Rewiring is a thing now. Medicine, don't hide it!
"I keep saying my case is weird. My body is still in a coma n my head is awake." I put this on a social network when I became Medicaid Waiver. Medicaid Waiver is a program set aside for the very ill. It is designed to keep a person in the community and out of the hospital.
People don't think of me as being ill. I don't have a head cold. I have a g-tube, or it is also called a feeding tube. The device isn't so scary to the community anymore, but it is serious. It is pretty much an IV that delivers its contents to the stomach and not the bloodstream.
"I would say that, technically, at this time you are a traumatic brain injury (TBI) with residual quadriparesis," Trudy Martinez.
I've said it before. I've quoted this.
Growth does not happen overnight. ( https://thoughtfulveg.blogspot.com/2018/08/neurogenesis-is-proces
s.html )
RESIDUAL QUADRIPARESIS- I like that word, "residual." It goes with rewiring and explains slow gradual growth.
The concept of rewiring, neuroplasticity, is so common now. I don't think it is accepted yet.
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" Angela Ronson your body is not in a coma. Neither is your brain," Trudy Martinez. She is an Occupational Therapist.
"I would say that, technically, at this time you are a traumatic brain injury (TBI) with residual quadriparesis," Trudy Martinez.
I've been hearing for years that a person continues to make progress after a brain injury, but no one has outright said that my diagnosis was "residual." THAT fits. I was thinking about making up the word "de-paralyzing," because my body is becoming less paralyzed.
"Angela Ronson - I was told in rehab that recovery shouldn't be looked upon as a final destination, as recovery is ongoing and lifelong. It is a journey, and that medicine, as a whole, tends to look at everything as a finality (here anyway). The words 'cure' and 'heal' are never used in that facility because they do not mean the same thing in a brain injury standpoint; so I don't use them," Lisa Rice
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It comes down to 'why so long?' You will find that there were small progressive steps along the way. I believe the progression coincides with the growth of small nodules discovered years earlier.
I've said it before. I've quoted this.
"Their quantification of white matter reorganization shows long-distance rewiring in posterior medial cortices, possibly reflecting axonal sprouting or neurite outgrowth, maybe even related to neurogenesis " happens to be Steven Laureys describing a man who was MCS, but started talking nearly 20 years later. What he is saying is that tiny nerve fibers grew and rewired. This is most likely going on with me. http://thoughtfulveg.blogspot.com/2017/08/not-fast-enough.html
Growth does not happen overnight. ( https://thoughtfulveg.blogspot.com/2018/08/neurogenesis-is-proces
s.html )
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The concept of rewiring, neuroplasticity, is so common now. I don't think it is accepted yet.
Hi Angela
ReplyDeleteSorry if this comment is off-topic for the present post. It is on-topic for your blog as a whole though.
I discovered your blog today because you commented on an article that menationed Scott Routley. I am now following you.
I thought you might be interested in a certain piece on my blog:
Scott’s law: Talk to me, don’t just starve me to death!
https://johnallmanuk.wordpress.com/2018/08/03/scotts-law-talk-to-me-dont-just-starve-me-to-death/
I would be absolutely delighted if you posted a comment on my blog, with a link to yours.
Best wishes.
Merry Christmas, Angela!
ReplyDeleteand a Happy New Year to you.
DeleteHi Angela,
ReplyDeleteI just discovered your blog last night after reading an article that was linked in Drudge ( not finding it now). I'm curious if you are familiar with Dr. Paul Burns and the lifeguardianfoundation.org.Dr. Burns believes that " brain death is fake death" and that it is currently fueling the 35 billion dollar transplantation industry. The following is a link to a movie on the topic put out by the Life Issues Institute. Let me know if the link doesn't work. God bless you, Angela; I will be praying for you.
https://www.facinglife.tv/episode/surprising-realities-of-brain-death-and-organ-donation-part-1/
Dear Unknown, what is your name? Why is this anonymous? What are u hiding? I rly was in a coma. One friend told me that a nurse braided my hair n that I looked like I was sleeping. I was not faking.
DeleteI'm not computer savvy and don't follow blogs. My name is Katie and I live in Portland, Oregon. I don't do social media. I didn't mean to be anonymous or scary. The reason I was interested in you is because I am a pro-life person who is aware of and concerned about euthanasia issued and poor care of people who have brain injury or other health situations that cause them to be vulnerable. Due to some research I've done I'm aware of how the " brain death" diagnosis is used to obtain organs for transplantations. The video I sent the link to you has an interview of a woman who survived the brain death diagnosis because her husband refused to give his permission for her to be a organ " donor". She recovered and went on to become a RN. I thought you might be interested because you are looking for answers. Another resource is the Life and Hope Network which was started by Terri Schiavo's family. They help vulnerable patients get the care they deserve. Again, I apologize if my post was creepy to you. I just don't do social media and am not savvy about using it. I am a Christian and will be praying for your healing.
Delete
DeleteMy diagnosis is semi-vegetative. It is not brain dead. In vegetative, the brainstem is still alive. To my knowledge, I have never been an organ donor candidate. What ur addressing was 17 yrs ago for me. From what I remember, I felt rushed. I kept wanting an extra week.
I am now talking to u. That means 'vegetative' is wrong. I have been talking for a while n my questions lie here. Why am I still vegetative? Is it because I don't walk?
Praying should be for acceptance of a disability, not for a recovery. That's a big difference.