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I was employed at Cozen O'Connor, an international law firm. I worked at the largest office in Philadelphia when I had my stroke on April 8, 2009, in the middle of the night. It took me a year to realize I could never go back there. It also took that long to realize I was disabled. I don't embrace the stroke -- not now, not ever -- but I accept it because I have two options: live with the stroke or... well, you know the alternative.

Mar 12, 2015

The Chances of Getting a Second Stroke, aka Who Me? Worry?

You probably don't know James Wilson, but the folks at Lighthouse Baptist Church do. In 2000, the Pastor wrote a sermon called "Who Me? Worry?" that has absolutely no connection to the gap-toothed, poster boy of MAD Magazine, Alfred E. Neuman, who said sort of the same thing. Alfred substituted "what" for "who." But I digress.

Anyway, in the sermon, Pastor Wilson took Matthew's words in the New Testament (chapter 6, verse 34) and brought them up to date: 

Therefore do not be anxious for tomorrow; for tomorrow will care for itself. Each day has enough trouble of its own. 

His sermon was about how much we worry about real things, like children worrying about death and adults worrying about leaving their children too early when death knocks on their door.

In my world, a second stroke was the real thing. After almost six years since my stroke which happened April 8, 2009, my top worry was about getting a second stroke. Of course, I Googled it, and I found the following article reported by HealthDay in 2005:

"People who have had a minor stroke have a 43 percent risk of another, potentially fatal stroke within 10 years, Dutch researchers report."

There were 2 things wrong with that report. First, it was only said about one country, and second, the report was 10 years old. So I continued to look and found this one from Deborah Davis, DNP (Doctor of Nursing Practices), written 10 years later, aka 2015:

"The American Heart Association and  American Stroke Association estimates nearly a third of the strokes which occur every year in the United States are second strokes.  Also, physicians contend there is a 40% chance of having a second stroke within five years of the first."

If that were true, that means I passed the 5-year milestone. And this from Dr. Oz, a cardiologist, television star, and heart throb with the 45-and-older set, written in our current year as well:

"Certainly, many strokes are caused by high blood pressure. For those people, there's a 20 percent recurrence rate within two years if they control their blood pressure, compared to a 50-percent rate if they don't. You can lower that 20 percent even more (by about 70 percent more) by avoiding smoke (even second-hand), eating healthy fats (like 2 grams of distilled fish oil or an ounce of walnuts a day, controlling stress, and meditating daily."  

I have low blood pressure, don't smoke and I'm not around smokers, eat walnuts every day, got over my stress through therapy, but I don't meditate. Maybe I should. I'll work on that.

Last year, Dr. Bernd Kallmunzer of the Department of Neurology at Universitätsklinikum Erlangen in Germany, after conducting a study on second strokes, told Reuters Health, "Taking a pulse reading can detect atrial fibrillation, a leading source of blood clots that travel to the brain and cause stroke. Detecting atrial fibrillation is important because the patient can be treated with anti-clotting medications to reduce the risk of another stroke or death.

"The risk of a second stroke is highest during the months after the first one [now it's months--better yet--and a neck pulse is ideal for somebody who has use of only one hand], but currently researchers do not know exactly how long this kind of pulse monitoring should go on," he said.

As my grandmother used to say, about everything that was benign, including taking your pulse, "It couldn't hurt."

Feb 24, 2015

Ten Things NOT to Say or Do to a Stroke Patient


Even though they had good intentions, in all fairness to me, some of them said and did things that were downright insulting, if I took the comments and body language personally. But I didn’t, for those people who took the time and came to visit me.

In all fairness to them, how could they know the right responses from the wrong. What it really comes down to is this: How do you speak to a stroke patient who’s had her life turned around in a 180-degree spin?

I made a list of the top ten things you should never say or do to a stroke patient, and I, too, have been guilty of most of them before having my stroke when I visited stroke patients. 
So having set the record straight, here goes.








1. Saying ‘good girl’, ‘good boy’, ‘good job’

Those are phrases you should say to your pets when they are being rewarded with a “Pup-Peroni” or Doritos’ chips. If you say them to me, I am not really being a good “anything.” I’m just sayin’. IT’S SORT OF CONDESCENDING.

