Basic Training

For those who haven’t heard of Dystonia, the disease that’s not a country, here are the basics:

Dystonia is a disorder of movement…based in the brain. The best medical guesses pinpoint a structure called the basal ganglia.

Our muscles themselves are fine. They’re just receiving confusing instructions (“mis-transmissions”), like a mis-coached football team running around in senseless patterns, no offense or defense, as they fail to accomplish coordinated plays let alone score a touchdown!

In our game of dominoes, involuntarily contracting muscles cause twisting movements and occasionally commandeer the body into sustained positions. As you can imagine, it’s annoying and dysfunctional day-to-day. Frankly, I can’t tell my “contractions” from my “twists” and the only position I hold is blogger advocate!

The culprit of this neurological whodunit isn’t fully understood. Several naughty genes have been implicated but their misbehavior remains a mystery and they don’t lurk behind every case. Dystonia can also result from trauma, certain drugs or what seems like thin air. Each case expresses a unique personality that reacts differently to treatment.

As for point of impact, some forms are local (“focal”), focusing on a specific body part. Others, like mine, are “generalized,” spreading the wealth. There’s a bunch of strange names – early-onset torsion dystonia (my Valentine), spasmodic torticollis, spasmodic dysphonia, blepharospasm, oromandibular dystonia – but what did I expect? The medical community hardly earns high marks labeling diseases. I can’t imagine what they call their kids!

23 responses to “Basic Training

  1. I thought the same thing about how it sounds like an eastern Euopean country. Or for humor, it sounds like something from the Flintstones

  2. I have Russian roots but the Slavic connection only goes so far (lol)!

  3. That was great.I am new to the diagnosis but think I have had dystonia my whole life..I can’t walk well anymore, this decline happened suddenly.looking forward to knowing someone with info..thanks, patty

  4. Hello Patty, Welcome to this community. There are many online resources for those affected with dystonia including a number of forums. You can start with the links on this site. Dystonia is a strange disease that takes its own path with each individual. The first important step is diagnosis. Then you need a good movement disorder neurologist you trust because treatment really is a collaboration between doctor and patient. Please feel free to post or email me any questions. Would love to know more about your journey. -Pam-

  5. Hi, I was recently diagnosed with cervical dystonia and ran across your awesome blog… Love the humor! Question:
    I am on my third med, side affects are a blast , how long did it take for you to find the right one to work for you?
    Thank you for your insight and amazing wit!
    ~Donna~

  6. Donna, Hello, nice to meet you. Please remember that I was diagnosed back in 1974, when even less was known about Dystonia. I started Tegretol, which stopped the movements in my neck when I lay, within a year of diagnosis. Artane, the medication that provides the most benefit, began 2 years later. Added Sinemet about 11 years after that. We’ve done some fiddling over the years and I’ve tried meds that haven’t done a thing. Dystonia is a disease where treatment really varies by patient. I’ve been relatively luck with my meds (without them I couldn’t walk) though I can’t stand the side effects. Hope this info helps. Thrilled you’re enjoying my blog. If only Dystonia could be as fun as my writing! -Pamela-

  7. It’s fantastic that you are providing some light relief for dystonia sufferers! Keep it up!🙂

    • Hey Jon, Thank you for your comment. I certainly believe our attitude is critical when it comes to living with Dystonia. I must say it was a pleasure to learn your inspirational story and I’ve added a link to your blog – Musician’s Focal Dystonia – to my sidebar. Your devotion to sharing your journey and the life wisdom you offer is truly special. Best to you. -Pamela-

  8. Thank you for accepting. I write short stories from my childhood, as I coped with the disease. Was tough because I did not the diagnosis, up to 40 years. But I’m writing Czech. At FCB I like Myokloniká Dystonia. Jane
    https://www.facebook.com/profile.php?id=100003955717806
    http://www.rodinaspolu.estranky.cz/clanky/dystonie/

    • Lovely to hear from you here. Those of us with Dystonia are certainly an international crew! I was “fortunate” in that my diagnosis came relative quickly years ago but I know many stand in your shoes. I can only hope for improvements in time to diagnosis so people can focus on treatment options and quality of life rather than trudging from doctor to doctor while living with an unidentified condition. Medical and public awareness go a long way. Sending you my best. -Pamela-

  9. I like your blog! Today I met with a neurologist who believes I have dystonia. I’m not convinced as I do not have muscle twitches or spasms. Deep throbbing pain, unbalanced, falling, dragging my right foot, can’t lift my rt foot up sometimes without pulling on pant leg to raise it up, and I’m very stiff in the mornings and at night. From everything I’ve read these symptoms do not sound like dystonia. Any thoughts?
    Thanks, Judy.

    • Judy, Thank you so much for visiting. Symptoms depend from the type of Dystonia and tend to vary from patient to patient and even over time with the same patient. Unfortunately, there’s no medical test that pinpoints Dystonia. I couldn’t even begin to venture an opinion on a proper diagnosis but I hope you are seeing a neurologist who specializes in Movement Disorder. If you’re not confident with the diagnosis, I suggest you seek another opinion. I’ve heard that the Comprehensive Parkinson Disease and Movement Disorder Clinic located at The Kirklin Clinic at UAB (University of Alabama) is a respected practice and you may want to contact them at (205) 801-8986. Best of luck with everything and please feel free to stay in touch. -Pamela-

  10. Lynn Kostek Jones

    I am blessed to have a daughter with Myoclonus Dystonia. Diagnosed at age 3 1/2, and has been on meds since she was 2.
    Artane, Klonopin and Carbatrol ER is our magic potion. It took 3 years to find the right dose and we have stayed at it for 2 years.
    We went to the Cleveland Clinic when there was a pediatric movement disorder specialist (2011-2013).
    Keep at it, and advocate, advocate, advocate!

    • Lynn, Your daughter is lucky to have you looking after her best interests. The support of my family meant everything to me when I was growing up so I can personally attest to the difference you are making in her life. I will certainly keep advocating and I encourage everyone to do the same in their own way. We stand strongest as a community. Sending you my best. -Pamela-

      • I don’t feel like I’m being supportive sometimes. Her’s is hereditary and ADHD and OCD can follow. So far the ADHD has followed but that’s very easily managed by meds. Bedtime is another story… Wow!
        Are you an only child?

        • Lynn, I have a younger brother. While my dystonia is hereditary (DYT1), I’m the only one in my immediate family to manifest dystonia. I can only imagine how difficult it must be for you as a parent watching your child struggle with dystonia but take heart – you’re a human being and I’m sure you are a wonderful mother. -Pamela-

  11. Maureen Kilcullen

    I enjoy your blog. I love your lightheartedness! This disorder is definitely tricky with its ever changing appearances and severity. Sinemet is my life saver!
    Thank you for helping others in understanding our disorder.
    Maureen

    • Maureen, Thank you for visiting and taking the time to comment. Dystonia certainly is challenging to explain. One of the aims of my blog is to help people gain an understanding of dystonia in human terms without resorting to medical technicalities. As for meds, I take Sinemet as well but my real “life saver” is Artane. Sending you my very best wishes. -Pamela-

  12. Pingback: Speech Therapy: Practice Doesn’t Make Perfect - The Chronically Awesome Foundation

  13. Haha, Thank you for helping me realize why I hate the word “dystonia” so much! I never thought it sounded like a disease. You’re right, it sounds like a country!! Great blog.🙂

    • Thank you so much for visiting my blog and taking the time to comment. Dystonia is certainly a twisted journey! I find that a sense of humor is a wonderful coping tool. Sending you my warmest wishes. -Pam-

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