Wednesday, February 29, 2012

A Special Kind of Stupid




Renee   6:11pm Feb 27
the thing is people think im dumb when im obviosly not damnn strokes,
people can be so cruel with things they dont understand :/


People have misconceptions. I had a stroke. I talk funny; very slow. People think they have to talk  slow to me so I can understand. Not so. I understand fine. My mouth just doesn't work. Be careful. I may think you are the idiot.

A while ago, I was at a new hospital (there were many in my long stay). I was fed up by then with new staff having to learn my qualities. So I had a bit of an attitude.

I could hear a nurse outside my room in the hall.  She was talking and laughing with her friends. She came into my room and she changed. She spoke to me very slow and simple, like I couldn't understand. I was getting angry, and she continued. I was just getting angrier. Finally she finished. Lucky for her I'm a smart-ass. I said, "You must be special."

She stopped right there. "What?"

She must have been a special kind of stupid. I'll just say I was never treated that way again at that hospital.


Wednesday, February 22, 2012

If You Could Only See



Research in this country on brain injury is worse than next to nothing. It's lied about-from the politicians to the survivors. All I have to do for an example is say look at me-did I get research and services? The government decided a while ago there is no recovery from a brain injury. The example for that is Terri Schiavo.

I was banging my head trying to figure out why it's so hard to get services (even when they exist). I used to do this for a living, get services for the disabled, so I shouldn't have a hard time. If you remember, Terri Schiavo had a brain injury (from a heart attack) and a feeding tube. It was a right-to-life case, but think about what happened, the outcome affects brain injury. They said she could die because her brain wouldn't get better. I went back and looked at videos. Even doctors disagreed.
 
Now how does that affect research and services? You don't get any. To the government the brain doesn't get better, so why waste money on services and research? As you can see, everything "innovative" I got was from private paid resources. Even my brain surgery (which the government wouldn't pay for) was done at Stanford, a private university. I'd be dead now if that didn't happen.
 
Watch the video in http://thoughtfulveg.blogspot.com/2011/05/neurological-epidemic.html Know that brain injury is part of this "neurological epidemic." He talks about how "the government dropped the ball." It did. Private resources have picked up what they could. In the meantime, many Americans are wondering when they will get better. Well, they won't if it's left to the current state of the government.

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For those of you who don't know, I'm part of this "neurological epidemic." I wasn't supposed to be able to write this according to the government. Ask a private paid researcher, though, and it's possible.

Thursday, February 16, 2012

I'll Take Combo #1

 

DEPRESSION has come up with many diseases. It's a common problem. I specifically look at a certain medication, because of a personal experience I had. I look at the SSRI, selective serotonin reuptake inhibitor. It's an antidepressant. It is commonly prescribed with many disorders, or on its own.

First, my personal experience:  I took an SSRI soon after coming out of a coma due to a brain injury. The medication was for an immediate behavior, but we see later indications that the drug may have had other effects.

http://hddrugworks.org/index.php?option=com_content&task=view&id=203&Itemid=119 states specifically Prozac. So have a few other studies. If you look at my personal experience, though, I did not take Prozac. I took a different SSRI. So the whole group of SSRI needs to be looked at, not just one medication. This group is associated with neuronal growth. "Increasingly, scientists believe that SSRI drugs work in HD and other diseases by stimulating neurogenesis.  Researchers from Europe and Australia have shown that fluoxetine (Prozac), an SSRI drug, increases BDNF levels, improves cognition, and greatly enhances neurogenesis in a mouse model." This "stimulating neurogenesis" means it would affect MANY other problems and diseases. 

Now I get to the combination of SSRI and therapy. The key word is "combination." This, http://www.scientificamerican.com/article.cfm?id=prozac-extinguishes-anxiety-rejuvenating-brain, got me thinking about the combination of medicatiion and therapy. I looked more into it and found http://www.ncbi.nlm.nih.gov/pubmed/15315995. "CONCLUSION: The combination of fluoxetine with CBT offered the most favorable tradeoff between benefit and risk for adolescents with major depressive disorder." CBT is cognitive behavioral therapy. More on this combo... "The research may help explain why a combination of therapy and antidepressants is more effective at treating depression, anxiety and post-traumatic stress disorder (PTSD) than either drugs or therapy alone. Antidepressants may prime the adult brain to rewire faulty circuits during therapy." http://www.scientificamerican.com/article.cfm?id=prozac-extinguishes-anxiety-rejuvenating-brain&WT.mc_id=SA_WR_20111228

When you get to me, you wonder, "How could this be? What kind of therapy works on that?" The clue lies in here http://thoughtfulveg.blogspot.com/2011/09/they-are-neuroplasticians.html. I attended rehab at the earliest. Rehab got me started. The Early Intervention ("They Are Neuroplasticians!") came next. The whole time in the medical system, I took the SSRI. There again would be that combination of drug and therapy.

