Sunday, November 19, 2017

Where I Went


I shared a photo the other day of a doctor I had 14 years ago. My bleed was 15 years ago. This was the first place I went to after I had a brain bleed, my AVM stroke. It was a private rehab at a county hospital.


I spent a great deal longer there than government insurance would cover. As far as I know this program doesn't accept government insurance. I kept my work insurance after discharge under a little used ruling called COBRA. This is probably the first clue I had all my faculties plus more. Not many people are aware of the ruling.

The place I went to is a top notch brain rehabilitation program in California. I credit a lot of what you see today to them. They laid the foundation of which later skills are built on. The skill you see today may not have been there yet while I was there, but the building blocks were.



This is the first time I left a hospital for a few hours. 
It was that rehab. You can see the tube in my neck 
that would later be hooked to a ventilator.
On later thought, not many can be unhooked from a ventilator.



My post:
Hey! I haven't seen a pic of her in a long time. The 3rd from left is [my doctor back then]. She was my doctor there 14yrs ago.
I went to this rehab with my prvt work ins. When the ins ran out I became govt n moved many times. The govt ruled me not conscious n vegetative. I was not to get rehab.
I wasn't talking or typing yet, so it had to be a trip for [people at that rehab] to hear from me.
I left a govt program in 2006. I kept getting told I'd die before 40. I'll soon be 48.
They, Valley Medical Center Rehabilitation knew something was up, tho. They suspected Locked-In Syndrome back then. It prolly was. So many now said it most likely is the case n my typing is me coming out.
The govt still has me listed as vegetative! Not only no rehab, but no neuro either. Neuro is only consult to a hospital. I'm not in a hospital.
_______________________________________

I didn't stay in the rehab because my insurance ran out. I had reached my cap. (Currently, this can't  happen. It depends on politics.) I became Medi-Cal in California. This is the national Medicaid program.

I moved many times. I'd say this was due to lack of case management. I'd be put in a program. After there for a bit, the program administrators saw that I didn't fit the program and I'd have to move. A case manager would match the fit before any person is sent. My paperwork is also an issue. According to that paperwork, I am unconscious. Imagine staff surprise when they find out that I'm not, http://thoughtfulveg.blogspot.com/2012/02/a-special-kind-of-stupid.html

Government placement kept saying I would die soon. Now that I think about it, what were they basing this assumption on? The CDC mean is 78.8 years before death. At the last hospital in that lengthy stay, a doctor said to a nurse right in front of me, "She won't make it to 40." Did that doctor mean I'd die if I remained in care? There will be no argument from me if that was the reason. I already had one hospital super bug that nearly claimed me. I don't think this was what that doctor meant when he said that, though. This is completely contradictory.... The hospital staff thought that I'd die from an AVM bleed, but they removed the stitches from the experimental surgery that removed it.

That is a dead body in the top left corner.
My roommate had died. 
I got used to death being nearby.


To believe I would die from something not there was due to poor record keeping. I can only say, 'Get off your high horse! You didn't perform the surgery, so it never happened? You refused to note it? Now there are even bigger problems."

True life expectancy was never addressed. I have made the only attempt, http://thoughtfulveg.blogspot.com/2017/01/new-estimated-lifespan.html
What if the following happened, "I was thinking that the way I believe neurogenesis was started may have possibly set up a never-ending cycle"? http://thoughtfulveg.blogspot.com/2017/06/sparking-imagination.html This should be addressed.

Not much could be done for me if some freak accident gave me immortality. (Longevity is more likely, but imagination doesn't hurt.) A heads up could be given to scientists in the field of longevity. Who said this couldn't be cross-disciplined? I am the writer here, and I can notify whoever I want.


11-20-2017
There is definitely something wrong with life-expectancy. The govt was saying 40 before I left. I'll be 48 in Jan. The AVM was removed, so go back to the CDC estimate of 78.8, right? Well no if a stroke is the event that cleans damage of age left in cells. Take the CDC avg and add my age at time of stroke.
 