 

2. Talking loudly

People have a habit of speaking loudly to foreigners and the sick. Just because they are from somewhere else, speaking loudly to a foreigner will not help get your point across. There is no hearing problem involved. The same thing applies to me. HOW DOES SHOUTING HELP?

 

3. Talking slowly

Talking slowly to a foreigner might be an asset. But talking slowly to me makes me feel mentally disabled. How would YOU like it if someone said, “How — are — you — feeling — today?” If I could, (and I wasn’t able to then), I would have talked quickly in response, possibly making them change their way of speaking. I REPEAT–HOW WOULD YOU LIKE IT?

 

4. Making faces at me

Stroke patients are difficult to understand at times, but please don’t squint, or turn your mouth to one side, or wrinkle your nose at me. Just ask me to repeat my statement, and if you still can’t understand, ask the question in a different way. After all, you’re the one with a full brain! SO USE IT!

 

5. Talking over me

I mostly listen, but when I get up the courage to speak, let me do it. Don’t interrupt me in the middle. In other words, LET ME FINISH!

 

6. Completing my sentence

Some people find the right word choice instantly, but it takes me a few seconds more. So please stop trying to fill in the blanks. WAIT! I’LL GET IT!

 

7. Giving me lists of things to do

If you give me a list of five or more things to do, I’ll may miss one. My brain is going, but the parts that are dead…well, simple died and there’s no hope of getting them back. Did you ever hear that heavy drinkers lose brain cells and the cells won’t be replaced? Same thing. YOU HEAR THAT, HEAVY DRINKERS?

 

8. Ignoring me as if I’m invisible

Once in awhile, at Rehab Y, I would see doctors on the outside. If I’m waiting at a new doctor’s office, for example, staring right at some person who’s in charge, the person invariably stares at my friend to find out what my friend wants, forcing me to shout and look like an idiot–which I am not. I shouted several times in person but even more on the phone. Some of the people just don’t listen and say their “shpiel” regardless if I object. “FOR CHRIST SAKE, I HAD A F***ING STROKE. GIMME A BREAK!” 

 
9. Saying I’m not moving fast enough
Once in awhile, people will say something to the effect, “Could I get by you?” and start moving before they even hear the answer. Their rhetorical question, because that’s what it really is, a few times cost me my balance. WHY ARE PEOPLE IN SUCH A HURRY IN THE NURSING HOME?

 

10. Hanging up on me

A lot of operators hang up on me. They are nameless and they take advantage of that fact. But it doesn’t help me. WHY WON’T THEY WAIT?
-----------------
Currently, all these situations are still going on with me. Yes, I tell it all from my point of view, hoping that healthcare professionals will take advantage of my thoughts, learning why stroke patients are still frustrated. I am tenacious in my mission to educate the world about stroke survivors. Why do I use "patients" and "survivors" interchangeably? Because sometimes, people make me feel that way.

Feb 14, 2015

Psychotherapy: It's Been My Life Changer

When one thinks about therapy for stroke survivors,
physical, occupational (which is a dumb name to begin with--it doesn't have anything to do with a job), and speech therapies are the obvious choices. All the rehabs provide the same, old thing. But what's the missing piece? Psychotherapy, of course! None offer that as routine.

My partner suggested mental therapy almost six years ago. But I didn't do it, not because I didn't think that I needed it after the stroke that caused maximum heartache to both of us and almost ultimate death to one of us; I didn't do it because I wasn't ready. That's the way it was then, and nobody, not even my partner, could change it.

Even if you think you're perfectly all right (which actually no one is) and especially if you think you're not, everyone should experience mental therapy sessions at least once in a lifetime. Most, if not all, insurance plans cover it. You can choose a licensed social worker, a psychologist, a psychiatrist, the latter being able to write prescriptions. But all of them give support with something, maybe a chain of somethings, you just can't figure out.


I've gone to a licensed social worker who is also a psychotherapist for about a year now, twice a week, 50 minutes per session, for disappointments and depression from failed relationships among family and friends, some having to do with the stroke, some not. She will read this post and know that I am talking about her. To afford her anonymity, I will call her Sue.

