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  • About Dystonia
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    What's New in Dystonia
    Community Voices

    Holy **** I'm sick

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

    What to do for my hand that's clamped shut?

    My left hand has locked up and I can't really use it much and my muscles in my arm and neck keep jerking uncomfortably. I'm thinking of getting some kind of hand splint to keep my hand open so if won't clamp painfully shut. Anyone else have that issue? #Dystonia #FunctionalNeurologicalDisorder

    2 people are talking about this
    Community Voices

    Train your Eyes

    <p>Train your Eyes</p>
    8 people are talking about this
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    I’m new here!

    Hi, I’m new here, I’m Samantha from RareResilience where I share my journey with chronic and rare conditions, my fight for survival & justice and I also advocate for others in similar circumstances. I’m a senior psychotherapist and Psychology major, with additional training in healthcare, SEN, functional medicine & nutrition.
    I’m here to meet likeminded people, to share my writing & journaling & to connect … connection is what we all need I think 💖💪🏼
    #MightyTogether #ehlers-DanlosSyndrome #Dysautonomia #Dystonia #PelvicOrganProlapse #TetheredSpinalCordSyndrome #Scoliosis #PTSD #complexpost-traumaticStressDisorder #Anxiety #Grief #RareDisease

    3 people are talking about this
    Community Voices

    Story Time of Sadness: My Terrible Summer Part 1

    "You should have her committed today," she said as though I'd left the room. Her thick German accent nearly plastering the words on Jim's face. "She is obviously faking it. She was fine out in the waiting room and now she can't move?" She was right, I was closest to normal, waiting to see her, huddled on my fiance's arm in the cushioned leather chairs. It was actually an "okay" moment but so were they all before the dystonia hit and I became a breathing statue. Like a scene straight out of The House of Wax, the 1985 version, I felt and heard everything but could not respond. The hospital called it #Dystonia mixed with #Catatonia , I called it one of the scariest summers of my life. Now I can and will be the first to admit that I have problems and, like most of the world, I deal with #Anxiety and #Depression . I have in fact attempted suicide more than once and found myself severely depressed in the months leading up to that terrible appointment. But I deal and have always dealt with my mental illness and more often than not, I'm happy. It's apart of me, but not all of me. I guess I should back up some, so that it makes a little more sense.

    I can remember the moment my eye began to twitch. It was a weekday morning and the sun was bleeding through the blinds. I could smell coffee wafting through the halls and fried eggs. And the low hum of fluorescent bulbs pairing nicely with the office chatter. But I couldn't concentrate or wouldn't concentrate at least for the benefit of my sanity. Instead I observed the sunlight dripping off the plastic blades like liquid gold, spilling onto the brown hair of my supervisor. Her desk sitting inches from mine in all the glory of that window. I wanted to be out in that sun drinking it up.  Just the stillness of a morning sun and I to share a moment. I wanted the grass between my fingers and the chill that collected on the blades from the night before.

    Hiking across the campus in the shoes of a student with unrealized unreachable dreams. There was a thrill to living on the campus grounds and out of the supervision of parents. Suddenly you stepped down on the thoroughfare, sugary soda in one hand, bag on back. A long day's trek brings you to a cloud dust of a city, although not really, it's actually quite breathtaking. Passing eyes wandering toward your unfamiliar gaze as you tip your hat to everyone. "'Mornin,' I spoke. The silent folk nod or smile, but some simply ride on. The city was small comparably to the standards of Knox-Wood, a seedy town not two hours ride. I clutched onto my parcel and walked into the West Salloon, an all girls inn. After bidding my kinfolk good-bye I head out to reap the benefits of the wild west. Or otherwise known as, spending three to four years in the art program, rooming with my little sister, panicking everyday and fighting the urge to cry every second. It brought a whole new layer to the nighttime sadness that I'd feel from time to time as the sun slowly sank off and out of my life.

    Community Voices

    I'm new here!

    Hi, my name is pripri. I'm worried about my daughter who was diagnosed and over-medicated, due to over medicated she now suffers from something called "DYSTONIA to her Neck. Because of her struggle she is now turning to the street 'Excasty" for relief. I don't know how to help her aymore


    1 person is talking about this
    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

    Why am I here?

    23 years ago this month I got into an auto accident that hurt me a great deal physically and would later progress into segmental Dystonia.

    I feel very very ambivalent this month each year because I’m not sure why I survived. So I take it easy on myself and become pretty quiet.

    I don’t know and I don’t believe anyone does. So I do the best I can after surviving a coma, broken bones, a ruptured spleen, etc. Sometimes it’s best to just be quiet and other times it’s best to get busy.

    We’ll see how it goes today…

    13 people are talking about this
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    Community Voices