"They are not just antidepressants.  They are first-line treatments for most of the symptoms in HD including anxiety, irritability, and depression. They help to restore healthy sleep patterns, and they improve cognition.  Their use can often decrease the need for antipsychotic medications http://hddrugworks.org/index.php?option=com_content&task=view&id=203&Itemid=119." No, they are just not antidepressants. I'd call them "neurogenerators." They start the basic neural process, generates it. The therapy develops it. Once it's done, it's up to you as to what you do with it.

Friday, February 10, 2012

No Soup For You


It's so hard to get services. "No services for you." Oops, that's "No soup for you." Same thing.

I talk about that in "An Attitude Adjustment" http://thoughtfulveg.blogspot.com/2011/08/attitude-adjustment.html, and we see it happen with more severe disabilities in "Why Wait So Long" http://thoughtfulveg.blogspot.com/2012/01/why-wait-so-long.html. I had to think "Why?"

Why is it harder to get services for brain injury and not other disabilities? This is an area in which I worked for years, and I was finding it hard for myself.

It occurred to me, and this will come as a surprise to many why:  Terri Schiavo.


How could this one person cause all this? It was actually the case about her. Terri Schiavo had a brain injury caused by a medical condition. She ended up having to be fed through a feeding tube. The Florida Supreme Court decided that she couldn't recover and her feeding tube could be removed. (In other words you don't have to feed her. I know this sounds crude and barbaric, but that's all a feeding tube is.)

It was a Right-To-Life case, but basically, that Florida Supreme Court decision decided all brain injuries. It said the brain could not get better if injured. Other states follow it because it set a precident.

Now we get to services. The government is not going to spend money on rehabilitation when rehabilitation isn't possible. (I know firsthand this not to be true.) It determined how services would be given (or not given) if you have a brain injury. It also perpetuated  a national feeling that the brain was irreparable. It was incapable of being rectified, remedied, or made good:

I was reading https://americanhospice.org/caregiving/coma-and-persistent-vegetative-state-an-exploration-of-terms/ which gives explanation of a lot of terms. This is what most will come across if faced with a brain injury. It is set up for the dieing though.

Remember, the court found that there is no recovery if the brain is injured. I disagree. I'm not dieing. Recently I read: 
1) Functional neurogenesis: This is the fairly recent discovery that thoughts change brain structure. Even more fascinating is that thoughts alone can trigger the healing of brains severely damaged by strokes or other causes. This healing begins precisely in the same brain structures responsible for our sense of self, personality, memories, and relationship to god. The newly formed brain cells then migrate throughout the brain to where they are needed. (Dr Melvin Morse's personal blog)

The brain DOES get better. This changes all those rules. Services will have to be there for those with brain injuries, and what is already will have to be more easily accessible to persons with injured brains. This will just be one more area to cover in Civil Rights. Not soon enough, either. There are many soldiers with brain injuries returning home to a country with the belief they can't be fixed.


Saturday, February 4, 2012

Angela...

The following is an e-mail a friend did. The article is at http://www.mercedsunstar.com/2012/02/04/2217293/mike-tharp-they-thought-she-would.html
(Correction, the article is now only here because the newspaper changed ownership.)
Updated 4/21/2016
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From: David S.

The below story is about my friend Angela; an amazing woman. I first played guitar for her when she was in the Sub-Acute area of El Camino Hospital. A nurse one day begged me to come and play for the people there that had no hope. They were what are referred to as "vegetables" and when I first saw them pushed into the room I was getting ready to play (in beds and wheelchairs)….I wondered will these people even be able to hear music… A sadness came over me as I looked at them. 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 - even though she was a little hard to understand in the beginning, I found Angela to be a sweet and extremely bright woman with a GREAT sense of humor. I played for her every time I went to the hospital after that until she moved out about a year later. These are pictures before she left El Camino Hospital. The newspaper article is the best I've seen of the many write-ups on Angela and it summarizes everything she ever told me about what happened to her.




