Post-Traumatic Stress Disorder and Stroke Survivors: It's Real As Rain

You probably don't know why June 16, 2013, is a famous date in world of stroke survivors unless, of course, it's the date of your birthday or an anniversary, your friend or family's birthday, or, I'm sorry to say, the date of your stroke. Almost everybody remembers that!

But also on June 16, 2013, a startling discovery was released, linking post-traumatic stress disorder to stroke survivors. One in four have something else to add to their list, as if stroke isn't bad enough. And I am the one in four.

Post-traumatic stress disorder (PTSD) is an intense physical and emotional reaction to a traumatic or life-threatening event, typically associated with combat veterans and sexual assault survivors. Now, it's stroke survivors, too. If you're a stroke survivor having a problem obtaining disability benefits, this post may be the missing piece.

In fact, the study, published in the journal Public Library of Science, also discovered that people who had PTSD after a stroke could have a greater risk for heart problems or another stroke because of the physical, psychological, and emotional problems they must endure.

The study main honcho, Dr. Donald Edmondson, is an assistant professor of Behavioral Medicine at Columbia University Medical Center in New York City. He said the data showed that experiencing a stroke, or any other life-threatening condition, can pose grave physical, psychological, and emotional manifestations, thus, severe mental problems that often go unacknowledged by physicians and family members. 

They were all there, those horrific PTSD symptoms. Depression, suicidal thoughts, laughing or crying when the situation called for the opposite response, rapid heart rate, frustration and anger over the smallest of incidents, nightmares, flashbacks, palpitations, chills, severe anxiety, irritability, difficulty sleeping, headaches, negative self-image, all or part can last a few months or even the rest of people's lives. I feel sorry for the military and rape victims who have PTSD, but welcome to the PTSD of a stroke survivor, too. I experienced all of those symptoms for 3 years. Now, 7 years post-stroke, I still get frustrated and anxious above the norm.

Said Dr. Edmonson, "We walk through our lives with the naive belief that we're invulnerable. Often what is traumatic  is that such unspoken assumptions are broken. People must adjust to the shock of what has just happened. PTSD [in a stroke survivor] is a huge detriment to quality of life, a debilitating disorder in its own right, and deserves to be treated. There is something different about PTSD after a stroke because the threat is inside your body." Indeed it is.

Dr. Rafael Ortiz, director of the division of Neuroendovascular Disease and Stroke, Lenox Hill Hospital in New York City, said, "This is the first time PTSD has been so closely associated with strokes and TIAs [Transient Ischemic Attacks]. It's important that after suffering from a stroke, people are taken care of by a comprehensive team of doctors and other specialists, including psychologists and nurses who are very well-trained." 

And there it is, nestled in the words of the good doctor. Psychologists! Stroke survivors need psychologists, or psychiatrists, or licensed social workers to work with the pitfalls of having a stroke. In my perfect world, here is how it should go:

Assign a psychologist, psychiatrists, or licensed social workers to the patient immediately, to be there every day for the initial 2 weeks, weekly after that, to tell the patient how important it is to comply with all the health professionals, doing what they do--i.e., the nurses, doctors, therapists, even if you doubt them, and what the consequences are if you don't comply. Aah. That would have made all the difference to me who sometimes wouldn't comply. My right, dead arm might have moved, my right leg might have made me walk faster.

I saw a psychologist twice, a psychiatrist once, in my 15 weeks of rehab, and not initially. The hospitals say they don't have the money for the initial 2 weeks of counseling, weekly after that, yet the top officials of "said"  hospital have their salaries going through the roof. It's the same way everywhere. 

"Take a little less salary to initially afford psych teams," I would say, "and that will put your hospital first 'on the map,' with a psychological group the first 2 weeks that stroke patients are there." But alas, most stroke survivors don't care enough, and I don't blame them. That was me, 7 years ago, along with my family and ex-partner, with a lot more on our plates than we could handle. 

Neuroplasticity and Stroke Survivors: Reversing My Limbs? It's Starting to Work for Me!

I don't know what to call it. I just simply don't. A kind of neuroplasticity? Let me tell you what I came up with last week that's helping me walk better and longer.

I was having one of those days that I have every once in a while, but I was having it, whatever it was. I had a stroke in 2009 and my right side was affected. My right hand is useless, just there for the sake of it, but I walk with a quad cane that gets me where I want to go, though often relying on the wheelchair. (There are some facts right there that will signal "one of those days").

