You Have Dystonia?

I have D-Y-S-T-O-N-I-A? No, it’s not a former Soviet Socialist Republic but a neurological movement disorder.

So what is Dystonia? Let’s set aside medical formalities and fast-forward to practical realities. Imagine you’re trying to jot down a grocery list and, quite inconveniently, someone jerks your elbow up and down, making it difficult – if not impossible – to control your writing. Or maybe you tackle something complicated like walking across a room. You lift your leg to begin that first step when a mischievous troll screws up your balance by pulling your foot inward, causing you to land on the side of your foot and desperately search for stability. Simultaneously, some imp twists your knee while your hip dips and swings in a motion that would swirl a hula-hoop.

Welcome to my Dystonia!

32 responses to “You Have Dystonia?

  1. Pamela Grayson

    This is great, Pam! Can’t wait to read more!

  2. Nice job, Pam! Keep it real. Love the links to the other dystonia information web sites. I bet you pick up more followers than you expect.
    Ed Gewirtz

  3. Terrific job, Pam! Truth, humor, well told. Keep it up!

  4. Pam- Excellent job! I;ll be following- Susanna Feder

  5. Congratulations on launching your blog! I’m eager to read more!

  6. Good job! Hopefully you will inspire me, I have kicked around the idea of a blog for a while now. I enjoyed reading this and look forward to more posts! Did you do the illustration as well? I like it!

  7. mary Hpenigmann

    I was doing some baking tonight and the dystonia troll grabbed me and flour went all over the kitchen and then I hit my head on the cabinet. Had to laugh. Have had dystonia for over 20 years. Thanks for inviting to your site!!

    • Mary, Lovely to have you here. Those trolls can be nasty little things, can’t they? Hope you made yours clean up the kitchen mess. I’d love to send mine off on an extended time out! -Pam-

  8. That explained it better than the DR’s do. well done. love it,

    • Hello Carol, Doctors don’t do a good job explaining most illnesses, especially dystonia, they get way too technical when we are living and breathing human beings. Just trying to set the record straight. -Pamela-

  9. Thank you for your excellent description.

    • Hello Pam, Thank you for reading and taking the time to comment. I literally walked up and down the hallway in my apartment several times to get that post right! -Pamela-

  10. I really enjoy your style of writing and the education your providing about this crazy disease.

    • Hi Jacqui, Thank you so much for commenting and following my blog. This site is truly my labor of love. I’m doing my best to spread awareness and support others…with a smile! We’re certainly not the best known neuro disorder! Take care and have a wonderful week. -Pamela-

  11. maida robarge

    This makes me feel good! I am not alone any more!!

    • Hello Maida, So glad you found this site and that something I’ve written has helped. Dystonia can be quite the journey and it’s so important to know that we’re not alone in our feelings. I hope that you’ll continue to seek encouragement and support. There’s a whole community of caring people and organizations out there. You are not alone. -Pamela-

  12. Great post. I love how you can keep in short and real!
    ~ The Just Mildly Medicated Gal 😉

    • Hey Carrie, Lovely to see you here again. As you well know, when trying to spread awareness, one needs to capture the reader’s attention. “Short and sweet” is quite an effective strategy! Wishing you the best. -Pamela-

  13. Hi again. I had to come back and re read this posting. been following you for a year now and over the summer my gait has gotten a new swing to it too. My feet have started to twist like a monkey! I just tell people I’m dancing to my own tune. LOL Yesterday when I was trying to hurry inside a Doctors office to get out of the wind my right foot kept landing on it’s side so I flailed my arms to compensate and it looked like I was trying to fly! Ha ha. For some reason this made me think of you so I had to come back to the first post that I had read of yours. You are in my thoughts a lot. You help me to laugh at some of the things I do. Thank You!

    • Kari, Glad to hear you’re able to laugh, what else can we do. Well, there are other options but I don’t choose to take them. Frustrating as Dystonia can be, this is our life and we should make the best of it. What you describe about losing and regaining your balance is oh so familiar, that’s my “tightrope walk.” Glad you can relate to what I write here, which really is the whole point of it all. Best to you. -Pam-

  14. Most interesting posts ! The word dystonia grabbed my attention as it is of Greek origin and I visited your blog to see what it is about.You have done amazing work,love the way you approach health issues.Instant following !

    • Doda,Thank you so much for following and taking the time to leave your calling card. Interesting how you happened upon Dystonia and my site. I’m grateful for every person who makes the effort to learn more about this rare condition and life with chronic illness. I took a trip to your blog and most enjoyed the pictures and bit of history. Your photographs are truly lovely. -Pamela-

  15. I was diagnosed with dystonia october 2014. New at this need all the support I can get.

  16. I was diagnosed with dystonia october 2013. New at this need all the support I can get.

    • Elize, Dystonia can certainly be a tough diagnosis. I don’t know if you are on Facebook, but there are a number of support forums there run by different organizations and individuals. In particular, the Dystonia Medical Research Foundation maintains a few forums, depending on the type of dystonia. If you have trouble finding links, I’m happy to provide them for you. Know this, you are not alone. -Pamela-

  17. We are a gaggle of volunteers and opening a
    brand new scheme in our community. Your site offered us with valuable info to work on. You’ve done a formidable activity and our
    entire group shall be thankful to you.

    • Kennith, Thank you so much for taking the time to comment and I wish you the best of luck with your endeavor. Thrilled you are part of an effort to make a difference in your community. -Pamela-

  18. Troy Anderson

    I have dystonia, 10 yrs now. ” Rough “

    • Troy, Thanks so much for visiting my site and taking the time to comment. Having lived with dystonia for 40+ years, I certainly know what you mean- dystonia is tough…and then some! We do what we can and hope for that elusive cure. Please feel free to contact me at my Dystonia Muse email ( for resources and/or information. Enjoy the rest of the weekend. -Pamela-

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