Manmade Miracle

 

My AVM that bled was in my cerebellum next to my pons. I remember hearing that anyway. You can forget seeing anything at that time back in the hospital. My eyes are better now. I can see big things in the next room. In the beginning after the stroke I was blind. At the rehab, they patched my right eye,

I had to have heard this at the rehab. They are the only ones who mentioned the pons.

Now we are talking pontine bleed. That's classic Locked-In Syndrome.

You might have to enlarge to read.

My AVM bled primarily in my cerebellum, then the whole brain. Now thinking way back to when I was in college, the cerebellum controls heart rate and breathing. I stopped breathing at a clinic. Records say that I was resuscitated at the trauma center.

I died at that hospital. Read the record.

Something had to have happened because I am alive and writing this. This characteristic about me is two part. First there is alive.  I believe writing is due to a second surgery, but the skill could not be seen right away. So much time has passed that the skill is attributed to miracle.

My heart stopped at the trauma center. They knew it was going to stop, so they did something to buy some time. They chilled me. I was close to frozen. I had to be a bit of a sleuth to figure this out. The records state that I was treated for hypothermia. My mother described that an apparatus was put over me to control my temperature. They did Whole Body Cooling! It worked.

I didn't drown. I did have a minor car accident, but I never went into the river next to me. It was snowing where I was. 

Freezing my body was at the hospital. They didn't freeze all the way, but my heart stopped.

https://thoughtfulveg.blogspot.com/2021/01/just-chill-therapeutic-hypothermia.html

Some will not see a connection of now to a surgery done years ago. It was brain surgery, though, and outcomes take a long time. Yes, everyone saw the immediate result, the removal of impending death. The AVM was removed but no one saw what grew there to take its place. I haven't even seen. I can only go by outward behavior...and that looks very good!

So dear US government, I am not vegetative and I am not about to die. The AVM was removed back in 2004 at Stanford. Nothing is there to bleed, now. You would know this if you read the records. You would know this if you didn't delete the records.

One more thing dear government, DO NOT SCHEDULE ANOTHER SWALLOW STUDY AND CUT OFF MY FORMULA. That last time was a fiasco. The formula is my only source of nutrition. Are you trying to kill me? This is written, not verbal, and there is no need to swallow. You never gave me Speech Therapy. Why would I swallow?

l

I'm Not Dying For a Drink

Re:  Dying For a Drink

Once upon a time...

.

A person in a coma has to be fed. They don't wake up  to eat and then go back to sleep. These people are usually fitted with a feeding tube, and the giving of nutrition becomes a medical aspect of their care. 

FEEDING TUBES ARE MEDICAL!

Formula is used for nutrition. The "drink" is this formula. Patients don't drink it at all. Rather, it is personally delivered by a  feeding-tube. A person dies without food. The formula has all the nutrients of food. If given the formula, a patient who cannot eat will live, usually. Other medical problems may occur, but feeding tubes are meant to avoid starvation.

My formula happens to be Ensure. It is sold at the local grocery store. In an emergency I could get some. The containers look different on the outside, but that is marketing. I get the wholesale medical cartons from a supplier, not the fancy bottles sold in stores. Marketing now has all kinds and flavors, but I take the good, ol' original. Going back in history, it may have been the original formula.

If I purchase, then I try to find coffee flavored.

I bought this on-line.

"Bleh," is all I can say about the unflavored formula given at one hospital. I get "You can taste?" Yes, I can taste, and tasting unflavored feeding placed directly in the stomach is not instant. I have reflux. I'll instantly taste it if it comes back up. It's usually vomit by then. Tasting unflavored formula and barf is not pleasant.

Recently I saw a science video talking about holes in the body. I guess if you rub a raw, cut clove of garlic on the sole of your foot, you taste garlic an hour later. In the same way, give me coffee flavor Ensure and I taste  cheesecake an hour later. I assume digestion has something to do with the flavor.

I use a feeding pole.

The formula has to make it's way into the body. This is how it becomes a medical procedure. 

The feeding tube is a port into the body through the stomach. Likewise, an IV is a port into the body through a vein. There also is special tubing and usually a bag to hold the substance. These are medical supplies and not food.

Sometimes there is a pump. I do not have one. I have a Feeding/IV Pole, and natural gravity becomes the driving force of moving the formula. 

There Is No Pump!

Learning to Taste

My favorite flavor was Butter Cream Frosting. I believe it was this brand, and I doubt they still make it. This picture was on E-Bay and the product is probably discontinued.

During 2003-2006, while still in the hospital, I taught myself how to taste. How you ask? I used the flavored lip-glosses and lip-balms for children. I had a ton. I couldn't eat. I'd put on a flavor when I had a tube-feeding.

