Dec 24, 2016

New Year's Resolutions for a Stroke Survivor...Again

All my successes in the almost eight years since that horrid day were just actions I took to make the world more aware of strokes. But the successes are insignificant now in my eyes, always attempting to seek out the "thing" that will take me to the last stage on the list in Elizabeth Kubler-Ross' On Death and Dying, the Five Stages of Grief--Acceptance.

But it's Acceptance that just won't come to me. Don't think I haven't tried. I wrote a book about the stroke--The Tales of a Stroke Patient. Not enough. I write a blog called the same name as the book. Not enough. I was leading a stroke support group in the hospital. Not enough. I spoke at various forums and medical facilities about strokes. Still not enough. When is it that I will "accept" the stroke? Maybe never.

So here am I again, the stroke survivor, with ten resolutions for the new year. Maybe this will lead me to Acceptance. My random forced optimism is just that, an effort to see if this post will get me there. So here are my resolutions, in no particular order except the last, the things I want to happen most:

10. I will continue to work on the novel that is purely fiction. I've never written fiction before and I find it a challenge. I only wrote non-fiction for the past 50 years--telling, teaching, informing, explaining, aka news stories, books, blogging, how-to technical manuals. By the way, that picture is accurate. I write one-handed now. (http://www.writersdigest.com/writing-fiction-5-tips-to-get-more-creative)

9. I will continue to lose weight beyond what I lost so far, and it's a lot, but it's harder now that I am older and don't move around so much because of the stroke. I can't do any exercises that have me sit on the ground because I can't get up. Yes, there's the recumbent stationary bike that I use four or five times a week. And there's walking up the hill to the parking lot. But I'm determined and that's, in my opinion, the most important quality, not to mention lighter is better. (http://www.clevelandclinicwellness.com/conditions/Stroke/Pages/FuelYourRecoveryfromStroke.aspx)

8.  I will set the phone alarm and put it on "Snooze" so I will be forced to get up and take my Coumadin. (http://stroketales.blogspot.com/2016_11_28_archive.html/) I usually set the alarm to "Stop," but no more. The best way to take this blood thinner is to take it the same time every day. I've been having ups and downs on my INR, the test that determines clotting, but maybe this alarm set to "Snooze" will help. The alarm sound unnerves me!

7. I will stop pretending that I can change people, to fit them into the mold that is acceptable to me, aka kind, gentle, supportive. The ones who don't? Out of my life. (http://psychcentral.com/news/2013/06/23/nearly-1-in-4-stroke-patients-suffer-ptsd-symptoms/56321.html) People that are angry-spirited and controlling will continue being angry-spirited and controlling because they are satisfied with themselves and don't see a reason to change. People can only change if the "want" is there. Without it, the success rate is nil.

6. I will donate to Heifer International instead of buying gifts for holidays and birthdays from now on. The charity's mission statement is this: "Heifer International’s Global Impact Goal will be measured through a process...to allow us to clearly measure the impact of our work to end global hunger and improve livelihoods." I just gave chicks to combat hunger. Pretty neat, huh? (https://www.heifer.org)

5. I will regulate my sleeping schedule to arise at the same time every day, even on weekends once the new year comes. My poor sleeping habits started in the 80s when I worked as a columnist for the Philadelphia Daily News. My ex-husband was no help with the kids, and I could only write when the children went to bed. So I got used to it, writing from 10 until 2 or 3 in the morning, with sometimes with 4 hours sleep. But no more. Now that I had a stroke, sleep is extremely necessary to support a healthy nervous system and a clear-thinking brain, or what's left of it. (https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Understanding-Sleep#for_us).

