13185761_sIn the movement disorder world, “fiddling” has nothing to do with a musical instrument. Like the baby bear sampling bowls of porridge, I’m forever fine-tuning my meds in an overarching effort to get things “just right.” My “fiddling” is motivated by a precarious balancing act featuring a myriad of distasteful side effects encroaching upon my quality of life.

Patients be warned: “fiddling” is for the bold and the brave, every adjustment laden with a risk-bearing proposition. In my present alternative reality, I’m battling the lingering damage inflicted by a downswing in my main med even though I’ve climbed my way back to my prior dose. Voila, the sole result presented by my most recent game of risk is the companionship of my walker. Apparently, elimination of my parade of side effects requires elimination of my anticholinergic, a venture to the Deep South I’ve yet to undertake.

But there’s a moral to this story as I seek to live life without regrets, well understanding that our meaning decisions unavoidably lack the luxury of hindsight.

14 responses to “Fiddling

  1. Franz Krämer

    As usual, a knowledge described very well.

  2. Hi Pam, I look forward to reading your thoughts . Although I didn’t feel great this fall season I have no regrets about the things are. Looking around the world I see how much worse things could be. Keep up the good work.

  3. Victoria Alexandra Rodak

    Well written, as always…!

  4. Edward Gewirtz

    Hey Pam, I too am a “fiddler.” With dystonia you have to be. A little more of this, a little less of that and then wait and see. Perhaps, in time, our scientific community will all come up with the right recipe. Love the way you keep it real.

    • Hey Ed, Always lovely to hear from you my friend. With all our fiddling, seems we could start a string quartet (lol)! I’m game if you are. Sending you my very best. xxx -Pam-

  5. Very well crafted writing Dystonia Muse. Fiddling – medicinal and physical – is endemic to dystonia. I’m based in London and have myoclonic dystonia and would love to start a blog. I think it’s not hard to set up!


    • Andrew, Thank you for taking the time to comment. Setting up a blog is fairly easy. If I can do it anyone can – I was hardly Internet savvy when I started blogging. I use the platform, which does most of the work for you and I’m happy to answer any questions you might have. This has been such a worthwhile journey and I’ve learned so much about myself in the process. Would love to learn about your site if you set up a blog. Sending you my very best. -Pamela-

  6. Hi Pam, great blog as usual. Going through a tough time right now that is aggravating my already aggravated Dystonia. Or, maybe it’s the other way around. Not sure, lol. You know you’re going through madness if you long for the days when you JUST had Dystonia and want to get back to that “normal” life. Doing what I can to come out of my ‘dark place’. Please keep up the great blogs. -Marsha

    • Marsha, Thank you for taking the time to comment. I certainly can relate to your frustrations and don’t we all know how stress negatively impacts Dystonia. I hope that better times are in store for you. Sending you my very best. -Pam-

  7. In the past couple months, I wrote 2 posts on the topic of side effects, which is a really important topic to me. There’s a Part 1 and Part 2. Here’s the link to Part 1:
    It’s an ongoing journey for us. That’s for sure. Hang in there!

    • Michelle, Thank you for sharing your link. Certainly, the side effects from my medications can be as annoying as my dystonia itself. Life with dystonia is a tradeoff, as you well know. Best to you. -Pam-

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