Sue and I talk about a variety of things, like self-esteem, self-worth, and dignity, about life choices, responsibility, and values, about betrayal, rejection, and revenge. I am not nearly done, but looking back, I have made progress. When I first came to her, I was an open, walking wound, but she taught me how to give myself more value, to be a good person. But it turns out, according to Sue and me in collaboration, I was questioning my behavior before the stroke, like choosing the wrong men, angry like my father, narcissistic like my mother, bullying like my brother, or feeling revengeful thoughts against people I once cared about.

Though her office is upstairs, she meets me downstairs to accommodate me. The downstairs space has no comfy couch, no budding plants, no inspiring pictures. Just talk. It's enough for me. With a notebook on her lap, she writes occasionally and listens intently, speaking at random intervals.

Sue is my rudder for making most of my nonsensical thoughts sensical. But she's not a magician. Some of my thoughts get short shrift, dismissed, like the rubbish they are. "Seriously?" she often inquires. And every situation prompts more thoughts. She challenges me and I embrace the challenges. We are a good team--the tough psychotherapist who doesn't let me get away with bullshit comments and the willing patient, eventually choosing what I will become. But not tomorrow. I am a patient patient. I am willing to wait.

Jan 20, 2015

The Geek Squad and a Stroke Survivor: It's Like Apples Communicating with an Orange

I was desperate. The whole building had a wi-fi outage, meaning that FIOS knocked out my triple play: the television, the Internet, and the phone. And when it came back on, the television, the Internet, and the phone all worked, but the printer was off the network, aka offline. I knew because the blue light was blinking. I had a speech to give in 3 days at a local hospital and I had to key-in my notes and, consequently, print them. So I, in the current vernacular, was fucked.

I texted my son in Boston who works for Google as a network admin.

"How do I get printer back online," I whined.

"Um, who is this?" my son inquired. I thought he was joking. He was not.

"It's your mother, damn it. How could I get my printer to work? It went offline in the wi-fi outage." Frustration comes to me so easily, now that I'm a stroke survivor. 

"Nothing I can do. Call your Internet provider. Or Google it." Google it. He always ends the conversation that way.

So I texted my other son who works for IBM, here in my city, as a programmer with the same question.

"Everybody thinks [and by everybody he meant me] that I'm supposed to know everything about computers," he lamented.

"I just thought--." I couldn't even finish the sentence.

"I'll take a look when I come over on Sunday," he said because he knew that I really, really needed that printout for my speech.

One son in Google. One son at IBM. All 3 of us in IT, and nobody knew how to fix the wireless printer. Huh.

So Sunday rolled around and he took a look at the printer,  sitting himself down on the rocking chair placed strategically, for my benefit, in front of the printer that was 30 feet away from the laptop. He got the password from the router, yet no luck. He left and I called the Geek Squad.


The Geek Squad, originally independently-owned, was bought by Best Buy in 2008, and fixes your technical what-have-you--computers, printers, home theaters, for example--starting at $250 if you're interested in a one-time home repair and in a bind, emergently speaking, less if you could wait longer. They also have phone support which you could pay an initial fee of pennies short of $100 and $10.95 a month. You could cancel the monthly service fee at any time, but the $100 is theirs. They call themselves agents, like the CIA or FBI.

So I elected for the phone support. I mean, how hard would it be to get the printer online, you know? I called, and just so I wouldn't get anyone in trouble who's probably making close to minimum wage, the names I'm using have no connection to reality. Having said that, Richard was my agent.

"Hello. My name is Agent Richard. I know that problems with technology can be frustrating. [C'mon. He was reading off the script]. What kind of problems are you having?" the agent said in a monotonous tone, as if one problem a day was all that he could handle. I told him the story.


He didn't have to tell me that he was a member of the Geek Squad. I could just picture him. You know the kind, where if his house is on fire and flames are shooting through the roof, he might ask you to wait a minute because he has to finish the algorithm. And that ho-hum, flat voice slayed me.

"I'll have to charge you a fee first." [Of course].

After he accepted my card and the initial subscription fee, he took over my computer, after I approved, by his moving the cursor around. I carefully watched, but these guys were good. After he opened ten windows quickly, including 2 with code, I was lost. 

"You need to get a secret code," he said, adding a little intrigue to the mix, "and I'll type it in for you." A bunch more windows opened, and by now, we were thirty minutes in. "I'll transfer you to an engineer who knows about printers."

