Sunday, February 19, 2012

Tick tock tick...

This last weekend my friend and I went around Spokane on a mission; to capture my tics out in public.  This was to better help the people who will be involved in training my dog understand what my tics are like, the challenges I face out in public, and to be able to imitate my tics.  The trainer will be imitating my tics in order to get my dog accustomed to living with a Touretter, as well as training the dog to respond to my tics as a non-verbal command to perform a task.  This will allow the dog to react to my tics - almost like alerting - and perform a task that will help mitigate my tics without me having to give a verbal command; which can be hard or impossible to do when I'm ticcing.

The first two clips are from Costco, somewhere I try not to go because of the amount of people there.  Big stores (like Costco or Winco) have brighter, harsher lights and are noisier.  They are much larger so it takes longer for me to find what I need and exit a store.  There is a lot more for me to pay attention to in a large store like that, so I tend to tic more.

This is an example of my "club-foot" tic; my right foot turns perpendicular to my body and becomes temporarily useless.  When this happens I can still be mobile; I either pick up the useless foot and put it down in front of me and then walk normally with my other foot and use the useless one more like a crutch or I can use my left leg to walk and drag the right leg behind.  In the very end of the clip my toes curl under and I am limping on my feet.  It is hard to see, but what happens is my toes curl under my feet and I end up walking the joints of my toes instead of walking on flat feet.  It makes me walk very stilted and it looks like I have a bad limp.

This video shows the club-foot walking from another angle, as well as toe-walking in the beginning of the clip.  The toe walking is more of a nuisance than something that endangers me, as long as I'm in a safe space and have something to steady myself with.  This is something that happens a lot throughout the day when I'm walking and standing still.  Standing still is more dangerous because I tend to pitch forward as soon as I go up on my toes because I am unbalanced so quickly.

In Walmart - one of the worst places for a person with a disability to go into - we got video of the dystonic arm tic, the simple hand tic, and head banging (though not at a dangerous level, I was working hard to control it).  The arm stuff isn't anything more than a nuisance for me, however, those are the tics that can get me in trouble out in public.  They come on all of a sudden with very little warning, and if I'm in a crowded space I can hit somebody before I can get in a safe spot.  Due to the changing nature of my tics, my dog will be trained to work on both sides of my body.  One of the things I spoke with the director of Heeling Allies about was training the dog to move to my right side when those tics start.  It wouldn't stop me from hitting somebody if the tic was really sudden, but that task would keep me safe after the tic and stop me from having to worry about a rogue arm causing anymore damage.  The head banging ranges in severity, sometimes it only looks like a violent shudder where my whole upper body shakes, and sometimes I give myself whiplash and tic so hard I end up on the floor.  These attacks can leave me so dizzy it takes a long time to be able to get up off the floor or to walk safely without support.  They can also leave my brain so shaken up I experience headaches and migraines.  When this happens by myself it can be anywhere from just plain annoying to dangerous.

This last clip is to demonstrate how violent the head banging can be (and because I "invited" this tic in for the purposes of videotaping, it still isn't as bad as it could be).  Turn up the volume because I also induced some "squeaks"; again, not at the same volume as if they were completely involuntary.  But it gives an idea.  (These tics I refused to try and initiate in public because the headbanging gets dangerous very fast and the squeaking draws really unnecessary and unwanted attention.)

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