I haven't used muscles that were paralyzed. As they come back, they are weak.
People can have a hard time understanding me. The more I speak, the better I am. I also have the computer for these longer thoughts. My speech is simple. What I write isn't always.
ASHA has some good stuff:
I will do the video over if I can't understand what I am saying.
People watch these and are amazed by improvement each time.
I say the improvement in speech production is due to the surgery I had at Stanford. It re-opened the speech learning window.
Surgery was 15 years ago. My cerebellum was cleared of scar tissue and damage. It tookme 15 years to grow neurons. This growing of brain cells is what is controversial. If I didn't grow brain cells, then how am I talking? I have not had any speech therapy. I use lollipops to keep me on track. Lollipops can be a useful tool in early speech development. The same goes for re-learning speech. Just look for "grown-up" flavors.
I
have somewhat of a swallow, but I haven't dared use it unless
supervised. Years ago, when I first opened my eyes after a coma, my
swallowing was tested. Jello was used. I swallowed the Jello, but it
went into my trache tube (I was on a ventilator) as well as Jello came
out my nose. The speech therapist said I swallowed to my airway and not
to my stomach.
I've
pretty much avoided food ever since. I do taste, though. So this has
been hard. I used flavored chapsticks and lipglosses to help. After a
long time, I moved to candy spray. As a note, don't spray the back of
the throat. Now I use lollipops. I can handle my saliva now. You can see
there is already progression and I haven't begun swallowing.
I
have a second swallow that I wish was common. I believe it to be
correctly doing what a swallow should, but it rarely happens. It is becoming more often, but still doesn't happen when needed. It reminds
me of the following video, but instead of pain the bad thing is
aspiration or swallowing to my lungs.
My 2nd swallow is most likely the green arrow.
______________________________
My idea has been simple. I just put a lollipop in my
mouth. This changes the environment to include taste. All those taste
receptors come alive.
The lollipop then has added speech therapy benefits. It is specifically used for speech and swallowing therapy.
I also have an idea to use tDCS to stimulate swallowing.
tDCS stands for Transcranial Direct Current Stimulation. It is the
delivery of electric current to the brain. I found some research, but
this is new.
"Dysphagia is common sequela of brain injury
with as many as 50% of patients suffering from dysphagia following stroke. " I'm surprised there hasn't been more research with such a high incidence rate.
No
one has ever seen before what is happening in me. The best way I can
describe it is that I am slowly getting better. When I say slowly, I mean years. I'm still disabled, but no longer require life-support.
I had an AVM Stroke December 2002. I should have died that day. Usually, most strokes don't kill a person, but mine was caused by a rather large, hemorrhaging Atrial Venous Malformation (AVM). This thing was daunting and bled for most of the day. It wasn't stopped until I was taken to a third hospital.
After
the stroke, I was in a deep, eyes-closed coma. To say that this was
pseudocoma may not be right. Latter stages may have been, but I doubt
initially. I did not move at all, and I did not breathe on my own. My eyes were closed and I was unconscious to the world.
Upon
opening my eyes, I still did not move or breathe on my own. I understood that I
had a blood clot in my head that didn't kill me all the way. Since I was unable
to do anything, I discovered that I could turn my head to the side. It
felt like it was all the way, but it may have only been half way. This
latter was most likely. I remember turning my head side to side as fast
as I could. I was intentionally trying to dislodge that blood clot in my
head.
It
must have been a partial turn, because it was noted that I was shaking
my head. I was given the medication Celexa and I stopped. Unknown to
others, I was already familiar with this particular medication. I was a
behavior specialist. This medication would work on behavior, not spasms.
Shaking my head was intentional. I was not unconscious. This is why Celexa worked.
I had been made PVS, Persistent Vegetative State. This is unconscious. This just extended my eyes-closed coma. This diagnosis was wrong.
The
rehab I was at went on to get all of my left-side body parts to move.