"Wait  a minute! I thought you were going to fix my printer," I implored, ready to explode from the passive voice. 

"You'll have to wait for the engineer," he said. So besides agents, they now had engineers, too. "You really shouldn't wait more than 40 minutes."

"Forty minutes," I screamed and I was exploding. "Do I have to be on the phone or can he call me back? Do I sit at the printer or the computer?" I was running out of power, on my cell phone, I mean. Two bars. But he had already gone and left me asking the questions to myself and listening to promos for the Geek Squad, over and over, that were playing in the background.

Richard returned 15 minutes later. "It should take a little longer."


"How much is a little?" I asked.

"Well, you don't need to be on the phone. He'll call you back."

I gritted my teeth and hung up. Three hours passed and I needed to get my mail in the lobby. So I stood up, left, and in the distance as I was halfway down the hall, my phone rang in my apartment. When I returned, I got the message the engineer left.

"Hello. This is Myron. I heard you wanted your printer fixed. I won't be here any longer today, but I'll pass the message on." I never got a return call. So the next day, I decided to write to the Geek Squad about the blue, blinking light. Here is the response I got from Phil:

"Sorry to hear that.  The blinking light indicates that the printer is no longer connected to the network – this can be due to a change in the network (a new router or Wi-Fi password), or increased network traffic causing a conflict with the printer’s IP.   Generally, the easiest way of getting a printer back on the network is through a temporary USB connection.  If you don’t have a USB cable, there should be other options for getting the printer online if the printer has a screen with menu options.  If you are available, please let me know so we can create a new session to get your printer back on the network and working with your computer."

I understood the message, but I just couldn't do a new session. Now, I was out of power, but I agreed to the session anyway because I am tenacious. My speech is tomorrow, but I haven't heard from Phil yet. I sent the text of the speech to my son and he's going to print it for me. 

The Geek Squad didn't come through, but geeks are like everybody else. It doesn't take much to just fuck up. And my printer? Don't ask.



Jan 1, 2015

Why I Still Have a Flip Phone, aka How I Missed the Smart Phone Era

"I want to put a ding in the universe." ~ Steve Jobs

And ding it was, partly because of the I-Phone which Jobs helped create, which led to more Smart phones manufactured by a slew of companies. I'll give you a visual history of cell phones leading to the Smart phone, beginning with the first cell by AT&T in 1946:


















(that's the kind I have)

 




And finally....the Smart phone pictured with the genius, the  smug Jobs.


I don't have an I-Phone or any other kind of Smart phone and here's the reason why: When the Smart phones became really hot in 2007, I changed jobs and ended up at Cozen O'Connor international law firm in Philadelphia with a Blackberry which is a kind of Smart phone, but it belonged to the firm and I didn't mess around with it by learning how to install apps. It simply wasn't mine and I didn't want to rock the boat.

Then I had the stroke in April, 2009, and I had to return the Blackberry by mail in exchange for my shoes and make-up that were in my cubicle. I got a flip phone that served as my lifeline in case anything happened--a fall, a slip, a seizure. But post-stroke, after the first year, I didn't bother to change it. The flip phone was good enough.

But now, 6 years later, I want more. Here's a rundown of the highlights:
--By the 2nd year,  I started to write a book and this blog, both named "The Tales of a Stroke Patient."
--By the 3rd year, I started to go shopping in my wheelchair or walking with my quad cane, depending on my mood which wasn't great. 
--By the 4th year, I wanted braces because the medics, at the time of my stroke, shoved an endotracheal intubation tube  down my throat so I could breath, and in the process, knocked some teeth out. 
--By the 5th year, I was searching for support groups to invite me to their meetings as a public speaker about strokes.
--And now, I desperately want a Smart phone.

So I got in touch with four manufacturers of devices that could help stroke survivors use a Smart phone with only one, operable hand or anybody who drops or loses or uses the phone constantly. For survivors, the phone or case with device could go on your bad hand which leaves your good hand to do all the work. Or the phone with device could go on your good hand leaving your thumb to do all the work. You'll  just have to judge for yourself.  

The ratings of the devices were done on the following: ease of use, comfort, durability, and cost, with 5 being the highest. I refer to the devices as they are known: the FLYGRIP, the goStrap, the LAZY-HANDS Phone Grip, and the Universal ring, all available on Amazon. The search term I used on Amazon was "cell phone [name of device]".

