I Should Get Services

To deny that I am conscious is only to hold back progress.

I, too, think I should get OT (Occupational Therapy), PT (Physical Therapy), and SLT  (Speech and Language Therapy), in addition to the nursing services I now receive. I can only forward this comment.

Obviously I am talking to you. If I was vegetative I wouldn't be able to do that. Vegetative is considered a coma with the eyes open. I am not in a coma. I am not vegetative. Something else has to be given as diagnosis.

I think my diagnosis as "semi-vegetative" has thrown everybody. It allows a vegetative patient to talk. Contrary, "Minimally Conscious" should have been given at that time. I doubt I am still minimal 15 years later. A whole stage wasn't tracked other than my posts. Someone better get these in case companies fold.

Even if my local university can only document, then they should. It is crazy that there is absolutely nothing other than what I do myself. 

My case isn't a right to life issue anymore. Now, it's to see how far a person can go. My issue has no borders. Other countries click this blog. This is for humanity, and humanity is losing out right now.

Let Me On

  I was written out. Now I want to be written back in.

_______________________________________________________

 
Okay, so I was in a coma at one time. I'm not anymore. Get on with it! Some people get stuck there. That letter explaining to me I am in something "referred to as coma" is just something else. http://thoughtfulveg.blogspot.com/2014/05/dear-vegetable.html You get back on the ride if you fall off. Can I get back on? Stop making it hard for me.

Obviously I am not in a coma. I'm not 100%, either. I don't walk. I have an electric wheel chair. I don't eat like I used to. I have a feeding tube, and food can't go in my mouth.

I am diagnosed with dysphagia which is the inability to swallow. Well here's the catcher, I do swallow, but my airway stays open so I swallow to my lungs. I believe this is fixable with speech therapy. Same goes for the wheel chair. I push to a stand, so walking is very likely. Physical therapy is not currently provided.

Not only do I type this out, but I do it with one finger. I had to know Occupational Therapy (OT), adapting my environment, and accessibility available to me. I could provide limited OT and speech in my condition. I couldn't do Physical Therapy, so that is way behind. Cognitive skills are amazing. It's very rare, but it can happen that they become very advanced.
 

Labeling me the way I have been hasn't worked. As it is now, I do not qualify for any therapy services.

How did I end up here? http://thoughtfulveg.blogspot.com/2014/12/vegetable-on-loose.html It can be seen as a comedy, but for myself and the people involved, it was not. What happened did happen. It's funny now to look back and still be vegetative. A vegetable did so much!

Now a vegetable has to live. I brush myself off after falling off the ride. I'm all better now (for the most part). Let me back on.

 



_____________________________________________________

7/6/2018

I don't eat. That doesn't mean I can go without nutrition. I have a feeding tube.

I once was in a coma. People in comas have to be fed. If the coma persists, a hole is cut in the abdomen for direct access to the stomach. Shorter term comas will have a tube in the nose. Mine is the hole cut in the stomach.

Nutrition is given through the g-tube. I haven't eaten a meal in years. My incident was in Dec 2002. I opened my eyes in 2003, but I was made vegetative which just changes the coma to open-eye.

I now do this, which leads one to believe that I am not vegetative anymore. Now I'm one up on science. We'll have to wait and see. Right now I talk to you from a coma.

 

The Computer as Treatment

"Practicing social interaction in a safe, non-threatening, gaming environment helps people reduce anxiety and gain the confidence and skills they need to attempt more social interactions in their daily lives." http://www.huffingtonpost.com/2014/10/29/autism-video-games_n_6056634.html Social media does this.

Some neuroscientists are tackling teaching cognitive skills though games. I found one to be substantially helpful with my vision. It clearly stands out in many areas. http://www.brainhq.com/world-class-science/information-researchers

Different therapy videos can be found on the internet. Occupational, Physical, and Speech therapy videos are there.

 



 

Videos aren't for everyone, but they can be a useful tool.

 

 

The exam must still be done in person, but this new tool of the computer gives you options in treatment. This last person is successfully using her computer to provide therapy.

The true reason this Survivor posts videos! I promise!
Posted by Jennifer Stokley on Friday, September 18, 2015

Tracking My Development (nobody else has)

video:  https://www.youtube.com/watch?v=qxm6VCy49So

"Cognitive was first...when my eyes were open. I already had hearing. Then was social. Next was fine motor. Just wiggling. It has taken lots of therapy to get to the movement seen. Speech followed. It was only sounds. Finally gross motor." http://thoughtfulveg.blogspot.com/2014/09/the-order-of-coming-back.html

It has taken me 12 years to get my hands moving to be seen in one frame. They hadn't been working together. My right was paralyzed and in my lap. Now I'm moving it. That's 12 years of research wasted! My right hand is still not great, but movement can be seen and discerned.

There has been order. Development closely follows the progression of childhood development. Skills may be attained fast or slow, though. When I say slow, that could be years. I believe that has to do with neural wiring available. Working on a skill creates wiring. So this process can take as long as a person takes to grow.

The left hand is the hand I am using to type. I used marbles to mostly get to what you are seeing. In the hospital, the over-bed table had a compartment tray. The activity nurse had a container of marbles in her closet. She put some marbles in a compartment on the tray. I'd move those marbles one by one to another compartment. An Occupation Therapist would know I was doing tactile exercise.

You can see that my right hand is coming along. https://www.youtube.com/watch?v=qxm6VCy49So I'm in no hurry, though. Right now it is able to move and is consistent. Next would be grasping objects. I do this a little bit now, but want to get better. (As of 4/4/2018, I mostly am. I use an inferior pincer grasp, or my thumb against the side of my finger.)
 

What you see now is typed with my left index finger. I use assistive technology on the computer, as in making capital letters. After arms might be legs, but I don't get physical therapy. I do what I can. That is more than nothing, but progress is slow. Walking will come eventually. A Physical Therapist would do it faster.

My speech wasn't tracked at all. I went from making sounds with private insurance to fully talking now? That area is weak. Talking fully came mostly in the hospital and nursing homes. I was a Medicaid patient there and did not receive any speech therapy. I'm now Medicare and continue not to receive any therapy. My speech will continue to get better, though, because I made environmental changes years ago. (Basically use my words...I gave up my communication board.)

I am going through all the steps of development. It's a pity it is not tracked. The government now says I'm in a coma, so I can't be followed. I don't think people are so gullible as to fall for that one. I don't look like I'm in a coma. 

I do my best to note everything I go through now, but there are gaps. There was absolutely nothing from 2002-2009. 2002 is when this started and 2009 is when this was published in a magazine http://thoughtfulveg.blogspot.com/2010/11/what-kind-of-vegetable-am-i.html. The rest can be followed on here. 

I haven't even addressed the cognitive area. I don't want to even go there. This has mostly been physical. Like I said before, I had to get my arm going so I could express my thoughts. My cognitive skills are probably way off the charts.

 



UPDATED:  4/4/2018



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.

http://www.merckmanuals.com/professional/neurologic_disorders/coma_and_impaired_consciousness/vegetative_state_and_minimally_conscious_state.html

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.)

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.