Caregivers Are Suffering; Stroke Survivors Are Suffering: Who Has It Worse?

The former editor-in-chief of the Philadelphia Daily News was Gil Spencer who said, when I was hired as a columnist, that the only reason writers should write is to be read, whether it's positive or negative to their readers' beliefs. Those words are indelibly inscribed in my brain forever. And I was reminded of them again in this post on Facebook.

On January 17, at 8:07pm, I wrote this in Facebook to the group called "Stroke Caregivers." My words set off a firestorm of anger, confusion, and profanity, all of which are ok.

One person wrote, "GFYS," an acronym I didn't know. So I goggled it, and I found out. (Between you and me, I think GFYS is silly because our anatomies aren't built that way. How can you fuck yourself?) Anyway, read the comments. Some agreed with me. But I removed the names of those who didn't because I don't want bogus lawsuits, (bad spelling and grammar aside), and I deleted more because of repetition. But I left my name in when the response was needed. After you read them, I'll have thoughts of my own.

I wrote, "As a stroke survivor, and from all that I've read in your posts, we BOTH have it tough. But really, you can still dance. Get what I'm saying?"

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Hmm... I usually don't respond to these kinds of posts; but this 'keeping track' of who has it harder has no benefit. I would never say my husband who had a massive stroke that left him paralyzed on his right side, without 40% of his sight, and plagued with severe cases of aphasia and apraxia that leaves him unable to use any expressive speech has it 'better' than me. No more than I would say my daughter with Down syndrome is luckier than me; however, to dismiss the struggles, pain, fear, and responsibilities a caregiver has is hurtful. Can I dance?... Yes, when my body isn't so riddled with pain from caring for my family or when I am not sick from the stress. This talk does no one good. I wouldn't be anywhere than by my husband's side and I am 100% sure he would be by my side if the tables were turned. I am sorry you had a stroke- I wish you didn't. Please be kind to those of us who love and support our survivors.

January 17 at 8:24pm

Sure -- I can dance. When I might actually have five minutes of someone else taking care of my husband - or when I"m not overwhelmed by fear and anxiety from everything that his strokes have changed. His strokes affected me in every single way -- just differently than him. We are all working through these struggles together -- survivors and caregivers.

January 17 at 9:01pm

We heard you loud and clear. Get what I'm saying?

January 17 at 11:50pm

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January 18 at 12:25am

I thought that this group was for caregivers where we can vent freely. And no my husband and I can no longer dance. Ballroom dancing was once our favorite activity.

January 18 at 1:11am

I thought only caregivers were allowed as well. Is there vetting that happens when someone wants to join? Admin?

January 18 at 1:39am

Yes...It is true that I can still dance....but for me...where is the joy of the dance when the only person I want to dance with can not join me :(

January 18 at 6:55am

Wow! Some days I wonder which one of us is worse off!

January 18 at 9:15am

I just reread the informational post by Admin and it does say that Survivors are welcome but that if they are offended by what they read here, other sites may be more appropriate for them.

I think that makes it a little more uncomfortable for us when sharing our honest feelings and try to keep in mind there are Survivors here. 😕

January 18 at 9:56am

 

Well that is one of the hard things about care giving, don't you your self be sick, feel bad, Overwhelmed, Exhausted, Depressed your self, Dead even though you are Alive, the Survivors make it ALL about them, sometimes a little self centered. If no one likes what they see on here don't come on! Just like my self centered husband gets on his sites see something that upsets him and takes it out on Everyone else I tell him STOP READING IT!! I can tell you one thing about care giving after So long and So much of it. You become hard sometimes because you get so Sick and Dam tired!

January 18 at 1:43pm

I can agree to what your saying. My husband has managed to become so manipulitave that is down right scary

January 19 at 9:09

It's not a contest about who has it harder. It's a completely different set of challenges for both. Trying to compare apples and oranges isn't going to help any.

January 18 at 4:21pm

Joyce Hoffman Yes, but it proves my point.
January 25 at 9:25

No it doesn't prove your point at all. It proves that your point is pointless.

