Olfactory Hallucinations and Stroke Survivors, aka Wowee! I Still Smell the Awful Turtle Bowl!

The sale of turtles less than 4 inches has been banned in the United States since 1975 because turtles pose a high risk of spreading salmonellosis, especially to children. In 1975, I was already working as a writer and was a whopping 25-year-old woman who knew of the ban on small turtles.

But as a young child in the 1950s in the living room of our very small house, I didn't know it yet. I could smell the stench from our turtle in the appropriately named turtle bowl with its fake palm leaves sitting next to our over-heated radiator. If my mother didn't clean the turtle bowl for a week, and a week was all it took, the turtle bowl would stink because of the grossly wilted lettuce that served as food for the turtle that became slime short of a week's time. The turtles died (we had seventeen of them, one at a time) and my mother flushed them down the toilet. I remember us standing over the toilet and saying our tearful goodbyes as the turtles whooshed away in that maelstrom.

At the end of my teenage years, we moved to a bigger house and I forgot about the turtle bowl as, apparently, did my mother. We were almost grown then, my brother and I, and a turtle bowl would be an unwelcome annoyance because we would have to clean it, the responsibility that my mother would have passed on to us. 

Jump ahead a little more than forty years. That's when I had my hemorrhagic stroke. Now, I smell that rancid turtle bowl again when it isn't present. Why? Could I be having smell hallucinations to add to my never-ending repertoire?

Ronald DeVere, M.D., Fellow of the American Academy of Neurology (AAN), is the director of the Taste and Smell Disorder Clinic in Austin, TX, has been evaluating patients with taste and smell disorders. Dr. DeVere is also the coauthor, with Marjorie Calvert, of the AAN's patient book, Navigating Smell and Taste Disorders.  

In the thoughts of Dr. DeVere, "olfactory hallucinations are perceived abnormal smells—usually unpleasant—that are not actually present in the physical environment. They can come from a number of different areas of the smell system. If the smell continues for less than a few minutes, the site of origin is likely the smell region of the inner temporal lobe of the brain, called the uncus. The source could be an abnormal electrical discharge or a seizure."

I was stuck with the turtle bowl. Potential causes, says Dr. DeVere, among others, of this abnormality, aka hallucination, could be a stroke or an injury following head trauma. (Almost all stroke survivors have head trauma, or PTSD. See http://stroketales.blogspot.com/search?updated-min=2016-08-01T00:00:00-04:00&updated-max=2016-09-01T00:00:00-04:00&max-results=2). An MRI and a brain-wave test are what are needed to confirm through an imaging study of the brain. There is no cure yet that is FDA-approved.

There are worse things to smell than a turtle bowl but, at the moment, I can't think of any.

Emotional Incontinence: Pathological Laughing or Crying = Pseudobulbar Affect = Involuntary Emotional Expression Disorder = Emotional Diarrhea

I didn't know what was happening, but I knew I wasn't all right. I was laughing when somebody was in distress and crying when there was no need.

An example, one of many: We were sitting in a group--there were eight of us--where a guy was describing how he lost his job with a family to support. It was 10 months after the stroke and I laughed, seemingly mocking the guy's situation. I couldn't stop, not at all, and after 3 minutes, with the quad cane in hand, left the room.

Another time, this one an example of crying, around the same time period, I was out with a friend for lunch, telling me hilarious stories about her teenage children, when I started to cry, bawling actually.

So I did some one-handed research. The term, according to Dr. James L. Levenson, chair of the Division of Consultation-Liaison Psychiatry at Virginia Commonwealth University School of Medicine in Richmond, is Emotional Incontinence.

Emotional incontinence is annoying if not downright frightening, and is sometimes called emotional diarrhea, pathological laughing or crying (PLC), pseudobulbar affect (PBA and coined by Charles Darwin), or, more recently, involuntary emotional expression disorder (IEED). It is a syndrome of uncontrollable episodes of emotional outbursts that happen after a stroke and in a variety of other neurologic conditions that are related to brain-injury, like pseudobulbar palsy and amyotrophic lateral sclerosis (Lou Gehrig’s disease).

