The Movement Disorders Examination

My Fabulous Neurologist!

Touch your finger to your nose, then straight out towards the finger puppet. Oops, that was pediatric neurology. Feet on the floor, heel – toe, heel – toe. Now we’re going to draw spirals and write “today is a sunny day” while my arm engages in kinematic calisthenics. Then it’s time to strut my stuff. Occasionally, I even get to star in my own movie without a screen test. Julia Roberts, eat your heart out. Meanwhile, I daydream about shopping with my neurologist at Bloomingdale’s, where she lectures the evil saleslady on how that stunner of a cocktail dress will most definitely not be paired with heels but looks spectacular with my Aerosoles!

Once this mini workout session is concluded, we gab about the state of my movement affairs and the tease of a better tomorrow. Perhaps there’s a fresh-faced research study involving animal models (no, not Miss Piggy prancing down a runway in Versace). While the promise of medical science is encouraging, my tastes run to available and personally impactful therapeutics. Our version of walking on the wild side is to fiddle with my meds by s-l-o-w-l-y changing the dosage in excruciatingly small increments, a regimen that doesn’t sit well with my ever-burgeoning impatience. Really, is one tiny pill developed specifically for Dystonia too much to ask?

20 responses to “The Movement Disorders Examination

  1. Unfortunately, all of us afflicted with this disorder live through the same daily frustrations. Just keep taking one small step at a time and perhaps the scientific community will catch up. As a consummate optimist, I believe there will one day be a cure! Ed Gewirtz

  2. Great job Pam!


    Sent from my iPad

  3. wow. you are a great writer pammie!

  4. I keep waving my magic wand but nothing’s happening yet. I’ll keep waving and in the meantime – if you need a girl’s day out at Bloomies, well, I’m your girl!

  5. Pam, your dreams and also your description are quite good. Continue in such a way.

    Pam, Deine Träume und auch Deine Beschreibung sind schon gut. Mach weiter so.

  6. No, it’s not too much to ask. Perhaps there in nobody that can fulfill the request as with many diseases that have no cure and some that are on par with death.. You have such talents you don’t realize that that is a partial cure in itself. Much love, Judy Klausner

  7. Hello Pam, I don’t speak english very well but I’ll go on your blog. I agree for a small pill. I would be able to swallow 3 pill per day 🙂

  8. Re: “Dystonia Muse’s post 9/12: What 3 pills? My 20 yr. old daughter would love to walk! Doc trying to diagnose from dopa-responsive (but not responding well) dystonia, stiff person’s syndrome, or early-onset parkinsonism. Symptoms started a year ago in foot while walking, progressed to having to quit college, her part-time job and driving by Feb this yr. due to severely “fixed and postured” dystonia in right leg and foot. It has never totally relaxed since then other than while sleeping. Currently taking 6 Sinemet a day and this relieves the excruciating (feeling like foot, ankle or knee is breaking) pain for the most part but is still so uncomfortable daily that she cannot sit for a meal, watch a movie or be out for much more than an hour on a good day. Another thing, considering attending the Mid-Atlantic Dystonia Seminar in MD next month. Has anyone gone to one and are they helpful?

  9. I take Sinemet (3/day), Artane (highest dose I think 52.5 mg/day), and Zonegran (replaced Tegretol when my blood tests took a dive). Without a doubt, Artane is the most effective of the trio. I “tolerate” a high dosage because I started when I was young. Don’t care for the side effects but life is a trade-off (I’m presently trying to reduce my levels). But as you may know, every Dystonia patient responds differently to treatment, even with the same type of Dystonia (mine is early onset generalized). A few meds that help others didn’t do a thing for me. As for the DMRF Mid-Atlantic Symposium in October, I may go myself. I’ve attended at least one of their symposia (in Chicago). For the past few years, I’ve been a regular at the Bachmann-Strauss Foundation annual patient symposium in New York City, where I’m located. All these events are quite helpful for information gathering (including available treatments) and a wonderful opportunity to chat with people affected by Dystonia – in that regard, you never know what you’ll learn. The Bachmann-Strauss events include breakout sessions with practical therapies intended to improve daily functioning. However, there is no substitute for diagnosis and care by a knowledgeable movement disorder neurologist.

  10. Great blog page. I’ve had Focal Dystonia since 1993. The only thing that helps me is Botox and physical therapy. It’s a struggle everyday, I don’t take anything for granted. I have come to appreciate the small strides that I’m making

  11. Valerie, we climb mountains with our “small strides.” Our achievements may not be visible to everyone, but we well know all that we overcome: the day to day minutia, the “victories” that seem ordinary to others, the sense of accomplishment that results from summoning a positive attitude. Just making it through a difficult day can be a leap ahead.

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