Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

Benedict: The Dystonia alien

Here is a brief introduction to my dystonia alien, Benedict. Benedict is in control of my basal ganglia, he decides what part of my body shall spasm, when it shall spasm, and which position the spasm shall take on.  Certain things irritate Benedict greatly, such as trying to pick up a cup with my right hand or if I try to walk normally with my right foot/leg. I therefore take immense care to avoid these triggers.

For those of you who are having trouble imagining what Benedict looks like, take a look at my post entitled The Claw. Attached to that post is an image of one of the aliens from Toy story. This is what I imagine is in control of my body.

  • The Claw (



Comments on: "Benedict: The Dystonia alien" (6)

  1. My son is also 20, he was origianally diagnosed with sydenhams chorea, then dystonia, then myoclonic movement disorder, now nothing ! Due to the constant changes (the condition just does what it feels like !) which is what made me think about Benedict lol it has been 7 years now since he became ill, he has had lots of different drugs, botox even a dbs surgically implanted in his brain, he had it removed as it caused its own problems….at the moment (touch wood quickly) he is ok’ish, he had an awful relapse in December, all the hospital could offer were sedatives….He is the most amazing young man and I am so proud of how he deals with his condition, he had to drop out of Uni at xmas which is so sad, he worked hard to get there. Anyway sorry for my ramblings lol I am finding your blog interesting and inspiring. Take care x

    • Tess, I am so sorry to hear about your son! I hope he remains ok’ish and does not have another relapse!

      I have no idea how helpful this idea is, however if your son likes the idea I am more than happy to send him an email, so that he can speak to someone his own age with very similar issues. Would that be of any help?

      • mark jacobsen said:

        I an 61 and have been battling CD for three years now. It seems my body is immune to the effects of all Botox variants and even Phenol. But compared to you having to put up with what you do at such a young age, I will stop complaining so much.

  2. I call my mine the Linda Blair dance moves

  3. tony fulford said:

    I ave body movement disorder but doctors doent now what to do with me

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