movement disorders

Join the Conversation on
movement disorders
219 people
0 stories
13 posts
  • Explore Our Newsletters
  • What's New in movement disorders
    All
    Stories
    Posts
    Videos
    Latest
    Trending
    Post
    See full photo

    Hi mighties

    HELP NEEDED (AND OFFERED)!

    My therapist and cousin helped me start program to connect volunteers with anyone who is homebound, isolated and/or disabled like myself.

    Volunteers (who we call our FAVs--Friendly Ability Volunteers) can have the opportunity to connect virtually, through mail and/or in person giving much needed mutual comfort and encouragement.

    If you or someone you know can use a pick me up pal please fill out this form to make be paired with someone who matches your needs and interests.

    Thank you
    for sharing your friendly abilities nationwide
    Love and many thanks

    docs.google.com/forms/d/e/1FAIpQLSeJaRec_Fg995a7_UzWnOQ8pHce...
    #Isolation #resource #Disability #BrainInjury #ChronicIllness #bedbound #lonelytogether #companion #MovementDisorders

    6 comments
    Post

    Tics?!

    #EhlersDanlosSyndrome so I've recently developed tics, physical and verbal. I used to have them when I was having extreme panic attacks when I was around 14 or 15. But over the years they've gotten worse, and for the past week or so they have become constant. Does anyone else do this? Has anyone heard of developing tics or another movement disorder with EDS? Or is this something else? (I also have POTS and Joint Hyper mobility, fibromyalgia and Dysautonomia, which is kind of the same thing with POTS.)
    #tics #MovementDisorders #potssyndrome

    8 comments
    Post

    Dystonia Awareness #Dystonia #Myoclonus #MovementDisorders

    #dystoniaawareness #injectionoverload #sleepdeprivation #dystoniamovesme #butwaittheresmore #movementdisorder #DopaResponsiveDystonia #keepyoursenseofhumor #princessparking
    I will get it all out in one post, the bad-the ugly-and the positive adjustments.
    It's parkinson's ugly cousin. It's your muscles running a marathon without your permission. One day you stumble like a drunk, the next you have tremors that make you look like a junkie and some days you misplace your words. Jaw spasms=cracked teeth and migraines. Calves in a permanent state of "half of a Charlie horse". Rib spasms are the worst, except that glute spasms are the worst worst, but wait there's more!
    Dystonia gives you FASCICULATIONS (tiny lightening bolt, snake under your skin, leaves you with the attention span of a flea on crack plus keep you awake all night spasms) and MYOCLONUS (jerky, I didn't mean to kick you out of bed, I'm don't need a sweater- random shivers spasms). And the gift that keeps on giving- you can have all of them at the same time which is called a "storm"⛈️
    As one neurologist explained "It's not all in your head.... it's all in your brain"
    40+ injections every 90 days=3-5 almost tolerable weeks in 90 days.
    Now, onto some positive things....
    I am so very lucky to have a supportive husband, son, family and friends. I truly appreciate those 3-5 weeks and try to enjoy the little victories. When my head tremor is active I can turn up the car radio and appear to really know how to jam. I do a great impression of a metronome and a pincushion. I may be "economy sized" but I have calves of steel. I have a cane and I am not afraid to use it. My amazing Dr's in Arizona have been able to time my Dystonia and Arthritis treatments so I only have a REALLY bad month a couple of times per year. I'm definitely not afraid of needles. I have an amazing collection of ice packs, heating pads, and pictures of my brain. The closer they come to helping Parkinson's patients the closer they come to curing Dystonia.
    Dystonia moves me.

    1 comment
    Post
    This photo may contain sensitive content.

    #FunctionalNeurologicalDisorder #PsychogenicNonepilepticSeizures #MovementDisorders Life is full of Suprises

    I was laying down and I went itch my nose..

    And

    I had a Movement Attack.

    Daily, spastic episodes; My whole body Being twisted in all kinds of directions, stuck in positions (like a bridge pose .. for 10 minutes), chorrea, tremors: varying from minutes to up to over an hour. this is my life now. Has been for a year. It is times as these that induce my disdain for what I can’t control and making socialization sometimes a very awkward thing. Not to mention - my very complex relationship with my bed. I go a whole night, weekly, without sleep due to my brain misfiring when I’m not focused on something, relaxing, or resting.

    Some days are so bad all I do is: Lay down to rest cause I’m in pain, have a Movement Attack, wait for it to settle enough to put on clothes, shoes, etc.., walk for at least a mile, stretch, lay down again ( cause I’m so fatigued and in so much pain).... Repeat.

    There is no medication to quell these movements. There is no cure for this affliction. The only salve for quieting my movements is bi - lateral motion (normally going for a walk) .. which is in direct conflict with my self care for my chronic pain ( DDD in Cervical and Lumbar Regions, No cartridge left in my L4 & L5 Lancets, both hips will need to be replaced within the next 10 years. )

    The aversion from passing by someone on the street because I am moving and making facial expressions that are not normal... it’s palatable.

    Regardless, this is a wish for everyone to keep on being courageous and remembering that change is our only constant and we will get through it because we can. And have. #CheckInWithMe