Anyway, I was daydreaming. Wouldn't it be wonderful, I thought, if my walking were improved by thinking the left leg had the problem instead of the right?

And so it was that last week I pretended my right leg was fine and my left leg had the problem. And I walked down to the laundry room--and back. And I walked up the hill that enters the parking lot. And I walked to the car. And I walked into the blood center where I am tested once a week--and back. And I walked into Giant Eagle for their salad bar and ate their fresh greens right there--and back. That was a new experience for me.

My friend stopped asking me if I was all right because, she told me later, my face was beaming. I was walking with the confidence of a human who has something wrong with her left leg. It wasn't major, just something.

Some other things happened, too. I lost 19 pounds with the help of My Fitness Pal which I downloaded to the phone so wherever I am, I can enter the foods right on my phone. It's a fact: lighter is better. I have a better state of mind, now that everything else worked out. Maybe that helped. But I have to go back to my limb reversal trick, thinking the left foot was bad instead of the right.

So I did some research. Could just thinking it make it so? Maybe. I'll tell you what I found.

Dr. Mark Hallett, Chief of the Human Motor Control Section, National Institute of Neurological Disorders and Stroke, National Institutes of Health, in a recent publication, wrote, "Body parts can compete for representation in the brain and use of a body part can enhance its representation. A body part is represented in various areas of the brain, both motor and sensory. The sensory representations are those that are active when sensory stimulation of that body part occurs. The motor representations are those whose activity produces movement of that body part."

Doctors can sometimes be fuzzy, speaking from personal experience. What the good doctor is saying is that body parts which have movement should be maximized to the nth degree and compete to the fullest. Ergo, my limb reversal makes sense.

Forward to today. I'm still doing it, thinking my left leg is worse than my right. But all strokes are different. Don't try this method unless you have a hands-on person the first 2 or 3 days. After that, maybe you'll build up confidence like I did. [Boolya!]

I have it down now. I bike 45 minutes on the stationary bike 4 times a week, sweat a lot, and move more without the wheelchair. If I keep this up.... No. I don't want to make any predictions.

The Motorized Shopping Cart, aka Hell on Wheels

An excerpt from my book, "The Tales of a Stroke Patient"....

The plug which led to recharging the battery was still in its socket. Using the patience I was born with, and not so much since I had the stroke, I waited for help. While I was waiting, I saw the controls: forward, backward, a wheel when you wanted to turn, and a horn. Easy enough.

The help soon arrived in the form of a teenager who was going on break.

"Could you unplug the cart," I asked, knowing he was going to do it.

"Sure," he uttered, with cigarette smoke on his breath. He probably wanted to get in a full smoke before he had to return to duty.

He unplugged the cart and wrapped the excess cord behind the unit to keep it out of my way. I tipped him though I knew it would be going for cigarettes.

By now, 15 minutes had passed and my friend was long gone from the produce aisle. Oh, well, I really was on my own. But he had the shopping list, though I had my cell phone. So I called him.

"Where are you," I inquired.

"In the ketchup aisle."

I wasn't used to sitting down while I went food shopping, so I had to raise my head a bit higher to see where the ketchup was. It was in aisle 9.

"Where were you," he asked, though I knew he really didn't care where I was, just so long as I didn't leave the store.

"You said, 'You're on your own.'" He switched topics when he knew I had him dead to rights.

"I'm going to get crackers. Which kind do you want?"

I followed close, but I lost him in aisle 17 when he said he was going back to retrieve something he'd forgotten. I couldn't make a u-turn fast enough. I went to aisle 21, the dairy section, because that's where he would wind up. String cheese was on the list.

I decided to practice the controls at maximum speed because at this point, I only used the forward button. I stayed on the same path and I counted to three. Forward (1, 2, 3). Reverse (1, 2, 3). Forward (1, 2, 3). Reverse (1, 2). I never got to 3 because a fashionable though ostentatious woman (you know the type where their poop doesn't stink?) was there in the path I had so carefully laid out for myself. Not only did I hit her on her hip, but I ran over what I thought was her recently manicured toe.

She was on the cell phone and I probably woke her up to her surroundings. She said to the person on the other end, with me sitting no more than 3 feet away, "Some crazy-ass bitch in one of those handicapped thing-a-ma-jigs just ran over my toe! She's sitting right here. And I just had a pedicure!"