Pathological Laughing or Crying, (PLC, my chosen term because it's devoid of researcher gobbledegook) is characterized by episodes of crying or laughing that are not connected to the given scenario. The crying or laughing are common in patients with frontal lobe lesions due to brain injury. This damage can disrupt brain signaling, causing a "short circuit" and triggering involuntary episodes of crying or laughing.

PLC can have a huge impact on the individual's social functioning and often cause grave embarrassment and the prevention of social interactions, possibly leading to agoraphobia, an anxiety disorder in which the person fears and often avoids places or situations that might cause panic and feelings of being trapped or helpless.

Dr. Levenson says treatment options include tricyclic antidepressants (TCAs), selective serotonin reuptake inhibitors (SSRIs), dopamine agonists, and a combination of dextromethorphan and quinidine, but if you don't want to go the drug route, the good news is PLC most likely decreases over time. If you can't wait, take the drug route by seeing a professional, like a psychiatrist, for prescribing them.

I don't laugh or cry inappropriately anymore, but I still have anxiety, afraid the sky is going to fall (no, not like Chicken Little--it's just an expression).

There's no doubt about it. Having a stroke is a bitch.

A Place for EVERYTHING Stroke and Other TBIs--strokefocus.net

Traumatic brain injury, otherwise known as TBI, is an acute event in which the person is normal one moment, and the next moment life has abruptly changed.

This is Daniel Gu's story. He is a stroke survivor and suffered a TBI. I'll tell you how to join StrokeFocus, Daniel's ingenious website, after you read his story. Here it is:

"In Sept 2012, when my career and family were going great, an unexpected brain stem stroke derailed my whole life. Within 3 minutes, my left side was paralyzed. Later, I learned that doctors warned my wife that I might never stand up or talk again.

"In our darkest moment, 2 survivors completely changed our lives. One was Neil Yu. Neil is a very senior tax expert. Earlier that year, he suffered a brain stem stroke and was healed largely by acupuncture. He came from my hometown. We had some mutual friends. Neil not only came to hospital to see me, but also connected me with Dr. Sun, his wonderful acupuncturist. My recovery owes a lot to Dr Sun.

"Another stroke survivor was Alison Shapiro. Alison is an accomplished professional. In 2002, she suffered 2 debilitating brainstem strokes at the age of 55. Not only has Alison recovered herself, but also in 2005, she started a program to teach survivors, families and caregivers.

"I found Alison online. The very next day, she responded: How may I help? I was overjoyed. One thing led to another. In the following 2 years, Alison coached me through many difficult situations. We beat the worst prognosis by doctors. Without Alison, the recovery would be unthinkable.
 
"It was Aug 2014. Alison and I were trying a new online video chat program, and this was the first time we met face to face. As we talked, we found that although almost every survivor would benefit greatly from the kind of support Alison gave me, and there are many survivors would love to do that, there was simply not an easy way to connect survivors.

"My wife Hong and I decided to look for something that would help. Also, as my recovery continued, my best friends set me up on a number of social medias so I could stay in touch. I was stunned by the awesome power of social media to obtain answers for even very poorly defined questions. 

"One night, my friend Jeff, an accomplished web entrepreneur, came to see us. He listened to me carefully and recommended that we look into social media. We investigated Facebook, Google Plus, Ning and finally decided to build a social media dedicated to survivors by ourselves.

"We failed and failed. In the 24 months after that, we tried numerous paths. Alison and the team laid down a few principles:
 
It has to serve stroke survivors and the loved ones;
It has to be very high quality;
Easy to navigate;
It has to have a good mobile app;
Never rush. Go slowly and quality first.

"We decided that the information services should be free to survivors, families, volunteers, professionals and caregivers. We studied sites built for patients, and decided that we will never collect anyone’s medical info, or even birthday and family address. We do not believe that we are in Big Data business. 

"There are hundreds of Web sites, and blogs that support stroke survivors. StrokeFocus is not in competition with any one. Our success is measured by how much we can help each group or web site become more successful. Tell us what we can do to help you. Your success defines ours.
 

