Best Christmas

"I haven't had a Christmas like that since I was 7!" My 17 year old was telling me about her Christmas. She went to a friend's house. I later went to the hospital.

Normally my kids are home for Christmas, but the oldest was using the break from school to move, a good reason. Besides, I wasn't this year. That just left my youngest to fend for herself. Thankfully she had my nephew. This was better than Christmas 2002. I don't know what they did that year. The week before Christmas, I had a stroke and a car accident. I was in a coma and they were probably miserable. They might not have even had one that year. The next year wasn't any better.  My ex-boyfriend had them and wouldn't let them see me. They probably celebrated with his slipper (hitting them). I had been (through an attorney paid for by my mother) fighting for custody to be given to my sister. She didn't get them until that January after Christmas. We had our Christmas then.

When they were with my sister, I got to see them every Christmas; school breaks, too. Then last year-our 1st Christmas together as a family. I was finally free of the hospital scene, and I had custody of my children. It had been years since we had a Christmas as a family. (Just in time for one to leave.) We weren't together like that since they were 6 and 7.

My daughter was telling me her friend woke her up, "Do you know what  day it is?" There were  stockings and  presents. She kept saying she wanted to cry. It was her best Christmas since she was 7. I was the one who wanted to cry. I had ruined her previous 9 Christmases (it's now 10 for my other daughter).

My Interview on Neuroflocks

The whole thing can be found at http://www.sciple.org/neuroflocks11/interview.html.

Hello Angela! What is your background?

I'm surprisingly highly educated for a patient. My education is also in the area of my injury.

I have a BA in Psychology and an MA in Special Education. When my accident happened, I had just started as a child behavior therapist for Sierra Co Mental Health in CA. Prior I had been the program manager of the Stockton, CA UCP Early Intervention program. At that place I worked with babies who had brain bleeds. I knew my prognosis, and it wasn't good.

Among your published papers, which one is your favorite?

About Me: Angela Ronson Part 1: Not a Vegetable at All, but a White Crow, by Dr Melvin Morse. This is the first in a series of articles he did on me. There are links to the others here:.

I did: What Kind of Vegetable Am I? in Stroke Connection Magazine, July/Aug 2009. This is the 1st part of 'What Kind of Vegetable Am I?' ... which is a published on-line support for rare neurological issues.

I also maintain 2 blogs: Know How which is for persons with and those helping persons with brain injury.

The Thoughtful Vegetable. These are thoughts, ideas, and any info not useful to a brain injured patient. Info useful to the doctor may be in here.

Actually, music plays a big part in all this. I participated in The Healing Arts Program (music) at El Camino Hospital. If you learn more about me you'll find that my grandmother was a piano teacher. I play piano, guitar, and trumpet. I took years of piano lessons. My current interest in music here.

What drives you in your day-to-day life?

What got me started was basically being told I can't do anything. I have an "I'll show them" attitude. Also, I saw the others who had no clue what was going on. Not only were they told they can't do anything, but they didn't know why.

What is the most exciting part of your life?

That would be the comments I get from others. The best comments from people are the ones that say I taught them something, or a brain injury isn't the end of the world.

The least exciting?

The least exciting would be my personal care.

Sci.Ple: Name a scientist whose research inspires you

This one I had to think about. It's not a particular scientist that inspires me. It's not a person, but the concept-to be inquisitive and learn. And then, it's never giving up. A scientist like this was Thomas Edison. There's a lot more, but he is the famous one and people would know about the scientific drive he had after a 100+ tries.

What are the next frontiers in neuroscience?

"The next frontier in neuroscience" is duplicating what happened in me in others who are not expected to live.

Grow A Brain

I may be getting ahead and already want to duplicate, when it's not understood all that's happened with me. First, watch the above if you don't know what Early Intervention (EI) is. Then read http://thoughtfulveg.blogspot.com/2011/09/they-are-neuroplasticians.html I was the equivalent of a Developmental Specialist. I was actually a program manager of an Early Intervention program, and that took a little more working knowledge. Jumping ahead without knowing why is intrinsic to Early Intervention. Early Intervention produced positive results, so that was the reason why it was done. So, like that, I can be the reason why until what happened in me is solved.
 

An SSRI, and then a few years of a Developmental Specialist can be done after a brain injury. The med seems to start the cells. The Developmetal Specialist nurtures the cells and helps develop them. What way better to grow a brain than to have a person who does this already? (These young children have young brains. The Developmental Specialist just nurtures and guides the cells.) They also deal with a-typical development and know about a lot of the problems encountered.
 

As I rehab my right hand (yes, "rehab" after 9 yrs) this makes more sense. First of all, with a brain injury there shouldn't have been any movement. There has though, I talk about re-gaining movement in http://thoughtfulveg.blogspot.com/2011/08/neurogenic-therapy.html. I've nurtured those original cells into the next step. Going on to the next step so it is. I've nurtured this little bit of movement, and now it's on to bigger, functional movements. That's why I work on a peg board, https://plus.google.com/u/0/114061315171466252323/posts/QG1s4pL76hY. Wait a minute! First that hand didn't move, then some movement, now pegs? This would be progress. It's not progress you would see daily in the hospital, but yearly on an annual visit.

This slow progress takes you to the brain. What infant has an adult brain and does everything an adult does? It takes time for a brain to grow. This type of therapy http://thoughtfulveg.blogspot.com/2011/09/they-are-neuroplasticians.html helps grow those cells into something functional, a brain. It's the same then if replacement cells are started in the brain. There isn't an "instant grow" for them, and nothing exists yet that puts full-grown cells there. Brain transplants don't exist.

