Friday, June 24, 2016

Is it too good to be true?

Excuse me, but I used to be blind in my right eye and now I'm not, and nobody sees that as a big deal?

I've thought it was rewiring mainly, but I recently read that an over-the-counter eye medication is reversing the damage caused by MS. Could this be the same thing happening with brain injury? Eye drops or my body...both should be looked at.

"A common antihistamine used to treat symptoms of allergies and the common cold, called clemastine fumarate, partially reversed damage to the visual system in people with multiple sclerosis (MS) in a preliminary study." What brand is it in? Tavist came up.

I take a different medication. I use Naphcon-A eye drops. They are both allergy medications. At home, I will put the eye drops in as soon as I get a burning sensation in my eye. The burning stops immediately. To note, my eye may have already been closed for an extended time. It would not be dry eye. Long ago, when Naphon-A became OTC, my doctor said it was a "vasoconstrictor." It works by narrowing the blood vessels in the eye. I'm pretty sure what got me here was vascular. I had an AVM (arteriovenos malformation) bleed. I know, "'had." That's past tense. It's now gone. Isn't it a vascular problem? Blood vessel dilation and constriction is also vascular. There may be correlation here.

I do know I see now with both eyes. I may not be legally blind anymore. I would still be low vision, probably. Testing is not covered.

NOTE:  This medication has been recalled and banned due to other problems.  11/21/2016

Thursday, June 16, 2016

Amazing On Top of Amazing

In the beginning of my disability, I thought I had Locked-In Syndrome. It was mistaken for being vegetative, or PVS. "THE WALLED IN ALIVE DISEASE! (French term for locked-in syndrome)" is plain to see here.

Locked-In Syndrome is already amazing. "Locked-in syndrome is a rare neurological disorder in which there is complete paralysis of all voluntary muscles except for the ones that control the movements of the eyes. Individuals with locked-in syndrome are conscious and awake, but have no ability to produce movements (outside of eye movement) or to speak (aphonia). Cognitive function is usually unaffected. Communication is possible through eye movements or blinking. Locked-in syndrome is caused by damaged to the pons, a part of the brainstem that contains nerve fibers that relay information to other areas of the brain."

I had an AVM bleed in my cerebellum. An AVM is an arterialvenous malformation and what I had was comparable to an aneurysm. I had an AVM stroke. The bleed was next to the pons, and I remember the pons was specifically mentioned. Locked-In Syndrome is associated with damage to the pons.


What is more amazing is this was never written down until the above by Dr Morse (years later when I wasn't Locked-In anymore). What was written down was that I was vegetative, or PVS. I was in a coma. The Locked-In Syndrome is called "pseudo-coma."  "Locked-in syndrome is also called pseudo-coma because affected individuals are conscious but make little body movement – like unconscious “eyes-closed” coma patients or unconscious “eye-open” vegetative state patients." I was vegetative, eyes open.

It is classified as Classic, Incomplete, and Total. I am guessing I was Incomplete. I did shake my head early on, so I did have some movement. As time went by I gained more movement.
It is possible to have some recovery from this disorder. The following study uses fourteen patients. This is a rare disorder. It would be difficult to find 14. "In a series of 14 patients with classic or total locked-in syndrome seen 3 to 6 months following neurorehabilitation, motor recovery was found in 21%; return of swallowing in 42%; verbal communication in 28%; bladder and bowel control in 35%; and weaning of the ventilator in half of the patients,"  

Some recovery is possible. It doesn't always happen, but it has. It is not a miracle. I've looked exactly like this. I do not look vegetative right now. I look like that description.

So I've had something that is amazing, and I've made a more amazing recovery, but it has been mislabeled. It all becomes a miracle. On top of what is already amazing, I propose I may have one more amazing thing. I propose I have Savant. Syndrome. You are reading (following) this aren't you? Case closed. Without it, a severely brain injured person will have difficulty communicating in this manner. I know a few brain injured persons with blogs. None of them are PVS. PVS is yet to communicate.

I already do this, "Those who recover some motor control in hand or head (as will over half of the patients) can use this to communicate with a computer and sometimes control their wheelchair." I am using this computer, and I use my electric wheel chair. Due to the Savant Syndrome, I propose I will be doing more. My control and range of motion are already considerably more than when I was in the hospital.

It is possible that I was vegetative, PVS, and my progression has been towards Locked-In Syndrome. My case should have been updated along the way. It is possible there was misdiagnosis of my condition initially. I was in a pseudo-coma when I first opened my eyes. Either way, I am not vegetative and my records should reflect that.
I am listed as PVS, Permanent Vegetative State. (When I started making sound, I was trained to say my diagnosis was "Semi-Vegetative.") I'm saying a goof was made. I am not permanently a vegetable! Back then I should have been listed as Locked-In Syndrome. It's too late for tests now as I'm not locked in anymore. Questions of consciousness should not be directed at me. LIS is conscious. My current state, PVS (on paper), is not conscious.

UPDATED 3/16/2017

Thursday, June 9, 2016

I'm Here

I don't know what I am, but it is definitely not vegetative.

A grad student once proposed that what I have is more like an extension of Locked-In Syndrome. This person knew nothing about how I previously believed that I had Locked-In Syndrome compounded by a vision problem. This was then misdiagnosed to be vegetative.

I could not respond to letters on a letter board if I couldn't see the board.

Isn't this the problem of poor academic performance? For years students who performed poorly were found to need glasses?

I was just the extreme. I've had improvement in vision, but progress has been as slow as everything else.
Now here's an idea...people who are conscious in a coma aren't in a coma at all. They have a severe form of Locked-In Syndrome where there is absolutely no movement; not even the eyes. This person appears to be in a coma because they can't open the eyes.

I can propose this idea of a severe LIS (Locked-In Syndrome) because I could hear before my eyes were open. "Hearing was definitely first. I could hear before my eyes were even open. Coma scales talk about lighter coma as it ends. This would be that." Researchers will be interested in this essay. I list the order of the skills I have acquired since opening my eyes.

On top of everything, I propose I have Savant Syndrome. I would remember something as little as hearing in a coma so long ago. You would also get this analysis, all typed with one finger. (By the way, as I type, I notice my left eye is shut. This is probably my body's way of treating low vision in my right eye. Remember the doctor patching the stronger eye in children? The same thing is happening here.)

All kinds of people have suspected I was Locked-In. I never had to tell them the suspicions I once had. "For two years, Angela suffered the “locked in syndrome”!  This is a horrifying condition in which the patient is conscious and yet has lost virtually all motor function."

What I now have is more likely related to what I once had. I never thought it was Persistent Vegetative State.  I suspected Locked-In Syndrome. There wouldn't have been a regaining of consciousness at all. I have had progression to higher consciousness, but Locked-In Syndrome is already conscious. I've been conscious the entire time my eyes have been open.

What about people already conscious in a coma? Well, they really wouldn't be in a coma, now would they?

Is there anybody in there?
(A savant has to have some music somewhere.)