"When StrokeFocus started, the partners were trying hard to find a name. At that time, my little girl Alexis got sick. One morning, she got up and walked to my wife, Hong, busy with laundry and said: 'Mama, Wo Hao La. In Mandarin, it means Mom, I am well now.' I shared this story with one of the advisers.
 
“That is the name!” she exclaimed. Alison and Hong liked it, too. [The name was changed to StrokeFocus because people had difficulty pronouncing Wohaula]
 
"At the beginning, we decided that one of StrokeFocus’ core missions is to help local survivor groups become more effective. Encouraged by Alison, I have been working with local groups. I got in touch with at least 10 since the mid of 2015. In attending their meetings and discussions, I have learned a lot about the challenges they face. StrokeFocus is designed with local groups and stroke survivors in mind.
 
"Easy use is paramount. We want to provide a tool that helps all survivors to grow. We believe that StrokeFocus’ most important stake holders are survivors, families and everyone affected by brain injuries.

"We want StrokeFocus to become a place where rules, features and functions are driven by users. We want you to not only use StrokeFocus but also provide feedback to improve StrokeFocus. All services currently available on StrokeFocus will remain free. StrokeFocus will continue to add new features and functions based on user suggestions.

"Together, stroke survivors have power. We can change how stroke care is delivered and recovery outcomes of other survivors. We have a lot to teach one another.

"We want to see that service provided by StrokeFocus will accelerate new changes to help brain injury survivors. New forms of organization will grow out of our groups to advocate better care for survivors. New entrepreneurs or clinics serving brain injury survivors will flourish. Researchers will have much better access to people they are finding cure for.

"I came to US in 1997 and earned my MBA from University of Iowa, on full tuition scholarship. I hold a CFA (chartered financial analyst) designation. 

"After graduation, I worked in Sprint 1999-2004 as a Senior Financial Analyst, supervisor, finance manager and later Group Manager. I was involved in almost all major technology investment by Sprint in this period. I am very thankful that Sprint put me in its Financial Management Development Program (FMDP) and rotated me through various divisions with excellent leadership training. This gave me a very broad exposure to different areas in finance and technology.

"In 2004 through 2009, I worked for Wells Fargo Consumer Finance. In Wells, I got the opportunity to lead a large technology team. We turned 4 subpar technology teams into a major power house inside Consumer Finance Division. I really like the experience. It gave me the first hand experience to lead technology teams to support business.

"In 2009, I was recruited by East West Bank to set up its Financial and Planning Department. In 2010, I was assigned to run the MIS division of East Bank. In late 2010, I was promoted to be the IT director (CIO) of the East West Bank. I led the turn around of the East West Bank IT division. 

"East West Bank's IT was a struggling unit with different teams fighting each other over the years. I put them to work together. Realigned their function, established a solid information security process, built up the bank's data warehouse, recruited top development talent to work side by side with the business team and set up its Great China IT operations.

"East West Bank's CEO Dominic Ng said the change was 'more than day and night.' Four days before my stroke, Federal Reserve gave a review of my team in front of my boss, then President Julia Gouw. The comment was the team which used to be a problem, 'is now the example for the district to follow.'

"When I started to recover, my best friend set me up on 2 leading Chinese social media. The Tencent Weibo and Wechat. Both run by the leading Chinese technology giant, Tencent, just to let me kill some time. Weibo means 'microblog' in Chinese. There are a number of microblogs in China. Each is an emulation of Twitter, a leading social media platform.

"I was stunned by its awesome search capability by the microblog. Taking a deep dive into it, I found that social medias are the most powerful information tool. Microblogs like Twitter is one form of social media. 

"There are two types of questions we deal with. Questions that have definitive answers such as the year Thomas Jefferson was born. The year Pearl Harbor was attacked. Then there are questions for which the answers are evolving, such as the latest drug to cure cancer and the latest discovery in neuroscience.

