Dear Vegetable

I couldn't be reading this right. The first few sentences.... You read it.

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

To begin with, they state "coma." I've known PVS (Persistent Vegetative State) is also a coma.   They take the stance that my diagnosis is proper. "We are sorry" you are in a coma. Why is a person in a coma able to read? Why are they writing to someone in a coma? The letter should just start, "Dear Vegetable."

That beginning negates the whole letter. It doesn't matter what the rest says. It got off on the wrong foot.

Changing those words a  bit, "Don't talk to me like I'm an idiot. I may not have a  neuroscience degree, but I'm not in a coma."

(By the way, I can tell you what my phone number was when I was 5 years old.) 

____________________________________

My response? It can be viewed in the style of that clip....

Don't be sorry for me. Be sorry for u. A copy of this is being sent to Neuroscience News. It will also be published n u can read w/ the rest of the world.

You take this lightly. It was taken lightly when I was severe. That was a clue right there when I opened my eyes. That never should have happened. At 1st, I was fooled like u, but as time goes on u can see. I used to be severe, unable to move or talk. When I  started making sounds that should have been another clue for u. I have no brain, just brainstem! Where was this sound coming from? 4yrs in various hospitals...still u have no clue. I should be in a nursing home, but I did some things n I'm not. Now u have a vegetable on the loose! I managed to get 1 finger to move so I could type out what I want to say. My speaking still isn't that great, but I do it. It progresses like the rest of me. Gee, I was severe now I'm moderate. I'm working towards mild. What comes next?

Do the math! I was severe. I slowly gained muscle movement. I no longer require a ventilator n now have a big hole in my neck. (Pictures speak a thousand  words n the media will love this 1.) I managed to get out of the hospital, taught myself to type, n have gone public? Like I said don't be sorry for me, be sorry for u. This was your opportunity n u blew it. This has already been sent. U can't un-ring a bell once it's rung.

I don't seek a doctor or advice. They don't know anyway. The best advice I got was from a retired biologist who has passed away. He said don't do anything. So I haven't. I just keep body parts properly positioned n I'll do exercise. Nothing invasive is done. U just need to be aware then. I'm sure there r others who would jump at the opportunity to research what is going on.

Extraordinary...

I do that. Actually, that’s being done to me. I can handle that better than other brain injury patients, though. Simple orientation is all that’s required, not a breakdown of complex theories.

Statistically, this was bound to happen.

"Far too often, patients ... are given up for gone, left to languish in nursing homes where no one bothers with physical therapy or even to check for glimmers of regained consciousness." http://www.wired.com/2013/02/searching-for-consciousness/
 

How many people is that? Quite a few.

"Approximately 1 out of 1400 people with mental retardation or CNS deficits other than autism do have savant skills." https://www.wisconsinmedicalsociety.org/professional/savant-syndrome/resources/articles/savant-syndrome-2013-myths-and-realities/

I’d venture to say 1 out of 1400 people diagnosed PVS will end up regaining consciousness enough to be reclassified. I’m just applying the figures. I’m not doing any math, so that's where I get 1400. That’s an observation of that report. Now this is where I'm not too clear...1 of 1400 of those people would have many skills such as I do.

I recovered this far in skill and predict there will be more attained. Keen observation of myself and others and an understanding of developmental processes allow me to make this prediction.

I would be doing extraordinary things, so I'm extraordinary evidence. Now let me make an extraordinary claim...PVS (Persistent Vegetative State) is a form of consciousness. It's just lower than MCS (Minimally Conscious State). Think about it...there's brain dead, PVS, and MCS. PVS is not brain death. It's not conscious enough to be minimal (MCS). It's consciousness right before death. It can get better or it can get worse, just like anything else.
 
 

UPDATE 6/20/2015

New skill of movement can be seen in my other "paralyzed" hand...
 



UPDATE 5/15/2017

Note that a return to consciousness does not mean a cognitive return.

