Jun 25, 2016

Brain Parts, Whole Transplant, or a Completely New Head for Stroke Survivors? Um, Seriously?

I was having a rotten day. The mail guy came early and, as a result, my payment was one day late; I received the wrong change at the supermarket that ended up being a thirty-minute wait to get the error corrected; and the bank, PNC, wouldn't eliminate the overdraft charge of $36.00 because it was the website's fault. Small potatoes, right?

Yeah. I suppose so, but that realization came a few days later. A bad day for most stroke survivors means a rise on the anxiety scale and frustration "outta here!" Not all stroke survivors have high anxiety, but most, especially in the beginning. So I got to thinking, I need new parts for my brain to calm the matter. My injuries were to the frontal and parietal lobes. Could I replace them? I was "out there" and knew it, but I did some research to find out anyway.

The first article I came across was this: First Successful Brain Transplant, I read, written

"Recently, scientists at the University of California – North by Northeast performed the first successful human brain transplant.

"Said the lead neurosurgeon, Dr. Cranial Head, MD, 'This is a breakthrough of unprecedented magnitude. I’m ecstatic that all our research and hard work finally paid off. We couldn’t be more pleased with how things turned out.'

"The patient, who only agreed to be called Jose Ivanovich O’Malley, III for anonymity reasons, suffered a massive anterior communicating arterial stroke that left him severely incapacitated. He was a veterinarian at a local clinic before his stroke. His family heard about the research Dr. Head’s team was doing with rats and contacted him about the possibility of his first human subject. Dr. Head agreed immediately, 'I saw this as the perfect opportunity to advance our research out of animals and into humans. We’ve had great success – recently – with brain transplants in rats so it was only logical to start human trials.'

“This new brain transplant surgery is quite remarkable, actually,” said Dr. Head. “My colleague, Dr. Inis Wu, and I first came up with the idea 40 years ago while we were competing in a triathlon. It came out of the blue, really, neither of us are quite sure why we thought of it but here we are.

"What’s remarkable about the surgery is that it is done all under local anesthetic and the patient is kept talking throughout the procedure, except for the time when the brains are switched (during this time the patient is placed on life support).

"In this case, the transplanted brain came from a local high school physics teacher who suffered a sudden and unexpected heart attack. He was not only young but also in good health. His family has chosen to also remain anonymous. The transplanted brain is removed from the original body and cooled to halt neuronal death. The end of the severed spinal column is treated with a new nanoglue that automatically starts splicing individual axons to the new spinal cord when the transplant brain is placed on top.

“It’s incredible,” said Dr. Head, “we actually don’t have that much work to do because with this new nanoglue the process of reconnecting nerve fibers is automatic. It only takes 4 minutes. We just inspect the brain and spinal cord to make sure everything is lined up correctly. The nanoglue is also applied to areas like the optic nerves, that need to be spliced into the new brain."

"After the surgery, Jose made a speedy recovery. Within 24 hours he was moving his limbs and within a week he was walking and talking. His wife said, 'It’s a miracle. We thought that Jose was gone forever but Dr. Head saved him. He doesn’t know who any of us are, of course, because he has a new brain but we are all willing to work with the new Jose and learn to love him and hope he will learn to love us.' When asked if he planned on returning to work, Jose stated that he couldn’t wait to return to teaching physics. 'I’ve always had a love of physics. There’s something about gravity research that really attracts me.' Jose doesn’t remember any of his past self or his work as a veterinarian but has accepted the story of the doctors and his new family.

"Disclaimer: the previous post is meant to be humorous. Surgeons have not performed and cannot at the present time perform brain transplants. It is not possible to perform a brain surgery at this time, regardless of what you might have read online or heard."

Uh, that comment really wasn't necessary, I said to myself. Dr. Cranial Head gave it away. And so did the erroneous anonymity of the patient. I continued researching.

A PBS Nova segment focused on growing brains, or parts of them, in the laboratory setting. Tony Atala, director of the Wake Forest Institute for Regenerative Medicine and head of one of the premier tissue-engineering labs in the country, says, "That's kind of out there. As a scientist, you never say never, because you never know what will be within the realm of possibility several centuries from now. But certainly to replace a lobe today, that would be science fiction with current technology."