They all come with very strong adhesive backing to stick directly on your Smart phone or the case that encloses it. And you can buy extra adhesive in case the adhesive wears out. Clean your cell phone or case with a dry eraser like Mr. Clean before applying the adhesive backing. Or you can use an antiseptic towelette like Lysol, but leave it dry before applying the device. If your case is the glossy kind, the adhesive stick is "iffy." If you decide you don't want the device, use a credit card to break the seal. 

I had four used cases that were donated by providers and affixed them each with magnetic weights to equal an average 6 ounces for each phone. I used each device for 2 weeks, 2 hours each a day. Now, I was ready to evaluate.


The FLYGRIP:
Ease of use--5
Comfort--5
Durability--5
Cost--$29.95
The FLYGRIP was the best rated in every category. After 5 minutes, I couldn't even detect it on my fingers. It comes in 3 sizes and the only one of the 4 devices that comes with a 60-day, money-back guarantee! It's the most costly, but the guarantee makes it worth it. 


The goStrap:
Ease of use--5
Comfort--4
Durability--5
Cost--$10.20
I found the goStrap the second best. It accommodates everybody because you fit only two fingers through the strap. During 2 hours each day, I was aware of the strap the whole time. It's do-able, but again, I was aware.


The LAZY-HANDS Phone Grip:
Ease of use--5
Comfort--3
Durability--5
Cost--$11.99
The finger grips were easy to put on, but I was aware of them the whole time. My fingers are slender and they just about fit. So if you have exceptionally fat fingers, this product may not be for you.


The Universal Ring:
Ease of use--3
Comfort--3
Durability--5
Cost--$3.92 reduced from 21.99
This ring doesn't have the stability of the other 3. It's awkward in only having one finger through the ring. And if it's really cold weather, the ring would be equally cold because it's the only one made of metal. It's no wonder that it was reduced! The ring serves as a stand for your Smart phone. But seriously. Is that necessary?

So there you have it. At last, I'm going to get a Smart phone with the FLYGRIP! And I'll enter the Smart phone generation quietly, as if I didn't miss anything.




Dec 28, 2014

It's Time for New Year's Resolutions...Again


Last year, at the very same time, I wrote 10 New Year's resolutions for 2014. I referenced the top-10 list that David Letterman, a talk show host for all my foreign readers, uses occasionally, like "The Top Ten Things That Almost Rhyme With Peas"or "The Top Ten Things That You Wouldn't Want to Hear on Christmas Morning." Always creative. Sometimes funny.

So inspired by Letterman, here I go again, "The Top Ten New Year's Resolutions for 2015, Not All Having to Do with Stroke Survivorship": 


10. I'll attempt to find out, from the before and after pics, why I see Marie Osmond's 50-pound weight loss via NutriSystem not seem like 50 pounds. Photoshopped, maybe?




9.  I'll do research on GEICO, the insurance company, and figure out why the ads make no sense whatsoever to me. Maybe it has something to do with the strok.... Nah.


8.  I promise to smile at everyone who insults me, just like Don Keefer in The Newsroom, to throw 'em off the track, like I have something "up my sleeve."



7.  I'll try to not become frustrated when somebody looks at my caregiver, instead of speaking directly to me in my wheelchair, and says, "Does she want to give us her height and weight?" as if I'm invisible. I used to want to knock them the fuck into next month. I still want to smack them.



6.  I'll read the dictionary. My son has done it twice. Remembering is the trick.



5.  I'll figure out an invention for the brain injured, and that includes stroke survivors. Eventually, we fall and lie there, sometimes for a long time, until someone comes to rescue us.


4.  I'm going to stand and walk around once an hour (except when I'm sleeping, but you knew that already). http://stroketales.blogspot.com/2013/07/the-5-ws-and-h-of-getting-up-and-moving.html



 3.  I'll donate more. I have a lot of "stuff" that I just don't need, like watches and books. The time is on my cell phone and I have a Kindle? And do I need 20 pairs of shoes?



2.  I'll find out whether Sony just invented the hack as a publicity stunt for The Interview.


1. And finally, I'll continue saying that it was my right frontal lobe damage to my brain that accounts for my having no filters. So all of you who were offended, get over it.


