I Want ASS

UPDATED:  11/23/2013, 1/4/2019


The more I think about it, a savant would be conscious. A savant would be able to give all this info. This is a continuation of http://thoughtfulveg.blogspot.com/2012/12/i-have-ass.html 

(ASS=Acquired Savant Syndrome)

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I decided to look more into this disorder. "Savant syndrome is a rare, but extraordinary, condition in which persons with serious mental disabilities, including autistic disorder, have some ‘island of genius’ which stands in marked, incongruous contrast to overall handicap." This can happen after a brain injury, "however, ‘acquired’ savant skills can also appear, when none were previously present, in neurotypical individuals following brain injury." http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2677584/

Being female, this here caught my eye, "Reports of female savants continue to be relatively few." It goes on to say,"Males outnumber females by an approximate 6:1 ratio in savant syndrome." http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2677584/ Not only is this rare in rare, but I am female, making this even more rare.

Here's something to think about, "Savant syndrome, both in the congenital and acquired types, provides compelling evidence of remarkable brain plasticity. Indeed, brain plasticity will be a central aspect of all neuroscience research in the decades ahead. Until fairly recently, there has been what Doidge (2007), in his book The brain that changes itself, calls ‘neurologic nihilism’. This was a generally pessimistic view of the ability of neuronal tissue to regenerate and rewire itself in the face of injury or disease." http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2677584/ Am I a culmination of medicine and life experiences? Brain plasticity plays a major role.

I don't really fit into the areas of savant skills. "Considering all the abilities in the human repertoire, it is interesting that savant skills generally narrow to five general categories: music, art, calendar calculating; mathematics, and mechanical or spatial skills." [Close to this. I took out examples and non-pertinent phrases.] http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2677584/ The closest you could get is saying writing is an art form. I've done many of these pieces. There are well over a 100 posts between my 2 blogs. [around 400 now]

Could it be computers in general? I've lost track of all the accounts I have. Before signing up for something I will first do a password recovery. There's no sense in making a new account. Computers are too new and therefor not included in savant syndrome skills.

This was interesting to me, "Other skills have been reported less often, including: prodigious language (poly-glot) facility; unusual sensory discrimination in smell, touch or vision including synaesthesia; perfect appreciation of passing time without benefit of a clock; and outstanding knowledge in specific fields such as neurophysiology." http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2677584/ It's no secret that I have a knowledge of neurology. This entire paper would be a reflection of that. "Think of all those miles and miles of myelin sheath Ms. Ronson had to laboriously re-knit to heal and reconnect her severely damaged brain," is also neurological. http://spiritualscientific.com/DrMorseBlog/2010/11/09/angela-ronson-part-3-how-our-brain-is-connected-to-the-universe/ I don't know how I did that.

The person with savant syndrome lacks purpose. Something I have. "Cognitive skills, logical skills, and analytical skills are absent in savants." http://beatsme.hubpages.com/hub/Savant-Syndrome That's something I do. This neuro stuff is hard to understand and I make it more understandable. That means I analyze it.
 
If I am given savant syndrome, then I am conscious. This has to be considered. It's a strange Catch-22. I don't know how possible this is, seeing that it is so closely tied to politics.

What is the purpose of keeping me not conscious anyway? Does it mean someone will have to work if I am? Not being conscious means to me I am just a slave to this brain injury.

I WANT acquired savant syndrome. I would like to be conscious. I want ASS.

I'm a Talking Head

A while ago there was a popular band called Talking Heads.

It isn't the "same as it ever was"  as he says.

That's basically all I am, a talking head. Actually I'm a talking head and an arm. Oh, everything is all there. The only things that work consistently, though, are my head and this one finger I type with. More will most likely work in the future, but it has taken this long to get these going.

It's taken a long time for that head and arm to work. I've put those ideas here on how to get an arm to work. It's not that crazy. Look up Edward Taub sometime. He's doing it. I just take his stuff further.

I had to find a way to get all this stuff out. I guess the ideas started with me, like that arm thing.  I had to get an arm to work. Now that I can get the ideas out to you, I can think of all kinds of stuff....

(I knew I was going to fly.)

*Taub's stuff is not yet covered by insurance. [5/8/2019  I should hope some is covered by now with private ins. I know that Medicaid does not.]

Updated 4-17-2014

Groove Me



People continue to debate whether I'm conscious or not. Let them. There is something else that needs to be dealt with right now that doesn't concern my consciousness. (For some background, I suffered a severe brain injury. I shouldn't be able to write this.) I have believed rewiring is slowly occurring for a long time now. Maybe if rewiring, neuroplasticity, was accepted, this wouldn't be such a big debate. (Watch the video for an explanation of rewiring/neuroplasticity
http://braininjuryknow.blogspot.com/2012/03/what-heck-is-rewiring-brain-anyways.html.)
 

