Mar 5, 2013

Nothing Says It Like the Norovirus, aka I Hurt So Much, I Wanna Die

In 1968, in the tiny town of Norwalk, Ohio, 85 times smaller than Philadelphia, midway between Cleveland and Toledo, acute gastroenteritis victimized the Bronson Elementary School, so much so that the gastroenteritis closed the school for awhile, and the virus became known as the "Norwalk agent." The people of Norwalk, Ohio,  unfortunately, were dubbed as the folks where that virus originated, and the name was shortened to norovirus.

The virus must have been around for a long time, but now it is identified from stool samples to make it officially that virus. Since 1968, the norovirus has run rampant on the close quarters of cruise ships, sending hordes of people, at times, to their respective toilets to vomit, along with bouts of diarrhea and stomach pains, the ships sometimes returning to port earlier than expected. In fact, noroviruses are the number one cause of diarrhea in adults. Also on the list, nursing homes and schools breed the norovirus as well.

The norovirus is what causes gastroenteritis, or swelling of the gastrointestinal tract. I've become a quasi-expert by now. I never even heard of the norovirus until my doctor said the symptoms point to my having it.

Needless to say, and forgive me for getting a might graphic, the norovirus is messy and painful, and that's why I didn't write for almost eight weeks. The virus left me lethargic, weak, and powerless. The virus also gave me chills, low-grade fever, and muscle aches, all of which, being in a state of denial, I said would disappear tomorrow. And when tomorrow came, there was a whole new set of tomorrows.

Let me start at the beginning. My friend was going to Philadelphia close to eight weeks ago and wouldn't be home for dinner, so I ordered a pizza from the local joint I used so many times before. It was delivered to my house--hot, crispy, and taste-worthy. I ordered a medium pizza cut into six slices, three for today, three for tomorrow. After I ate the three slices, I developed heartburn. I never get heartburn. People sometimes get heartburn from peppers (which I had on my pizza), but to repeat, I never get heartburn.

So I did it again, just like I did with my insane headache just hours before my stroke--I didn't listen to my body, not taking the hints my body was giving me. Not that there was anything to do with my hemorrhagic stroke, but a little heads up would have been nice. The same with my heartburn which went from bad to worse in a matter of minutes. I couldn't do anything about the virus either, but a warning would have been nice, too.

I waited four weeks, until on a Saturday, the pain got so bad, I couldn't stand it any longer. I called up to my friend on the second floor and said, "I have to go to the hospital. The pain just reached that point." Of course, having heard me complaining incessantly for four weeks, he didn't question me.

It was a cold, blustery day as I navigated the ramp to the Emergency Room while he parked the car. I could barely wait for relief. I ambled in to the ER. Then my friend soon joined me, and I was taken back to a room. After drinking the contrast solution that would enhance my CT-scan, I threw up three times. The nurse said there was enough contrast solution left inside me. Then I took an X-ray and I drank some barium to enhance the picture. I felt awful, and I was too powerless to protest.

After the tests, the doctor admitted me because he didn't know what was wrong with me. The norovirus never came up in conversation. But why not? He had to know what a norovirus was, didn't he? Or maybe he cut that class in medical school.

Anyway, I was in the hospital for a week, crying often from the pain in my gut. The rest of the time, I was zoned out on Dilaudid, a pain killer. I was released from the hospital with a low-grade fever and no clear diagnosis. Five days later, the pain was starting to subside and I wasn't taking pain meds anymore, but I developed a rash that was itching so bad, at times, I thought it was the end of me. (Viruses can produce a rash anytime, I learned later from the primary doctor).  

So how did I get it? The norovisus is part of  group of viruses that inflames the intestines and is the leading cause of gastroenteritis in the United States. It is often thought that contaminated food is the culprit, but not always so. 

Norovirus is often called, colloquially, the stomach flu, but it isn't the influenza virus. It usually comes about if you touch contaminated surfaces or if you eat (which I didn't) undercooked or raw seafood like clams and oysters. It is highly contagious, and sharing utensils or shaking someone's hand, if you are infected, spreads the virus. Despite a stool sample which confirms that you have the norovirus, most people are diagnosed purely on their symptoms.

