Thursday, September 29, 2016

Therapy-Round One. My Dystonia Animal Analogy

ex·tinct
adjective

  • (of a species, family, or other larger group) having no living members.
  • "trilobites and dinosaurs are extinct"

  • synonyms: vanished, lost, died out, no longer existing, no longer extant, wiped out, destroyed, gone, "an extinct species"


So I started "talk" therapy last week because I have finally reached a point where I need to stop fighting and being angry with dystonia. I need to learn live with it instead of spending every day trying to get rid of it. I need to learn coping skills and how to get through the really bad days without dark thoughts clouding my mind. I need a professional so that I can unburden my friends and family who so desperately want to help me but don't know how or what to do.

I was talking with my therapist today and she asked me if I could describe dystonia as if it were an animal. I told her that I have described how dystonia feels in my blog and to friends as my muscles have turned into serpents coiling under my skin. That was not the answer she was looking for. She did not want how it physically feels, but mentally. I asked her to elaborate. She explained that she sees dystonia as a giant grizzly bear in the room snarling and growling at me and constantly on the attack.

That made me think for a minute...

Then I had a clear picture of how it felt. To me, my dystonia is a giant woolly mammoth that will not budge. It just stands there not noticing me trying with all my might to push it away. No matter how hard I try to punch, kick, scream and violently get rid of the mammoth it ignores me and could care less. It is silent and so huge, SO BIG, that it takes up every ounce of space in my life and never leaves me alone. It is overwhelming. It is extinct and and that is exactly how I feel. Extinct. 

Saturday, September 17, 2016

Another perfect song for Dystonia....OK GO


OK Go - Upside Down & Inside Out


Lyrics:

Upside down and inside out 
And you can feel it 
Upside down and inside out 

And you can feel it, feel it 

Don't know where your eyes are
But they're not doing what you said
Don't know where your mind is baby
But you're better off without it

Inside down and upside out
And you can feel it
Don't stop, can't stop
It's like an airplane going down

I wish I had said the things
You thought that I had said
Gravity's just a habit
That you're pretty sure you can break

So when you met the new you
Were you scared, were you cold, were you kind?
Yeah when you met the new you
Did someone die inside?

Don't stop, can't stop
It's like a freight train
Don't stop, can't stop
It's like an airplane going down

Don't know where your eyes are
But they're not doing what you said
Don't know where your mind is baby
But you're better off without it

Looks like it's time to decide
Are you here, are you now, is this it?
All of those selves that you tried
Wasn't one of them good enough?

'Cause you're upside down and inside out
And you can feel it
Inside down and upside out
And you can feel it, feel it

Don't stop, can't stop
It's like a freight train
Don't stop, can't stop
Until you feel it going down

I wish I had said the things
You thought that I had said
Gravity's just a habit
That you're pretty sure you can break

Upside down and inside out
And you can feel it
Don't stop, can't stop
Until you feel it going down

Upside down and inside out
And you can feel it
Don't stop, can't stop
Until you feel it going down

Dr Kukurin: Theory and application of the Tone Pacer APP


This video suggests the science behind the Tone Pacer APP. It explains the theory of application for vestibular rehab. The Tone Pacer APP can be downloaded from the following websites.

https://itunes.apple.com/us/app/tone-...

Saturday, September 10, 2016

Reflections and Guidance on the Cultivation of Mindfulness Jon Kabat Zinn, PhD



These videos by Jon Kabat Zinn are so enlightening and helpful. 




I have been trying to deal with my pain by practicing mindfulness. It is so easy to let the pain swallow you up and make you blind to what is happening in the moment. My emotions can sometimes lead me into such a state of anxiety, panic and depression so deep that I need a way to just let it all go. 

I have a long way to go but these are worth sharing and I hope you find peace as well. 


Jon Kabat-Zinn is Professor of Medicine Emeritus and creator of the Stress Reduction Clinic and the Center for Mindfulness in Medicine, Health Care, and Society at the University of Massachusetts Medical School.

Reflections and Guidance on the Cultivation of Mindfulness Jon Kabat Zinn, PhD



These videos by Jon Kabat Zinn are so enlightening and helpful. 




I have been trying to deal with my pain by practicing mindfulness. It is so easy to let the pain swallow you up and make you blind to what is happening in the moment. My emotions can sometimes lead me into such a state of anxiety, panic and depression so deep that I need a way to just let it all go. 

I have a long way to go but these are worth sharing and I hope you find peace as well. 


Jon Kabat-Zinn is Professor of Medicine Emeritus and creator of the Stress Reduction Clinic and the Center for Mindfulness in Medicine, Health Care, and Society at the University of Massachusetts Medical School.

Monday, September 5, 2016

Update...

So it's been a while since I posted an update on how I am feeling and my progress.

Here we go...


Since starting my treatment with Dr. Kukurin the last week of June I have made tremendous progress as far as my head's range of motion. I have had a few days where the pain on a scale of one to ten was around a 7 but never below that number. Most days the pain averages about an 8. My dystonia is severe and I know that it will take a lot of work and physical and mental strength to get through this. I am hopeful that this treatment will work and keep progressing, but I have many days where I doubt that it will work at all. It is hard to feel hope when you are in so much pain. Thankfully Dr. K. is good about taking videos and tracking my progress. On days when I feel really awful I watch the videos and they give me hope. Things are changing and it is going to take time. I just hate not knowing how long....


I do many at-home therapies including targeting with lasers to activate my left brain and decoupling exercises. He also incorporated the "fencing reflex" into my exercises and that has given me the most success (in my opinion) as far as turning my head to the left again.


I keep a daily journal of my exercises, how I am feeling and the pain scales. Since we are now creating more movement, I am now using muscles that have been stuck for almost two years and it is excruciating. I take Baclofen 2-3 times a day and one klonopin at night. Sometimes I take 600 mg ibuprofen. I tried making a turmeric paste and other natural pain relievers. Right now not much is helping except my cervical ice pack. I am icing my neck all day long.

Sleep has been extremely difficult due to the tremors and pain. I feel worse when I lay down. I occasionally take 1/2 ambien but it is a fickle drug for me. Some nights it works great and others I am up 2-3 times. My New Neurologist had me try carbidoba levodopa and all that did was make me feel nauseated and disoriented. I gave it 5 weeks. She also gave me trazodone for sleep and it does not work for me. It makes me feel drugged and totally f'd-up but not sleepy. I am considering trying Botox one more time. I am so desperate for relief.

 I recently contacted my insurance company to seek mental health assistance to help me cope with my diagnosis and find ways to release some of my anger and emotional distress. It is a vicious cycle....I feel the pain, I tense up.  I tense up and get more pain. Then I start to freak out and drive everyone nuts-mostly myself.  This disease consumes you.  On most days it swallows you up and makes you blind with pain. I have called a suicide hotline twice to help me get through the days where the pain was so bad I wanted it to end. I do NOT want to die-I just want the pain to end. Thank goodness for my little boy-he keeps me fighting. I am sure my family and friends need a break from this saga as well, so seeking a professional is long overdue. 


There is so much more to share but I am exhausted and sitting hurts. Typing hurts. My left arm is tingling and my left hand is going numb. It is time to stop. For now...