I was recently asked on Twitter, "if there was one thing to change to make you happy what would it be?" (J.-François Gariépy https://twitter.com/JFGariepy/status/313815449597009920)
 

My answer:  THERAPY.

Therapy has slowly been cut to almost nothing. Put "Medicare cutting therapy" in your browser and all kinds of stuff comes up. What once was all the time, is now just a little bit to help some of you get by.

When I started this strange journey, I was employed in a county position. I worked for a county mental health. It came with pretty nice insurance. Insurance I ended up using when I became incapacitated. Time went by and medical costs were high. The insurance ran out. I now have Medicaid and Medicare.

These latter programs provide close to nothing for therapy. The lesson would be:  don't lose your employment insurance. In most cases that means don't lose your employment. Sure there is a way to continue that insurance (that's what I did) but it's not free. So you have to be able to afford it.

For therapy, I started with the best. When I switched to Medicaid (I wasn't Medicare eligible yet) it became poor. There was a lot less. Now, therapy is nothing...and I have both! (Only a minimal amount is provided at the beginning of your injury).  

It's good I started with private insurance. My situation was dire-to the point where when I reached a hospital I was air-lifted to a trauma center. I was
 lucky to be alive to receive surgery. Afterwards, followed a coma and more surgeries. (I obtained these records. I never opened my eyes at this place.)

I was transferred to a nice rehab with hospital. I opened my eyes at this place. I still had my insurance from my employment. (This meant letting all bills go to collections and using my Social Security to pay the medical.) This place followed all the rules. (I knew "the rules" from prior experience.) They soon noticed my progress. My progress was noticeable, but not fast enough to return home. I ended up in long-term care with death as the outcome. (Obviously, this didn't happen.)

What was a little different about me is my past. At the time of my brain injury, I was  currently employed as a behavioral therapist, but what they didn't know was what I did before. I ran an early intervention program for babies who would potentially be disabled. I was quite educated and experienced in brain development and disability. I managed to have all that knowledge still...trapped in a useless body.

Much wasn't expected from me. I wasn't even expected to breathe on my own. Well, I breathe. I do a lot of other things as well now. (It's funny to me that current Social Security is based on the records of the first hospital, and therefor I am in a coma.) On to what is needed, though, THERAPY.

http://braininjuryknow.blogspot.com/2010/12/rehab-at-home.html

 

This can be done on your own, at your own leisure, in your own home. I told you above I used to do Early Intervention. A part of this is being able to leave parents instructions of what to do for therapy for their child. That's what the above document is...basic instructions for you to provide therapy...a DIY.

You will need the help of a therapist to get started. A therapist starts the initial exercises. You periodically go in for  the therapist to check on how the exercises are going. Therapists can add to or take away exercises from the program.

This makes it a lot easier on the person who needs to receive rehab therapy. It also frees up therapists to work on what is needed. This is a low (maybe no) cost solution to the back-log of in-patient rehabilitation of brain injury. Instead of being put on a waiting list, a home program is started. (Out-patient therapy!)

Therapy is needed in order to rewire properly. How could they start something and not finish it?

In order for the  brain to rewire an activity, the activity must be done repeatedly. Norman Doidge gives a description of this when he likens it to snow skiing, but uses it to explain a bad habit. "Plasticity is like snow on a hill in winter. If we want to ski down the hill we can take many different paths because the snow is so pliable and plastic. But being human we tend to favour one path and pretty soon we´ve developed a grooved track, which ultimately becomes a rut that is hard to get out of." http://www.thinkbigmagazine.com/mindset/259-brain-changes-itself A habit is a habit; good or bad. Therapy does the same activity over and over the right way. It develops a habit (good). You could say it makes the groove in the snow deeper.

As far as proof of this thing working, I can only offer myself. The exercises are for therapies that stand on their own, OT, PT, and Speech. This thing has just become part of my life. I do it every day. I'm not slowly getting better. I am  slowly making my grooves deeper.

 

 

 

 

 

 

 

 

"Give Me The Beat Boys"

"Beginning to think that I'm wastin' time
I don't understand the things I do"

 

I could threaten to hold my breath until I die. You don't really, but it's scary. Whether or not I'm "wastin' time," I am getting things done.

 
It seems like a waste of time, trying to prove that I am truly conscious. Once PVS is always PVS. So I was once lacking consciousness, and therefor always will be without consciousness. This is why I can say I'm unconscious. (PVS is a disorder of consciousness, http://en.wikipedia.org/wiki/Persistent_vegetative_state ). Fighting on this one feels like it's taking a long time, and I am tired of that one. There are other issues I can concentrate on.