 Happy New Year, goddammit. See? No filters.

Dec 7, 2014

Speech Therapy Is Done, aka I Graduated from Talking School

I still have the remnants of dysarthria, the speech condition that makes talking tough after the stroke and affects the muscles in the face, particularly the mouth, and respiratory system. But I went to a speech therapist to get help and who I didn't like at first. She was all grim and business-y. Like when she corrected me when I called her a speech therapist instead of the more la-de-da-sounding speech and language pathologist. Drama queen, I said to myself.

Slowly, after two months, she got around to cracking a smile. When she and I were done a month later, she told me that her husband was an egomaniac, that her partying son flunked out of Harvard, and that her stressed-out daughter couldn't get pregnant. I sat there calmly, but I had my own problems.  

Anyway, there were four things I had to remember from the speech wizard: "HOSE." Permit me to explain.  


I started to develop that habit in 11th grade to be sure I could remember all the chemical symbols. When I was in college, and then when I started to work as a professional--a professor, a columnist, a technical trainer--I made lists of words to remind me what should be on the final or what was up for the day. The words didn't have to be in the dictionary. My only job was remembering what they were.  


For example, on the final exam in Sociology, "BIDS" meant sociology was the study of Behavior,  Interaction, Development, and Structure of organized groups of human beings. Or if I were going to teach a beginner class in Microsoft Word, I'd remember "NOPS" which stands for how to open a New file, Open an old file, Print, and Save a current one.  

It was the same way in speech therapy. Thus, "HOSE."


The H stands for Hydration. Make sure your water consumption has been sufficient after you sleep. Your tissues are dehydrated after sleep, naps as well, so it is important to sustain the water in our system. Aside from flushing out waste and and keeping other body parts lubricated, you'll need more water to hydrate your voice if you sleep with your mouth open, if you're sleeping with air conditioner or heating, or if you are allergic to dust particles.

The Institute of Medicine (IOM) recommends about 91 ounces of water per day for women and 120 ounces for men. You may need more if you're exercising, so if you are, Gatorade is good for replenishing the electrolytes in your body, but if you have none available, good ol' water is fine, too, in the meantime. Most people struggle to even come close to IOM's recommendations, so you have to focus on drinking, even if you're not thirsty.

Nov 18, 2014

My PT and the Marathon, aka I Want to Be a Contender

I was watching On the Waterfront the other day when Marlon Brando laments and, dare I say, whines, "You don't understand. I coulda had class. I coulda been a contender." 

Coulda been a contender. Huh. Brando's lines were about boxing, but my brain works funny now. I started to think about marathons (I was a runner, but never ran in any races) and that started me thinking, why not? My brain was going into hyper speed with the thought of being in a marathon and I missed the rest of the movie.

Anyway, I had a new physical therapist who used to be a fitness trainer and wasn't used to my weird questions, so I asked: "I want to be a contender," borrowing that line from Brando, "so could you train me to run in a marathon?" 

And surprisingly, she said, "Yes."

I made it clear. "Without a wheelchair, I mean." It could be my imagination, but I think she was sorry she replied so quickly.

The marathon is a running event with a distance of 26 miles and change. The Greeks had the first one back in the day when there were Olympics but no TV. 

Some runners do not participate in a marathon to be victors. Their personal time to finish the race is key, and some runners just want to finish the godforsaken race. Ten years ago, for example, the average marathon time in the U.S. for men was 4 hours, 32 minutes, 8 seconds, for women, 5 hours, 6 minutes, 8 seconds. I might do it in around 3 days, give or take. 

The PT still looked uneasy.  "I'll have to train you for a year," hoping, I think, that I would change my mind.

Of course, after her physical therapy session, I researched and found out that two weeks before the race, I'd have to load up on carbohydrates without increasing caloric intake to enable my body to store glycogen, an energy source, aided by carbohydrates, like potatoes and rice.

After the marathon, the recommendation is to eat carbohydrates for glycogen restoration and lots of protein to prevent muscle failure. So basically, fish and steak, potatoes and rice. I could live with that.

 And after the race, it is also advisable to soak your legs in cold water to get the blood flowing again.

