Thursday, July 24, 2014

I Haven't Enjoyed It




Enjoy it? Not even. It hasn't been enjoyable. I've been making it liveable, just a bit bearable.

I describe it, http://thoughtfulveg.blogspot.com/2011/08/description.html and record a lot of my ideas. I write other stuff as well. "Enjoy the show," though? That hasn't been the case. It has been a learning and teaching experience, though.

Hopefully, all this writing it down will help someone else.

It's been more like the following song, The Scientist by Coldplay.


I was just guessing at numbers and figures
Pulling your puzzles apart
Questions of science, science and progress
Do not speak as loud as my heart

My BA is in psychology, but it's a "soft science." I've had the introductory courses in math and biology, but psychology is rich in philosophy. Instead of explaining the neuroscience behind what's happening, I'll ask "why" is it happening. I'm big on statistics. I'll work on figuring it out...through all the obstacles.... (Did I tell you I'm listed as unconscious?)  

Monday, July 14, 2014

Service Coordination Isn't Lame


I got a new feeding tube.  It went so fast this time because I brought my own feeding tube. I once coordinated the care of people with developmental disabilities.  Put me in charge of my own medical care. If I could do other people, I'm sure I can do my own. I'm tired of going to the ER, waiting hours, running expensive tests, given antibiotics and sent home. All that when I just needed a new tube. 
 
So "lame-ass" treatment...
 

They did the best they could with what they knew. Now I know more. Do you keep a spare tire in your car? I'll be keeping a spare feeding tube. I'll be keeping one for the same reason.
 
All of that could have been prevented with case management (service coordination). There are usually no trips to the ER for the particular condition planned for. (I say usually as something unexpected can happen.) A case manager would have their consumers keep spares.


I once did case management. The job description is under Service Coordinator, http://www.vmrc.net/job-opportunities/  That feeding tube of mine would be the first duty listed. Key Responsibilities – Essential Functions 1. Assess, monitor, coordinate and implement IPP/IFSP through the ID Team process. Schedule and facilitate annual reviews, quarterly reviews, wellness review examinations, clinical consultations, and ID/IFSP Team meetings as required

An IPP is an Individual Person Plan. Aside from a document name, it's your life's plan. In my case it was get a new feeding tube. With a little planning, I have a proper feeding tube.

The VA has a case management component. The concept can be applied to other programs. It cuts costs over-all.

The medical field already has this.



Monday, July 7, 2014

Me Feisty?

  "Have you always been this feisty?"

 

The word "feisty" stuck-out to me. I had never used it. I'd always say I'm different. I never fit in. 

When I was in high school, and people were getting black trench coats, I went and got a trench coat...but it was blue. I didn't exactly fit in. (My hair didn't fit either. My head was shaved on one side.) That blue trench coat didn't fit in to the wildest fad.

"I fight authority"...authority says I'm unconscious. What would you do?
________________________________

All the ideas and everything I want to say...

"I have so many things in me that you can't even guess them all."


At least I can do this now and get most of it out...
________________________________

I have scientific ideas. Sometimes I write them down...

"A better term [for PVS or sometimes vegetative]  is "unresponsive wakefulness syndrome", Gary Williams. This is a better term than vegetative. It describes what's happening. Someone like me can't come along and stick a picture of a tomato butt with it.

This really got me thinking, "Moreover, if this person is typing full fledged sentences with complex thoughts they have moved beyond the minimally conscious state and into something akin to "locked-in syndrome" or what might just be called severe paralysis," Gary Williams. "Something akin to "locked-in syndrome" or what might just be called severe paralysis" makes sense to me. Years ago,  friends and family thought I had Locked-In Syndrome. I'd go through a process of blinking yes or no for every letter in  the alphabet in order to spell a word. That's how I communicated with my mother and close family. As I gained movement, I'd point to letters on a board. That's the paralysis. All this is now, is that I point to and press a letter on an electric letter board, the computer keyboard.

Thanks to the internet I can get everything I press out, out to the world. I talked about communication and technology a long time ago,
http://thoughtfulveg.blogspot.com/2012/03/dualism-mind-and-brain.html  As technology advances, the  mind/brain issue will become clearer.

The vegetative man in Canada who communicates he's not in pain http://scitechdaily.com/canadian-man-in-vegetative-state-communicates-that-hes-not-in-pain/  screams of this "something akin to "locked-in syndrome" or what might just be called severe paralysis." In  my case and this case we're trapped in unresponsive bodies. I have just been lucky in that I got one finger to move faster.  He communicated because of the technology. I communicate because I use technology. (Try this, use a pencil without an eraser and type a sentence. You have to spell all words correctly and make capitol letters. If the computer freezes, you must hit CTRL, ALT, DELETE. It's not easy. The pencil has no eraser and doesn't stay. Also..."how do you hit three keys? Two is bad, but now there's three?") If you can do that, you either used technology, another person, or your fingers. I guess you could have used your tongue, but I'd hate to see your computer.

Am I really fighting authority? Or am I just telling you how it really is? Is this feisty? 