Applying and opening/closing lip balm became Occupational Therapy. I was careful to remove lids over my lap. Retrieving a lid that rolls under something could be impossible.

_________________

I know how important the feeding-tube is for survival. 

1-10-2021 

I watch my feeding-tube like a hawk. I got it 18 yrs ago. I should have died 18 yrs ago. It kept me alive for 2 years while waiting for life-saving surgery. I breath on my own; I speak on my own; and I now write on my own. That feeding-tube has  kept me alive. (It's not the same tube. I periodically have it changed to prolong life.)  

https://thoughtfulveg.blogspot.com/2020/12/how-are-you.html

I know how to temporarily reinsert the tube until medical care arrives. I know how to provide daily care to keep it maintained. A person in a coma can not coordinate their care. A service coordinator is needed. Emergency services can be provided by a nurse.

There is a difference between food/formula and  medical supplies. A conscious, aware person, with knowledge can serve as coordinator.

The lollipop thing I do is something I dreamed up all by myself. I'll need to explain, or me eating anything will look like a miracle. I used to provide early intervention and I also did the job of disabled services coordinator. The lollipop training I do comes from these experiences.

My formula and feeding supplies were once cut off by the government. They required a swallowing evaluation.

I thought that if I could only swallow the formula, then I wouldn't need any supplies. Then I thought, "I can do that, sort of." When I did Early Intervention a few kids had eating problems. I'd use my experience.

________________

https://www.medicinenet.com/oral_aversion/definition.htm

I haven't had food in a long time. Lollipops are used in a patient that can handle their saliva but cannot swallow food. This is why I use lollipops. The goal is only formula intake.

Swallowing would be an outcome. This now happens to be the issue that determines me being vegetative. We'll see what happens.

I have somewhat of a swallow now, but nothing that would pass a test. It needs to be stronger and more consistent. I continue with lollipops.

If you say it's slow...

When Did You Come Out of the Coma?

7/5/2020 (after the post)
A nurse from a state contracted nursing agency asked me when did I come out of the coma. This did not change my diagnosis. It still says that I am in a coma.

Initially, I couldn't understand why I was in a coma. Now, I think it's hilarious. The policy is wrong. I'm now asked. This is even funnier now that I am asked. You tell me when I came out of a coma.

I'll illustrate why I am in a coma. I grew up being told that the brain doesn't heal and regenerate. I was told that a person was born with a certain amount of brain cells. Drink a beer and they were gone. So you shouldn't drink alcohol.

My brain bleed killed lots of cells. It killed so many that my initial report says that I am brain dead. Going with that belief that the brain doesn't replace cells would mean that I am still the same- I am brain dead and in a coma.

Since the government goes by this policy and they are my primary, my paperwork has not changed. I'm still in a coma on paperwork.

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I came out of a coma I believe in mid-January 2003.  I opened one eye. I couldn't move. I couldn't speak. I was made vegetative, PVS.

PVS, or Persistent Vegetative State, is just a continuation of the original coma but the eyes are now open. I'm still in this open-eye coma. I may have opened my eyes, but  the coma remains. 

Written documentation must have stopped because I have remained this same way on paper for years. PVS is close to death. Documenters must think I am dead now.

I'm not dead.

I've taken this time to get better...on my own. I am not in a hospital. (So far, it has been 14 years out of a hospital. At this point, one must think that I have magic powers. I don't have those powers. I've had years of training and experience in community care. That's not magic.)

To the initial question, I am still in a coma as far as I know.

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The following shows a Swallow Study.

I had an initial swallow study 17 years ago. It went like the video, but my memories are more feelings than  procedure. (This shows brain development. I did not have the capacity to remember procedure.)

Alas, I did not have the capacity to swallow, either. I was instructed to tell nurses that I was NPO. I didn't know what this stood for. I think it's Latin, but I made up "Not Per Oral."

A few years ago my feeding supplies were cut off. I got a feeling that it was due to pure bureaucracy. A doctor wouldn't stop tube feeding, but a bureaucrat would. Somebody thought I was all better, or dead.

In order to get the feeding tube supplies turned back on I was scheduled for a swallow study at my local hospital. A Speech Therapist wasn't  ordered. A doctor wouldn't have missed this. A bureaucrat would.

The hospital Speech Therapist stepped in. He did the test. I heard him say something, though. "She closes her airway." He wouldn't know that I didn't 17 years ago. The interventionist in me jumped in (I used to do infant intervention). "Can I have lollipops?"  

Lollipops are a speech therapist's tool to teach swallowing in young children. That's how I was approved for lollipops. I've since found a few things on-line for adults and lollipops.

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I don't know what swallowing has to do with consciousness, but I doubt that I am not "Not Conscious" anymore. Since I didn't swallow, though, I am still in a coma.