How about an entire head transplant? Paul Root Wolpe, a bioethicist at the Emory Center for Ethics at Emory University, said, "You are talking about a fundamental kind of change whereby a body becomes simply a means of supporting a head, where your sense of what it means to be a whole human being has been compromised in a very new way," he says.

Wolpe continues, "One's very sense of selfhood would be at stake. In the West we tend to think of the brain as the locus of self, but culturally that is a very new idea, and it's still not shared in many cultures, he says. Consider Japan, where the locus of self is thoracic and abdominal. That's why when you commit seppuku you disembowel yourself, you don't cut your head off, because you're attacking yourself at the seat of selfhood.

"The notion that if you put his head on someone else's body that the resulting individual would be him and not the other person simply because the hybrid had his brain is. What you may end up finding is that when you transfer a brain from one body to another, the resulting organism is not solely what one would think of as the person whose brain it was but also has enormous components of the person into whose body it goes."

Wolpe adds, "It means wiping the slate clean and now having a pre-birth-level brain in a 60-year-old person or whatever. I'm not sure of the medical problem that that solves."

[Neither do I].

The Huffington Post posted this article: Human Head Transplants Now Possible, Italian Neuroscientist Says. [Now we're getting somewhere].
"In a provocative [uh oh] new paper, an Italian neuroscientist outlines how to perform a complete human head transplant, arguing that such a surgical procedure is now within the realm of possibility.

Dr. Sergio Canavero, of the Turin Advanced Neuromodulation Group in the project called GEMINI which was published in the journal Surgical Neurology International, says, “The greatest technical hurdle to such endeavor is of course the reconnection of the donor’s and recipient’s spinal cords. It is my contention that the technology only now exists for such linkage. This paper sketches out a possible human scenario and outlines the technology to reconnect the severed cord."

He went on to say, with the prohibitive cost of $13 million, the procedure might be addressed. And even some commenters on Reddit said they would be willing to donate their heads if given the option. [And so, once again, the wackiness starts].

Dr. Canavero said that "a clean-cut must be performed to disconnect and reconnect the donor’s head at the spine. Then, special adhesives—such as polyethylene glycol (PEG)—would be used to fuse the donor’s head and spine to the recipient."

But not everyone is so inclined to go along with Dr. Canavero's plans.

“It’s complete fantasy, that you could use PEG technology in such a traumatic injury in an adult mammal,” Dr. Jerry Silver, a neurologist at Case Western Reserve University told CBS News. “To sever a head and even contemplate the possibility of gluing axons back properly across the lesion to their neighbors is pure and utter fantasy in my opinion. This is bad science, this should never happen.”

Think about it for a minute. We would have gotten rid of our selves, the people in your life you love,  the people you despise. We would have brand new neuroses and/or psychoses. The easiest part would probably be re-connecting blood supplies, but the broken nerves in the central nervous system and the spinal cord in a mammal? 

That's complicated stuff right there.   

Jun 5, 2016

10 Ways to Know if Your Caregiver is Burned Out, aka Trust Me on This. There Are Other Caregivers!

Everybody makes mistakes--like the cashier giving the wrong change, customer service representatives saying "no" when they should have said "yes," an accountant telling you about a refund when instead you owe the IRS. But a caregiver? Aah. That's bad news any time. Don't read any further if the caregiver is your spouse. You, my fine friend, have to deal with it.

So if you're not married to your caregiver, more than likely, it happens from burnout. I'm an expert in knowing when my caregiver is burned out. It didn't happen all at once for me, and it took a while to figure it out--over 4 years with the same caregiver.  I'm a slow learner and I have a long fuse--bad combination, for sure.

That person didn't understand stroke survivors who, especially during the first few years, are angry, frustrated, hard to please. But I am peaceful now--with that person not screaming hysterically at me, shattering a glass-topped table, generally going ape-shit on me from time to time. That person is probably at peace, too, without me. There's nothing better than peace of mind. The pattern is the thing. Everybody is allowed mistakes randomly as long as it doesn't become a pattern.