Still Getting Screwed

In the hospital I lost my health insurance. This happens if you have a major injury that can't be fixed right away and you can't return to work, if your medical insurance is through them. But you think, "that's  no worry. I pay Social Security. I see it on my pay stub." It takes a couple years for Medicare to kick in.

Luckily, there is Medicaid. (I found out Medicaid is NOT in every state. So these people are screwed.) So I had Medicaid and it was awful. I did what I call the "Medicaid Shuffle"-I went from one placement to the next. I saw 5 hospitals, 2 nursing homes, and 1 long-term care facility in 2 years. I managed to stay the last year in the same place until it closed the unit where I was. I was then able to manage a transfer home.

I now have both Medicaid and Medicare. Things are better, but not much. I'm lucky in that I know what I need. Most aren't like this, though. Then I read this in a UCP newsletter:



California Dual-Eligibles Cite Problems with Getting Care
Patients that are on both Medicaid and Medicare in California are running into issues when trying to address their care. California has almost 1.1 million “dual-eligibles,” who account for some of the most expensive health costs around the country. The government must spend so much money on duals because of their illnesses and disabilities. Patients who are duals often bounce between the two plans and often receive unnecessary, duplicative and poorly coordinated services. They cycle through emergency rooms, hospitals and nursing homes more than other Medicare or Medicaid enrollees, according to the Kaiser Family Foundation. Even U.S. Health and Human Services Secretary Kathleen Sebelius has acknowledged that the navigation between Medicare and Medicaid programs is “quite difficult and ineffective.” Starting in 2013, California state will begin a trial that will shift several hundred thousand duals into managed care plans that serve their needs. Click here to learn more.

It Did More

 

Early on  I was put on a depression med, an SSRI. In retrospect, that medication did more than stop a current behavior. I took one during the course of my brain injury, Celexa. Here's my comment on another site: http://twextra.com/ajbk1z

On Twitter there was a Tweet on neurogenesis/depression that got me thinking. When I 1st came out of coma, I couldn't do anything but open my eyes (prolly only my lt eye). A while later (maybe a month)  I could move my head. I couldn't talk. It had been explained to me the AVM was still in my head. It had only "leaked." It couldn't be removed due to size n where it was. When able to move my head, I started shaking it. Doctors knew what I was trying to do-I was gonna make it bleed so it would kill me. They put me on Celexa, an SSRI or anti-depressant. I must have stopped shaking my head soon after cuz I don't remember doing that anymore. That was the beginning of 2003, and I was weaned off (can you believe I was the psych consult?) in 2005/6.

If I hadn't been given that medication would I be able to write this?

There are reports of SSRIs increasing cognition: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2656299/; http://hddrugworks.org/index.php?option=com_content&task=view&id=203&Itemid=119; http://www.sciencedaily.com/releases/2010/02/100201171523.htm I could go on. There are so many reports.

This document would just be an example of an SSRI's effect other than the immediate reduction of depressive behavior.

Occupy Brain Injury

Again I looked to see if anything has come out on this movement and the brain injured community. Again nothing. But this time something new, the vet that was injured in the Occupy Oakland incident received a brain injury.

Doctors in Oakland, California, are struggling to save the life of an Iraq war veteran who has become a rallying cry for the Occupy Wall Street movement after he was badly wounded in clashes between protesters and police.

Scott Olsen, 24, a former US Marine who served two tours of duty in Iraq, was struck in the head by a tear gas canister fired by police trying to prevent protesters from reclaiming a public square, protest organisers said. http://www.stuff.co.nz/world/americas/5866509/War-veteran-hurt-in-Occupy-Wall-Street-protests

Why is this movement important to the brain injured community? Not because of incidents like this. Last weekend there were local protests and a woman spoke of  an issue so many brain injured have dealt with. She had to move from her house to a "small apartment in the ghetto" just to pay her medical bills and feed her family.

Fine Motor

Why am I updating fine motor? I believe my right hand will be doing like my speech. I was never supposed to talk, but I do. I was never supposed to move my right hand, but I do.

 

In the Developmental Profile http://thoughtfulveg.blogspot.com/2011/03/developmental-profile.html I only had:

 

In fine motor, I use an inferior pincer grasp, or thumb against the side of my index finger. Usually, we see the neat, where one is nit picky. One thing to be noted, I'm now left handed. I was right.

There was a time when my right hand did nothing. My whole right side was paralyzed. Later, I was able to move it, but my hand was fisted. I searched through old pics. I found this one. It was taken without a thought of my hand. You can clearly see my right hand is closed.

A short while ago, I did this, https://plus.google.com/114061315171466252323#114061315171466252323/posts/P8PwAzowrny At that time I was at 2 rows. I'm now at 5. If you count, there are only 5 rows. So I'm doing the whole board. With my right hand I take out the pegs and put them in a container.

 

Working My Way Back To You

Do you remember this?

 

That's a bit like what I've done. There isn't any technology, though. I'm all natural me. I have used technology. I've used it to communicate. Like right now to type this I've used one hand, yet I've done things requiring two (like capitals).

It has probably taken me so long because it is natural. It has meant doing the same thing everyday for the last few years. A special education teacher who has had  the same student for 5 yrs would know what I mean. Ask any PT (or an OT, or a special ed teacher) you will make progress, although it may be slow.

