Saturday, January 28, 2012

Dystonic Ramblings.....Reality of DBS

I can't stop looking at this picture.  While on "Pinterest" I followed someone with a Dystonia pin page, she had this pinned and I am in awe.  What was the artist's intention, inspiration?  Everyone interprets art in their own way.  Why does this resonate so loudly with me I am actually experiencing tinnitus?  I leave it only to return and study it.......why?  When I close my eyes, the black metal contraption drilled into her skull and piercing somberness of the woman's eyes, remain etched in my memory.  The dimly lit sky in the foreground gives way to a partial cloudiness while her dystonic reflection floats in nothingness....

It's weird how God prepares us for things in life.  Sending people in our lives to teach us strength and dignity a midst pain and turmoil or maybe he sends us to a picture, a passage.  I have been sitting, clearing my mind and body of chaos and static so I can hear clearly.  I have laid my petition before the Lord and thanked him in advance.   Is this the answer I have been waiting for?   We are to be still and know who our God is and wait......right?!  But doesn't God require us be proactive, make some decisions on our own...  How do we know without a shadow of a doubt that the decision we make is God's will?  Will the answer come in a dream.....that would make things so much easier.  (sigh)    As you can see I have a major decision to make in the near future.  

My Dystonia has progressed rather rapidly. I have been hospitalized over 20 different times within a year.  My neuro (renowned movement specialist)  says if he were me he'd go for Deep Brain Stimulation.  According to him, my life would spiral downward into a debilitating existence without it.   So I have decided to take this time (about a month)  to be still, reflect, pray, listen, prepare.  Praise the "Living God" that He is the same God that spoke directly to Moses and can speak directly to me.........sshhhhhh, now I must listen.


  1. Richard and I talked about the Baclofen pump. He used to work in the spinal cord unit and a lot of them had pumps for their contractions and pain. He said it's not a new procedure and seemed to work well. I also knew patient who had a pump for chronic pain. the pump is less invasive than the DBS, not as extreme and probably easier to reverse.

    Hope this helps.

    Your Titi Provi

  2. Thanks Titi! I am going to look into it further and figure out what will be best. Love you guys!!


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