Cold water. That was how Alfred Hitchcock got Janet Leigh to shriek in Psycho. Unbeknownst to her, he directed his assistant to turn off the hot water while she was positioned in the shower, and Janet let out a blood-curdling scream. Cold water does that. I'd do the same thing.

Staying hydrated during marathons is advisable, but over-consumption of water during marathons is not. 

"Drinking excessive amounts of fluid," one article in the New York Times said, "during a race can lead to dilution of sodium in the blood, a condition called exercise-associated hyponatremia, which may result in vomiting, seizures, coma, and even death." 

I barely survived the hemorrhagic stroke, which is not a small achievement in itself, but a year of training, frigid water, and possibly death. Nah. I didn't hear enough yet to change my mind. And I didn't finish my physical therapy sessions yet. So I'll let you know.

The big question is, why would I take the time, and a risk of cold-water shock and death, to run a marathon. The hip and flip answer is, it's on my bucket list. Flying in a hot air balloon over the Loire Valley, going tandem skydiving, or riding a mechanical bull are not. They were but not now.

But when I think more deeply about it, I want to spread stroke awareness so other people affected by stroke in the world could run the race, too, and I'd collect money for every mile I ran, preferably all 26 and change miles, and donate all the proceeds to stroke research. Running a marathon would do that.

Nov 17, 2014

Interlude: My Book, "The Tales of a Stroke Patient"

My book about strokes--"The Tales of a Stroke Patient"--was published September 26, 2012, and is not only for survivors but for caregivers, family, friends, health professionals, and anybody who loves to read. The facts are still the same because when you come down to it, strokes suck!

If I could get a stroke, anybody could get a stroke. I had low cholesterol, low blood pressure, no diabetes, a non-smoker, not obese. So WHY? My book offers theories. But more than that, it shows how stroke survivors could re-gain their dignity, self-esteem, and empowerment that somehow was lost in the process. 


Here's my promotion:
“The Tales of a Stroke Patient” making lemonade from lemons….

I just wrote a book about my stroke, all from the patient's—that is, my—perspective. How about taking time to read it!

from the publisher, http://bookstore.xlibris.com/Products/SKU-0115053049/The-Tales-of-a-Stroke-Patient.aspx, 

or from Amazon, http://www.amazon.com/The-Tales-Stroke-Patient-ebook/dp/B009J9QC64/ref=sr_1_1?ie=UTF8&qid=1373898600&sr=8-1&keywords=tales+stroke+patient, 

or from Barnes & Noble, http://www.barnesandnoble.com/w/the-tales-of-a-stroke-patient-joyce-hoffman/1113052852?ean=9781479712496. 


Don’t want to use a credit card? Message me at hcwriter@gmail.com or Facebook to see how you can get a copy!

Here's the press release from the publisher:

New Book Recounts the Arduous Ordeals of a Stroke Survivor
Author Joyce Hoffman discusses the long and difficult road to rehabilitation 

According to the Center for Disease Control, cardiovascular accidents, commonly known as strokes, account for at least 128,842 deaths annually in the United States. They are not only the third leading cause of death in the nation, they are also the leading cause of serious, long-term disability. Joyce Hoffman recalls her own experience as a stroke survivor, and her struggle to recover from disability, in The Tales of a Stroke Patient.

Hoffman begins with the symptoms that preceded the sudden and unexpected cardiovascular accident that left her paralyzed and unable to speak. She then recollects her time in the hospital, the hopelessness, fear and frustration she felt, and the slow journey towards recovery she had to undertake. Hoffman recounts her difficulties and misunderstandings with the overworked staff of her rehabilitation center, the long hours of therapy she had to endure, and the progress she made despite her disabilities. In her book, Hoffman also shares important medical advice, as well as a variety of other stories from her life.

With The Tales of a Stroke Patient, Hoffman hopes to help other stroke survivors re-gain the dignity, self esteem, and empowerment that was taken from them. Her work is a sincere depiction of the disabilities and difficulties countless Americans have to live with on a daily basis, and serves to raise awareness on one of the nation’s most important health issues today.   


Nov 1, 2014

I Triple Dare You to Take The Cleveland Clinic Stroke Risk Calculator, aka When Is Health Ignorance OK?

