Dystonia Ideas

i've been waging this battle for over a year now and, though i'm starting to get used to it, it still gives me anxiety and some depression. i've been feeling this little twist in my left foot that i can not tell if it's some kind of involuntary movement or if it's just in my head.

i'm still hopeful that there is something that can be done to decrease the effects or retrain myself out of the dystonia effects. i'm currently seeing a Feldenkrais practitioner and going to physical therapy at OHSU. the first visit at OHSU was revelatory. a woman who contracts with the hospital, Fay, was able to see me and shed a lot of light on my condition. i really wish i had an authority like her to ask questions to any time i liked. she personally knows the woman -- whose name i forget right now -- who has supposedly successfully given monkeys dystonia and then cured them of it!

a few thoughts first:

• the fact that this is in my leg makes it harder for me to isolate and only work on it when desired. all of the training folks say to do my exercises until i feel the D kick in. and that makes much sense. however, i'm not really able to avoid walking. this makes me consider looking into some kind of orthotic that could help me walk without the dystonia kicking in. i remember the time i went snowboarding and the angle and stiffness of the boots prevented my legs from moving in such a way that would cause the D to fire. my neurologist recommended against this, but i forget exactly why... it might be a negative reinforcement? must look further into that. maybe in the case of something like a snowboot it would be ok since it prevents it from kicking in, not just holds it in place when it spazes...
  

• i brought up the use of mirrors in treating certain neurological conditions to the PT crew on my first visit and they seemed to like the idea. however, there's not an expert so we're sort of going at it blind. so far i've been doing exercises where i move my left (good) foot in certain ways while watching in the mirror. then i try to do both feet at the same time (while continuing to look in the mirror). then i move just the right foot and watch it while i do. i'm not convinced this is the best course to begin. i may start by solely doing the exercises with my right foot and watching the mirror and trying to think about my left foot doing them. i should note that i read about the mirror thing in the New Yorker recently and that i have a friend who uses a mirror to help him with the loss of a limb. may need to do some more research here.

• stimulation! this is one of the things that gave me more insight. while i was doing my exercises, if Fay would see my foot start to be unresponsive or involuntarily act, she would apply stimulation around the area and that would help tremendously. she said this is because in dystonia they think the brain is not getting enough external stimulation and this may be a help in treatment. it's very helpful!! this is a biggie. so when i'm exercising with my PT, they're using this really powerful massager thing to stimulate my foot when i need it. however, i need a solution for when practicing alone. i wonder if i could find a remote-controlled or wired massage "bar" or some other thing that i could tie to my foot... this has been something that is really on the front of my mind but hard to get.

• another part of the stimulation is tactile stuff. like standing on different surfaces and just feeling the stimuli. and then doing the balance on heels on different surfaces.
  

• also, wrapping the foot in something coarse, such as gauze or other may help. i was envisioning getting something like a rubber cloth covered with spines around the area. (something that moves a lot). or sand paper!

• exercises that Jeff and Jenny and Fay via UCSF doctor gave me. mostly the mirror and lifting foot and simulating diff. actions and doing stepping (tai chi style).

also, on my first visit to OHSU PT training they invited a vendor of orthotics. he brought this really interesting tool called a Walkabout or Walk-along. something like that. it consisted of two electrodes that were glued to your leg just below the knee on the outside. these electrodes connect to a little computer and this is strapped to your leg with a velcro cuff. the computer can be programmed via bluetooth from a laptop. there's also a heel component that fits in your shoe. you can analyze your gait and zone in on the configurations of the device. the electrodes connect to nerves in your leg that affect your foot. if you find the right ones and give them stimulation, your foot pops up! we sort of got it working that first day, but i went back for a 2nd shot. that time around we found an incredibly strong electrical connection when i was sitting, but then when i stood to walk the connection was broken. this was frustrating as hell because it showed so much progress. i would consider getting electrodes permanently connected to my nerves for this! anyway, the idea here being that i would walk with this thing for a while while i re-trained my brain.


then there's the Feldenkrais lessons i'm having. i'm doing private sessions but considering switching to a class style to ease the cost yet to maintain the my mind/body awareness in a general way. i think the Feldenkrais practice is extremely valuable in that. and my teacher is great. doing strange movements and then realizing how they sort of fit together into a whole. i should probably write more on this to synthesize it for myself, but for brevity's sake in this posting i'll just jot down a few of the main exercises points i'm hitting write now:

balance in walking. we've been sort of working on this slow, small tai chi-esque stepping, breaking down the parts of taking a step. balance. finding solid footing. swinging the foot through. be aware of angle. you can also simply practice this by standing in place and raising one leg after the other. notice that your foot should not stay perpendicular to the floor, but toes drop. then plant it. then bring up the other.

• i do this funny one where i lie on my back with my feet on the wall and i push off rolling my pelvis and push on different parts of the foot. was going to work up to the point where i could lift my stuck foot, but stopped. this reminds me of how i've noticed connections between physical therapy, Feldenkrais, and Tai Chi. especially the pelvis and the opening of it.

• a funny thing my feldy teacher brought up last night was the importance of taking good care of your feet. she recommends me massaging my feet and toes with generous moisturizer for a while. noticing that my toes were curled and this might help. get bigger shoes. the mention of Reflexology came up, another "teaching" that is pretty new agey but i might look into for the heck of it.

• positive imagery. i think this one could be a bigger help to me and should try it more. to that end i have asked my feldy teach to focus on this in our next lesson. when reading about dystonia this topic often comes up. there's plenty of evidence that thinking about something will fire the same parts of your brain that doing something will. so this may be helpful (maybe similar to the mirror work) in re-training the brain.

something else i've been considering pursuing is more meditative time. i'm not sure what form this would take but i think i might benefit from trying to quiet my mind by doing some form of meditation. maybe sitting zazen, or just doing breathing exercises.


i think my biggest challenge is my self. my lack of discipline. i need to systematically do my exercises and be aware of my movement. it's not a fast process, but the more i focus on it the better the outcomes will be.


i will continue with thoughts on this. it would be wonderful if people would like to respond with tips/comments.