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.