Sunday, November 12, 2017

It's How You Use Your Memory


"Knowing HOW to access information is more important than memorization. The computer can hold the facts, but you hold the computer." http://thoughtfulveg.blogspot.com/2016/03/making-it-fit.html

The following was posted in an on-line group. Eben Alexander III is an author and neurosurgeon. Dr Alexander writes, "Memory is not even located in the physical brain, but accessed through it (as is fundamental consciousness itself). Neurosurgeons have suspected this for decades -- it is the giant white elephant in the room. All of those neocortical resections and never an ounce of disappearance of memory. Damage to hippocampus merely prevents conversion of short term to long term memory. Never has any such ablation/resection resulted in loss of definable memories. Failure to locate memory in the brain is one of the final nails in the coffin of reductive materialist neuroscience -- all this and much more explained in our new book, Living in a Mindful Universe (Rodale Books, 2017), co-authored with Karen Newell."

Now I think I'd have to have some memory, or I'd be reaching for a dictionary to spell every word I write. I'm going with the fact that I have brain cells. http://thoughtfulveg.blogspot.com/2017/04/a-postulate.html The government has me labeled as a vegetable and therefore I don't have brain cells for thinking. I only have brainstem for my heart and lungs.


We are capable of performing amazing feats, but I'd rather look up a phone number, than memorize an entire phone book. In this way, I only have to remember how to use a telephone book.

This becomes the reasoning to develop writing. If not, we go back to the beginning of civilization and depend on oral stories to be passed down. "Without writing the flow of ideas halted shortly beyond the source. The importance of writing stems from the fact that writing is the primary basis upon which communication, history, record keeping, and art is begun." http://home.utah.edu/~u0404503/PDF/School/Power%20Points/why_writing_is_so_important.pdf

The human accesses memory in this way.  Memory becomes a tool for use.




Tuesday, November 7, 2017

My Coma Is Fake News


I was looking at the context of my story being on this radio program...


I and an essay I sent in are discussed. They talk about me 8 minutes in. Then it goes on into a professor giving information on reliable news and sources. The Pro-Truth Pledge is talked about and encouraged.

It sounds like my coma was fake news.

 ________________________________


Saying my coma is "fake news" does not negate the letter stating "We are sorry to learn that you are currently in what could be considered a "semi-vegetative" state that has significantly affected your ability to speak, write, and perform other tasks." Right above that it is made clear that is a coma, "persistent vegetative state, sometimes referred to as coma."

That letter has been copied and forwarded many times. I will put it for others below. "Kicking yourself" is what that agency is doing right now. Obviously, I am not in a coma.

I want to note, I was only saying vegetative until I got this letter. I did not know I was in a coma. There are other good things in that letter, but it got off on the wrong foot. "Coma" may not have needed to be in there at all. Most people would see that and toss the letter in the trash.

If my coma is fake news, is that letter fake? I want a neurologist and annual appointments back-dated to 2006. I also want rehab. What about the tube left in my stomach? I need swallow therapy because the GI Specialist wanted to take the G-tube out two years ago.

Fake, my foot! There's nothing fake about this.