It Will Come

I looked like someone with Locked-In Syndrome 17 years ago. I've had continual progress. I talk and write now. I'm not Locked-In anymore. I probably look like someone who was Locked-In, but now types with one finger and has simple speech.

Progress would be neuroplasticity.

https://en.wikipedia.org/wiki/Neuroplasticity

I've made slow progress  for the last 17 years. I don't look the same as the day that I had my stroke. That's neuroplasticity. I'd say that neurogenesis also had to be in there.

Recovery from the 'locked-in' syndrome.

McCusker EA, Rudick RA, Honch GW, Griggs RC. 

Abstract

Four patients made substantial recovery following the locked-in syndrome of vascular origin. Clinical and radiologic features supported the presence of ventral pontine infarction secondary to basilar artery occlusion. Quadriplegia and mutism persisted for one to 12 weeks before recovery of motor function began. Improvement continued over several years. All patients regained functional though dysarthric speech. Three of the four patients are ambulatory, one without assistance. As a few patients make a notable recovery from the locked-in syndrome resulting from ventral pontine infarction, aggressive supportive therapy should be considered in the early months of the syndrome.

 https://www.ncbi.nlm.nih.gov/pubmed/7065931

That's how I look now. I have made progress much slower, though. Talking took years to come. Some still use the word quadriplegia, but I now use one hand. You can't say tri-plegia as that doesn't exist.

I move all body parts. "Plegia" or paralysis doesn't fit. Quadriparesis is the better word I guess, although I am "tri." Quadriparesis is severe weakness in all limbs.

" locked-in syndrome resulting from ventral pontine infarction"- When I went to Santa Clara Valley Medical Rehabilitation, I heard a physical therapist aide describe that my bleed was in my cerebellum next to the pons. (I could only hear then.) Some know that the pons, "pontine infarction", is associated with Locked-In Syndrome. None of this was ever written down back then. I don't think my diagnosis could be changed.

_____________________

LOLLIPOPS

What I am doing with lollipops now is purely experimental.

The lollipop is specifically used in therapy. I do not get therapy.

Lollipop Swallow from Ed Steger, NFOSD President on Vimeo.

I actually do this every day. Sucking on lollipops isn't glamorous. Work is involved.

I also use the following device for specific exercises. More information on the PhagiaFlex can be found at https://www.alternativespeech.com/?fbclid=IwAR0sXlz-IUFuWDD3AMUtFYLq9f_9fN73JidgXPFEWN6AAc7MWnl5SAtn-Fo 

I practice swallowing because I drool when I speak.

There are quite a few pauses

due to drooling.

  I did not speak like this in the hospital. As you can see, though, I do speak. It came years later. I did have the beginning of speech in the hospital. Sound came 8-9 months after my bleed. I could get out a word for Stanford 2 years after my bleed.

Swallowing will be the same. How do I know? I have the beginnings of a swallow and I changed the environment.

When I opened my eyes, my swallowing was tested. Jello was used. It came out my nose and it was in the ventilator's tracheal tube. This is dangerous! It's also a weird coincidence as to why I am alive. That tube saved my life. Without it I would have aspirated the food all the way to my lungs and died. I've said no food orally ever since.

Lollipops are an interesting food. They flavor your saliva. You don't have to swallow anything extra. They are a good start in a swallowing program. This is what I used to change my environment. The brain adapts to its environment.  (*note- lollipops must remain in the mouth for 2 hours)

15 years after my bleed, Medicare stops sending the formula for my feeding tube. My  father gets them to agree to turn it back on if my swallowing is tested again.

I still don't swallow, so I'm still in a coma. The hospital speech therapist saw something different, though. I closed my airway when I swallowed. (Closing the airway must happen before any food is presented.)

I can have lollipops now.

I will swallow. I'm just on a yearly timeline.

 

 

Making Me Swallow

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.

Lollipop Swallow from Ed Steger on Vimeo.

  Lollipop Swallow from Ed Steger on Vimeo.

_____________________

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.

This article has a picture of electrode placement. https://link.springer.com/content/pdf/10.1007%2Fs00455-017-9789-z.pdf

 Using tDCS for the swallow
 _____________________

I am more than likely rewiring...and growing the wire. 

To Take a Class

CLICK

A truly vegetative person can't take a class, but a misdiagnosed person with severe paralysis can.

So it goes.... The original diagnosis looks silly doesn't it? Even sillier are the current attempts to keep it. I have to pass a swallow study.

Let me get this straight... I have to swallow in order to be conscious?

Now I'm looking at this class. I don't see neuroanatomy swallowing.

_________________________________

THE CLASS

Medical Neuroscience

This is an on-line class. It's at Duke University and is offered through Coursera.com.

