Spasmodic Torticollis, otherwise known as cervical dystonia, causes the most extreme pain I’ve ever been in, (luckily I have a high pain tolerance that is probably due to the condition.) The name means “twisted neck,” and that’s exactly what it is. For me it means I grind my neck due to spasming muscles so hard and so often that the neurologist is injecting Botox into the offending muscles to paralyze them and, while this certainly helps, the improvement is more modest than I’d like.
For me this brings up questions of free will. I’ve had tics my whole life. Tics are not voluntary, but nor or they entirely out of my control either. The muscles build tension that can only be relieved by doing the tic. So if I’m holding a cup of coffee I can hold in an arm jerk long enough to put it down before acting out said jerk. These spams, a relatively new symptom for me, are entirely involuntary. They just happen. I feel an electric pulse and the muscles twitch or pulsate or do whatever the hell they’re gonna do. I have these spams in my thighs and my feet, my arms and my hands, but the neck ones are the painful ones.
I’m not sure where tremors fit into this, but the level of voluntary is in between a tic and a spasm. I can stop myself from tremoring by resting my hands, but if I hold my hands up they’re gonna tremor at least a little bit and I can’t stop it.
Just some thoughts on my increasing loss of free will over my own movements.
Sam Ashkenas 