_______________________________________

05/09/14 at 9:46 AM
Dear Ms. Ronson:
We are responding to your email to the National Institute of Neurological Disorders and Stroke (NINDS) concerning persistent vegetative state, sometimes referred to as coma. 
We are sorry to learn that you are currently in what could be considered a "semi-vegetative" state that has significantly affected your ability to speak, write, and perform other tasks.  You explained that your condition was expected to decline, but that you have slowly gotten better.  We can certainly understand your desire to share your blog with others and seek advice about your case.  As a biomedical research funding agency, the NINDS cannot provide people with personal, case-specific advice about a medical condition.  However, we can provide general information about neurological disorders and direct you to other possible sources of assistance.  If you are seeking a neurologist, the resources in the "Additional Information" section at the end of this message may be helpful.
The NINDS has online information that provides an overview of coma and summarizes the Institute's research in this field.  You can access this information at the following website:  http://www.ninds.nih.gov/disorders/coma/coma.htm. The following section lists voluntary health agencies that provide services to those affected by coma:  http://www.ninds.nih.gov/disorders/coma/org_coma.htm. Such organizations often prepare newsletters with stories that inform and inspire others who are coping with conditions such as yours.  They may be interested in learning about your experiences. 
In addition, you may wish to visit the MedlinePlus website offered by the National Library of Medicine (NLM).  The site is designed to assist people in identifying resources that will help them with their health concerns or questions.  Resources on coma are provided at http://www.nlm.nih.gov/medlineplus/coma.html.
For citations to research articles, you may wish to search PubMed, which provides free access to an online bibliographic database of published biomedical literature from the NLM.  You can access PubMed at http://www.pubmed.gov. The search strategies "coma AND review" and "persistent vegetative state AND review" are possible starting points to find articles.  Some articles are available free of charge online; if so, the citation will indicate that.  Otherwise, to obtain copies of any articles identified by your search, you may need the assistance of a librarian at the nearest university or medical library.  Alternatively, the NLM offers a service called Loansome Doc that allows PubMed users to order a copy of any article they locate in the database directly from the Internet. 
Finally, you may be interested in learning about research studies at the National Institutes of Health (NIH) or in your area.  The "NIH Clinical Research Trials and You" website at http://www.nih.gov/health/clinicaltrials is a good starting point.  The site offers resources for people interested in volunteering for a study, including questions to help determine the potential risks and benefits of participating in a trial.  The site provides a link to ClinicalTrials.gov (http://www.clinicaltrials.gov/), an NIH database that has information about federally and privately funded clinical research studies on a wide range of diseases and conditions.  You can search the database to learn about research studies in need of participants, as well as their location, purpose, and criteria for patient participation.  Tips for searching ClinicalTrials.gov are provided at http://www.nih.gov/health/clinicaltrials/CTgovSearchTips.htm. The site also includes a link to ResearchMatch, an NIH-funded registry to help connect volunteers with researchers who are in need of study participants:  https://www.researchmatch.org/.
We hope this information is helpful.
Office of Communications and Public Liaison
National Institute of Neurological Disorders and Stroke
ADDITIONAL INFORMATION
Finding a Specialist
Voluntary health agencies focused on the disease or disorder that concerns you may be able to direct you to specialists in the United States.  A list of approximately 300 national non-profit health organizations concerned with neurological conditions can be found at this NINDS site:  http://www.ninds.nih.gov/find_people/voluntary_orgs/organizations_index.htm.
You may also wish to contact the department of neurology at a teaching hospital--that is, a hospital affiliated with a medical school--to obtain possible referrals to specialists.  You can find a list of teaching hospitals in the United States at the following Association of American Medical Colleges website:  https://members.aamc.org/eweb/DynamicPage.aspx?site=AAMC&webcode=AAMCOrgSearchResult&orgtype=Hospital/Health%20System.
Another option would be to visit the National Library of Medicine's MedlinePlus website, which offers a variety of resources to help people with their health questions.  This MedlinePlus site has information about choosing a physician or health care service:  http://www.nlm.nih.gov/medlineplus/choosingadoctororhealthcareservice.html. The following site includes links to directories or listings that may help you locate specialists:  http://www.nlm.nih.gov/medlineplus/directories.html. If you click on "Find a Neurologist," you will be prompted with a search box that will allow you to select a particular state.   
4-14-14


Saturday, November 4, 2017

A Psych Classifying Herself?