"For the second type of questions, social media is the most powerful search tool available. A user can post a question, then users who are interested in the subject could make comments adding information they know. Then more and more users could add their inputs. Very quickly, users could go very deep into on any subject. To any loosely defined questions, microblog is perfect.

"Another major factor was Alison Shapiro along with Neil Yu. Both were stroke survivors. Both helped me tremendously in my recovery. When I was knocked down by stroke, my wife Hong went online to look for information. She was overwhelmed with thousands of pages of information without knowing where to start. By contrast, Alison and Neil were able to offer very helpful and specific answers to my wife. They could also help my wife shape a very poorly defined question into a well structured conversation. This is exactly like the type of conversation you see on Social media.

"Why can't we have a platform to have conversation like this?

"Moreover, we can organize events and form groups on StrokeFocus. Today, I have no idea what is being discussed in stroke support groups affiliated with Stanford University. Knowing that Stanford leads the stem cell research and has just conducted a large scale clinic trial following a major breakthrough, wouldn't it be nice if we could all join their conversation?

"We would like to see StrokeFocus as a starting point of major changes. Survivors collectively know a lot about stroke and brain injuries. Together, we have a lot of power to make changes.

"There are 8 million survivors in US alone. Each year, there are 750K new survivors added to the list. This is a vast but under developed market.

"To make StrokeFocus successful, a vibrant ecosystem has to evolve around it. I would love to see new form of organizations and companies grow on top of StrokeFocus. There are many problems that are waiting for new institutions to solve. 

"For example, why can't we have new types of media companies to generate podcasts [StrokeFocus has them now], since most survivors have visual challenges and audio would be a much better way to consume information. To take StrokeFocus to the next level, we need third party institutions to provide trustworthy reviews on doctors and professionals. 

"We would love to see StrokeFocus provide a platform to enable new companies to collaborate closely with survivors and families to develop products and services. We would like to see new digital magazines and news company to curate information for StrokeFocus users. What about new form of non profit organizations to advance causes for StrokeFocus members? 

"StrokeFocus adopts a mall tenant model. We do not believe in the Big Data Hype. We believe collecting user data to make a profit is morally wrong. StrokeFocus does not step into the day to day management of its tenants just like a West Field Mall will never step in to run an Apple Store inside it.

"There are 800 stroke survivor groups registered under National Stroke Association. Most of them lack resources to produce a lot of content. Let's say only half of all groups can make at least 1 video a year. If a group only produces 1 video a year, it will have a real hard time engaging its people. How about we could pool all groups together. 

"Without spending a penny, they would have access to hundreds of new videos each year. And survivors can check out activities taking place in other groups. Connect with survivors in other parts of the world. They could have discussion 24/7 without spending a penny. Think what it would do to change stroke care."

To join StrokeFocus, follow these steps. 

• Type strokefocus.net in your search bar and press the Enter or Return key.
• Enter your required information and a chosen password in the spaces provided.
• You made it! Check out the Tutorial tab first to orient yourself to StrokeFocus. 

Like I said in the title, "Everything Stroke and Other TBIs" is here, thanks to Daniel, the amazing founder of StrokeFocus. 

Join--stroke survivors, other TBI survivors, family and friends, caregivers, health professionals--and we'll work together to make this site extraordinary to all who suffer from TBIs by giving you education, inspiration, and motivation.  

Kudos, Daniel. We are grateful to you.

Alcohol and Stroke: You May Be Just Asking For It

I had a hemorrhagic stroke--messy bleeding in the brain. Allow me to precede this post by saying  that I never had an alcohol problem. (I had other problems but not applicable here). This post about alcohol is a mixed bag--for stroke survivors and for people who have not had a stroke yet. You'll see why soon enough.

For starters, you probably don't remember Betty Ford, our First Lady in the 70s, unless you're an American. She was the founder of the Betty Ford Centre in Rancho Mirage, California, a luxurious complex for addiction and rehabilitation which handles mostly depression, addiction to drugs, and alcoholism. She was afflicted with all three, maybe because Gerald Ford was the president and clumsy or maybe because she had a mastectomy or maybe because she was stressed, but who knows. The Betty Ford Centre is her legacy and still very much the go-to place for troubled celebrities. For a 45-day stay, the counselor who answered my phone call said the cost is up to $25,000. Who has that kind of money? Celebrities.