I knew it. She didn't mention anything about the hip. Evidently, the toe was a priority. It would have been mine, too, before I had the stroke. At least, I understood her priorities.

She continued talking on the cell phone, going right for the string cheese. Her voice was getting shriller and louder. Oh, crap. What if my friend came back at that very moment and she demanded money for the pedicure, knowing we were together? What if the person she was talking to gave her advice, like getting my license or calling the cops?
....

This is what it is. A tease. If you bought the book, you already know the outcome. If you didn't buy the book, you'll always wonder for a time. Amazon is the cheapest. I'm just sayin'.

Stroke Survivors and Friends: 5 Ways to Not Lose Them

"If you have one great friend, consider yourself lucky." 

A wise man said that to me once upon a time. But does that statement apply to stroke survivors? Not so much, because stroke survivors are perceived as pitiable way too often.

Here's one for you, stroke survivors: you have to work at keeping friends, just like "normals" do! Surprised at my answer? Well, it's true. I had to learn the hard way, all those months sitting alone when I could have enjoyed myself.

A study was done at Academics at City University London. They found that having a stroke can negatively affect a person’s social network. Children and relatives were mostly in touch, but many stroke survivors reported that the number of friends they saw significantly declined. 

Says the study, "The City team recruited 87 stroke survivors from two acute stroke units based in London teaching hospitals. They interviewed participants at two weeks, three months and six months post stroke,and found that aphasia, a language disability that can affect talking, understanding, reading or writing, was the cause."

Dr. Sarah Northcott, Research Fellow in the School of Health Sciences at City University London, said, “Our study showed that many stroke survivors report that their social networks are badly affected. People who have aphasia are particularly at risk of losing contact with friends and their wider social network.

“We know that supportive relationships are crucial in enabling a person to adjust to life following a stroke, so it’s really important that we consider a person’s support networks during post-stroke rehabilitation."

Real data. How about that. So here are five ways to keep friends in your "social network":

1. Ask for help when it comes to going out
People love to help. (Most people, that is). Don't be embarrassed about asking for a ride, helping you traverse a  rocky terrain, or assisting you down the scary stairs. It's a win-win situation. People are gratified that they could help and you get the help you need.

2. Don't be a Debby Downer
Save your crabbiness for when you come home. I know. I know. You've had a tough day, but most people don't realize that you have to work at least twice as hard on daily living stuff, like getting dressed, taking food from the refrigerator, and arguing with people when the words just don't come as easy as they did before. Force you yourself, if need be, to smile and be pleasant.

3. Invite them over
You have to do your part. It wouldn't take much to set out a plate of cookies and drinks. Do it slowly. There's no need to rush if you start an hour or two early before your invited guests appear. It shows an interest in your friends. You have to do inviting sometimes. It can't be a one-way street.

4. Find common interests
I belong to a Writers Group that meets regularly at the library. Or maybe sports are your thing. You can run the food booth or be a scorekeeper or even a fan. Everybody loves an enthusiastic fan. Or how about asking your place of worship what speakers they have on board? There's always something to do. 

5. Get used to the people saying dumb things about strokes
I've heard them all. They were said to me. "You wanna race my 2-year-old grandson to see who gets there first?" Or how about this winner? "Did your life change for the better or worse after you've had a stroke?" Or even this: "Does the movie theater have a special rate for you people?" They don't know. That's all. Practice staying calm and let the "normals" talk, albeit moronically. If you get angry, that's 1 point for them and a possible reason to shun you forever. Keep. Your. Cool. I can't stress that enough.

Sufficient discussion, yes? Now get to work on staying social. And enjoy yourself, even if you have to force it in the beginning. Sometimes, you will have to pretend, but take my advice. Fairly soon, the socializing will come naturally. 

And most of all, don't be discouraged by, for example, a narcissistic brute who doesn't want to help in any way, who avoids you at all costs, including "friending" you, as Facebook says. 

William Hickson, a British educational writer, is credited with popularizing these poetic lines:

'Tis a lesson you should heed:
Try, try, try again.
If at first you don't succeed,
Try, try, try again.

Foods: The Dirty Dozen and More for Post-Stroke Survivors, aka All You Need Is "My Fitness Pal"

Go ahead, stroke survivors. Eat those to-die-for doughnuts, have yourself another salty bag of chips, drink yet a fifth glass of wine. But don't expect to be healthy if you do any one of those things in excess.

