently exploring epilepsy. All this results in me being confined to a wheelchair at least 85% of the time and need to be supervised if I am not. Along with eating difficulties, communication problems ect...

    I have to go in for occupational therapy and physical therapy once a year to help me maintain quality of life. Sometimes we add speech or cognitive to spice things up if I need it . All these therapies are great and can act as kinda a filter on how to adapt my life to limitations and give some good ideas on how to make life easier within my limitations my body has placed on me. However it always feels like we make a little progress with them and once I "graduate" out of them (stop making progress usually after a the first 2 months) my body starts to decline again even though I countue to do my home programs (hey I want as much quality of life as I can get I mean I turn 20 in the fall I will take what I can get). This happens with me staring to fall more, my hands start to get weaker, I drop more weight, ect.

    2 steps forward 6 steps back.

    Every time. It seems like I am on this never ending loop of yes some progress. Whap out of no where I get worse ...

    2 steps forward 6 steps back.

    It's like this dance me and my body play. Oh you gonna work to try and get better. Sike now your worse enjoy the new wheels.

    2 steps forward 6 steps back.

    Around and around we continue this dance and we can't seem to figure out why this downward spiral keeps happening. Like I'm not gonna keep fighting for my quality of life but man would I like to stop this dance or at least hit pause for a bit.

    2 steps forward 6 steps back

    It's exhausting. I just moved and my new pcp asked if I had made any progress on getting better and it hit me that no actually I keep getting worse and my symptoms keep getting more debilitating as time goes on. So now we redo all the testing and redo all the things to see if anything has changed...

    2 steps forward 6 steps back.

    Anyway I'm just excused with everything. I'm still gonna try and still gonna give it everything I got which honestly isn't much at this point. Still gonna give it a go. Got to continue this dance in homes that some day it will be 6 steps forward and 2 steps back instead.

    #FunctionalNeurologicalDisorder #ChronicFatigue #ocupationaltherapy #PhysicalTherapy #notmakingprogess

    Post
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    Brownies!

    Baking things with tics can be a challenge and require special tools and extra ingredients. By special tools, I mean things like rubber spoons and plastic bowls. They hurt a lot less when you whack yourself in the head with them compared to wooded or metal spoons and plastic bowls don't shatter like glass. The extra ingredient thing is so when things go flying or get dumped in the wrong place (such as someone's head) you still have enough to finish the recipe. Luckily any mess you make is always cleanable and if you keep your food dog-friendly man's best friend will gladly help you clean up any mess you make. However, this treat of brownies is not dog friendly so don't let them help with this clean-up.

    For more comics check out Ticed Off Adventures website linked below.

    kwillow92.wixsite.com/ticedoffadventures/comics

    #touretteswithoutregrets #tourettesbelike #tourettesitsnotwhatyouthink #touretteswarrior #tourettesyndromeawareness #Tourettes #TouretteSyndrome #TicDisorders

    Question

    Does anyone else feel that Obsessive-Compulsive styles of processing thoughts and feelings sometimes may be more diversity than disability/illness?

    I've heard rarely about OCD being thought of as a category of neurodiversity - not so unlike Tourette's/Tics, ADHD, or Autism in certain respects. As somebody with the disorder, myself, I've often felt frustrated at having to try to fit the "square peg" of my brain into the "round hole" of society. I've been ruled out of counting as really truly experiencing it cuz I didn't match stereotypes. I've felt stigmatized by medicalizing (a.k.a. pathologizing) who I am and how I work. I've advocated so much about it, trying to make new meaning out of my story.

    I don't always feel that my O's and C's are so anxious and awful - aside from trying to fit the way that I work into the behavioral norms others expect of me in school and social communication. I've always felt felt - by its literal definition - the Normal model that people always talk about it can not fundamentally exist in a population without also incorporating the smaller percentages of diversity which lay outside the majority group. To not have those tail ends would mean the entire society is abnormal. I've managed to use perfectionism and certain boundlessnesses of my brain in order to get by and succeed so well in life, but deep inside it feels like a performance and I've forgotten how to just be my unabashed self.

    Obviously there is a pathology involved with the condition, and I've always felt that anybody struggling with anxiety and uncomfortable experiences they're stuck with as a result of their minds' differences should get to receive accommodations and help. It's a huge process for me to live out an "exposure therapy lifestyle", but as effective as it may be pragmatically - it's awful and often feels like... why do I need to always get the same feedback and fix myself. It's hard to perpetually inconvenience others... it's harder to not get the credit and space provided to me cuz im a cis, (largely) straight, able-bodied, white man. It's been so unfair to try to stuff myself into others' ways of being just because it feels there's no spot for me in the world that doesn't involve exposure therapy.

    In my work I've done research that common treatments for the condition may work to alleviate "symptoms" (not my favorite term) and get statistically significant remission - BUT in 1/3 of cases people do not meet recovery and only around 60% of the "symptoms" tends to be addressed on average. This is a huge hole that seems very apparent to me! I wonder why having done exposure therapy on reading may have left me ~able~ to read, but never really desiring or willing to myself. I really think there's something to be said of the idea that acceptance-focused treatments seem to fill those treatment gaps for individuals with OCD. Perhaps it's not in trying to force myself to be what I'm not that is the necessary step. Perhaps it's alright to have experiences related to OCD. It seems that bringing some peace to the picture can really help others and myself feel less ostracized and hopeless.

    Maybe I need a platform to embrace radical positivism and acceptance about my own mind. Maybe I need to identify less centrally with this label and just accept and advocate for my #Neurodiversity

    Post

    hello, my story

    I'm new here so I don't really know how this works but I'm a 21-year-old # female who has random actions that I can't control they say it's not Tourettes but I think it is they have diagnosed me with everything other than Tourettes such as insomnia, depression, and anxiety those are just a few that they have they said it's not severe enough to be Tourettes. but at times I have no control over what my body does.#Undiagnosed

    Post

    Research opportunity- environmental & natural scientists 👩‍🔬🧑‍🔬

    News item sent on behalf of Professor Teresa Fernandes, Heriot Watt University (HWU)

    HWU won NERC funding recently to survey and conduct focus groups in order to identify improvements to supporting neurodiverse people in science careers. Could you please send this email to your distribution. We want to cast the net as widely as possible in order to get as good a picture as possible.

    We seek neurodivergent* environmental and natural scientists to respond to our survey. Our project, Enabling NeuroDiverse Inclusive Science Careers (ENDISC), focuses on improving the inclusion of disabled and neurodivergent researchers.

    What do we mean by neurodivergent? *Neurodivergent individuals have neurocognitive differences, who may experience autism, including Asperger's, ADD, dyslexia, dyspraxia, dyscalculia, dysgraphia, and/or Tourette's syndrome. (Note this does not need to be clinically diagnosed.) If this sounds like you, we'd like you to complete this survey:
    hwsml.eu.qualtrics.com/jfe/form/SV_37MxopxhohY5mR0.

    Post

    I'm new here!

    Hi, my name is folksilk. I’m new to The Mighty and look forward to sharing my story.

    #MightyTogether

    #Anxiety

    #Depression

    #AutismSpectrumDisorder

    #Migraine

    #Scoliosis ''#Tourettes #chestwallpain