Anyway, the first medical director at The Betty Ford Centre was Dr. James West, and family's questions abounded him. Here is one of the questions he answered:

Question: "My mother had a stroke three years ago. With intensive rehabilitation, she is now able to function pretty well. She is 60 now, but up until the time of the stroke, she drank almost every day. At the most she would have four or five drinks, but regularly. I never saw her drunk. These drinks would always be separated in the most 'civil and socially acceptable manner.' We were shocked a few weeks ago when a physician friend recommended that she abstain from alcohol. He said her drinking might well have caused her stroke. Is this possible?"

Dr West: "It is not only possible, but also probable. Having four or five drinks a day, no matter how socially graceful and acceptable at the Country Club, or any other social setting, is heavy drinking. The risk of high blood pressure is 50 percent higher in persons drinking three or four drinks a day than in non-drinkers. Hypertension is a major risk factor for cerebro-vascular hemorrhage (stroke), as well as myocardial infarction (heart attack).

"The four or five drinks your mother consumed are associated with a fourfold increase in the risk of a hemorrhagic stroke. This kind [of stroke] is commonly fatal, or always disabling stroke, is much more common in female heavy drinkers than in men who drink an equal amount. As she now re-enters her world of social functioning, it is imperative that she refrain from alcohol. Her risk of suffering another alcohol-related stroke is the same, or maybe even greater, than before."

Denise Mann, for WebMD Health News, in conjunction with Louise Chang, MD, said the same as West did years later. Mann wrote in 2012, "Heavy drinkers may be at a much greater risk for a bleeding stroke."

A new study suggests "people who drank about three or more alcoholic drinks per day also had the strokes almost a decade and a half before those who didn’t drink quite as much."

Mann goes on to say, "The study included 540 French people with an average age of 71 who had a less common type of stroke called an intracerebral hemorrhage. This type of stroke is caused by bleeding in the brain, not a blood clot.

"The people in the study and/or their caregivers or relatives were asked about drinking habits. Fully 25% were heavy drinkers. This was defined as having about three or more drinks per day, or about 1.8 ounces per day of “pure” alcohol.

"The heavy drinkers were about 60 when they had stroke. By contrast, the people who were not heavy drinkers were about 74 when they had a stroke. The heavy drinkers were also more likely to be smokers and did show some evidence of irregularities in their blood that would make them more likely to have a bleeding stroke."

Deepak L. Bhatt, MD, MPH, a cardiologist at Brigham and Women's Hospital in Boston and an associate professor at Harvard Medical School, concurs.

“The study does add to our knowledge that excessive drinking is bad for our health in a variety of ways, including increased risk of bleeding into the brain.”  

Bhatt says heavy drinkers may be more likely to have high blood pressure, which is a major risk factor for stroke. “If someone enjoys drinking, I don’t discourage them, but I will caution them even more so after this study to make sure that the amount is considered moderate.”

"We do know that one glass of red wine a day, on average, lowers heart attack and stroke risk, and that is still true," says Dr. Patrick Lyden, the chair of the department of neurology at of Cedars-Sinai Medical Center in Los Angeles. “If you don’t drink, don’t start because you think it will protect your heart, and if you do drink, keep it moderate. My rule of thumb is one glass of wine a night, and that is the same as a glass of beer or one mixed drink,” he says.

“This doesn’t mean you can save them up and have seven drinks on a Saturday.” (Even I know that!)

"Certain people should avoid alcohol, including those taking blood thinners," says Leyden. (I know that, too).

Another voice heard from, as recently as this year, is Jose Vega MD, PhD, on the site Medscape. "Although alcohol in moderate amounts can protect you from having a stroke, there is no doubt that excessive intake can increase your risk of having a stroke. Chronic excessive alcohol intake can precipitate all types of stroke, and most notably sharply raises the risk of hemorrhagic stroke. This is, in many cases, the result of harmful effects of alcohol on the liver, as this organ makes proteins which are necessary to prevent spontaneous bleeding."

