So quit complaining!
I'm not an escaped rat, but some of my treatment has been along these lines. I'm only aware of one study a doctor was doing where all patients were given a cranberry supplement. I didn't see any problem with this, but no notice was given to patients and families for approval. That can be an issue. (I always asked what a medication was and what it was for. A nurse told me about the cranberry supplement.)
PERMISSION WAS NOT OBTAINED
________________________
I digress. After being in coma, ''I opened my eyes weeks later, but didn't talk. I made no reaction whatsoever. Not talking or reacting was taken to be vegetative (an open eye coma). " http://thoughtfulveg.blogspot.com/2017/04/the-brain-survives-death.html
It may not have been vegetative state at that time, but Locked-In Syndrome. There are things later that look more like Locked-In Syndrome (LIS).
I did have some movement, so it was incomplete. Some movement will throw a lot of people. Most expect no movement at all.Definition
In 1995, the American Congress of Rehabilitation Medicine defines LIS as a syndrome characterized by preserved awareness, relatively intact cognitive functions, and by the ability to communicate while being paralysed and voiceless (American Congress of Rehabilitation Medicine, 1995). This syndrome is defined by five criteria:
http://cirrie.buffalo.edu/encyclopedia/en/article/303/
- Sustained eyes opening and preserved vertical eye movement
- Preserved higher cortical functions
- Aphonia or severe hypophonia
- Quadriplegia or quadriparesis
- Primary mode of communication that uses vertical eye movements or blinking
Classification
[There are] three categories of LIS (Bauer et al., 1979).
http://cirrie.buffalo.edu/encyclopedia/en/article/303/
- Complete or total LIS: Quadriplegia and anarthria. No eye movement.
- Classic LIS: Preserved vertical eye movement and blinking.
- Incomplete LIS: Recovery of some voluntary movements in addition to eye movements.
I remember using the shaking 'T', a sign in American Sign Language (ASL) for toilet, to ask for the bedpan. I had some movement in my left hand. I would finger spell in ASL. (Mind you I never had a class, but I knew it.) Nurses reacted. When I had private insurance I think doctors had suspicions of LIS. I heard a therapist mention my bleed was near my pons. (A pontine bleed is associated with LIS.)
When I switched to government insurance only, attitude changed. Before the change I requested for a diaper. Bed pans were a luxury. I would not get immediate attention. I wasn't in a place in skill to just 'hold it.'
As I got more movement in my left hand, an Occupational Therapist in Southern California, set up computer accessibility for me. Medicaid shuffled me around some more (different hospitals). The hospital I was last at was a long time for me. I was there over a year. I was using my Mother's laptop for browsing and watching movies. A music therapist got me to do my first e-mail.
You can see the laptop computer.
________________________
You can see the problem has been communication, not consciousness. This opens the door for a lot of legal problems. Why am I still unconscious? I'm published now.
A doctor refers to what I endured as the "THE WALLED IN ALIVE DISEASE! (French term for locked-in syndrome)." Locked-In Syndrome is what was earlier suspected!
________________________
You are looking at misdiagnosis. This gets more complicated as there is no malpractice lawsuit. The government won't admit to wrong-doing. 'What are they supposed to do with me now?' is the question. I'm still unconscious according to them. They may investigate. An independent lab or university may investigate. Either way, my consciousness remains to be an issue.
We have to wait. This can be a long time or someone can step up. If current attitude puts my consciousness as low priority, it will continue as such. The government reflects the attitude of it's people in a democratic society. I am vegetative because no one brings up the issue.
UPDATED 11/18/2018, 2/19/2020
No comments:
Post a Comment