We Have A Problem

First off, there's issue with "soul perfectly in tact, but can't get the words out." Isn't that aphasia? Maybe he's talking extreme. Isn't that Locked-In Syndrome (LIS)? LIS is documented. A movie was even made (subtitles are in English).

Here's the  bigger issue, though...I'm not conscious. What he says about damaging one part of the brain happened here. My parts are not only damaged,  but are dead. I was listening to a radio show once, and a doctor gave reference to me and said "80%." So 80% of my brain was dead. No one is sure why I woke up. Well now, regarding what this person above says, I'd like to think I still speak English.

I've previously explained what I thought happened. Another scan of my brain will have to be done. As it is now, I'm writing and giving commentary with enough brain to barely stay alive.

Plateaus Are Imaginary

"Two steps forward" is progression. A "step back" is a lull in development.

Long ago in my Master's training program, there was a guest lecturer. She was a therapist. She said when you reach a stall in development, a plateau, you work through it. Now this was a program for early intervention in special education. I didn't know the practice in some physical therapy was to stop if there was a lull in attaining developmental skills. Special education teachers can be working with the same student for years. There may be lulls in the student's development, but that's what makes it "special." A teacher doesn't quit working with a student because he or she doesn't learn.

Although development is slow, the student "gets it" eventually, sometimes years later (the particular task worked on). Gosh, there probably was a lull at that moment in time when started, but it wasn't forever. The same can happen in brain injury. Prime example...me. My developmental skill progression was slow. Sure I had a lull in development at the beginning of my brain injury. "No Progress" is determined. I was placed with the vegetative. That is how I remain today.

Years later I am writing this. It wasn't "Wham! She can write." It's taken many years and I use accessibility features on the computer. I was published in 2009, http://www.nxtbook.com/nxtbooks/aha/strokeconnection_20090708/index.php#/10/OnePage. My accident  was in 2002. There's just a lull right there in dates. I don't know of any rehab that lasts 9 years. A special ed teacher would last that long, though, and that is what I used to do. That's what I did when therapy ran out. No therapist showed me how to type. Accessibility is an area I used to cover. I've just applied techniques to myself.

Let's see what this document says http://braininjuryknow.blogspot.com/2013/04/getting-there.html. I directly quote an article,

"The nerve fibers from the cells were severed, but the cells themselves remained intact." Nerve cells that have not died can form new connections. It goes on to say, "The new research suggests that instead of the sudden recovery Wallis seemed to make when he began speaking and moving three years ago, he actually may have been slowly recovering all along, as nerves in his brain formed new connections at a glacial pace until enough were present to make a network."  http://usatoday30.usatoday.com/news/health/2006-07-03-brain-rewired_x.htm        

This thing was written a few years ago. How can anyone without that proper equipment determine there will be "No Progress"? A person would have to be able to see "nerve fibers from the cells." My eyes aren't that good, so I can't. From the way it read, this wasn't a regular MRI either. This was a few years ago, so I'm sure the technology is more widely available now. Still, though, to the naked eye, progress can't be determined.

I go on to reassure that rewiring can't be seen and may take years. With this research available then, why is it that people are still being told there will be no progress? The "plateau" isn't really there.

My Hole

The picture is 3/9/2020

at the gastro-intestinal doctor's office.

My daughter is trying out her 

new camera and filters. 

I have to get my feeding tube changed.
(Update 3/11/2020)

I have a hole in my neck...but I can breathe now so I don't mind. How did I get a hole? I couldn't breathe. I lost consciousness and I guess at some point a hole was cut into my neck to hook me to a machine to breathe, a ventilator.

Breathing has been such a big deal, but it has been treated as secondary. What good is anything (medication, medical procedures, or therapy) if the person being treated doesn't breathe?

I put some pictures together that show it has been a very  long time. Completely breathing on my own has been a long process. That process didn't end with me getting off a ventilator, but many years later. My lungs were finally able to get continuously off a machine. The tube may be left in, and mine was, in case machine hook up is needed. When the lungs are strong enough, the tube is removed.