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Saturday, Feb. 04, 2012

Mike Tharp: They thought she would be a vegetable

What if you had to learn to think again?
What if you had to learn to speak again?
What if you had to master the act of typing only with your left forefinger?
What if you had to eat through a tube in your stomach?
Angela Ronson, a 42-year-old Atwater native, has had to do all that -- and more.
And she's done most of it all by herself.
In 2002 while at work in Sierra County she had a bleeding stroke, an arteriovenous malformation (AVM) burst. She wrote about it all in a 2009 article in a publication called "Stroke Connection." Even after the AVM burst, she didn't feel bad enough not to drive home for lunch. While driving, she passed out and had an accident, but was taken back to work. With a bad headache, she walked to a nearby clinic.
"At the clinic I stopped breathing," she wrote. "They took me to a hospital, where they put me on a helicopter and flew me to a trauma center."
Surgeons operated on her brain; afterward, she was in a coma. Her family was told that if she came out of surgery alive, she would be a vegetable.
"I did come out of the coma but couldn't talk or move, which made me appear to be a vegetable," she wrote. "I was alive but I had something in my head that could kill me any time -- from something as simple as shaking my head 'no.' "
She started therapy, only able to use her left side. She taught herself how to use the controls on her wheelchair with her left hand, how to type on a computer with her left index finger, how to write left-handed.
"I had worked with babies as an infant development specialist," she wrote, "so I already knew a lot of what to do."
In 2004 doctors at Stanford removed the AVM. She has continued with her therapy, largely on her own. Today she specializes on her right side. One of her victories has been to place 20 or so colored plastic pegs into holes in a plastic square with her right hand, then remove them. She's cut her time down to 30 minutes.
"Nobody expected this kind of recovery," she wrote. "What kind of vegetable can think, talk or write? I still don't know what kind of vegetable I am."
During her long recovery, Angela says she lost her house, job, most of her savings and possessions and, for a while, her two daughters, Marina, 17, and Sarah, 16. Five years ago she moved into a house in Merced owned by her father. It's been in that small bungalow that the miracle continues.
She gets by on In-Home Supportive Services and Medi-Cal.
She has used her master's in special ed and experience as a program manager for early intervention programs for babies to reach out to others -- through cyberspace. She blogs, she tweets, she consults dozens of websites every day and carries on a lively email correspondence. She's on Facebook and Google. She's got a PC at a desk in her living room and a laptop in her bedroom. "I'm thinking about getting an iPad," she says.
Dr. Melvin Morse, who has published several articles in medical literature on near-death experiences, writes of Angela: "She has developed an impressive network of cutting-edge brain researchers. ... Her extraordinary recovery and what she has done with her life after seven years of coma (and semicoma) are one of the most inspirational stories I know."
In her 2006 book "My Stroke of Insight," Jill Bolte Taylor, a Harvard-trained brain scientist, relates how she suffered a massive stroke similar to Angela's. The book is about the eight years it took her to heal. At the end of the book she writes: "Your body is the life force power of some 50 trillion molecular
geniuses. You and you alone choose moment by moment who and how you want to be in the world."
Angela does just that, day in and day out. She awakes at 7 a.m. and her nephew Brandon, who lives next door, comes over a little later to fix up her feeding tube. She maneuvers her electric wheelchair around the small living room and kitchen, and her sister and daughters help out during the day and night.
"When I need something they help me," she says. "They make everything accessible."
Her eyesight remains weak so it's hard for her to read books, though she watches CD movies and perceives online images. Besides her life on the Internet, her short-term goal is to be able to use both hands to type. Her long-term goal? "I'd like to be able to walk or something."
With that she pushes up with both hands from the sides of her wheelchair to a slightly stooped standing position. The feeding tubes are visible under her shirt. She stays there for a few seconds, then slides back down.
"What the heck?" she asks. "It's a miracle. I'm supposed to be lying in bed, not trying to stand."
In her two blogs Angela dispenses guidance to others with similar problems. "Rehab is so little you will have to do more on your own," she wrote in December 2010. A month earlier she wrote a long post on how to best use Medi-Cal and Medicaid.
In a story on PopSci.com earlier this week, Rebecca Boyle wrote about UC Berkeley researchers trying to "decode patterns of activity in the brain. It's a major step toward understanding how we hear -- and a possible step toward hearing what we think."
It might be a good idea for those scientists to drop by Angela's place on 25th Street. There they'd find that an amazing woman has decoded her brain and is rebuilding it. As Angela puts it: "My mind is making itself better."
Executive Editor Mike Tharp can be reached at (209) 385-2456 or mtharp@mercedsunstar.com

Thursday, February 2, 2012

The Talking Vegetable



At the last hospital I was at during my long stay, I was classified "semi-vegetative." What was that? I looked for a definition. I couldn't find one. Finally, a doctor on a social network told me, "It's semi-PVS."
 
Was medicine trying to break down the barriers of politics? I had moved up in PVS to "semi." Were they going to come up with another level? Even if they did, it wouldn't be for me. I'm beyond that now. I was laughing with someone today, "Do I look vegetative?" "No."

A  while back there was a woman named Terri Schiavo. The government decided she could not recover from PVS (Persistent Vegetative State), and therefore she could die. So, once PVS always PVS. Or, once a vegetable always a vegetable.

So I came to the conclusion, I talk and I'm PVS. I'm a talking vegetable!