That's what I am doing with my motor skills. I am slowly making progress. But my cognitive skills are a different story. Cognitively I'm okay.You're supposed to be messed up after a brain bleed like mine. I'm not, and in some ways "better than before (like the video says). That would have to do with re-wiring, which takes more time than allowed by current insurance for rehab.

Now, I'm just working my way back.



Early On



Last Hospital

Now At Home

Before



You can see I'm getting back (You can actually see it in photos!).



Why ART?

Turning started in the hospital. I couldn't yet talk or move, and as required by hospitals, patients must be turned to prevent pressure sores. I managed to indicate which side to turn on, usually by turning my head to the way I needed to go. Initially, I was keeping track because of the pressure sore procedure. Eventually, I could move again, and this procedure wasn't needed. I kept it up, though, for this reason http://thoughtfulveg.blogspot.com/2011/08/neurogenic-therapy.html.

  

At some point I remembered a conversation about "positive pressure" and a goal of physical and occupational therapy is weight bearing. A person might get 15 min of this "positive pressure" in a therapy session. Wouldn't it be even better to get 8 hrs of positive pressure?

 

So I continued to sleep on my side. My left side was moving. My right now was barely. This works on the brain, though, so I kept it up. I would put my new found movement to work. Range of Motion exercises went from passive to active. Then that arm got included in Physical Therapy exercises. Right now, I've added pegs https://plus.google.com/114061315171466252323#114061315171466252323/posts/P8PwAzowrny. I'm up to almost the whole board now.

 

I would say ART works. For me it has not only restored movement, but made what is there better. Initially, there was no movement at all on that right side http://www.nxtbook.com/nxtbooks/aha/strokeconnection_20090708/index.php#/10/OnePage. So shouldn't I stop now? Maybe I want to see how far this takes me, but for now, goal accomplished.

.

Right hand is fisted.

Right hand is functional.

They Are Neuroplasticians!

For a long time I have been torn by the job of the Early Interventionist, the Infant Development Specialist (IDS). That person is both an educator and a therapist, which gives way to clinician, but they are not seen that way. Often they are "just the teacher." Yes, quite often it is the pre-school special education teacher.

These people are a little different, though. First, they have to take what the doctor said and put it in simple terms for the family. So they have to know a lot. There is a lot of parent education. Not only do they work with the child, but they work with the family. They have to know the physiology and biology and the major workings of the brain. They then have to take that knowledge and be able to relay it to someone who may have only had high school biology...or worse, that person who needs to know doesn't speak English and the interpreter must also understand in order to interpret.

Another big issue is these people will do therapy. Say one of them has 10 children and only 1 receives OT. The others need it. So the IDS arranges for his/her visit to be at the same time as the therapist. After observing (the IDS watches and learns from the therapist), the IDS can then use those same techniques on the other 9 children. Not only does this person learn what is needed for the child being observed, but learns techniques that can be applied across the board. The same goes for speech and PT.

So you can see at least half this person's job is clinical. They do more than "just teaching".

Recently I saw something on neuroplasticity, and it occurred to me. They are neuroplasticians! They don't even know it. They work with babies to minimize disability. They are actually helping to re-wire the brain around the disability.

Of course a child with a moderate disability will end up with a mild disability. That has been documented, but it wasn't known why. Well, here's why-the current neural pathway met up with the disability. The IDS made a new pathway around it (or as far away from it as possible). The child uses the new pathway and either doesn't appear to have the disability or the disability is greatly reduced.

The IDS doesn't start seeing a child with the intent of re-wiring the brain. Understanding and coping may be the beginning, and it can be a long process (years even). But, what is the 1st few years of life compared to the next 60-80?

So these people (the IDS's) are both, teacher and clinician. They are neuroplaticians. It would take a biological understanding as well as an ability to teach. I'd venture to say that many special eduction teachers of older children are the same. It's just by nature that this age group is the most plastic, therefore putting that demand on the involved person, the IDS.

Flagpole Sitta

This is an early picture. I might have still been on the ventilator at night. I know it was before talking.
 

I don't understand why so much attention was paid at first when I started making sounds, now nothing. Movement, too. What is "recovered quadriplegia"? That was the diagnosis on a referral. I've never seen that as a diagnosis. Whatever it is, I have it. And cognition? It doesn't take an IQ test to see I wrote this. Is everyone just waiting for me to fly? I'm now thinking that's not good enough.

The Description

This isn't like anything I've ever seen or dealt with. I'll describe it as best I can. I did a developmental profile http://thoughtfulveg.blogspot.com/2011/03/developmental-profile.html, but I find that to be lacking in some areas.
 

I'll begin with the injury. It's mostly my account, with some bits and pieces from friends and family as I was unconscious for parts. I had a severe brain injury and was in a coma. When I woke I was brain dead and tetriplegic (could only open/close my eyes) ...then quadriplegic...then hemiplegic...then hemiparesis...now left-handed (was right). I couldn't talk, and I had dysphagia. Now I talk and orally take Ensure (just a little). I obviously am not cognitively impaired (surprising considering the severity of the bleed). I've been in 5 hospitals, including Stanford, where the embolizations and last craniotomy were done. Also, there has been a sub-acute hospital and 2 nursing homes (licensed and not) from 2002 to 2006. I now manage in my own home with a home care person that visits and is funded by a state program.

I had an AVM bleed. It was located in the cerebellum, right next to the pons, and the way it bled was also like a brainstem bleed. Although I immediately sought medical attention at a clinic, I wasn't taken to a hospital for surgery until hours later after I lost consciousness. After surgery, I remained in a full coma for 5 weeks.
 