  

"I don't understand the things I do" explains my actions. I have no clue why. There are no antecedents, as I was in a hospital bed. I woke up and just knew what had to be done. I'm just doing it. So if you ask yourself, "Why"? The answer usually is, "She felt like it." That's one thing that the brain injury is responsible for...feelings. I don't try to explain, "I felt like it." So I go to what needs to be done....

People needed to understand what is happening to them.... I do my best to explain (from my point of view which may not mesh with yours.)

People want a quick cure.... Don't say it's not possible. It's just not available at this time. (Long ago, I tied my recovery to a medicine, http://thoughtfulveg.blogspot.com/2011/10/it-did-more.html and http://thoughtfulveg.blogspot.com/2012/01/i-meant-to-do-that.html. This drug class, not the same drug, has been linked to neurogenesis in other types of cases. I'm waiting for investigation. My recovery hasn't been quick, but it was at least accomplished in a lifetime.) 

People with brain injuries want to know what to do... I wrote http://braininjuryknow.blogspot.com/2010/12/rehab-at-home.html  (I didn't mean to, but I think this solves the backlog in rehab. It gives every single person on a waiting list an out-patient program to do while waiting.)

Just because I don't know why I do what I do doesn't mean that something  mystical is happening. It means I don't know why. I don't know everything.

For now, I'll just keep doing what I'm doing and Don't Ask Me why.

I do know one thing...I am experiencing this firsthand. My background and knowledge give this even more meaning. I am able to dissect it and then put it back together in a way others can get meaning and learn from it. That isn't a miracle. That's my own hard work.

Failure to Communicate

What we've got here is failure to communicate. Some men you just can't reach, so you get what we had here last week which is the way he wants it. Well, he gets it. And I don't like it any more than you men.

 

That I am still "vegetative" is questioned by science...not the government.

Governments and religions have changed their positions, but it happens far less often. Hopefully my situation changes before  I'm dead.

 

 

Updated 8/5/2015



Get Rid of the Word "Semi-Vegetative"

I was "semi-vegetative" at this hospital. This is the computer I did my first e-mail.

I've worked in home-based care, not hospital. When the "semi-vegetative" state was mentioned, I thought that this was only seen in the hospital. A person with this never would have made it home. Now at home, I had to look it up. It kept giving me persistent vegetative state (PVS).  Something wasn't right. I asked around. This state doesn't exist in the text-books. http://thoughtfulveg.blogspot.com/2012/02/talking-vegetable.html  

Here it is  I thought I moved up, and I hadn't. This is a false category...and a misnomer, too.


There is something that does fit this...

Behavioral criteria for the diagnosis of
Follows simple commands
Gives yes or no responses verbally or with gestures Verbalizes intelligibly Demonstrates other purposeful behavior, including nonreflexive movements or affective gestures that occur in direct relationship to relevant environmental stimuli, eg: appropriate smiling or crying in response to specific emotional stimuli vocalization or gesturing in direct response to linguistic content of questions directed reaching for objects that demonstrates a clear relationship between object location and direction of reach modification of touch or grasp to accommodate the size and shapes of objects pursuit eye movements or sustained vision fixation upon a external visual stimulus

^*At least one is required for diagnosis

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1071686/

(I didn't do all of these.)

What's the word I took out? It was "MCS." This stands for minimally conscious state. 

MCS is not PVS. MCS is more appropriate if I was able to handle money. Wait a minute! I was in a whole ward of people who were "semi-vegetative." Were all those people misdiagnosed? There's a problem in not being able to move up in PVS. 

Progression would be linear, and go from PVS to MCS...not to "semi-vegetative." It's not a giant leap. Just follow the textbook.

UPDATED 7/20/2018

*Note:  I wouldn't even be MCS anymore. I'm just physically disabled.

I'm Still a Vegetable...That Handles Money

"Thank you. You, too." I just placed my monthly medical order for my supplies. It's a common task. Other people with diseases have to order their supplies. For instance, that person you see on oxygen. The things needed don't magically appear. They are ordered, monthly in my case. My order consists mostly of my food. The person on the phone asked about my feeding tube and reminded me of the nutritionist on staff. I do fine in managing my daily heath needs. I'm also able to plan and care for my future needs by ordering ahead of time. I must be aware of my situation. I'm not classified as such, though.

So, the Centers for Medicare and Medicaid Services got back to me:

"We apologize if the response previously provided was for something that was already taken care of. You are correct that there is no rep payee and you still manage your own affairs."

I remain vegetative, yet can handle money? For years I have been dealing with the fact I am cognizant, but vegetative...and therefore I am a lesser person. It appears this will continue. You have the answer...I continue to be the talking vegetable. Nothing has changed. Social Security/the government continues to pay me, yet reserves the right to remove me from my home, and place me in an institution...because I am vegetative although able to handle to handle my affairs. They have to be safe in case I stop.