Diarrhea and vomiting heads you down the dehydration path, causing bigger problems than the virus. I was dehydrated at one point along the way, but I was aware of it and so knew the steps to correct it, which are drink, drink, drink water and juices, even if you don't feel like it. Alcohol and caffeinated beverages can dehydrate you further. Dizziness when standing, a decrease in urination, and dry mouth all can point to symptoms of dehydration. Severe dehydration like I had is also treated with intravenous (IV) fluids which were given to me in the hospital.

Like other viruses, noroviruses don't respond to antibiotics, which are designed to kill bacteria, not viral infections. So there's nothing to do but wait, until it all goes away. It's the eighth week now.


To ward off the norovirus, some of the things you can do are:
--Disinfect surfaces with a mixture of detergent and chlorine bleach after someone is sick.
--Wash your hands with soap and warm water for at least 15 seconds.
--Cook all shellfish thoroughly before eating them.

I still have the rash, though it is fading, albeit slowly. The most important thing is, I'm back, happily writing this post. (*itch, itch*) And what about the stroke that was so horrible? I'm glad to report that the stroke is currently on the back burner.

Jan 9, 2013

Mitt Romney, A Stroke Patient, and Facebook, aka The Good, The Bad, and The Ugly (Not Necessarily in That Order)

"What's this mean?" I asked my friend. "I don't get it." It was a cartoon.

First frame: One dog asks another dog, "Do you think Romney will win the election?"
Second frame: "Nah," the second dog says.
Third frame: "Why not?" asks the first dog.
Fourth frame: "Where have you been!?! He hates dogs! That's why!"

As the story goes, in 1983, Seamus, the Romneys' family dog, was transported on the roof of the family's car, windguard and all, to vacation in Ontario, a 12-hour trip from Massachusetts. The Governor and his wife were interviewed about that experience by Chris Wallace, Diane Sawyer, and so many others in the months before the election.

The Romneys said the story was overblown, emphasizing the trip on the roof was just as if Seamus were riding a motorcycle or on the flatbed of a truck. In August 2012, three months before the election, Devo, a band, released a single called "Don't Roof Rack Me, Bro (Seamus Unleashed)," to keep the high-profile story in the news.

And all the while, through the still-talked-about, 30-year-old Romney incident and updates on issues like KONY 2012, YOLO, Pinterest, Whitney Houston, and more, I missed it, because for close to a year, I was writing my book, "The Tales of a Stroke Patient," intently pouring over the laptop like the book was a mission to end all missions. After the book was published on September 26, 2012, I tried to find readers to buy my book. I don't know yet how many books were sold. A handful? Just shy of the Best Sellers List? Really, I have no clue, but most likely somewhere in between handful and humungous.

Writing a book and typing with one hand is no small feat, but concentrating on my disability, how it took me twice as long to type, feeling sorry for myself, crying in my soup, had to stop, and it did. Originally, the book started out as a blog to give stroke patients fond, but more not-so-fond, memories of their respective stays in rehabilitation hospitals and nursing homes all across the globe. Around the 10th post, I decided to turn the blog into a book.

The world seems small now, with people writing to me for copies from all corners of the globe--literally, except Antarctica. But I can't blame those Antarcticans. Maybe when global warning hikes the temperature a little bit higher, the Antarcticans will come, when their fog-filled, collective breath isn't hampering them from writing me an email.

I wrote to publishing houses for about six months, telling them why a biography about strokes was so important. I told them, coming right out of the World Health Organization's literature, "15 million people suffer stroke worldwide each year. Of these, 5 million die and another 5 million are permanently disabled. High blood pressure contributes to more than 12.7 million strokes worldwide. Europe averages approximately 650,000 stroke deaths each year." Still, no one was interested.

Then I heard about self-publishing. So I went to the "do-it-yourself" houses. That's how I found Xlibris, one of the originators of print-on-demand (POD). POD means they print the books as they're requested, helping Xlibris from storing books that can't be sold and keeping customers, and in turn authors, happy as their book orders come right away. It's a win-win situation, all the way around.