The Dirty Dozen: Foods Stroke Survivors Should Avoid was written by Sharon Maguire, a nurse at BrightStar Care, an agency that provides help for little ones as well as seniors in all but a handful of states. The article was published by Stroke-Network.com because post-stroke people should, as the title suggests, avoid the following. 

Maguire says:

1. Red meat:

It’s important to decrease fat intake following a stroke. Opt instead for lean proteins such as chicken breast or turkey burgers.

2. Whole dairy products:
High-fat milk products such as 2 percent or whole milk and full-fat cheese should be avoided. Make the switch to skim or opt and low-fat cream cheese and dairy products.

3. Butter replacements:
Some so-called ‘healthy’ foods can be high in trans-fats, such as butter replacements and margarines. They might have a lower calorie count, but that doesn’t mean that they are good for you.

4. Processed foods:
Processed foods such as frozen meals are often high in sodium (a big no-no for stroke recovery patients). Go for fresh meals whenever possible.

5. Salty snacks:
Avoid salty junk foods like pretzels to help limit your sodium intake.

6. Donuts and pastries:
Bakery goods are delicious, but not only are they often highly processed, they also are high in fat and made with rich dairy products. Swap out these items for sweet and delicious fruit items such as a light sorbet or fresh berries.

7. Fried chicken:
When selecting lean proteins, remember that it is still important to avoid eating the skin and not to go for the dark, fatty cuts. Think lean and light.

8. Whole eggs:
Eggs can be a healthy part of your diet, but they can also be high in cholesterol. To enjoy eggs in a healthy way, simply swap out the yolk for egg whites. For example, instead of having a fried egg sandwich with hash browns, go for an egg-white omelet stuffed with veggies with a side of fruit and whole-wheat toast.

9. French fries:
It’s also good to avoid foods that are cooked in oil. Instead, opt for foods that are baked or broiled. Remember, if it has the word “fried” in the description, it’s not a healthy option.

10. Lunch meat:
Some foods that seem light and healthy are actually quite high in sodium, such as lunch meat. Instead of lunch meat,  consider a light lunch option like salad, yogurt, or a veggie wrap. Or opt for a reduced sodium variety.

11. Ranch dressing:
Speaking of salad, remember that not all salad dressings are created equal. Look for salad dressings that are low in fat and calories, such as a light raspberry vinaigrette. A simple balsamic vinaigrette with olive oil and balsamic vinegar is easy to make and delicious as well.

12. Alcohol:
Be sure to ask your doctor about guidelines for alcohol consumption. He may suggest that you avoid it all together or that you only enjoy it in moderation.

I have a few more to add to the list. Cranberry and grapefruit "anything" or green tea or uneven or excess weekly levels of vitamin K (http://www.coumadin.bmscustomerconnect.com/servlet/servlet.FileDownload?file=00Pi000000bxvTFEAY) can make your INR (International Normalized Ratio), go off the charts. The INR is a blood test often given to stroke survivors to avoid clots (low INR) or bleeding (high INR). Check with your doctor for the right levels you should achieve with your INR.

But if you don't want to memorize the "Dirty Dozen," [My God! Who would!] you can go to your Apps Store and get, free of charge, My Fitness Pal (MFP).

Here's how it works: You choose what you want to lose, based on a 1200-calorie diet, and how fast you want to shed those unwanted pounds. I chose 50 pounds--2 pounds weekly--by October, taking me down to a size 8, the dress size of yore--eons of yore.

The creator of MFP, Mike Lee, doesn't want you to lose too fast because studies show if you lose too quickly, you'll regain it in a short time. So Lee bases all of that on a 1200-calorie intake. Exercise counts, too. (I do the recumbent bike for 45 minutes giving me more calories for the day). Food intake subtracts; exercise adds to what you're allowed to eat. Every thing is there by brand name, and yes, even McDonalds!

When I first started, I was out of calories by dinner because of 2 bagels loaded with cream cheese, 2 servings of pasta primavera, and a snack of 10 Oreo cookies. So, with all that fattening food literally staring me in the face, I learned to eat healthy stuff and more of it, too, like big salads with fat-free dressing (200 calories), white meat chicken breast (3 ounces at 100 calories), and most vegetables and fruits (at most, 100 calories per cup). Sometimes, I am so full that I can't even eat all 1200 calories. If I exercise, 1200+!