The movements were not strong, but they moved. The rehab suspected Locked-In Syndrome. This would have been Incomplete Locked-In Syndrome, as there was some movement.
The diagnosis should have been Locked-In Syndrome, Incomplete. There is some movement with the Incomplete form. This disorder is conscious.
I was completely weaned from a
ventilator. That was a big deal. It had previously been done with brain
injury, but those were done within weeks of the incident. Mine was many
months later. Usually by then, deficits were thought to be permanent.
Before
I left the rehab, I had started vocalizing. I got a couple of good
speech therapy sessions. Medicaid/Medicare does not pay for speech. I
had done general special education, so I was familiar with techniques
but I was not a speech therapist. I would be switching to Medicaid.
After
leaving the rehab, I was transferred to the other end of the state, Southern California, and
was placed in a nursing home for quadriplegics who were very
independent. That rehab had gotten my left arm moving and this new
nursing home wasn't sure what to do about that so they ignored it.
I
started to move my right hand after a month or so. I was discouraged
and told not to move it. I later found out that my mother was lectured
on how the home was paid for the residents to be disabled. I couldn't
start moving my right side.
This is important. Nursing homes are financially set up for a person to have deficits. The more the better. Nursing homes are not paid for a person to get better. As a business, it's residents need to fail. A person goes to a nursing home to die. There will be exceptions, but a majority will follow this concept.
I
had been using a communication board at the rehab. It's just a simple
laminated piece of paper with the alphabet in large print. I've seen
pictures used for children not reading, so this wasn't anything new. I
gave up my board when I went to the nursing home. I had started
vocalizing and I was going to learn how to speak like those who do total
immersion when they move to a new country and have to learn a new
language. (Sorry dear government that I don't swallow, but you didn't
give me speech.)
I moved back to Northern California. I had
surgery in 2004 to remove the blood clot in my head, the AVM. I
immediately noticed that I was speaking and moving easier. To me, a
barrier had been removed. Others may not have noticed but I did.
The surgeon explained that
I would not see immediate improvement. This was a learning thing. He
only cleaned up my brain. He only made the playground neat and orderly.
It was up to me to play. (These are my words. I like to describe
learning as play.)
"You
are probably seeing neurogenesis. It's not a one time thing and it's
done. It's a process. It's more like repeated neuroplasticity. In me it
has lasted years." Neurogenesis Is A Process
That
doctor at Stanford who did the last brain surgery didn't know my prior
development. For me learning might as well have been play. The NDE, Near
Death Experience, had put my body back in learning mode. THIS IS ONLY
MY INTERPRETATION. (I refer to "Undead Genes" turning on at death. http://reallifescifi.blogspot.com/2017/10/my-undead-genes-turned-on.html)
Learning
is play for me. I learn extremely fast and I do it for fun. Go back in
school records and you will see. Kids don't normally leave high school
and start college at 16.
41%
are misdiagnosed. Am I one of the 41% ...Or did I recover? 41% is high.
"Pull the plug. There's a good chance I'm wrong, but the report
says...."
I
was this, but I could do my own doctor care... and I can relate that
info to my caregiver. I've walked people through on feeding, giving
medicines, changing bandages, etc.
People
don't know why I tell them to do something. I do. I know why. I did it
today and I'll do it tomorrow. The day I can't do it is the day I go
back to the hospital. I shouldn't be out of a hospital.
I was sent home to die. Doctors didn't know I was smarter than that. I did care and am still here.
_____________________________
So
this woman, Maggie, is blinking one eye. That stood out to me because I did
that. I started vocalizing during this time. I wasn't saying words, but I
was making sounds. This was during my first year, but after diagnosis
was given. Per recommendation, I made the beginning sound of the word I
was spelling.
This
was still in my first year. I was at a rehab hospital. They would have
me do a lap around the unit floor, down the hallways and past the
nurse's station, in order to teach my left arm how to propel a manual
wheel chair. Although I was initially unable to move, after a lot of therapy, the staff at the rehab hospital got me able to sit up and move my left arm.