Throughout all of these years of recovery, progression has been slow. The first year was faster, as I had private insurance, but has slowed to a snail's pace with switching to government assistance. It is still progression, and hence, I would call it recovery.

In the first year I was like

The person in the video was Jean Bauby, the editor of Elle magazine. He wrote a book using one eye. I now write using one finger. It is much faster. 

I'm not like that anymore. My progression can be seen here http://www.flickr.com/photos/angelar70/sets/72157625839268830/.

So,  initially coming out of a coma I could not move or speak. I could open my eyes and I could hear. (The latter part of the coma I could also hear.) It took intensive rehabilitation to be able to sit in a wheel chair (as opposed to laying in bed). That took a specialized wheel chair and a contraption called a "head positioner." One thing I think should be noted, all medical issues had to be dealt with and close to resolved before working on developmental skills. Before I left the rehabilitation hospital I started making sounds. They scoped me-put a camera down my nose to look at my vocal cords. All was found normal. Nothing more could be done as my insurance had run out and I switched to the government Medicaid program.

I had to leave that hospital. I went to a nursing home on the other side of the state. It was a drive for her, but a sister did visit. After a few months, that care home moved me to an unlicensed home. I got sick. My mother had to drive a few hundred miles to come get me and take me back to the hospital. I had pneumonia.

Another placement was found after that. I was there even less time before ending up in a hospital. This time no water. The owner of that place was already in jail as I understood, for fraud. That place was already sanctioned, and a state investigator came to ask me questions. I was there only 2-3 months.
 

Something else was going on. A week before I left that place, I started the process at Stanford for removal of the AVM. Up until this time it had been growing to pre-bleed size. The idea was simple enough-there would be several embolizations to shrink the AVM. It was too large to be surgically removed. Once small enough, a craniotomy would be done. This process was successful and spanned 2 months. It took 3 embolizations before a craniotomy.

When finished I was at a different hospital, not the sanctioned long-term care facility. I was in this new hospital the longest from 8/2004-3/2006. I got my trache out there.  After there, I only moved because that particular hospital unit was closing. (I probably could have remained hospitalized another year.)

The trache was in at this time, but I was completely weaned from the ventilator during the day. I was on it at night.

Had surgery to close trache hole that wouldn't close on its own.

Now I live independently. I rent a small house next to family. I have a home health aide visit 3x/day. I've received the maximum in Outpatient Rehabilitation that Medicare allows. I know it's not enough, but I am afraid the public doesn't know. So I've written a detailed description of what to do http://braininjuryknow.blogspot.com/ I mostly want http://braininjuryknow.blogspot.com/2010/12/rehab-at-home.html to be stressed.

So, I continue on my own with no one's help (although that would be nice). Where am I now?

I'd like to stress- I AM NOT FOLLOWED BY ANY DOCTOR OR ANYTHING MEDICAL Since I am the closest thing to a professional, and have all my mental faculties, I will document as much I can and make it public on the internet (I shouldn't). Also, I believe this to still be recovery from the initial injury. Biological stability isn't enough. Since the brain is involved, there must also be developmental stability (and there hasn't been in my case).

* UPDATED 11-7-2012
* UPDATED 7-20-2015

Neurogenic Therapy

Is Angela's Rest Technique (ART), http://thoughtfulveg.blogspot.com/2011/06/angelas-rest-technique-or-art-of.html, neurogenesis? It basically puts movement where there was none. And it does so by working on the brain.
 

Now in order for this to work, there shouldn't be any spinal cord damage. Also, there shouldn't be any physical impairment in the desired area. Something like a straight forward brain injury would work best.
 

I'm thinking that the area that does not move is not paralyzed, but most likely needs re-wiring. "But there's no movement at all." Well then, take and move it. Train it. Use your good hand to move it, or have somebody else do it.
 

I don't remember which, I believe it was a video, Edward Taub described micro movements that we couldn't see were behind his Constraint Induced Movement Therapy.  (CIMT). This would take that theory one step further. I'm proposing there doesn't need to be any movement at all. Not even micro movements. I believe all there needs to be is a working brain and working parts. The desired movement had to exist prior to injury, thereby laying the foundation for the new movement. (The movement isn't actually new. Just getting it done is.)
 

The reason ART works is the brain is constantly bombarded with natural information, but in a way that the brain has to deal with it. ART uses body weight and gravity. Those forces cause the brain to re-wire/make neuropathways to deal with the information coming in (gravity pulling body weight against an area that does not have neuropathways). Also, the involved area must not be impeded such as Spinal Cord Injury or physical deformity.
 

Because gravity is involved, it also develops proprioception. The person would develop their sense of their body in space. http://dictionary.reference.com/browse/proprioception
 

Again, I will use myself as the example. I have pretty much been doing ART and there is now movement. Instead of it being a miracle, the blueprints were already there, it just needed wiring. The basis for movement was there as I was able to perform the desired action prior to injury.
 
Because this process works on the brain, quality of movement would continue to improve. The neuropathways involved would become stronger. If this is used after movement starts, movement will improve. I also recommend adding physical therapy at this time. (I continue to do this and the quality of the movement improves).

An Attitude Adjustment

1.) Kaiser sux

2.) no case management offered for TBI (traumatic brain injury) unless in-patient, intubated, etc.