Your caregiver's intentions may not be so overt--subtle even, but the burnout is there if you look for it with my favorite top ten, the list assembled by actual stroke survivors across America to my question: do you have problems with your caregivers? I saved the stories, knowing that one day I would publish them. All but one didn't give the caregivers the keys to his or her place. The names have been changed--not the cities or genders--to protect the survivors, not the caregivers. Just remember, if it's a pattern, there is always someone else to fill the shoes.


When Renee from Philadelphia, Pennsylvania, said come at 8, that number wasn't arbitrary. She based it on her schedule. For cryin' out loud, you decide when the caregiver should come for any reason, even if you don't have appointments. Let's say you're having a crappy day and all you want is company. Then it's the caregiver's job to do that, too. Renee put up with so many excuses: the dog ate the schedule, I thought it was Sunday, my roommate moved my car and I thought it was stolen. Sheesh. Renee finally had enough.


I've heard from people all over the world and sometimes, this event happens. The awful story came from a lady in Omaha, Nebraska. The caregiver was watching "The Price Is Right" and Lucy was choking on her lunch. Lucy made a gagging sound, which the caregiver heard, because she put up her index finger to indicate, "Wait a minute." The caregiver was waiting to see who would win the "grand prize."

Lucy was able to call the paramedics with her "Life Alert" button and then passed out from lack of air. Did you ever hear the "Life Alert" button activated? It's goddamn loud. Still no response from the caregiver. The paramedics came in 5 minutes when the dispatcher got no response while still connected, but the caregiver wanted to watch the news right after, so she was surprised to see the paramedics. Lucy recovered after being taken to the hospital by ambulance. The caregiver was fired on the spot by the family a few hours later. I mean, WTF!


From Los Angeles, California, come this email from Charles. He thought his caregiver was snooping around because Charles has an excellent memory. At first, Charles began to second guess himself. He thought it was his imagination getting the better. Maybe the papers were scattered about originally, maybe my checkbook wasn't in the place I remembered. But when he came into the living room rather than going to the bathroom, he saw his caregiver looking at his tax return. He went ballistic and his firing her didn't take long at all.


Helena from New York knew her caregiver moved around a lot, going from client to client. This one time, Helena opened the door and her caregiver looked like she had been in a bar fight. She had dried blood on her cheek and various scratches and open sores on the arms. She stopped at the entrance to her apartment and asked Helena if she could use her shower because she wanted to "clean up." The caregiver had just come from a violent Alzheimer's client. Helena waited a few moments until sensibility ruled, and then said, "Come back when you use your shower." Spoken like a true New Yorker. Three cheers for Helena!


Why do you have caregivers? That's an easy one. You need help; caregivers provide it. So it surprised Dan, who had a 2 bedroom apartment and 24-hour care for a week when he first returned from the hospital, that when he called out for his caregiver at 3am to assist him in going to the bathroom, no answer was what he got. After three times, he shouted her name. Still no answer. He somehow transferred to the wheelchair in a sweat because he really had to go and went to her room. She was in a fetal position, sound asleep. Dan, who was not a lunatic, moved his wheelchair next to her ear, and screamed, "MARY!"

She got up and took him, right in time, to the bathroom, and after he was finished, he called for her. Mary said she was offended that a male, meaning Dan, came into her room. Forget the fact that if Dan went to the bathroom by himself, he could have cracked his head open on the tile floor. Mary came three more times, but Dan noticed a change in her attitude, because now, she had an attitude. Dan had the locks changed on his house and phoned Mary not to come anymore. She asked why? Seriously?


No soap. Radio. Those old enough to remember that punch line in the 70's with a monkey joke in front of it was used to determine if people would laugh at anything. And some did. Finally, most would eventually laugh out loud at the absurdity of it all. This email came from Barbara in Jacksonville, Florida, wasn't as funny. She lives in an apartment and had a bowel accident just an hour before the caregiver came. Once the caregiver arrived, she cleaned Barbara up and got her in the shower. She went to do the wash three floors below and said she'd be "right back."

But the caregiver had to wait until a washer was free and the wait was about fifteen minutes. So she decided, poor judgement in place, to wait until the washer was freed up. Meanwhile, when Barbara, 3 floors above, spotted the washcloth in the shower, no soap. She had to wait, with the water running, 15 minutes until her caregiver returned.