By
this time, letters I was blinking "yes/no" for were all on a single sheet.
Prior, they were much bigger and on flash cards. With that left arm that I could now move, the
speech therapist suggested that I point at the letters I wanted instead
of blinking. Also, I should vocalize the letter.
The
typing you now read is this. I don't vocalize when I press letters. The
page of letters was replaced with the computer keyboard.
"Before I could type on a computer, I worked spelling my name on a
toy. I believe it was an apple of some sort. I'd call it the Happy Apple
because it would play an annoyingly happy tune. I ended up practicing
quite a bit with that toy turned off." http://thoughtfulveg.blogspot.com/2013/06/how-do-you-communicate.html
I
could say a word when I left the rehab hospital. I went to a nursing
home in Southern California. I ditched the communication board and
wouldn't let my family tell staff about it. Getting rid of aides is a
common technique in education. I would be forced to "use my words."
(Have you ever heard a teacher tell a student to "use your words"?)
When
I left the hospital, I commonly had laryngitis. When my children first
moved in I'd get it. I don't anymore. People with whom I occasionally
speak to on the phone, notice improvement the most.
So much has happened over the years. This is generally how it went.
_____________________________
"Even those lucky few who do get rehabilitation and are not shunted off
to what is euphemistically called “custodial care” get too little time.
Most rehab stays are six weeks or less. [I managed to stay longer.] But if the brain recovers
through a slow process similar to development, why do we provide — and
only to those lucky enough to receive it — just a few hours of
rehabilitation a week for six weeks? It would be akin to sending your
third grader to school for half-days of classes for a month or two and
telling them that they are now on their own. Now that we know that it
takes years for the developing brain to learn and mature, a similar
commitment to the recovering injured brain now seems indicated."
There
have been many instances where I suggested an education approach. "If
we reconceived rehabilitation as education, no one would graduate
after a six-week course of care. Instead, we would promote lifelong
learning as a means to achieve a recovered life." I came up with a
home-program that replaces the 6-week crash course, http://braininjuryknow.blogspot.com/2010/12/rehab-at-home.html
.
It's low to no cost. If these persons are just put on follow-along
case management, then small issues can be caught before they are large
and costly. It would be a shame if one of those 41% got well enough to
file a lawsuit that could bankrupt an already compromised system.
I don't want to hurt what little is there. As it is now, I am vegetative and unconscious. Some other way can be found to compensate me.
This is the rehab hospital. You can get an idea
of "laps", as that is what this patient is doing as
part of the process to relearn walking.
Quite a few placements followed this one.
Recovery
from LIS, Locked-In Syndrome, can be a long process. Not much is known
about it. I got to thinking... I only can speak a few sentences. Maybe
it's not a mystery that I talk without swallowing. It's just time I
learn how to swallow. I know a long time has passed. Maybe these
lollipops I use are just the right thing.
I'd like to get the thoughts of #speech therapists.
___________________________
It's
been a few months since I started using lollipops to learn how to
swallow. I notice I'll swallow throughout the day but it is not
controlled. I just can't make myself swallow. It just comes.
I accept my disability no problem, but it messed up my Medicaid. I had to go back in records. What I found....
I am not conscious. "Vegetative" was never changed. "Semi" was added later, but it still used the definition for Persistent Vegetative State. "Vegetative" is not conscious. If the person is awake, it is an open-eye coma. To top things off, I may be brain dead. The term "brain death" was never used. My medical records list my demeanor at one hospital. These are the same criteria for brain death. My records go on since I didn't die. Is it only implied that I was initially brain dead? The original criteria is never refuted.
I receive Medicaid services for a vegetative person, also called a Vegetable. In California these services are called Medi-Cal. The services I receive are very basic medical services. I get less than others with Medi-Cal. Therapy is not included. Messing
up my Medicaid back then when I had a brain bleed meant messing me up now to every day that will
come until that Medicaid is fixed. I've gotten no rehab. Any future therapy I will
need is already denied.