January 25 at 10:01am

I'm sorry, what was your point exactly? I'm not trying to be rude, I want to understand what you're saying. Speaking as a third party, I'm watching what my dad's strokes are doing to him, both physically and mentally, and I'm watching what the effects his strokes are having on my mom. I realize that all strokes are different, and that some are not as affected by their strokes as others, who may be extremely incapacitated. My dad isn't as badly affected physically as he could have been, which I'm grateful for. But as his caregiver, my mom is having to deal with a very difficult set of challenges, and it's very hard on her, both physically and emotionally. Please don't say that it's harder on one group than the other. It's not fair to either.

January 25 at 10:15am

I usually just read posts here, and don't comment.

I am so sorry you suffer from a stroke.
But, feel you're out of line here.
Yes, our loved ones are suffering ....
They have no choice in that.
Caregivers CHOOSE to stay.
Choose to give all that they have
to care for, often unappreciated, and sometimes downright abusive, loved ones. Oh, and self-centered loved ones.

Liiike .. coming to a site for Caregivers to be about themselves for five goddamnit minutes of the day, and trying to throw guilt on them

January 25 at 6:44am

Joyce Hoffman You are unhappy as a caregiver? So then why do you do it?

January 25 at 9:27am

She never said unhappy...

February 6 at 4:05pm

Well, that posted before I could make corrections.
I'm sorry..
I should have kept quiet.

January 25 at 6:48am

What cha sorry about? It's the truth. We as caregivers have no clue what the future holds for us when our loved ones come home from the hospital. Not everybody has a positive experience. Hugs and prayers for you and your doing more good than you realize

January 25 at 8:14am

Yes caregivers can dance...but with who? Its a tough life altogether!

January 25 at 8:04am

Joyce Hoffman Maybe I should have said peel potatoes.

January 25 at 9:28am

husband has No movement on left side and cannot get himself up , gets tired and needs help eating ,sooo , After changing all day , bathing , feeding (food has to be blended) , medication ( has to be through g-tube),breathing treatments , brushing teeth , moving every so often, washing ( use a lot of wash clothes and towels and sheets , mopping to keep sanitary and fresh , I think I would rather collapse into bed........and I also take my mom and dad to appointments and cook and clean and look after them and I have a 13 year old ...

February 6 at 4:21pm

 

I have seen this happen z few times on this site, so much so I don't feel I can post about how I'm feeling, that's why I started another group for Partners of stroke survivors where we can feel free to say how we are feeling ask what we may think are silly questions without being judged, I won't post the name of the group but if you would kind to join please send me a personal message with friend request xx

January 25 at 8:18am

Joyce Hoffman Why does someone "caregive" when there are options? Caregiving is only for special people who don't complain about it to other people.

Like · Reply · January 25 at 9:31am

 

Yeh..
GFYS

January 25 at 9:47am

So Joyce what are the other options you are talking about?

January 25 at 12:18pm

I'm"caregiver" to my 30 Yr old daughter

January 25 at 9:34am

If by dance you mean be happy or at least content I say yes! It takes time and for me a relationship w God.

Take it one day at a time. I cried many days and nights but it be came less and less.
I try to find good in lil thing.
Best wishes too you.

February 4 at 9:00am

Yes dance, dance, dance. It's great exercise in any form. I do it with my husband who is in bed and asked him to shake his shoulders because he was getting contracted and I like to see him smile. Dancing is for the soul and everyone should do it whenever they can. Express yourself even if it's a sad dance.

February 4 at 6:28pm
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My post was in a metaphorical context. "You can still dance" shouldn't be taken literally. Some people in this group did. With my right side affected, I could have said lots of other things, like "You can still play the piano" or "You can still clap" or "You can still play golf."

Some pleaded for the Admin to step in and say something. Huh? If Facebook is a populist tool, why?

In response to that person who gave the first reply, don't bet on your spouse if the tables are turned. You may think that, but everybody processes caregiving differently. For example, my partner of 17 years couldn't take it 12 years into the relationship when I had a stroke, and rather than wait for him just to come out and say I should leave, I ultimately left to go to another city, with a driver and me traveling through a snowstorm with icy roads. All the inferences were there, like telling me about the woman a long time ago, a cancer patient, who lived in their house and all the resentment he had by losing his space, or imploring me to watch the movie Amour about two octogenarians where the wife had a stroke and the husband, who was the caregiver, contributed to her demise. I am happy without him. I think he is happy without me. I haven't talked to him in years. But I did him a favor. I don't like to see anybody struggling.