"Are you finished?" her caregiver wanted to know. Barbara said she had no soap. "Water will do just as well," said the caregiver, when both Barbara and the caregiver knew it wasn't true. Barbara gave her a few more chances, with her caregiver repeating major errors like the no soap one, and then she had to let the caregiver go. If it's not right, exclaimed Barbara, I don't want to deal with it. It's my dime! Good for you, Barbara!


Claire in Richmond, Virginia, sent me an email that wasn't humorous in the least. She said her caregiver had trouble when to take her own medicine, so she took them whenever Claire took her own. One day, she gave Claire the caregiver's own pills. When the caregiver realized it, she immediately stopped. The pills were for constipation and acid reflux. Claire had acid reflux so that pill didn't harm her, but Claire also had loose bowels, the aftermath of a stomach virus. When she took the caregiver's medicine for constipation, Claire had the "runs" for 2 days straight. She wondered how often the caregiver, who had anxiety from a long time before, did that same process? She ended her employment because Claire didn't want to wonder anymore. At least, it gave her the "runs" for 2 days. What if it had been stronger drugs, like Predisone, a steroid, or Coumadin, a blood thinner. What Claire learned was to look at her pills and recognize them by sight instead of her caregiver shoving them in her mouth.


This email came from Ben in San Fransisco, California. Every time this caregiver would come, once she walked in the door, her complaints were never-ending. "The mail didn't come until 4pm," "I have a blister on my foot," "my cat is sick again." And after each complaint came the details, long and drawn out. But one time, Ben said, when he couldn't take it anymore, she asked to switch the days around because blah, ba-blah, ba-blah. Ben tuned her out. He could have agreed, but he didn't. He said that Tuesday wasn't good for him. A little white lie didn't hurt anyone. Eventually, not too long after, the caregiver went to work for another person full-time and Ben didn't have to listen to her "dramatic sagas" (his words, not mine) anymore. That, indeed, was a win-win situation.


Elaine in Dallas, Texas, writes that she couldn't get her caregiver to be quiet once in a while. Elaine has a good memory, and she gives the hand-writtten schedule to the caregiver. But still, the caregiver talks non-stop. Elaine asks, "Should I say something?" Damn right, you should say something! If it's bothering you, don't let it. You're in charge, remember? http://stroketales.blogspot.com/2015/10/3-things-you-have-to-remember-about.html

Once in a while, I'll say, "Dome of silence, ok?" to my caregivers and that is a signal that I want to think for a while. It's better than "Can you shut up?" or "Close your trap."


And finally, this one is from me, coming to you straight from Pittsburgh, Pennsylvania. I used to have a caregiver who pushed my button once too many, manipulating me in doing things her way. When we were going home, and instead of stopping at my place, she said that she had to go meet her son at the mechanic's shop. Since I was new in town, I didn't know all the towns, but it was 20 minutes one-way out of my way for the meetup. She took her 20-something son home and I got home three-quarters of an hour after I should have, and I had to pay her for her time.

The clincher came when she used to not bring my wheelchair along, saying it was good to walk. But when I'm over the limit, nothing overcomes fatigued muscles, as a physical therapist told me later. When she knew I couldn't go on, she changed the subject and talked about something else as I slogged my way around the store. After the third time, I said she was through, to which she replied, "That's discrimination! I have a condition." That was the first time I heard of her supposed and mysterious condition, but I'd love it if she sued me, me in a wheelchair and her on her feet. The judge would laugh himself silly.

So that's why I have 3 caregivers now, each one spending a visit for doctor's appointments, food shopping, pharmacy visits, to assist me on the stationary bike, and give me a shower, for instance. I elevated their status to personal assistant, which they really are, so if they make calls on my behalf, they can say, "This is Joyce's personal assistant" instead of Joyce's caregiver which often gets confused with caretaker, but that is a story for another day.

In America, there is a website called http://www.care.com where you can find all sorts of care, even for pets! The point is, there are plenty of caregivers, or if you prefer, personal assistants, out there. The only trick is finding the right ones. After a year of searching, I have 3 great ones. Don't think you'll get lucky, even though maybe you will, and find them right away.

Maybe I'll do this again with a new batch of stories. The question is: do you have problems with your caregivers?