3.) OT and ST is part of the cadillac of treatment for TBI

4.) PT exercises will not work when not based on documented nerve abnormality

5.) what's happening to me (medical neglect and exploitation, not being treated for TBI appropriately despite making monthly medicare and insurance payments) is the NORM FOR HOW TBI'ers ARE TREATED -Joy Taylor

This is a common feeling with HMOs. The feeling, though, goes beyond the HMO, it's a reflection of society. That person has had to deal with other issues, and now the HMO issue is personal. Brain injury is an invisible disease and is treated as such by society, by this HMO. Just because you can't see it, it's not there? Or worse, it's a brain injury, so one is now mentally incompetent.

I'll use myself as an example since I am the worse case scenario I know of. Could a person having such a terrible brain injury be so mentally incompetent they write and put together http://thoughtfulveg.blogspot.com/2011/08/ask-retard.html? Look at the title. I, myself, have dealt with this stigma society has. It went all the way to the hospital...my friends...my family.

I still had my mind though. Just because my body reflected this injury doesn't mean the social attitude is right. For now I will smile and nod. Then I will write about it. Those who read it will think, if someone who had it so bad can write about it, then maybe someone with a lesser brain injury has feelings? Maybe they deserve better treatment?

Disability is discrimination. Disability is impairment, it's less. Even in oppressed groups of people, the disabled are seen as less, not only oppressed, but oppressed AND disabled.

Ask The Retard

* [If you refuse to read this because of the word "Retard" in the title, you are missing the point. I only refer to myself as that. If I am so brain damaged, how could I write this?]


Was my glass half empty or half full? I was housed with the "semi-vegetative." I took this to be semi-conscious, and therefore saw my glass half full. Others didn't. "Semi-vegetative" was no more than a vegetable. A semi-PVS. The idea that "mental capacity [is no more] than a corpse" (http://blogs.discovermagazine.com/notrocketscience/2011/08/02/deader-than-dead-people-in-vegetative-states-are-viewed-as-deader-than-corpses/) existed. Yes I recovered mentally (not motorically), but I've been viewed as a retard. When I began to talk, it was like "Don't listen to her she is brain damaged". Maybe instead of what everyone "thinks", they should just ask the retard.

PVS can be a fate worse than death, especially when you understand, as I did.

I guess PVS is one step beyond that. When that movie was made, hope was a dream. Well, dreams can come true.



"I'm not a doctor, but I play one on TV."

Actors memorize the lines. Doctors do the critical thinking needed to solve the problem.

Learning by repetition, this is rote learning! Memorizing those lines, that's also rote learning. As seen, this is also the best method for re-wiring.

Rote learning is a learning technique which focuses on memorization.. The major practice involved in rote learning is learning by repetition. The idea is that one will be able to quickly recall the meaning of the material the more one repeats it. (http://en.wikipedia.org/wiki/Rote_learning)

I've stated this is the best method of learning with a brain injury. Here's why. Input is the same. When building a neural pathway, repetition of information/stimuli coming in is the same. It has even been shown in mice, you get the better response for repetition. "The results indicate that neuronal network activity including inhibitory interneurons rather than exclusively the input or spiking activity of the principal neurons determine a BOLD response to repetitive stimuli." ( http://www.jneurosci.org/content/29/8/2428.full ) This repetition makes a stronger pathway.

I'll make this a lot easier by likening it to Norman Doidge's metaphor of skiing down a hill of snow. The first time down you make the path. Each trip thereafter makes your tracks deeper. Repetition is the act of going down the hill again. This deepness makes the path more likely to be used.

Rote learning is needed to make a neuropathway.

All About Me

* UPDATED  3-20-2014
  

I'm a pirate! "Arrr...."

Not really, but sometimes it looks that way. Social media has it set up so that you can have a free profile and a few extras. Like a pirate, I take full advantage of this. I started with  a profile at MySpace, http://www.myspace.com/angelar70 I also had  a group there. It became one of the largest. As social networks can go, though, most of this did. MySpace closed all its groups.There was a large exodus of people from MySpace. Luckily, I had something set up at Facebook, https://www.facebook.com/people/Angela-Ronson/1064010358 This has now become a major source of brain injury dissemination of information. I also had a Twitter, https://twitter.com/#!/angelar70 Twitter has become a source of connections. It's also where you can see the latest me, usually daily, sometimes hourly. My latest venture is the new Google+  https://plus.google.com/114061315171466252323/posts

Knowing that things can disappear, I looked for something that should last for my blog. I chose Blogger by Google, knowing Google was a large, strong company. I currently have 2 blogs going, http://braininjuryknow.blogspot.com/ is sort of a 'how to' for other brain injury sufferers. It gives directions, suggestions, concerns, etc-the things a person (or family) with a brain injury need to know. The other is http://thoughtfulveg.blogspot.com/ which is thought, theories, and whatever else.

So who am I?

This is a picture that is more current. This next one is from early on in the injury. I had to get special permission to leave the hospital to attend a birthday party at Chuck E. Cheese, and my mother had to get special medical training.

.

This is me before the injury. I'm almost back to that. (Just a little older)

A person like me shouldn't be able to do any of this. My initial account of my injury is in http://www.nxtbook.com/nxtbooks/aha/strokeconnection_20090708/index.php#/10/OnePageTechnically, I should have stayed in the hospital another few years and gotten out much later, if not still be in a care situation. I was aware enough   to live on my own and didn't want to make another Medicaid move.

Before all this happened I worked in disability, primarily children. So I knew what services there were... and were not. I knew adults had less. As I've found out, if your disability happens as an adult, what's there is almost nothing.So, I could find what I needed, but being able to express that was an issue  as I could only make sounds but  not speak.

