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    Community Voices

    Holy **** I'm sick

    <p>Holy **** I'm sick</p>
    Community Voices

    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

    1 person is talking about this
    Community Voices


    1 person is talking about this
    Community Voices

    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

    2 people are talking about this
    Community Voices
    Amy Nielsen

    When It Comes to Neurodiversity, Awareness Isn't Enough

    Neurodiversity has been around since the existence of humankind. According to Natalia Lyckowski, Global Neurodiversity@IBM Business Resource Group Co-Chair at IBM, “Even in the earliest communities, the NDers (those who are neurodivergent) in many cases may have been the Holy People – or the Medicine Workers of the community. People who had the capacity to remember which exact leaf could cure or kill, that could hear predators or prey coming before others, those that had big ideas. Somewhere along our human timeline, many such individuals became outcasts…and that’s a bit where we are still stuck today.” Currently, it is estimated that approximately 30-40 percent of the population is neurodivergent, meaning their brains are not neurotypical. Neurodivergent conditions include autism spectrum disorder, ADHD, dyslexia, dysgraphia, Tourette’s, and more, and can often co-exist with mental health disorders. Coined in the 1990s by Australian sociologist Judy Singer, neurodiversity encompasses the belief that these neurological differences in the brain aren’t deficits but rather are normal and natural deviations in the human genome. As a mother of an autistic son, I appreciate the term neurodivergent. It helps to remove the stigma that often surrounds individuals who are not neurotypical. If you don’t have a neurodivergent family member, they are in your communities, neighborhoods, places of employment, and schools. A clear understanding of their challenges and strengths can help us as a society meet these individuals where they are while capitalizing on the contributions they can make in the world we all share. According to an article in Harvard Business Review titled Neurodiversity is a Competetive Advantage, “Many people with these disorders [neurodivergent conditions] have higher-than-average abilities; research shows that some conditions, including autism and dyslexia, can bestow special skills in pattern recognition, memory, or mathematics.” The article also says that even though these employees might require some accommodations such as noise-canceling headphones, a quiet-private workspace, or others, the return is worth it. Embracing the Neurodiversity Movement means individuals with neurodivergent conditions no longer must mask their differences to be seen by society as a whole. It means moving from passive awareness to actively accepting neurodivergent individuals and advancing the cause for full inclusivity. “The culture change we need to accept neurodivergent people is just like getting a garden ready. Most seeds and plants can’t grow in sand alone. We need fertile ground. If you change the environment and get rid of the rocks and sticks, new seeds can take root and the plants already trying to grow there can blossom.” – Natalia (La Duca) Lyckowski – Global Neurodiversity@IBM Business Resource Group Co-Chair at IBM

    Community Voices

    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

    6 people are talking about this
    Community Voices

    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:

    Community Voices