This is where my hole comes from. Although I was removed from the breathing machine, the ventilator, the tube was left in my neck for years. When the tube finally comes out, the hole left behind will naturally close on its own. Mine didn't. The skin over it had to be surgically closed. I've been left with an indentation that slowly gets smaller over the years. Breathing treatments (I was frequently getting these) soon ended after closing the hole. I used an inhaler (like for asthma). Breathing issues now can just be handled by my regular doctor.

The above was taken at a birthday party. I got out of the hospital for the day. The picture below is just an enlargement of me. After the party I returned to the hospital. I was placed back on the ventilator.  I was  not all the way weaned from it yet. This third picture is the same day and you can see my arms. Besides the IV bruises, I have hospital arm bands on. 

These pictures were 2003. I remember that as soon as I got back to the hospital I was hooked back up to the ventilator. This party was the longest I had been off. The hospital was in the process of weaning me off of the machine.

____________________

This is in 2006 before I got out of the hospital. The hole in my neck was just closed. Prior to that it was open and I could breathe through it. The tube had been out a year, leaving an open hole. I used that open hole for breathing.

____________________

 

This was my profile pic at WeAreTBI.com. That was 2009. You can see the hole is closed and healed.

____________________

In 2013 you can see the hole has gotten smaller. At this rate, I will have a hole a while. Eventually it will become a scar.

________________________________________

2/2/2017
Here's 4 years later. Obviously changes are happening.

______________________________

2019 Update

15 years after the tube was removed, I still have a hole in my neck from the ventilator. I had this thing for 2 years, which is unusual to breathe on your own again after being on a machine for so long.

I was weaned to room air after the first year. It is all out now. This process is taking years. It's not just being on a machine, but also the many years of damage.

This video was earlier this year (2019). At 55 seconds I start turning my head and you can see the hole. I did a tracheal tube for years. It was removed a few months after the surgery and procedures at Stanford to remove the AVM (blood clot). Then I had an open hole for a year. I had surgery in 2006 to close the hole. (Tracheal tube was removed 2004 and the hole did not close on its own.)   

I've had many pneumonias. These have become less frequent. The last few years it has been bronchitis and other bronchial infections. That's where it ends for now.

The Medicaid Shuffle

"A Canadian man who was thought to have been in a persistent vegetative state for more than a decade has been able to communicate to scientists that he isn’t in any pain." http://scitechdaily.com/canadian-man-in-vegetative-state-communicates-that-hes-not-in-pain/  

Now imagine someone like this with a very rare disorder that makes the brain injury go the other way. The person gets smarter. The person is so smart, that she figures out how to move a finger and she can now type.  That's all I can figure that happened to me.

Nothing like this ever happened before, yet I am writing this. The above video is the closest I could find to an explanation. Yes, I am still unconscious and in a coma. Comas can be eyes open. "Vegetative" is a coma, and I am vegetative. People are amazed when I tell them. Doctors stare at me. My medical records reflect that I am vegetative.

Supposedly my brain was all wiped out by a brain bleed. I only had some brainstem allowing a heartbeat. I didn't even have a full brainstem! I couldn't breathe and was on a ventilator. There's a big hole in my neck now that is slowly getting smaller now that I breathe. I wasn't ever supposed to talk. I do now and that's getting better as it wasn't understandable. As for writing this? Amazing is all I can say,

All of that didn't stop my bills. I couldn't believe the misconceptions I've seen. Since I opened my eyes, but I am still in a coma, I can tell you what happens to bills and whatnot. 

I was employed at the time of accident, so I had insurance. It was very good insurance, too. (If a person does not have insurance, there is a way to get government assistance,  but it may not cover everything.) Medical insurance from your employer takes care of medical bills while you are employed.

If you don't go to work, you don't stay employed. Although I technically wasn't conscious and couldn't talk, I had long periods of lucidity where I could communicate with my mother by blinking. The doctor sent a letter to Social Security. Social Security suspended my payee so I could pay my hospital bills myself. The payee was slow and usually late. Social Security left me unconscious. Hospital bills are immediate. Bills don't stop while you are in a coma. I had good insurance that I didn't want to lose since I couldn't go to work. I kept it under COBRA and was forced to forgo all of my other bills. COBRA is expensive.