This leads me to my condition. If you want to know what happened it is stated in  http://www.nxtbook.com/nxtbooks/aha/strokeconnection_20090708/index.php#/10/OnePage I wasn't medically stable. Sure I looked fine most of the day, but it was like a gamble in the next minute as I might need life saving procedures. Especially when I still had that thing in my head. (I had an AVM that could  bleed in my brain.)

I started out only able to open my eyes. I could hear, though, and understood.(I understood more than thought because staff didn't know my training.)  I started moving my left-not that great, but it moved. It's taken some time to get it purposeful. Right before I left that rehab I started making sounds. They must not have believed their ears, because they put a camera down my nose to look at my vocal cords. That was one of my last speech sessions for years. I left that hospital after a few months when my insurance ran out. I then began a trek across my state going from place to place because I had the government's medical coverage and a permanent placement couldn't be found. In my total time I was hospitalized, I saw 5 hospitals, 1 long-term care facility, and 2 nursing homes (licensed and not). I'm now in my own home. (I do want to state that unlicensed is illegal and don't take your chances.)
 

When the long-term care unit in a hospital I was at was closing, I took the opportunity to push for going home. Like I have said, I could have stayed in a little longer, but you can see I'm alright. Not only alright, but considerably improved. I've taken to the internet. It's quite lengthy now, but I started at the University of West Georgia's. It had a rare neurological disorders group. At the time there wasn't much. Now there's a lot more. Since then, computer technology has grown, and so have I.


*  That picture of me before my injury is just what my appearance will closely be like. I will just be older and have a hole in my neck. What you look like on the outside is not necessarily what's going on in the inside. What's going on in my head doesn't look like that picture. The last ten years doesn't look like that picture.
  
*  A picture of me in the last year (this is 2013). The link in the comments:

 

Aha!

I had an "aha moment" while writing this comment:

Okay. The hospital I was at had me classified as "Semi-Vegetative" I took this to be semi-conscious, and a good majority of ppl with brain bleeds experience a similar state-MCS or Minimally Conscious State. I looked into "Semi-Vegetative." ...It's not MCS, but PVS (Permanent Vegetative State). Schiavo was PVS. (BTW I still have my feeding tube.) The govt had us believing it wasn't possible for someone who is PVS to recover. That's how they validated her death. No wonder why I'm having such a time, and I'm still recovering.

I'm still recovering! It makes sense, and I had to go back to the definition.

.

You see, we don't really know what recovery will be like from PVS. I've been mostly compared to the usual TBI, and I am a miracle.  What if I'm compared to other PVS recoveries?--Oh wait. There are no others. If there is no comparison, then I set the standard. Instead of many miracles, there's just one-that I'm the first.

 Progression

Notice the trache is gone

 Standing

Pushing up to stand

Standing with a walker

Even years later there continues to be progress. Maybe this progress continues to be recovery. We don't know. Instead of miraculous, it's a learning experience.

Learned Non-Use

To know more about making a neural pathway, you need to know about not making one.

"Research on monkeys with a single forelimb from which sensation is surgically abolished demonstrates that such animals do not use their deafferented limb even though they possess sufficient motor innervation to do so, a phenomenon labeled learned nonuse."  ( http://www.ncbi.nlm.nih.gov/pubmed/17039223  ) In this case, a neural pathway is not made.

So 'use it or lose it.' It's pretty much the same with everything else you do. Take for instance the 1st time you made scrambled eggs (not everyone can do this), you started the process of learning how. The next time you did it it was better. Now you are an old pro. You made neural pathways. Then there's never did it-never will. The person may have the ability, but that was not needed and never learned. There was learned non-use.

 Now the following is amazing to me.

I guess everyone has the ability to play guitar with their feet. He's the only one I've ever seen who can do this.We all have learned non-use. He developed pathways for his feet to play a guitar.

We Suck

This is in reference to http://thoughtfulveg.blogspot.com/2011/05/neurological-epidemic.html

When I say the government dropped the ball with me, I'll explain my situation, and then let you come to your own conclusion. Some may have harsher words. I use myself as the example, but there are many Americans with whom the government "dropped the ball." Many of them don't understand why.

When I started I was working  I tell my story in http://www.nxtbook.com/nxtbooks/aha/strokeconnection_20090708/index.php#/10/OnePage Since I was working, I had good insurance. I went to a nice brain injury rehab connected to a hospital. But that insurance didn't last. Right before I left I started making sounds. This was a big deal scientifically. That hospital had me scoped - they threaded a camera down my nose to my voice box.  They were doing the scientific research. Then the research stopped. My insurance ran out. I switched to the government's Medicaid program (Medi-Cal in CA).

The government took over and I wasn't the subject of interest anymore. No more research. I began the "Medicaid Shuffle" - I moved from place to place as I wouldn't qualify because I gained more skills, or abuses removed me, or the economy forced the place to close. It was no longer about research. It was about survival.

So I got better on my own. I did my own research. I'm giving my knowledge to the others out there who also don't have anything. (Oh, and excuse me on the documentation. I did the best with what I had. This is all from a psychologist's point of view not only because of my background, but as a medical doctor I definitely wouldn't have access to equipment. The same goes for therapy-crappy equipment, not all the equipment I needed, and the lack of a skilled set of hands.)

I didn't even talk about Medicare. Hey, that's what everyone is working for. Well it's only a step up from Medicaid. It's crappy too. It's also government. In the next paragraph I mention the government dental plan. Medicare don't worry. You don't even have one.