That's the things. A diary of food intake really makes a difference. When I record my food and exercises for the day, and I lose weight, I am rewarded by getting healthier. You won't eat or drink the "dirty dozen" because it makes sense to not.

You know what started all this weight loss stuff? Sitting on a shower chair, I had to cross my legs in the shower to wash my feet and couldn't, plus I couldn't get off the sofa in one motion. I knew it was time. Heavier people move much slower. Do you know who said that? Mostly everybody!

So how much did I lose so far? I lost 14 pounds in almost 7 weeks. Right on schedule! Let me know how it's working for you! I'll keep you updated, too.

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 by Jared Tanner, no medical journal or newspaper cited.




"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.   

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.

BEING LATE ALL THE TIME

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.

WATCHING TELEVISION RATHER THAN THE SURVIVOR

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!

SNOOPING

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.

ASKING TO USE YOUR SHOWER

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!

FALLING ASLEEP

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?

FORGETTING THE SOAP

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!

GIVING YOU THE CAREGIVER'S MEDICINE INSTEAD OF YOUR OWN

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.

CONSTANTLY COMPLAINING

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.

UNMERCIFULLY CAN'T SHUT UP

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."

MANIPULATING IN DOING THINGS HER WAY

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?

BREAKING: New Good and Bad Things to Know About Strokes

This article is shown in its entirety. The study findings were published online May 11 in the Journal of the American Heart Association. It's important and somewhat intriguing.

Stroke Hospitalization Down for Many in U.S.

Thursday, May 12, 2016
WEDNESDAY, May 11, 2016 (HealthDay News) -- While Americans suffered fewer strokes overall from 2000 to 2010, stroke rates climbed substantially among younger adults and blacks, a new study found.

Hospitalizations for strokes caused by artery blockages dropped 18.4 percent overall during the decade, with greater decreases among the elderly, University of Southern California researchers found.

Within the overall decrease, however, some groups saw an increase in hospitalizations as the burden of stroke shifted to younger adults. For example, although stroke hospitalizations dropped 50 percent for people 65 and older, they increased nearly 49 percent among 25- to 64 year-olds. Stroke hospitalizations also varied by race -- up almost 14 percent among blacks.

Dr. Paul Wright, chair of neurology at North Shore University Hospital, in Manhasset, N.Y., said, "There are things we can do to help prevent strokes." Topping the list: living a healthier lifestyle, which can prevent as many as 80 percent of strokes, said Wright.

The study authors said better control of blood pressure, blood sugar and cholesterol probably accounted for the steep decline in strokes among the elderly. Exactly why strokes are up among younger adults isn't clear, but more awareness of stroke symptoms is the most likely reason, Wright said.

"People are more aware of the risk factors for stroke and seek help when something happens, as opposed to saying, 'I'm getting a little numbness and tingling and weakness, but it will go away,' " he said. "So people are more likely to get help sooner."

Wright believes the higher stroke rate among blacks is largely due to lack of access to care. He also cited a need for more stroke education targeted to this population.

Dr. Amytis Towfighi, senior researcher on the study, emphasized the protective role of lifestyle behaviors in stroke prevention.

"The majority of cardiovascular events including heart attacks and stroke can be prevented through changing seven modifiable risk factors, namely: smoking, obesity, physical inactivity, poor diet, cholesterol, blood pressure and blood sugar," she said.

If you've had a stroke, "it's not too late to change your lifestyle. By making immediate changes, one is on the road to a longer, healthier life," said Towfighi, an assistant professor of neurology at USC's Keck School of Medicine.

Healthier lifestyle habits probably accounted for the hefty decline in strokes for seniors -- down 28 percent for those 65 to 84, and more than 22 percent for those 85 and older, Towfighi said.

For the study, Towfighi and her colleagues analyzed data from a national database that collects information on about 8 million hospital stays each year. They looked at the most common type of stroke, called ischemic stroke. This occurs when a clot in a blood vessel in the brain cuts off the blood supply to that area. Symptoms usually include weakness or numbness and tingling on one side of the body.

The researchers found that stroke hospitalization for whites declined about 12 percent and for Hispanics nearly 22 percent. But it rose 13.7 percent among blacks.
Overall, women saw a steeper decline in stroke than men -- more than 22 percent versus roughly 18 percent.
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So there it is, people. I think that is worth a share.