I wasn't keeping a scorecard of who had it worse. But just to be clear, the stroke survivor wins in that category. Some have lost their jobs, their pastimes. Some suffer from uncontrollable spasms, deep depression, mood swings. Strokes are a bitch. 

Mark Twain, amid conjecture, is often given credit this quote: You can be sure of two things in life: death and taxes. (Ugh. I know about the latter). But relating to the former, until you do die, there are options to any situation in terms of caring for a stroke patient. Listen up, caregivers. Take a break by having somebody--a neighbor, a family member--do the caring for a bit. Google your options of alternative places where the stroke patient could go for care permanently. You might be surprised at what you could find. But by no means, don't caregive and resent it. Don't play the victim role. Even though stroke survivors' brains were affected, they know. Trust me. They know.

Plus, caregivers can still dance. That's the bottom line, isn't it?

You Probably Won't Get 100% On This Quiz About Strokes

Just what you wanted--a quiz to start off the new year. (Just joking). But take the quiz anyway. Even stroke survivors may not get them all right, but I hope they do.

For all the people who didn't have a stroke, I'm providing this quiz not to scare you but rather to educate you and make you more aware of strokes and their effects. Did I succeed? Well, you tell me! Write the letter of the correct response for all 10, if you can. The answers are at the bottom of this post. Here goes:

1. The first one is easy. What happens to a majority of people when they get a stroke?
     a. The mouth droops.
     b. The words are slurred.
     c. The person has trouble walking.
     d. The person is confused.
     e. All of the above.

2. What happens to the tongue initially when somebody has a stroke in a majority of the cases?
     a. It recedes.
     b. It gets longer.
     c. It goes crooked when the person sticks it out.
     d. It locks in place.
     e. It vibrates. 

3. Someone in the United States has a stroke every 
     a. 45 seconds.
     b. 2 weeks.
     c. 3 days.
     d. 2 minutes.
     e. week.

4. A stroke occurs
     a. when a clot blocks the blood supply to the brain.
     b. when a blood vessel in the brain bursts.
     c. randomly without cause.
     d. only when people reach the age of 65 or older.
     e. with either a and b.

5. Some risk factors of getting a stroke are
    a. heredity.
    b. age.
    c. gender.
    d. just a and b.
    e. a, b, and c.

6. Ethnicity plays a role in stroke attacks in that
    a. African Americans have double the stroke rates of Caucasians in the U.S.
    b. Caucasians have double the stroke rates of African Americans in the U.S.
    c. Asians have double the stroke rates of African Americans in the U.S.
    d. African Americans have half the stroke rates of Caucasians in the U.S.
    e. Asians, African Americans, and Caucasians and in a 3-way tie for stroke
        in the U.S.

7. Strokes are more likely to happen to
    a. low-stress workers and poor education level.
    b. high-stress workers and high education level.
    c. high-stress workers and poor education level.
    d. low-stress workers and high education level.
    e. anyone.

8. Every year, how many people have strokes worldwide?
    a. 2 million
    b. 300,000
    c. 5 million
    d. 10,000
    e. 15 million

9. According to a prominent study, what percent of the people who recover from their first stroke will have another stroke within 5 years?
    a. 10 percent
    b. 25 percent
    c. 75 percent
    d. 90 percent
    e. 100 percent

10. A stroke occurs when the blood supply to part of the brain is suddenly interrupted by a clot (ischemic stroke) or when a blood vessel in the brain bursts, spilling blood into the spaces surrounding brain cells (hemorrhagic stroke). According to these facts, the brain cells
     a. die and cannot be regenerated according to all studies.
     b. live regardless of the kind of stroke.
     c. are in an ongoing study at the Cleveland Clinic to determine whether they can be
         stimulated and improved.
     d. live or die, depending on your gender.
     e. live or die, depending on your age.

How did you do? Tell me in the Comments section under this post if you have time.

   







Answers: 1. e, 2. c, 3. a, 4. e, 5. e, 6. a, 7. c, 8. e, 9. b, 10. c

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!

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.