Government disinterest in my situation doesn't have to stop others from being interested, though. It actually opens my situation to the public. Technically, I am a free citizen. There is free enterprise, and my situation then becomes available to private institutions and individuals. In the meantime, I continue to document through photograph and narrative. As always, I stand behind open science. All I can say to the government is, "You snooze, you lose." Capitalism can take over now. (Capitalism is not a political system. It's an economic system.)

The step after this might be to contact the Social Security Administration. I don't feel like banging my head against a wall right now, though.

I'm attaching the interaction with the Centers for Medicare and Medicaid Services. It starts with, "We are very sorry you were misdirected so much. OCR made an error in referring you to CMS." They don't even know what I am supposed to do. All I can do is reiterate my very last statement in the e-mail:

Again, I am misdirected and it is things like this that continue to make it appear that I am the one who is inept. For some reason it is believed that a person in PVS is unable to recover mental function. I recovered that long ago. It has been motor function in my case. I continue though, to receive treatment as if it is my intelligence.

From: 
To: "angelar70@att.net" <angelar70@att.net>
Sent: Mon, February 4, 2013 10:39:44 AM
Subject: changing your representative payee

Dear Ms. Ronson:

We are very sorry you were misdirected so much. OCR made an error in referring you to CMS.

The only agency that can help with your change of rep payee question is Social Security.

The below is from their website:

“You have the right to receive your own Social Security check unless SSA believes you are not capable of managing or directing the management of your money.

If you have a representative payee because of a physical or a mental disability, in order to become your own payee, you must show SSA that you are now mentally and physically able to handle your money yourself. You could provide:

a. A doctor's statement that there has been a change in your condition and that the doctor believes you are able to care for yourself; or

b. An official copy of a court order saying that the court believes that you can take care of yourself; or

c. Other evidence that shows your ability to take care of yourself.

Note: If SSA believes your condition has improved to the point that you no longer need a payee, we may reevaluate your eligibility for disability payments.

You have the right to appeal either the decision that you need a representative payee, or the person or organization SSA has chosen as your representative payee. You have 60 days to appeal a decision by contacting SSA. Please contact your local Social Security office or call Social Security at 1-800-772-1213 for more information.”

Health Insurance Specialist

Division of Medicare Financial Management and Fee for Service Operations

Centers for Medicare & Medicaid Services (CMS)-- San Francisco Regional Office

90 - Seventh Street, Suite 5-300 (5W)

San Francisco, California 94103-6708

Telephone: 415.744.3671 Paper Fax: 415.744.2706

My direct paperless fax: 443-380-6248

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Re: changing your representative payee

From:	Angela Ronson

I am not changing representative payee. I don't have one. This was taken care of yrs ago. http://thoughtfulveg.blogspot.com/2012/11/competent.html What this says is I can handle my money, yet I remain vegetative. Social Security pays me, yet reserves the right to revoke that, remove me from my home, n place me in an institution. I have been in my own home since 2006.

Know that I made the above letter a public document, and any future e-mails I receive have the potential for being made public. Also, I am cc'ing this e-mail to various media.

For yrs I have been dealing w/ the fact I am cognizant, but vegetative...n therefore I am a lesser person. Due to this prior treatment, govt communications are being made public. It is unfortunate this behavior is not seen as discriminatory.

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followup........RE: changing your representative payee

From:
To:	Angela Ronson <angelar70@att.net>

---

We were responding just to a referral from the Office of Civil Rights about the letter you had attached and provided to them regarding a rep payee. The letter you sent to OCR dated January 24, 2013 was not clear as it implied that the rep payee situation was not taken care of.

We apologize if the response previously provided was for something that was already taken care of. You are correct that there is no rep payee and you still manage your own affairs.

If there is a current Medicare problem you have, please let us know and we will try to assist with that.

---

Re: followup........RE: changing your representative payee

From:

Angela Ronson

The letter n e-mail were made public, http://thoughtfulveg.blogspot.com/2013/01/regrettably-matters-you-raise-in-your.html n u can read them for yourself. A representative payee situation is never addressed.

My original statement to anyone medical:

I am vegetative, PVS. I know that this is unusual for you to be getting this, but technology now makes this possible. You will notice this complaint is all electronic. I have worked for years to get one finger to be able to type. The above goes to something I wrote. I have had a consciousness disorder. There is nothing wrong with my cognitive skills. I continue to have problems with speech and movement...not cognition.

Again, I am misdirected n it is things like this that continue to make it appear that I am the 1 who is inept. For some reason it is believed that a person in PVS is unable to recover mental function. I recovered that long ago. It has been motor function in my case. I continue though, to receive treatment as if it is my intelligence.