To Medicaid (the government) research isn't "medically necessary", just like teeth. Toothache? Pull it. Put your food in a blender, stick in a straw and suck it. That should be the government's new slogan, "We Suck."

WE SUCK

Angela's Rest Technique, or, The ART of Sleeping

This is rather simple. I and a few others have done it with success, but it is yet to be studied. If it does or does not work for you please contact me or leave a comment here.
 

Everyone sleeps. Sleep on the side that doesn't move. That's simple enough. I recommend  alternating nights  so a preference doesn't form.
 

Here's the reasoning: constant information (input) is presented to that side and the brain deals with it by re-wiring. Constant information comes from body weight and gravity. The force of gravity puts constant pressure on the body. Sleeping on a particular side concentrates that force. As a result of the person receiving constant information on the affected side, the brain grows new neural pathways. These pathways not only deal with  the information, but are responsible for movement.

This would not work for Spinal Cord Injury, or anything that would interfere with movement.
 

Once there is movement, even the smallest, do it again and again.

It's A Critical Time

I remember long ago something about a critical time for learning. I looked some and found http://en.wikipedia.org/wiki/Critical_Age_Hypothesis. This is in speech. "The hypothesis claims that there is an ideal 'window' of time to acquire language in a linguistically rich environment, after which further language acquisition becomes much more difficult and effortful."

I propose something similar. There is an ideal window of time to acquire any skill that has accompanying neuronal development. As a neuropathway is made, the skill is acquired and becomes refined.

To illustrate, the following pictures are of me performing "Pucker" and "Smile",  exercises 2,3, and 4 of  http://braininjuryknow.blogspot.com/2010/11/oral-motor-exercises.html. This my Pucker at first:

I had stopped doing the Oral-Motor Exercises after talking. I had "acquired" the skill, but not refined it. It had already taken a long time to acquire, and much more (refinement) didn't appear to be happening. Recently, I felt I may be in a "critical window" by the results of other skill development. I performed those exercises (20 reps. a day) for a week. If I wasn't in a "window", then nothing. I was amazed with the following:

This is a picture of me performing "Pucker" after a week of exercise There is more muscle tone in the area around my mouth. You can specifically see a crease starting that goes from my nose to my mouth on the left side of the picture.

I only suspected I would get this result as other areas have been doing the same. I remembered a little bit of that theory and looked. I found it only covered speech, but I see it in other areas. I see it in a cognitive test I perform regularly. I'd venture to say it is responsible for the gross motor jump  from pushing up to standing http://www.flickr.com/photos/angelar70/sets/72157626815593901/

This shows that there is a critical window of time to acquire any skill that has accompanying neuronal development.


*I don't want this confused with Speeh, so

I'm pushing up, to

seeing how long I can stay standing.  Standing is definitely not speech.

The Neurological Epidemic

Medicine is now that good. So good in fact that we need to start thinking about other things. Brain injury is part of this Neurological Epidemic. Not only will people survive long enough to get Alzheimer's and Parkinson's Disease, but people deemed "semi-vegetative" will live long enough to be able to effectively communicate. My "brain injury" was both, an AVM stroke and TBI. I was deemed "semi-vegetative" yet I now wrote this. I'd like to think medicine has progressed so far, that  a person like myself will take these steps. I would be part of this neurological epidemic. Not every coma wll wake up, just like not every senior will get Alzheimer's, but there will be some. Is that enough?

Did I communicate effectively?

Give A Little Bit

That neuropathway I'm making, it's the whole thing. So, making it and wiring it. My body made it and now it needs to be guided through the wiring process. That would be two processes. First is making it, then using it. It's actually been seen to happen in special education-a student "doesn't get it" until years later. The people that notice are usually the student and family. School personnel may not. They may not be the originators. But records exist. There's something called an IEP.

With me doing all these things years later, I kept thinking of a kid of about 15 years old a while back. He would walk with assistance from the living room to his bedroom in a care home. His parents probably started in Kindergarten by writing walking as a goal. He probably had to wear special leg splints and have regular physical therapy. Every year, that goal would be looked at and the daily activities increased in difficulty. The staff may be different, but the paper is the same.

And so it has been with me. People will look and think, "she's getting it!" Really though, it's not a miracle. I just had a goal years ago, and did daily activities (this included therapy, exercises, etc.) that progressively got harder. "Progressively getting harder" would sometimes be a very minute change. A lot of times it would be no change at all-just maintain and get used to it. It was just a little bit. So, give a little bit...

Making A Neural Pathway

I have a BA in Psychology and an MA in Special Education so I guess I'm somewhat qualified to do this. Nobody else has been through this either. Somehow, I've managed to keep all my knowledge, it's just taken some time to get my physical ability there. This time, though, has allowed me to see a process.

There has been talk of re-wiring, and having experienced that, yes. But there is something else. When I say I'm "making a new neural pathway", I am. There is something I noticed with on-line brain injury groups: re-wiring happens closer to the injury date. I'll say during the first year. But it doesn't stop there. The wondrous brain continues to grow. So yes, it would make new neural pathways. I noticed another thing with these groups: the longer it's been since injury, the easier things get. I then thought of my Special Education background, it may take 10 years, but a student might get it. I then look at me, I'm not miraculously getting skills back, I'm providing myself intervention to eventually learn new skills. For years I did early intervention, and learned a few things. It has been very limited, though, due to my physical condition. In so doing, I'm providing my brain the opportunity to make a new neural pathway.