I don’t and I refuse to. I’ll leave that up to someone else. Which means doctors are screwed. This is why… While I was in coma- closed eye, then open, I was given Persistent Vegetative State. A bit later, I am communicating with the doctor by blinking for "yes/no." They already said I was vegetative and had submitted forms. I was made vegetative, and a payee paid my bills. Communicating with the doctor in this way was Minimally Conscious State (MCS) and I was most likely Locked-In.

I understood what was told to me, but it was difficult to give any response at all, even blinking. I have a BA in psychology. This area was covered. I was familiar with terms. More amazing. I have an MA in Special Education from San Francisco State University. I specialized in neurologically impaired infants.

I knew what a brain bleed was. I knew what lobes of the brain were. I knew that when a bleed as bad as mine kills off all the cells in all four lobes that I shouldn't be understanding. I knew I was dying. I couldn't respond. I figured I'd die soon. 

The payee was late. Doctors didn’t get their money. They screwed themselves. I could blink to family members to pay doctor bills. They managed to drop the payee, so I could pay bills, but I’m left vegetative. I should have been diagnosed Locked-In Syndrome. I am flat-out in a stone-cold coma between the first and second hospitals. You don't diagnose that at that time. The blinking came a bit later at the second hospital. I get stuck with "vegetative".

Years later I’m still "vegetative". I now talk. My diagnosis should be quadriplegia with some movement. I answer tons of questions like this one. I am no where near short of knowledge. My cognition is not compromised.
   
My diagnosis can’t be changed. The diagnosis became permanent after 3 months. Now research can’t be done. You can’t get consent from a not conscious person. People in comas don't get much of anything. They don't ask for anything. Vegetative probably isn't coma, but it is classified that way.
  
I’ve pretty much always disagreed with how a diagnosis becomes a label. This is that MA in Special Education. I see the diagnosis as a starting point and you grow from it. This means it can change. I’m not vegetative anymore.




Saturday, October 28, 2017

Just Like So Many Times Before


I made a playlist. Tom Petty  recently died, and I was making a tribute to him.

The song I start with wasn't even his, but he sings in it during this particular performance. It fits the occasion. The song belongs to Bob Dylan, but I was always comparing the two. If I was asked who Tom Petty was, I'd say he was the Bob Dylan of the '80's. They both were popular. They both had a nasal quality to their vocals, and sometimes sounded like they were pushing the words out. They both did Rock.






I was listening to this particular video. Tom Petty is with Bob Dylan. The lines "like so many times before" and at "heaven's door" filled my head with memories.

 
I "coded" or flat-lined a lot after my stroke. I was in care almost 4 years. I'd say the word 'coded' because I felt it was related to my breathing, not my heart. I had a tracheostomy and was suctioned quite often to clear my airway. 
 
Now that I think about it, that was how that chicken died. The eyedropper used to suction Mike the Headless Chicken was lost. Mike couldn't breathe and died.


You can live without a brain, if you are suctioned.


"Like so many times before," I flat-lined, "coded", or died. Say it however you like.





Hey, they both played guitar and harmonica! (Dylan is still alive and influencing culture.)


Here's the list, 




Wednesday, October 25, 2017

Re: Imagine A World Without Rhetorical Questions



Wikileaks on Weed Podcast:
28 years ago in Gloucester, a "normal, everyday" chiropractor named Jon Sarkin suffered a massive stroke. After spending weeks in a coma, he awoke a changed man, with a compulsion to simply create art. Art very much unlike anything else out there. Even though language is often inadequate in describing such things, Crunch Dog and Larry invited Jon on the porch anyway. He walks us through his philosophy, the stories of his life story option purchase from Tom Cruise's production company, and we even get to play a game or two. We hope you enjoy this conversation as much as we did.


____________________________
 
I'm full of stories. That can happen when something that "sounds" devastating happens. It should have been, but I'm still here.