Eventually the private insurance ran out. The hospital I was at moved me to a Medicaid bed. (The bed was actually called that!) I waited in that bed until I was moved out of that hospital. Initially I was sent to a care home that wasn't near family. That place sent me to another home a few months later. I was at the second home a few months and then ended up back in the hospital I started in. I call this moving the "Medicaid Shuffle."

Mind you I'm still technically unconscious. I could say most words by then. So I'm unconscious and talking...and could pay my bills. This second time that I was placed, that hospital sent me to a "Sub-acute Hospital" which was nothing more than a large nursing home. I was doing the Medicaid Shuffle. This is how long-term disability is dealt with by the government in my case. 

A few months later  I ended up in a different hospital with dehydration. I was lucky I didn't die. That hospital fixed me up and filed some sort of complaint. I went back, someone from the state came and asked me questions. I was moved while I had surgery at yet another hospital.

That next hospital placement lasted a little over a year. It was a long-term sub-acute unit at a (real) hospital. Medicaid does not pay enough. The hospital had to close that unit. I didn't want to continue doing the Medicaid Shuffle. All the residents were being moved to nursing homes. There was an option for a family member to sign you out. I managed to do that. I left that hospital unconscious, and that is how I remain.

Now I live in my own home. I got back custody of my kids and finished raising them. I sometimes talk on the phone and I pay my bills. I can mostly dress myself and depend on someone to hook up my feeding tube, place me in a wheel chair, and do routine household chores. I'm still unconscious and the state retains the right to place me in a nursing home.

Tears of an Angel

I do it for the angels who cry. A tear is usually caused by something, something bad a lot of times. It usually takes knowing. A single tear is different from the eyes watering. There isn't an irritant to the eye. I used much of the following when filling out a form:

Briefly describe your issue and include specific information (dates, places, who was involved, etc.)

I had a severe brain bleed. It was a bleeding stroke, or AVM stroke. The bleeding in my head wasn't stopped for hours. By the time it was, I ended up in a coma. When I opened my eyes, I was first determined brain dead, then vegetative. This gives commentary and a newspaper article,  http://thoughtfulveg.blogspot.com/2012/02/angela.html
 

I'm a vegetable and not conscious.



What have you done to
address this issue? (i.e., filed formal complaint/grievance, exhausted
administrative remedies, contacted involved individuals, etc.)

The first thing that happened was in the second hospital, http://thoughtfulveg.blogspot.com/2012/11/competent.html

I contacted OCR, the Office of Civil Rights. http://thoughtfulveg.blogspot.com/2013/01/regrettably-matters-you-raise-in-your.html (E-mail with OCR is at the end.) It wasn't civil rights (they said) and they referred me to CMS, the Centers for Medicare and Medicaid Services. The CMS e-mails are attached to http://thoughtfulveg.blogspot.com/2013/02/im-still-vegetablethat-handles-money.html CMS was awful because I had to do a letter.

Basically, it's okay to be a vegetable on your own as long as you don't get into trouble. They still reserve the right to take me from my home and put me in care.



What would you like [us] to do for you?

I would like to stay in my home. I don't want to be scared to go to the ER.

"Far too often, patients ... are given up for gone, left to
languish in nursing homes where no one bothers with physical therapy or even to check for glimmers of regained consciousness." http://thoughtfulveg.blogspot.com/2013/08/you-better-notice-me-now.html I was one of these people. I probably have a rare disorder allowing me to communicate. I do this because I can and there are a few who can't. I've had to listen to a roommate cry when her mother left. No one can tell me that's not consciousness.

 
The girl pictured above is Shea Shaw.

Her website is http://www.angelsforshea.com/  She can also be found on Facebook, https://www.facebook.com/AngelsforShea  I initially saw pictures of her BEFORE her eyes opened. She is on a very slow track also.