So I continue to make new neural pathways. I would venture to say then, ANYONE with a working brain has the ability to grow and change. They have the ability to make new neural pathways. This process of making one takes a lot longer. Educators see it all the time, and special educators deal with the problems of it. It will take the typical person 18 years to complete the education system and most of their neuronal growth. It wouldn't be that hard to say it might take another 18 years for a brain injury recovery. A person may be good enough to pass in a few years, but he/she should be given the same amount of time afforded to a child who is making new neural pathways.

UPDATED 7/26/2012

Agree To Disagree

(updated 2-14-2014)

If more people do this, less marriages would end in divorce. There would be less war.

 

Who cares you have a star on your belly? My sister has a tattoo on her ankle. Have one or not. That's your choice.

 

People are different. Everyone has their own opinion. Yours doesn't have to be the same as mine. I'm not going to hate you for being different.



People who refuse to allow differences never  go anywhere...
 

What Is A Sneeze

I didn't realize I hadn't sneezed until I did again. I then figured sneezing must be part of the re-wiring that the rest of my brain was doing. You see, I had a terrible brain injury. Funny, but I couldn't ever remember a sneeze being described in terms of wiring.

So what is a sneeze? It's a pulse of energy traveling a circuit. An irritant (like dust, pollen, or a feather) stimulates a nerve ending-the beginning of this circuit. An impulse, or burst of energy, travels the pathway of wiring. If successful, that's it. If not, then it happens again.

A Developmental Profile

I've never written one on myself before. I've never written one on an adult. Since the bleed it has been like I had to start all over-like a special needs child. I've come a long way from laying in a hospital bed only able to blink my eyes.

I'll start with motor skills. Regarding gross motor, I do not walk. I get around with a power wheel chair. I have a much lighter travel chair for outings. I can sit unsupported. I am able to push to a stand, and if assisted, can stand for longer periods of time. In fine motor, I use an inferior pincer grasp, or thumb against the side of my index finger. Usually, we see the neat, where one is nit picky. One thing to be noted, I'm now left handed. I was right.

Communication-I talk. This is unusual. For a long time I didn't. Then I started making sounds, which prompted a camera being stuck down my nose to look at my vocal cords. It was determined normal and left at that. So over the years I have taught myself to talk and speech therapy has been spotty. Receptively and expressively it's all in English. There is still some work to do on pitch and volume, and a few letter sounds (like "D"), but I am understood.

Self-help has some. I dress myself every morning except tying my shoes. I brush my teeth (I hated those toothette things in the hospital). When it comes to eating, I have a G-tube. I get all my nutrition, 7 cans of Ensure. I do take some food by mouth, "pleasure eating". I drink 1 more can of Ensure and eat a cookie. Being able to take food by mouth has been a process. It was thought I may never.
 

Social hasn't been much of an issue. Can't move-can't be a behavior problem. Actually, can't move doesn't have any behavior. Due to motor difficulties it is important to keep social up.  When I started moving my head I was put on anti-depressants. I think doctors knew what I was doing. I could only move my head and knew I had a blood vessel in my head that could explode. I shook my head.

I'm saving the best for last-cognitive. Usually I have it first, but this is very unusual. You see, I wrote this. I should be mental mush in some nursing home somewhere. I'm not, though. Obviously, I have mental capacity higher than the 5th grade. (I think that's all you need.) I'd say all my cognitive skills are in tact from prior, plus more from the last few years. My cognitive scores have always been above average. I've qualified for testing with MENSA, but haven't. I really don't agree, but it was pointed out to me that would be an incredible feat for someone of my caliber. So I keep the option open.

No Services To You

So I was designated "semi-vegetative". I didn't get much of anything other than be kept alive. I always thought it would be different if I was MCS or Minimally Conscious State. I was wrong. They don't get anything either. "Most patients in a minimally conscious state (MCS) are now cared for in long-term nursing facilities, without the benefit of rehabilitation or status-changing treatment." http://www.sciencedaily.com/releases/2007/08/070817215750.htm

So I get nothing yet I make progress. How could that be? Am I some sort of miracle? No, just determined. The miracle happened a while ago and that is a different story. There are so many now who suffer from brain injury. I say "suffer" because that is what they do. Sure medicine saved their lives...my life. But now what? The answer has been long-term care; deal with it; it's your problem now.

Fortunate for me (see me sneer) to know how to provide those needed services. Yes, you learn just the basics when you do in-home Early Intervention. You have to. You see so many babies not disabled enough to get more than a special ed teacher. You end up learning so you can give it to them. So here I was with this knowledge, and I could barely move.
 

Something else was going on:

Neuroplasticity: The brain's ability to reorganize itself by forming new neural connections throughout life. Neuroplasticity allows the neurons (nerve cells) in the brain to compensate for injury and disease and to adjust their activities in response to new situations or to changes in their environment.

This is from WebMD's site on terminology, http://www.medterms.com/script/main/art.asp?articlekey=40362. I would think any live brain with necessary components would go through this.

So I did little movements. They eventually became bigger-neuroplasticity took care of that.

Wait a minute! What about John Doe with the TBI who gets nothing? Oh come on, I can only do so much. A brain training software program to promote neuroplasticity would greatly help. That should be combined with on-going therapy-speech, OT, and PT.

In the meantime I write it down. I find and give what I can to John Doe. (If you are a Jane or John Doe, then here, http://braininjuryknow.blogspot.com/2010/12/rehab-at-home.html.)