I can't go to the classroom. I'll bring the classroom to me.

I Have to Swallow to be Conscious?

When I opened my eyes I was made PVS. I presumed that was because I wasn't talking or moving. Movement started some 2-3 months after my injury and vocalization was 8-9 months after injury. Speech production was so late that it was thought that I would never talk. I need to add this to The Order of Coming Back.

A few years later I am moved to another hospital. This is my sixth placement. My diagnosis is changed to Semi-Vegetative because I'm vocalizing. I am put up front for visitors. "They put Angela in a wheelchair right in front of me and told me I could start playing. While I played Angela said to me, " I used to play that song on piano." I was shocked that she was able to speak and carry on a conversation...." Read the part from David S. http://thoughtfulveg.blogspot.com/2012/02/angela.html

I leave that hospital for my own home. I am not discharged, but care is transferred to family. Before leaving, I actually argued with a nurse I'm not vegetative.

Years later I'm given a swallow study at my local hospital. Again - the test was done before when I had pneumonia, and a second time when the government stopped providing the formula for the feeding tube. The test was also done years ago at the rehab hospital. I swallowed to my lungs not my stomach. I remember the rehab used red Jello. The Jello came out my nose. 

I didn't swallow for these other tests and remain Semi-Vegetative. Now the rehab diagnosed dysphagia after the first test. Dysphagia is an inability to swallow. The later testing should have occurred after therapy to determine effectiveness of the therapy. Instead testing has been used as a determining factor in providing services, and this last time... as punishment? To use it as a means for stopping nourishment is only punishing and abusive. If you thought the Terri Schiavo outcome was bad, I am aware and can speak. She probably only had limited awareness but then you get into what I believe is going on. For that you will have to look into neurogenesis. I've previously written about neurogenesis. Here's a few:  Neurogenesis Is a Process, Stop Calling It a Coma, The Problem of Neurogenesis, My Late Recovery. I've written much more. You'd think I've written a thesis.

So you have to swallow to be conscious? I don't swallow and am not conscious.

___________________________________

If you want to watch a pretty girl eating a lollipop, then 

The whole thing is 15 minutes of the girl eating a Blow Pop and then blowing a bubble. I know because I skipped through the video.

Now I avoid Blow Pops because they have gum and they are big. Dum Dums, a smaller lollipop, are more my size. I also like some of the all natural vitamin lollipops. You have to look around. I need to work on swallowing and not licking. Gum is not meant to be swallowed. I want the lollipop small enough for lip closure around the candy.

Speech therapists did your training ever focus on just swallowing or only speech production? One told me both. I'll work on moving the lollipop in my mouth with my tongue. I especially pay attention to my weaker side. I will specifically place the candy on the weaker side. I will not keep it there for the duration, but I want this area exposed and stimulated. Children won't do this.

___________________________________

I have some lollipop videos, but they are more than just eating a lollipop.

Heal Thyself

"So maybe the first thing I will think of, will be to actually use my brain to restore my...." He then states eyesight. I cover that in another esasay, http://thoughtfulveg.blogspot.com/2017/03/lets-make-deal.html

The man is answering a question about trading eyesight for IQ. I am doing another physical skill now, but this is along the same lines that I am experiencing. My eyesight is good enough to get by. I'm no longer  blind in my right eye and I can see the computer screen.

Currently, I am working on swallowing. I swallow throughout the day, but it is not controlled. I cannot eat and have a feeding-tube for nutrition. I remember dealing with this issue years ago with some toddlers. Parents were recommended lollipops. I now use a lollipop.

This is actually called something, Functional Oral Rehabilitation. I call it Lollipop Therapy. "Conclusion: Sucking lollipop exercise could be a prospective option which improves the oral environment in addition to oral function of dementia patients." Functional Oral Rehabilitation using Lollipop Candy for a Dysphagia Patient with... | Request PDF. Available from: https://www.researchgate.net/publication/277634496_Functional_Oral_Rehabilitation_using_Lollipop_Candy_for_a_Dysphagia_Patient_with_Moderate_Dementia [accessed Feb 16 2018].

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"Boom, now it's gone." I can say that.

When patients have a rare deadly disease, they need to be in clinical trials.

I didn't have cancer, but it was just as deadly. It was immediate pending death due to placement.

I'm still here and the anomaly in my brain is gone. I'd say the clinical trial worked. This was just one issue in a list of many that had to be resolved. It was probably the most important issue, because I couldn't do anything if I was dead.

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Since I immediately wouldn't die, I could think about other issues I had. "I could think." That meant I was misdiagnosed. I searched around and came up with Locked-In Syndrome.

I now look like a person recovering from Locked-In Syndrome.