4. I won't worry what people think when I wear the same-styled  sneakers all the time. Those sneakers, said more eloquently as Hush Puppy Power Walkers, are not cool when I dress up, but so what? These shoes, which I have in three colors--taupe, white, and black--help me get from point A to point B. So if somebody thinks they're not appropriate, I won't care. I'm so grateful for ambulating at all!(https://www.amazon.com/Hush-Puppies-Womens-Walker-Sneaker/dp/B001AX0EFW)


3. I won't be a shopaholic in 2017. There's nothing I need aside from food and drugstore stuff and random entertainment. I have enough clothes and (see previous) shoes. I used to get super-charged when I would go shopping before my stroke. But now it's tedious, stretching the functioning arm or leg to assist the other side. Bottom line: I have enough. (Here's an interesting article on shopaholics:  http://www.webmd.com/mental-health/addiction/features/when-too-much-shopping-becomes-a-problem_)

2. I won't give up. Too many stroke survivors do. But for me, the way I was raised, the way my parents wanted me to be, I have no choice. Strength is all I know. Life has thrown me some curves but nothing so severe as the stroke. The stroke ruined the 17-year relationship that falls under the category of "it was just a matter of time," challenged my chance of ever speaking well enough to be a professor once more, and destroyed my hope of ever working in the law firm again. And still, I am here, smiling, when those who don't know me wonder why. Sometimes I ask myself the same thing. But my strength rescues me, once again. (https://www.theguardian.com/social-care-network/2013/may/01/stroke-survivors-emotional-impact)

1. My sons know the unconditional love I have for them, in 2017 and beyond. I wish them health, happiness, and peace in this new year. To my friends (you know who you are), who emotionally supported me, thank you greatly. And to my readers who now number over 300,000, I will always be grateful for the opportunity to educate, inspire, and mind-boggle you. This resolution is ongoing.

Christmas is Sunday and Hanukah begins Christmas Eve, but I want to get a head start on this post so Happy New Year to all!

Nov 28, 2016

Coumadin and Vitamin K: What the Hell Is Going On with My INR and Other Questions Along Similar Lines

George Gallup is a name everybody should know. He started the Gallup Poll, initially named the American Institute of Public Opinion, in 1935. He was famous, a year later, for predicting that Franklin Roosevelt would defeat Alf Landon in the U.S. presidential election, a noted contradiction to the well-respected Literary Digest magazine who sent out two million questionnaires and predicted that Landon would be the next president. 

Along similar lines, much like the Gallup poll, a study published in the Annals of Internal Medicine in 2013 quizzed a random population and revealed that half of all Americans use some form of vitamin supplementation. Vitamin sales nearly totaled a whopping $12 billion annually, including as many as two-thirds of older Americans, 50 and above, and those with higher levels of education. A line of demarcation exists between the docs who say that the overwhelming majority of vitamins are worthless and the docs who say they're valuable to increase functioning of body parts. I say, who knows. 

But one vitamin stands out above the rest for people taking Coumadin, the blood thinner: vitamin K. A little background first.


Overall, Warfarin (the generic Coumadin) is a pill that I take regularly for two possible reasons: to help prevent blood clots or to keep a clot from getting bigger. To validate that Warfarin is diligently  thinning your blood, it's important to eat about the same amount of vitamin K every day. 

Vitamin K normally helps your blood clot so breaks in the skin don't bleed as much. Warfarin works against vitamin K, making your blood clot more slowly. 


So Warfarin and vitamin K work against each other along the lines of a battle that no one should win. When you take Warfarin, as my PCP says, it's important that you eat the same amount of vitamin K every day. 

"If spinach is on sale at the Giant Eagle, don't eat more amounts than you're used to," says the PCP. (Spinach is high in vitamin K).

I was living in New Jersey for almost two decades with an ex-partner who was an opinionated eater, healthy but opinionated. I made every shopping list the same and soon I didn't need a list. After my stroke, the role shifted and my ex continued to buy the same things, healthy choices but the same choices. So my diet was well-controlled both before and after my stroke.

When I moved, I was on my own and that's when the troubles began. I soon realized, just like a diabetic has to count sugars and carbohydrates, I have to count my vitamin K input. I bought what I wanted and didn't know that I have to count. Now I know the secret.

If you already eat a lot of leafy green vegetables, that's all right. Just keep it about the same amount each day. And if you take a multivitamin that contains vitamin K, be sure you take it every day. If you start dieting to lose weight, always keep the doctor informed so that the Warfarin can be adjusted.

