Dystonia Awareness by Janice Tindle

Today is May 8th. It’s Dystonia Awareness Day. I spent eight hours this week in the ER because of an overly aggressive PT appointment. The therapist had never heard of Dystonia. She was willing to help, but, she didn’t understand how my body would react to anything other than a light touch. It reacted by going into crushing spasms in my chest. My pinkie and ring finger felt painfully numb and at times felt like someone was twisting and pulling them backwards. My arms ached like someone who had overworked at the gym from lifting too much weight. And worse of all, came a mind-blowing migraine. I lost my ability to speak and see. I had to get a painful nerve block from the headache doctor. Most of the migraine subsided, however, the chest pain was too much to endure. I felt nausea, dizziness and was having hot sweaty and clammy skin.  I decided I had to go to the ER. This was pointless because the medical staff had never heard of Dystonia. They decided I should be checked for a heart problem. I knew it wasn’t my heart. So I laid there for six hours while they did their tests. Everything was within normal limits. Conclusion: Muscle spasm.  

There is no awareness in the medical profession for Dystonia. Because of that, people with Dystonia can’t go just anywhere for medical treatment. We need our Dystonia specialist. But they too are limited in what they can do. They treat the symptoms, that’s all. 

In the hospital they have no idea what to do except to say, ” Try this medication and see if it helps.” It is a problem for me because too many medications cause adverse dystonic reactions. The last one I had left me shaking for three months. Not only is Dystonia exhaustingly painful, it has no real medical treatment or cure. People with Dystonia suffer greatly. Most are invisible because they are confined to home shrouded in agony and loneliness. Imagine feeling like an invisible force was twisting, pulling and contorting your muscles while sending electrical charges through your nervous system. This is my Dystonia. We need compassion, support and assistance. 

Dystonia can hit anyone at anytime. Mine is the result of brain and neck injury. 

Today I am raising my voice in an effort to make people understand that this is a heartbreakingly disabiling neurological condition.  

 People with Dystonia have strength beyond what most deem intolerable.  Please do what you can to render aid to someone with Dystonia today. For more information  :https://www.dystonia-foundation.org/

About janicetindle.com

NOTICE: NOTHING, and I mean NOTHING, from my website janicetindle.com may be use without a request in writing to me. Permission, if granted, will be done in writing. Failure to do so will result in possible prosecution. I am the sole owner of my words and at point of publication on this site it is copyrighted as mine. - copyright 2012 Janice Tindle In 2010, I suffered a traumatic brain injury and other injuries when hit by an under insured driver. It changed my life. I now live with Dystonia, a rare and painful neurologal disorder that causes involuntary muscle spasms and abnormal posturing. There is no treatment or cure. The best one can do is treat the symptoms. You can learn more at DMRF.org. I try to write about people and things that help and inspire my readers. You can find more of my story by going to helphopelive.org. I am also on Facebook, where I have five pages, Pain Brain -Anti- Inflammatory Foods, Brain Tears, The Positive Posters Page, Traumatic Brain Injury Resources Page, Janice Tindle- Writer. I am also on Twitter and LinkedIn. Simply Google my name and my published articles should appear. I've been published in Fearless Caregiver, Today's Caregiver, TBI Hope and Inspiration Magazine, The Mighty.com, and several other publications. I am currently a caregiver for my dear mother. My hope is to someday finish my books, "Get Back Up!" and "Galicia's Granite" during my mother's lifetime. Your interest in my care, recovery and writing is greatly appreciated. Thank you. Comments are welcome.
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3 Responses to Dystonia Awareness by Janice Tindle

  1. briavarner says:

    Reblogged this on bria varner and commented:
    I’ve only seen one case of dystonia professionally… and only watched the treatment, not been on the case myself. It makes my heart ache just watching this person move… and move… and move. In this case, from what I’ve seen, the person’s independence has been taken from them. They can’t go out without hanging onto someone else for support. Assistive devices seem out of the question, because the devices become more like weapons in this person’s hands. But people have to take turns walking with this person, or at least they do in the clinic, because the movements are so severe that the guiding person gets a workout trying to keep themselves and the patient upright. Anyone out there have experience with dystonia, personal or professional?


  2. pjoy17 says:

    Big hugs! I just read this entry! I too have dystonia , mine is part of CMT, Charcot Marie Tooth disease , or at least my neurologist thinks so, I haven’t found other people with CMT that have dystonia symptoms too to discuss this with them . I have had symptoms since I was a child, the twisting in my legs and then later in my arms , legs , hands , feet, trunk, chest ( what you described as a heart attack I can relate with ) and lower abdomen. I have had some good response to senemet ( levadopa carbadopa , some help, but have to be careful not to get over tired , over dehydrated , over worked out ect, never know when what is going to trigger it . your post hit everything on the head of the various feelings I experience.
    PJ ❤

    Liked by 1 person

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