  



Monday, June 30, 2014

Pay My Billls (revised)



A vegetative state is absence of responsiveness and awareness due to overwhelming dysfunction of the cerebral hemispheres, with sufficient sparing of the diencephalon and brain stem to preserve autonomic and motor reflexes and sleep-wake cycles. Patients may have complex reflexes, including eye movements, yawning, and involuntary movements to noxious stimuli, but show no awareness of self or environment. A minimally conscious state, unlike a vegetative state, is characterized by some evidence of awareness of self and/or the environment, and patients tend to improve. Diagnosis is clinical. Treatment is mainly supportive. Prognosis for patients with persistent deficits is typically bleak.

Well the situation is not too "bleak" if I'm writing this. I'm diagnosed "semi-vegetative" because that is what I was when I left the hospital. Obviously I'm not any vegetative any more. The problem with the above statement is a person can't recover from the first situation, persistent vegetative state. So you get what's happening to me. I'm still in a "coma" and I'm told so by e-mail. (Here's the e-mail, http://thoughtfulveg.blogspot.com/2014/05/dear-vegetable.html )

Is that punishment for being conscious? I've been through much worse.

I don't fit with this definition. Is the problem with me...or is there something wrong with the theory? It's the "neurological nihilism" and I explain this in http://thoughtfulveg.blogspot.com/2014/05/im-still-in-coma.html The problem is with the whole theory. It ends negatively. That's all that is expected as an outcome, so that is all that is given. In this case it's not much. It becomes a viscous cycle. No recovery is expected, so no therapy is given. (It is good I could do some. Imagine how I'd be if I got full therapy.)

I'm not in a care situation. I don't operate on this notion of neurological nihilism. Problems with this concept have been noticed by others: 
"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/ Families who immediately take a loved one home, avoiding a care situation have noticed it. Unfortunately the medical facilities don't reside at home. Those still needing medical care soon expire. If medical care is remained in, the other part expires.

How did I happen? Mostly luck. (It was statistically bound to happen.) There are factors (and I do some therapy!), but what matters is that it did happen. What are you going to do now?

(Politicians, I do vote. I'm unconscious and I vote! I use the absentee ballot. I make my choices, but I have someone else fill out the form. I can't hand-write with one finger. What does this do to your constituency? One of your voters is unconscious.)

Saturday, June 21, 2014

Mesmerized By What My Eyes Have Seen


I knew every step of the way. I don't care what others said, I knew. I couldn't say anything. I had no voice. It's said vegetative people don't  know. Well, not this vegetative person. I knew. My body just didn't show it.
 
My first word was "No."    Any wonder why?
 
Family was told, "She doesn't know you," and "She doesn't know you are there."  Wrong. I knew. I knew who visited and who didn't. Not only did I know my name, where I was, what day it was, and who was president (all hospital questions.), but I could give a short history of most subjects and explain how most things work. Of course all of this was in my head. I had no way to get it out.

That's why I'm happy to have this finger and a computer. I can say and be understood.

Don't say,  "She doesn't remember." I do. I  remember everything. All I've seen...
                 





______________________________ _______________

 

  The closest I could find to my situation that was on video was:


He just doesn't have the memory or awareness  of the rehabilitation. I do. I'd also venture to say it's not done yet with me. Obviously it's not done if there is continued substantial progress, rehab is not done. His rehab was a few years. It's already been quite a few with me recovering skills. I'm still listed as being in a coma. Isn't this proof enough I'm not?

All kinds of questions should be asked now.

Tuesday, May 27, 2014

I'm Still In A Coma?


I'm in a coma? That's the best you got? How lame.

I'd expect a better explanation from a child. I might be a princess.




The e-mail in question that was sent to me is in http://thoughtfulveg.blogspot.com/2014/05/dear-vegetable.html
All I was trying to do was contact the government and tell them they were wrong.

They don't want to hear it. They are dead set in their belief, and refer to me as being in a coma.
_________________________________________________


When I first got the e-mail I was stunned. It was telling me I was in a coma. Second, I guess this institution of the government sees fit to communicate with persons in coma by e-mail. Some would say it's the government at its finest.

Where did they go wrong? Actually, it started many years before I was born. A belief existed that humans are born with a certain number of neurons in the brain. That's it. If you lose or damage those, they are gone forever. "A neurological nihilism—a sense that treatment for many brain problems was ineffective or even unwarranted—had taken hold, and it spread through our culture, even stunting our overall view of human nature. Since the brain could not change, human nature, which emerges from it, seemed necessarily fixed and unalterable as well." http://www.normandoidge.com/normandoidge.com/EXCERPT.html




The belief is wrong.
  
I am just a person. Sure I went a little further faster, but that doesn't mean the rules don't apply to me. It means the wrong rules are being applied. Listen to the video clips. Those are more like what should  be applied.

I once was in a  coma. I slowly came out of that. I had a brain surgery (with a scan that shows I have a brain!). I've trekked to various facilities and homes. I've gotten better. Since the notion exists that once a brain is damaged it's damaged forever, I remain in a coma. Since brain cells were damaged in the initial bleed (I've heard 80% of my brain), I still don't have most of my brain. Old beliefs need to be re-evaluated. They just sent someone in a coma an e-mail. They better notice.  I AM NOT IN A COMA.

 





Sunday, May 11, 2014

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.