Yet more. A study found that drinking more than two alcoholic beverages a day when you reach middle-age raises the risk of a stroke in early old age more than do traditional risk factors, such as high blood pressure and diabetes.

The study published online January 29 in Stroke, with author Pavla Kadlecová, MSc, St. Anne's Hospital, Brno, Czech Republic, found that individuals "who consumed more than two drinks a day during middle age had double the risk for stroke between the ages of 60 and 75 years compared with those who consumed an average of half an alcoholic drink per day."

And finally, there comes the Copenhagen City Heart Study, with Dr. Thomas Truelsen et al, which found that "there may be differences in the effect of beer, wine, and spirits due to properties other than ethanol, a topic that has gained only little attention in stroke research. The differences in the effects of beer, wine, and spirits on the risk of stroke suggest that compounds in the wine in addition to ethanol are responsible for the protective effect on risk of stroke." Grapes, perchance? The study didn't say.

So my conclusions? If you don't drink alcohol, don't start. If you take blood thinners, really stop. If you do imbibe, watch the amount, especially if you're middle-aged or older.

The Words I've Been Longing To Hear: An Energizing Visit from the Cable Guy

The cable guy called first and then he showed up around 1 in the afternoon on Labor Day because the channels weren't appearing. I was reading David Foster Wallace's Infinite Jest and I put the book down because I thought it would be rude to just sit there reading, ignoring him. He was an older guy, about my age in his 60s, and I unlocked the door ahead of time so I wouldn't have to get up from the sofa. He was friendly, unpacking all his equipment and feeling the need for conversation.

"Do you have any plans for the holiday?"

"Nope," I replied. "Just hanging out. It's strange to see a person working on Labor Day."

"Christmas, the Fourth, Thanksgiving. The company is a bully in that way. Sometimes, I work 7 days a week. Just laid off 44 repair guys and I was retained. I don't want to lose my job, too."

Still unpacking.

"Are those your grandchildren on the wall?" gazing at my sons and feeling a little tiffed that he thought I was of the age to have grandchildren when I feel like 40.

"No. I'm waiting."

He told me to change channels because he wanted to see if the remote was the problem. I put on my favorite channel, CNN, because I was into politics. Apparently, so was he.

"How come it's always been a difficult decision who to vote for," he said.

"Yeah. I don't like either of them. But Romney I sort of liked," I said, omitting the part where my son lives in Massachusetts. TMI, I thought.

"Now I see it," gazing at the small diagnostic screen he brought with him. "There's something wrong with your cable box. Is it in the closet or out there?" He was pointing to my balcony.

I gestured with my hand to the balcony closet. He pulled the vertical blinds away and unlocked the balcony door.

And then he said it, those words I've always wanted to hear: "What happened to your leg? Broken?" He didn't know. I was wearing the AFO and part of it was sticking out of my pants.

"I had a stroke."

"Oh," was all he said. Then he proceeded to the balcony where he remained for 20 minutes to repair the box.

His and my reaction gave me a fantastic feeling for several reasons. He didn't make a big deal when I said I had a stroke. He just said, "Oh," like that was another run-of-the-mill thing like acid reflux. And I said I had a stroke like, once again, that was another run-of-the-mill thing like acid reflux. The stroke wasn't a badge of honor either, but this was the first time I acknowledged it without feeling gloomy.

But most importantly, he and I were having a conversation, and he thought something happened to my leg, never imaging it was a stroke. I was overjoyed that I was communicating with him and he never once thought it was that. At last, I said the words correctly and naturally. I remember the speech therapist's words, which I engineered into an acronym--HOSE: hydrate, over-articulate, speak slowly, and speak on the exhale. Evidently, I was doing just that.

I was on a roll. When he came back in, he asked me to sign his electronic clipboard with my finger. And he asked me if he should lock the door on his way out and I nodded, said too many "thank you's," and he left.

So it's now 2:30 and I am finished this post, on this Labor Day 2016 when nobody should be working.

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.