______________________________
A question was asked about trading your eyesight for an IQ increase, IQ Increase Question. "So maybe the first thing I will think of, will be to actually use my brain to restore my eyesight." I've done eyesight well enough to see my room. Lets Make a Deal recounts my eyesight recovery. The essay discusses eyesight rewiring.
I have other issues that I have applied my knowledge to. About two years ago, the GI Specialist for my g-tube commented that he just wanted to remove my feeding tube. It was getting infections at an extreme rate. I talk now. This would lead a person to believe I didn't need it.
The problem is, though, I talk without swallowing. I never got Speech Therapy, or this would have been worked with along the way. Now you see me sucking on lollipops. I'll learn to swallow like the children with oral aversion I had long ago worked with as an Infant Development Specialist.
I do not get Speech Therapy. I am never to get Speech to teach me how to swallow. Just when I thought I had my speech up to a passing level, I find I have one more thing to do.
Walking is another big issue. People can see the wheelchair. I have posted pictures of me standing. Like Speech, I do not get Physical Therapy (PT). I taught myself to push to a stand. I figured if I could only get my body to be like the toddlers I used to work with then PT would step in. Therapists want to now. They see something they can work with. Insurance, or lack of, prevents them.
I stood long enough for the photo.
First off, I am not designated "conscious" on government paperwork. Unconscious people don't get therapy. Second, Medicare does not provide on-going therapy. I think it something short like 30-days a doctor can put a referral in for. The therapist can then request an extension. I've done this. It's too short of time to learn walking. This is one more issue for me to work on alone.
Fine motor skills are good enough for a pass. You can read this, can't you? I'm using only one finger, but that is all that is needed. An Occupational Therapist (OT) will tell you I need more, but they are used to funding being cut. Obviously my cognition is off the charts or I wouldn't be writing this.
______________________________
Services for this population are piss-poor in this country. There is an underlying discrimination of disability. This probably affects that. I am not conscious. Again, this is probably due to discrimination. I have a brain injury that makes me a "retard." I may be a smart "retard" but I am an unconscious one. That makes you better than me.
When
I couldn't move, I hated it when the TV was left on a show and it ended
and an infomercial was then on for a couple hours. I did not need an
acne face wash. (An acne facewash infomercial was repeated at that time.)
I dislike infomercials. Can't say I hate them with a passion. I definitely won't watch one of my own free will.
Unlike
the above, "That hatred was part of what triggered him to start
regaining control of his mind and body." My dislike of infomercials did
not trigger this. I think "anger" did play a part, though. It was a great motivator.
Reading the above did not hit me like watching one of the news videos on this person.
Yes,
I agree with him. I supposed if I take these essays and put them to an
audio program, they will have a voice. You won't even have to read.
He doesn't appear as having an extreme hatred of Barney. Instead, he sounds intelligent and dedicated. Maybe my situation will be changed to an extreme hatred of infomercials. That's not what caused the turn around, though. That turn-around is from hard work; hard work from an intelligent, dedicated person.
I ended up doing the above in two parts: me speaking in a video, and a written piece of what I am saying and what I wanted to say. It was to be total video but half-way through reading, my voice got high pitched. My daughter called from the other room that it sounded like I was crying.
I ended up doing part video and part written. Speech is something I continue to work on. I do this by myself. I taught myself to speak. I don't get any therapy.
FYI, Amazon doesn't have a customer service phone number. After much frustration with their website, I did a search for their phone number. (By the way speech, if you want a consumer to talk, have Amazon lose their order.) I searched their number. After more pages and clicking "No" to DID THIS INFORMATION HELP, it gave me a page to enter MY phone number. I did. Soon my phone rang. I told my problem. The customer service person said we had a bad connection. (Damn speech!) I cleared my throat and did it again. She refunded my order and gave me a $20 store credit. $20 was my time and frustration. All that time was spent looking for their phone number!
