Free-Wheelin' Vegetable

I'm sicker than I let on.

How am I supposed to get proper care when it's not even acknowledged what's happened? Wake up medical people. There's this person who was almost completely dead, brain dead at one point, who has successfully healed from every issue. We're talking brain death. Recovered. PVS. Recovered. I'm not on a ventilator anymore. Breathing - recovered. A few years ago I looked at a PT referral. The doctor put as a diagnosis, RECOVERED QUADRIPLEGIA. I've never seen that as a diagnosis. (Technically, I would say that's the outcome. It is a result of previous interventions.) So medical people, what you did was right.

I'm PVS, though. It sticks. No one is supposed to get better. The government decided that a few years ago.  It said "Science, you can't progress. Once PVS is always PVS. There is no getting better." That's what removing Terri Schiavo's feeding tube meant. So in that aspect, I'm medically recovered, but not legally. (That opens legal loopholes for persons like me and that will have to be fixed.)
 

I guess I slipped through that crack too. The one that oppresses. The one that says you can't improve. Oh well I did and instead of fretting about that, let's fix the issues I now deal with.Let's start with "Won't get any better." I'm on the severe end, and it is VERY hard to get services. Those who are mildly affected get some, but have to fight for it. A while ago I talked about this http://thoughtfulveg.blogspot.com/2011/08/attitude-adjustment.html"Won't get any better" will have to change. Obviously it does.

So I got better. It would seem so. Is that a fluke? Not really. I just was able to access some things that should be accessible services to all. Yes, then, I'm sicker than I let on. I must be if I recently ended up in the hospital. I think I'm not done yet. When I first moved out of the hospital, being PVS was great. A creditor would call (triggered  by the ss# I think), and I could say, "She is dead."

What next? I'm not sure. We'll see, but obviously I have "Free-Will". I'm able to express thoughts- "free wheelin' thoughts".

Why Wait So Long?

 Tue, January 3, 2012 8:43:22 AM

RE: back home from the hospital

From:
To:	Angela Ronson <angelar70@att.net>

---

No feeding tube would be great.  I agree with you.  Why wait so long?  I guess again you are the only 1 out there that has made this type of progress. 

From: Angela Ronson [mailto:angelar70@att.net]
Sent: Thursday, December 29, 2011 7:17 AM
To:

Subject: Re: back home from the hospital

Why did they wait so long? If there wasn't any problems it'd be never? The speech therapist said this shoulda happened 6 yrs ago

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I was hospitalized with an infection of my g-tube. Before I was discharged, I met with a speech therapist. I told him that I took some food and drink by mouth, but not enough for nutrition. His goal: increase that so I don't need a feeding tube.

No feeding tube = no infection.

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.

HEY!

11/1/2017:  I was wondering why I had this sitting in the DRAFTS folder. I wrote it long ago, but my status is questioned now. I clicked on it and the computer tells me. There is error in the computer language. Fortunately, all I have to do is click FIX. This probably didn't exist when I made it a DRAFT. It would take me a lot of time to find and make corrections.manually.

I feel the same today as I did back then...don't ask me what happened. Ask that from who has care over me. They will continue to say I am not conscious. Ask them why. They'll tell you that in December 2016 I did not swallow. (Now I will bust up laughing. Swallowing can be lost in a stroke. I had a stroke.)
 
Hey, over here! But nobody sees me. Nobody hears me.

The "time has come today." I'm right here before you. It can be called a miracle until it is explained. I'm talking about me. I've explained some, but most of it lies in current theory. Besides, who am I to be explaining this? I'll tell you. I'm the person who this happened to. I'm the person who took the time to type this out with one finger. Yes, one finger. That's all I have. I had a brain bleed so debilitating, I could only open and close my eyes at first. It has taken me years to get up to that one finger.
 

I first wrote about it in Stroke Connection magazine, p 9. The title alone screams a clue. What kind of person would ask such a question? What kind of vegetable am I? I've been deemed vegetative. Oops. I recovered. So now what? I'm still "vegetative." It also says I heard you in a coma; a full-on, deep-sleep coma. I wasn't vegetative yet. I don't know what they teach now, but supposedly that wasn't possible.
 

So who was I? Maybe if you know that will get your attention. I was like any other person you work with. When the bleed happened, I had just taken a new job as a behavior therapist. Before that I ran a program for children with or at-risk of a disability. I knew. I knew what the big words were when describing the bleed or parts of my brain. I kept thinking, it's worse than child x who had a Grade IV bleed. At least that child could  drink from a bottle; not me, as I have a feeding tube. (I couldn't talk back, or people would see I was aware.)
 

People take technology for granted. It's the gains, though, that are responsible for me being here. I don't take it for granted.

 

People are skeptical of me, but not their iPhone. I found something on the Internet to say otherwise.

"Resolution appointing Birdsong Sundstrom and Julie Griffith as Commissioners to
the Sierra County Children and Families Commission and releasing Commissioner
Angela Ronson from the Commission due to medical reasons. (SUPERVISOR
WHITLEY)" - This is action G on p. 5 of The Sierra Co Board of Supervisors minutes http://www.sierracounty.ws/county_docs/bos/bosagenda040604.pdf (Just noticed it took 2 for 1. This is our govt!) [The link doesn't work anymore.]

The above just shows I was a regular person with a regular life. (It also shows the "regular" bureaucracy.)

So "the time has come today." Don't be skeptical of me, be skeptical of the medical practices that got me here. There will be lots of questions. Get my medical records. What was done? What wasn't done. If you want reasons, ask the original doctors involved. Don't ask me. I can only tell you what's now from my perspective. If you want to know you'll have to look at history. Don't come to me and ask "What happened?"

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.