“May the Force be with you” sums things up pretty well except for one slight detail: this ever-present “Force” usually goes against me. I lead the Jedi Knights in an epic battle waged for control of my Universe, the Dystonic Sith summoning the “dark side” to seize power, gaining strength by preying upon my negative emotions.

Ironic inconsistency is expected. When I visit my neurologist, my brain somehow instructs my muscles to behave. I pace the hallways with an entourage of physicians, silently willing my muscles to act up and take responsibility for their persistent shenanigans. On dates – talk about nerves – I tip to the other end of the spectrum. Maybe next time, I should invite my neurologist to join us for drinks. Murphy’s Law meet my Dystonia!

The unpredictable nature of Dystonia is a constant thorn in my side. Stairs pose an eternal question mark. Walking confronts me with a never-ending surprise party. One minute I’m strolling prettily, nary a care. Then I remember my legs – shazam, we have movement. Occasionally, my foot abruptly decides to make an illegal U-turn, leaving me stranded on a street corner waiting for my yin to find its yang. If only I could send my limbs to Driver’s Ed to reduce the Dystonia points on my license!

14 responses to “Walking

  1. This is awesome! Thanks for sharing this because I think it is so important for people with dystonia, and others to understand how tricky this can be!! I was sure I would never walk without my crazy stiff leg, and out turned other leg again, then one day, I walked as if that never happened….then two days later, I could barely walk at all, then I could with a limp, then I walked okay, then I was totally contorted, twisted, walking with my neck bent, my torso twisted, my legs sticking out and knees not bending!!! What? Yes, this is so important to understand that it comes and goes, ebbs and waves…the more rest I get sometimes the better and, sometimes not!! There is no rhyme or reason, and when we do walk somewhat normal sometimes, no, we have not been faking, and no, unfortunately we are not better now….thank you for your blog, and letting us into your life with dystonia.

  2. Thank YOU for validating my experience. Each of us lives in our own Dystonia world but we do share commonalities. One of the most difficult aspects is that we never know what the day holds. I had an evening planned with my god-daughter. My Dystonia behaved fairly well all day long, then disintegrated come nightfall. Couldn’t even walk to the subway, I “splurged” on taxis everywhere. In the end, we trudge forward, what else can we do?

  3. Thank you for the clever way you write things – you make me smile as I’m nodding my head reading! As for being normal when you are at the doctor – that is the worst! It happens all the time! Thank you and keep writing!

  4. My pet peeve is the Dystonia rating scale assessing our condition the day of the office visit. I try to explain how my walking has been terrible all week long but they only want to document my status of the moment, which I find utterly meaningless. Dystonia is one fickle female!

  5. making a video and taking it to the doctor worked a treat for me. I’ve just managed a rotacuff tear and another shoulder injury that people like footballers, netballers, wrestlers get. Hilarious really (that thought) but very painful. It has happened as a result of repeatedly dislocating a part of my shoulder that I have been getting physio for on and off for years. That arm is my twitchiest and I knew it “went” at night but I didn’t really realise it was as violent as that. I am trying to see me, this little old overweight person in some specialists waiting room with these big time sports people!

  6. As far as I’m concerned, anyone who wrestles with movement disorder is a first class athlete! I’ve never heard of Dystonia causing a “sports injury,” but there’s a first time for everything! Good luck with your shoulder.

  7. Pam, you are such an amazing writer. Even in talking about such a painful subject you make me smile. Your imagery and connections are amazing. zif only writing it could change things!!!!! XO Roxene


  8. Great posting, Pam! I love the Star Wars references. You have a wonderful ability to find the wry humor and irony in difficult situations.

  9. All I need is the coif with “bun rolls” over my ears and I’m Princess Leia!

  10. I LOVE the star wars reference. Your blog never fails to but a smile on my face!xx

  11. Sometimes, laughter is the best medicine!

  12. I loved this post and really resonated with it despite the differences in our conditions. Just like you one of the hardest aspects of the condition is the unpredictability of it; not knowing when my weak legs are going to give way causing me to fall (or crash!) to the floor!!

  13. Rhiann, If you’re connecting with my post then I’m getting things right because I seek to appeal to the universality of the human experience, those of us who have disorders and those who don’t. Next time you crash to the floor, think of me temporarily stranded on a street corner! I must tell you, the different forms of dystonia are like different diseases so I’m excited when people with dystonia relate to my articles (lol)! -Pamela-

  14. Pingback: Self Control Over The Control Freak | AbledisAbledis

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