A person who had a serious injury has to go on and live. I passed the test of Amazon customer service and got a refund and a credit. If customer service can understand me, why can't the government?
Talking
without swallowing is the problem. Swallowing uses a lot of the same
muscles. So, the thinking goes, if a person can talk, that person should
be able to swallow. So this is troubling when I don't swallow.
My answer comes from years of early intervention: oral aversion due to a medical condition. I was a program manager if that means anything.
How
long has it been since I have eaten? I haven't had food by mouth in 14
years. After I had a brain bleed in 2002, a stroke, I had what I call a deep coma
where my eyes were closed for 5 weeks. A feeding tube was placed at that
time, by cutting a hole directly in my abdomen.
I
opened my eyes around mid-January. I transferred hospitals around this
time. I was tested on swallowing at that second hospital. For some reason I
remember Jello coming out my nose. I thought it should have been green
Jello. It was red.
I
was made NPO at this time. It meant I was to have no food by
mouth. My coma went from closed-eye to open-eye. I was made vegetative. A bit later, at that same hospital, I started making sound. I had
been silent for months. Talking had been given up on, and a computer
program was being tried on me. (As a side note, it was head activated. I
used my head to hit a switch. I couldn't move my arms.)
All
planning had to be changed. I went from non-verbal to verbal. I only
got a few weeks of speech therapy, then I had to move. My private
insurance ran out because it had what was known at that time as a cap.
It is a political issue that may or may not return, but I don't have
that insurance anymore.
I
moved around to different places, always remaining NPO, or no food by
mouth. Occasionally I got something to taste, but was never fed by
mouth. I taught myself how to talk. I had some training as an Infant
Specialist, but I was not a speech therapist.
When
I moved to the town in which I currently live, I got a few speech
sessions in a neighboring town. That therapist got me to do a few sips of water. At
my last session, I successfully did Ensure.
Four
years ago, I had a swallowing evaluation done at this local hospital. I could not swallow food. I was still no food by mouth. Recently I was
tested again. I have a feeling that the limited speaking on YouTube
videos and these essays have sparked that. Again I did not swallow.
For
some reason these swallow tests are being used as a test of
consciousness. I did not swallow, so therefore I am not conscious.
Some
people are wondering why did I swallow 32 years before the bleed, had a
break, and now can't swallow. The answer is I am starting that out all
over again. That's what talking was...starting out all over again.
Something
occurred after my stroke, probably within minutes, that I say was
probably a release of my body's own Adult Stem Cells. These stem cells
would not only repair all cell damage from a stroke, but it would also
wipe clean the past 32 years of learning. From looking at pictures, the
last 32 years of aging may have also been wiped out.
From the way that I explain it, not swallowing doesn't sound weird. It's an aversion of food placed in my mouth. All this takes to remedy it is some speech therapy. (It would have to focus on swallowing.)
The following video shows me speaking.
*NOTE
As of 1/17/2017, my feeding and all supplies were restored by Medicare.
This goes with the video. It was too much to read out loud at one time. I talk throughout the day, but it isn't more than the following 5 sentences at a time. The rest of what I wanted to say is written in the last part.
_______________________________
People have asked if I speak. Yes, I do. That is an issue that was never fully investigated. Initially when I woke from the coma, I did not make any sound. There is a link in the description describing the incident. This is as much as I speak at a time.
_______________________________
One day I made sound. It was many months after my coma. The speech therapist was shocked! I had an upcoming appointment for an ear infection. She accompanied me to the appointment and had me scoped. She wanted to know where the sound was coming from. The doctor determined everything was normal. I remember him saying, "Why shouldn't she [make sound]?"
My insurance terminated soon after. I became government responsibility and government never investigated. I formerly did Early Intervention for toddlers and babies. I had some speech training, but I was not a speech therapist. I've done what I could. A therapist can probably do better.
_______________________________
1/4/2017 This shows the importance of continued speech therapy. It is not something to be brushed under the rug.