This situation is purely hypothetical. So here goes. You don't have a crystal ball that will predict the future, and if you knew, really knew, that you had a 50/50 chance of having a serious condition, like a stroke, for example, would you live your life differently?

Think about it while I'll  have you meet Katrina Walker, a woman with a 50 percent chance of having Huntington's, a disease that could cause her death in the next 20 or 30 years. 

She's 28--active, healthy, content, working as an activity assistant at a senior center.

But Walker's mother has Huntington's disease, a degenerative disease that gives Walker a 50 percent chance of having the Huntington’s gene. Jon Fortenbury covers the story of Walker in The Atlantic when he writes, "Huntington’s causes nerve cells in the brain to break down, and typically hits between the ages of 30 and 50, starting with mood changes and depression. In its latest stage it can cause an inability to speak or make voluntary movements. Most people diagnosed with Huntington’s die from complications of the disease, such as choking and pneumonia." 

There's a test for Huntington's, but Walker won't take it, at least not at 28 years old.

"Knowing isn’t going to prevent me from having it. At this point in life, I don’t need to know," says Walker
who agrees that "knowing" would make her anxiety go through the roof. So she prefers to be, according to the myth, an ostrich, putting her head in the proverbial sand and not hearing the outcome of the test.

Fortenbury cites one study in which 15 percent of college students paid to avoid a free herpes test. 
“Unnecessary stress or anxiety” was the #1 reason many college students gave for not wanting to be tested.

There were other studies, too, that Fortenbury offers, like the 2011 study that says "knowing" is more likely to lead to divorce, early retirement, and carefree spending. 

He says, "Knowing your life expectancy is cut by 20 to 30 years is bound to cause some urgency."

For Walker, she doesn’t plan on having kids so she’s not worried about passing on the Huntington gene.

“Right now, I feel like my future is wide open and if I got tested and found out I have Huntington’s, I’d feel like, ‘Well, there’s my future, there’s my fate,’” Walker said. “Right now I have more time and freedom.”

That argument got me to thinking, as I said in the beginning on this post, if you had a test and knew for certain that you had a 50/50 chance of having a serious condition, like a stroke, would you live your life differently?

The Cleveland Clinic has developed a Stroke Risk Calculator with the caveat: "The stroke risk calculator below can be used to assess your risk of having a stroke within the next 10 years. Please note that this calculation is an estimate only - please see your doctor for an accurate diagnosis as there may be other contributing risk factors." 

To try it, if you dare, go to this link: http://my.clevelandclinic.org/health/tools-quizzes/stroke-risk-calculator.aspx

I achieved a total of 6 out of 27 points with a 10-Year Stroke Probability of 3%. The average 10-year stroke probability is 7.2% for women in my age group. (I am 66). 

But then again, I got a stroke because of medications: http://stroketales.blogspot.com/2014_07_03_archive.html

My bottom line? With only one go-round at life, if my 10-Year Stroke Probability was 50 percent or higher, would I want to know?

It's like the country song by Tim McGraw, "Live Like You Were Dying":
------------
I was in my early forties with a lot of life before me
When a moment came that stopped me on a dime.
I spent most of the next days, looking at the x-rays
Talking 'bout the options and talking 'bout sweet times.

 

I asked him when it sank in
That this might really be the real end.


"How's it hit 'cha when you get that kind of news?
Man, what'd ya do?" He said,

 

"I went skydiving, I went Rocky Mountain climbing
I went two point seven seconds on a bull named Fu Man Chu
And I loved deeper, and I spoke sweeter
And I gave forgiveness I'd been denyin'."

 

And he said, "Someday I hope you get the chance
To live like you were dyin'."

 

He said, "I was finally the husband that most the time I wasn't
And I became a friend, a friend would like to have,
And all of a sudden goin' fishin' wasn't such an imposition
And I went three times that year I lost my dad.

 

"Well I, I finally read the good book
And I took a good, long hard look
At what I'd do if I could do it all again.
And then


"I went skydiving, I went Rocky Mountain climbing
I went two point seven seconds on a bull named Fu Man Chu
And I loved deeper, and I spoke sweeter
And I gave forgiveness I'd been denyin'."

 

And he said, "Someday I hope you get the chance
To live like you were dyin'."
------------

I would want to know.