 

You're allowed 90 mcg (micrograms) of vitamin K every day. Notice the portion size and adjust accordingly. Here is a partial list, brought to you by WedMD:


Food (no salt added) Serving Size Vitamin K (mcg)
Kale, boiled, drained 1 cup 1062
Spinach, frozen, boiled, drained 1 cup 1027
Spinach, boiled, drained 1 cup 889
Collards, boiled, drained 1 cup 836
Broccoli, boiled, drained 1 cup 220
Brussels sprouts, boiled, drained 1 cup 218
Parsley, raw 10 sprigs 164
Cabbage, boiled, drained 1 cup 163
Spinach egg noodles, cooked, enriched 1 cup 162
Spinach, raw 1 cup 145
Broccoli, raw 1 cup 89
Lettuce, green leaf, raw 1 cup 71
Coleslaw, fast food ¾ cup 70
Okra, boiled, drained 1 cup 64
Green peas, canned, drained 1 cup 63
Lettuce (such as romaine), raw 1 cup 57
Vegetables, mixed, frozen, boiled, drained 1 cup 43
Lettuce, butterhead (such as Boston or Bibb), raw ¼ head 42
Blueberries, frozen, sweetened 1 cup 41
Peas, edible pods, boiled 1 cup 40
Green peas, frozen, boiled 1 cup 38
Tuna fish, light, in oil, drained 3 oz 37
Celery, raw 1 cup 35
Lettuce, iceberg, raw ¼ head 33
Soy beans (edamame), boiled 1 cup 33
Kiwi, raw 1 medium 31
Scallion or spring onion, raw 1 medium 31
Asparagus, boiled, drained 4 spears 30
Blackberries, raw 1 cup 29
Blueberries, raw 1 cup 28
Marinara sauce for pasta, ready-to-serve ½ cup 18
Cucumber, with peel, raw ¼ large 12
Canola oil 1 Tbsp 10
Olive oil 1 Tbsp 8
Pistachios, dry roasted, salt added 1 oz (47 nuts) 3.7
Tea, brewed, prepared with tap water 6 fl oz 0.0
 
(For more information on other foods and the amount of vitamin K in them, go to http://inrtracker.com/nutrients)

If I didn't eat vitamin K at all for that day, I'd eat three kiwis equaling 90 mcg, which I always have on hand.

There are only three foods that I know of that I can't consume at all while I'm on Warfarin (I suspect for the rest of my life): cranberries, grapefruit, the latter in any form, and alcohol. (Farewell, rum fruitcake, my favorite food of all).

Check with the doc before you take any supplements or herbal products which may contain vitamin K.


To assess how well Warfarin is working, a blood test is needed every week or two to measure how long it takes for your blood to clot, until your blood result is stable.

Your lab results are called Prothrombin Time (PT) and International Normalized Ratio (INR) values. 

Your INR needs to be in a safe range--not too high to cause bleeding and not too low to cause clotting. Vitamin K can change how Warfarin works, which changes your INR. For me, and most people, the safety range is between 2.0 and 3.0. 

To summarize:
  • Vitamin K lowers your INR values. The lower your INR, the less time it takes for your blood to clot. A low INR means that warfarin isn't working well enough to prevent a dangerous blood clot.
  • Warfarin raises your INR values. The higher your INR, the more time it takes for your blood to clot. A high INR means that warfarin is working too well, so you bleed more quickly and easily which can be dangerous. 

And from INR Tracker (inrtracker.com/nutrients): You'll learn interesting things like 1 cup of granola has a little bit more than 10% of your daily Vitamin K needs. Or that you would have to eat 34 eggs to get 100% of your daily Vitamin K needs.
 
I'm moving toward stability by counting and eating the same amount of vitamin K daily. But it's like I always said: It's tough being a person.

Nov 19, 2016

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

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.

Oct 20, 2016

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.

Oct 2, 2016

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.


Sep 19, 2016

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, 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 Kadlecov√°, 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.

Sep 5, 2016

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.

Aug 28, 2016

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.