I'm the only not conscious person I know that writes. When the topic of FREE SPEECH came up, I perked up my ears. My writing is part of this world, but I am not. Trip on that! My writing is covered by the First Amendment. I'll talk about some touchy subjects, but mostly my consciousness. I'm not conscious, by diagnosis. I had a terrible stroke, that shouldn't have been recoverable. I'm here, though.

I write about what I think. Jon paints or draws about it. It isn't about how you get it out, but that you do. I didn't have use of my hands when this started. I now have one finger. So I write. That's how I get it out.

I wanted to hear Jon's thoughts on topics. You can do that in the podcast. I found the stuff on Hollywood funny. I'm from Northern California. The lack of ethics wears off by the time you get here, but appearances don't. People will think, 'Damn, she looks good for being so disabled.' You can't tell until I open my mouth. You hear it if I try to speak. I used to not be able to, so there's huge accomplishment. Seeing is first, though. I want to make a good impression, especially if I'm going to represent persons who are disabled.

Yes, bad things can happen to good people. It's how you handle it. It is possible to still be successful.


https://www.jsarkin.com/





Sunday, October 15, 2017

She'll Tell You (I Can Too)


All of a sudden an autistic girl can tell you what's going on by typing it onto her computer. Umm...that's what this is, only I have brain injury not autism. Instead of all those behaviors I am opposite. I hardly move at all. My face has been expressionless. This last one finally seems to be changing.


Girl with autism types on computer.



Carly, that girl, is in Canada. She is conscious. People can freely ask her questions. The US has deemed me not conscious. This is a political move bad for science. Most are unaware that I am able to answer questions.

______________________________

The government has me listed as unconscious. Although my eyes are open, the vegetative state is also a coma. When I couldn't speak, it was easy to say that I was still vegetative. I really was in an eyes closed coma. I didn't do anything when I opened my eyes. Talking and writing come years later, although I had some vocalizing during the first year post bleed. I am well beyond time limits.

I do speak some. One could still say they don't understand me, so I must be mentally deficient because my bleed was so bad. However, these essays exist. They are very clear. They are very public. It's getting hard to say I am not conscious.

I wonder why it is difficult for the US government to admit that I am conscious now. I know that if they did, they can open themselves to lawsuits, but I thought that new discoveries can exempt this. I keep going back to the thought that maybe something that we don't know about happened in the Schiavo case. I thought the case was very public, but we don't know everything.

 


______________________________

I think I found a back door for science. Everyone thinks I am in a coma. People who know me know that I am not. Yes I am disabled, but I am not in a coma.

I figure I can't go wrong if my situation is in the public eye. Open Science is the way to go. This is science, but everything is public access.


This man is from Elsevier magazine. They do on-line journal publishing. They are very transparent. This previous quote is from Twitter. Papers published by them are on-line. The journal Consciousness and Cognition may be the way to go https://www.elsevier.com/authors/journal-authors/submit-your-paper. [This journal is only suggested. It is not mandatory.]

Data for reports may be extrapolated from my blogs. Well over 300 essays are available to the public. A majority is in The Thoughtful Vegetable. I have a second blog for brain injury, Brain Injury Know How. I'm looking for writing analysis, NOT diagnosis. My current diagnosis is semi-vegetative. I believe this to be incorrect, but I will need viable reports.

I still have to work out details. If you have ideas, please message or email me. This also may not have to be done if a university picks up. Their work already is public.
 
The whole idea here is PUBLIC ACCESS. 

This makes my case accessible to all the other countries interested in my case without me moving there. Lay people may also participate. Private blogs may be self-published and even sent to me. You may get it shared.

______________________________

The girl I started with is older now and doing some interesting things. 
 



__________________________________

10-17-2017 I am obviously misdiagnosed. Instead of focusing on that, just look at the essays. Does the writing style change? Is there progression? I've noticed they are longer. http://thoughtfulveg.blogspot.com/2013/11/my-first-blog.html
(The MySpace blogs do not exist at all anymore. MySpace may have changed ownership, also.)