In 2002 I had a severe brain bleed that left me in a coma. Five weeks
later I opened my eyes. I couldn't talk or move. I was labeled PVS (Persistent Vegetative State) and it
was left at that. Nobody kept track of anything. I now talk. When did
that happen? Was it now or 3 years ago?
I will address talking.
Before
talking was breathing. I had to breathe on my own in order to talk. I'm
not talking about just the tube in my throat. I was intubated before
that. The diagram shows why I couldn't speak at that time. It went into my vocal
cords. A second surgery was performed after to put the hole in my neck. I
still couldn't talk. This may have to do with weakness and not that I
was on a ventilator.
I
say weakness prevented me from talking because when I was off the ventilator, I could only make
sound if the hole in my trache tube (the tube in my neck) was plugged.
As I developed lung strength, I did not need this plugging of the hole. "My Hole" http://thoughtfulveg.blogspot.com/2014/04/my-hole.html covers the trache tube and even has pictures of it.
My
first sounds were vowel sounds. Later, maybe a month or so, I added
consonant sounds. I remember 'M' which may have been the first consonant. My first
word was "mom." This was still in my first year after the bleed. I had
kept my work insurance under a special ruling called COBRA. At that
time, insurances had caps. I kept it until I reached the cap. I had
speech therapy under this insurance. I did not get speech again like
that when I switched to the government program.
I had been using a communication board. Here is one being used:
At
first, I would blink "yes/no" for letters pointed at. As I got movement
in my arm, I touched the letter I wanted. When I started vocalizing, I'd say the
letter sound as I touched it. As I got better at saying a word, I only
needed to touch the first few letters.
I
then had to leave that hospital. Insurances had caps at that time and I
had reached mine. I did not let the new place use the communication
board. This is the big environmental change I will talk about. I forced
myself to use spoken words. (Education is familiar with this technique.)
It was common for me to say a word over and over until it was clear and
could be understood.
My
bleed was in 2002 and by 2006 I was using single words and short strings
of words to answer questions. I still did not talk on the phone. Talking on the
phone didn't happen until after 2009. (I did say "yes" and "no" on the phone to some family, but they knew I couldn't converse.) 2009 is when an article I wrote
for Stroke Connection Magazine was published, http://www.strokeassociation.org/idc/groups/stroke-public/@wcm/@hcm/@mag/documents/downloadable/ucm_463065.pdf p.8 They could probably tell something unusual was happening. I use this as a marking point.
Fully
speaking, the way I do now, is more recent. By 2011, someone came to
video me speaking. I published something myself in 2014:
Remember
that communication board I talked about in the beginning? What I am
doing now is similar. I find a letter on an electronic communication
board...the computer keyboard. I touch the letter and press down. I
just have the extra cognition to formulate sentences and put them
together in a story that makes sense. I don't have a problem with my
cognition, just my speech. (Not all brain injuries are the same. Some could have cognitive impairment. Mine didn't.)
The Stevie Wonder song "You Are the Sunshine of My Life" came on. I was flooded with memories of singing my first song since opening my eyes after a coma. The title of that first song is similar, "You Are My Sunshine."
I knew all the words to the main verse. Everyone else just knew the first sentence. At the time I had no clue this was a sign of the neuroplasticity that was also going on inside me.
I remember singing at the nurse's station. Vocalizing didn't come from speech therapy. It came from nurses. I still had speech therapy at this time. Speech therapy would have been surprised by all the sound I was making.
You are my sunshine, my only sunshine you make me happy, when skies are gray, you'll never know dear, how much I love you, please don't take my sunshine away.
Speech Therapy ended as soon as I left that place. My medical insurance ran out. The government plan picked up and any therapy stopped.
I left that place able to vocalize, so I continued the therapy on my own. I did mostly singing and reading aloud. Using my language to communicate was a natural built-in exercise. Family didn't understand why I didn't use my communication board. I think my speech turned out well.
Update 8/19/2016 Giving up the communication board is a technique in speech and special education. It would be "going it alone."
