Saturday, November 2, 2013

My First Blog


I just got my blogs from MySpace. MySpace has changed ownership and is a music/entertainment site only. I started blogging over there. I moved to blogger.com looking for stability. 

When MySpace changed ownership, accounts were stopped. Blogs weren't exactly lost. A request for records had to be sent. I've waited a while.


Subject It's Possible
DateCreated 9/29/2006 11:43:00 AM
PostedDate 9/29/2006 11:38:00 AM
Body

Recovery from the 'locked-in' syndrome

E. A. McCusker, R. A. Rudick, G. W. Honch and R. C. Griggs

Four patients made substantial recovery following the locked-in syndrome of vascular origin. Clinical and radiologic features supported the presence of ventral pontine infarction secondary to basilar artery occlusion. Quadriplegia and mutism persisted for one to 12 weeks before recovery of motor function began. Improvement continued over several years. All patients regained functional though dysarthric speech. Three of the four patients are ambulatory, one without assistance. As a few patients make a notable recovery from the locked-in syndrome resulting from ventral pontine infarction, aggressive supportive therapy should be considered in the early months of the syndrome.
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You can see I did this years ago. It's also very short. I only did the title. The rest is an article of a study. I found the original. It's on PubMed. http://www.ncbi.nlm.nih.gov/pubmed/7065931
 
Locked-In Syndrome was a big deal. I recovered and I knew many hadn't.

http://www.ninds.nih.gov/disorders/lockedinsyndrome/lockedinsyndrome.htm
   
I had to blink for yes and no. This was a means of communication, warranting an MCS diagnosis, but it was too late. I had already been given PVS (this was the first error).
    

My mother learned I had to be presented with a written form of a letter to blink yes or no.  The letter had to be large due to poor vision. This sounds like what he describes in the video above, Central Auditory Agnosia. He might be one of the few in this country to recognize it. The blinking for a letter is Locked-In Syndrome.

Since I was already PVS, the Locked-In Syndrome was never recognized.

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If you went to my MySpace page, I had the following video at one time,



 



That video is about Jean Bauby. He was a journalist, author, and editor of Elle magazine. He suffered a stroke and went on to write a book by blinking one eye yes or no for each letter. A movie was made. It had the same name, The Diving Bell and the Butterfly. He had Locked-In Syndrome. My experience has been close to his for a long time. It's not now.
  
I chose this video because it shows Bauby getting Trache Care for the tube in his neck. That tube is the reason I have a hole in my neck. The hole is getting smaller, but not very fast.

In the top picture I was still on the ventilator at night. The bottom picture shows the hole left by the tube although surgery closed the airway 7 years earlier. The tube itself was even removed a year before that. The hole never closed, and I could breathe through a hole in my neck.


2003
2013

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Now that I think about it, I've really increased in skill since then. I'm a head and an arm and I talk now. Since writing that first blog, I now push to a stand. I can type a lot faster, and my blogs are a lot longer.



My new MySpace profile



I use MySpace for music. I've started a few playlists in MIXES.


UPDATED 5/21/2017

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