The one requirement I wanted the most was total control over my work. Fortunately, that requirement was familiar to Xlibris because, as they say, "we help hundreds of authors every month publish their work in the manner and form that they envision."

Xlibris started sending email attachments around July 2012. The attachments were arranged in the order expected, telling me the "next steps" I needed to take for the final step--publishing. I designed the cover, telling them that I wanted a pink brain and, on it, black letters that spelled out the title of
my book and my name on the front and spine. I chose the color, format, and style.

I designed the back cover, relating all the reactions from my blog and advance copies of the book. The people were all grateful that I was forthright with them. Many told me about the service I was providing, to educate people about strokes everywhere around the world.

I sent them three successive drafts of the entire book. When I was satisfied there were no more errors, at least none that I noticed, I sent in the final paperwork saying, "Yahoo. It's finished" (to myself), and then I was done. My package came with extra books, a press release, and a host of resellers that would advertise my book like Amazon and Barnes & Noble. 

Then I got the quirky idea to advertise the book on Facebook. If 15 million get strokes every year, it stands to reason that some stroke survivors would be on FB. So often, I put out a post on my book. That's when the ugly--and in my opinion, jealous--emails and just-plain-nasty posts arrived. There were 12 altogether and they hit me like the proverbial ton of bricks. They posts weren't threatening; they were just unnecessary and annoying, and the comments all used the second person "you" which adds a hint of animosity. Here is what some of them said (and my reactions in parentheses):

You obviously don't know how to market a book. I have an agent that does all that for me. (Big deal. You're rich enough to afford an agent).

You wanna sell your book? Give me three reasons to buy it. (I'll give you a lot of reasons, starting with "you might learn something").

You didn't even greet me before you posted on my personal page. (Oops. Where are my manners?)

 You can't advertise on Facebook. (Actually, you can).

(And this was the last one:) If you wanted to make a real difference, you would try to make an audio version for those people who can't f**king read because of their damned stroke. (Language, language).

Most--maybe all--of those 12 people reported me to Facebook as sending spam and I received a 7, then a 14, then a 30-day suspension from either acquiring new "friends" or from messaging new people. Facebook said that I can only write to people I know. What if you want to make new friends? Shame on you, Facebook and Mark Zukerberg, its founder.

I couldn't do anything about all the naysayers, but to make a audio version that works with the I-pad, I converted the book from a manuscript document into an Adobe .pdf version (remember, I had technical skills once?) and it worked. I had a "friend" whose name was Nicole test it. The I-pad now delivers an audio version of "The Tales of a Stroke Patient." So now how do you feel, saying I don't help the ones with poor vision from brain impairment. I think his name was Pat from Ireland. Or maybe Bob from Africa. No. That's not right.

Anyway, people can be petty, and you sometimes see that phenomenon in Facebook--and everywhere else, for that matter. Hey, Mitt Romney is a member of Facebook. He must get a slew of unnecessary and annoying posts, more than I do. From dog lovers, for example. Maybe I'll learn how he handles it.





Dec 23, 2012

Something REALLY New to Help Stroke Survivors

I'm just taking a guess. I never met him. But Robert Thornton is probably one of those guys that you meet every so often because, as it turns out, he is a humanitarian. Sharon, his girlfriend, had a stroke on April 4, 2012, and as a result of the stroke, developed, among other things, a subluxed shoulder, common in stroke survivors. She had severe pain that was caused by the misaligned shoulder. First, a little history on subluxation so you can understand what Robert did.

Taking all the medical mumbo-jumbo out of the picture, the shoulder joint, a ball and socket formation, is the most flexible of any joint in the body. It also makes the shoulder the most unstable joint. In a subluxed shoulder, popular wisdom, in plain English, explains that the shoulder joint's failure of the socket to completely cover the ball of the upper arm bone makes the shoulder reliant on soft tissue instead to hold it in position. When the upper arm comes substantially out of the shoulder socket, it allows for less mobility, and subluxation results.

With a shoulder subluxing, the patients sometimes feel a popping sound as the ball joint moves out of the socket then returns. Some patients feel their arms losing feeling. Others get a sense if they raise their shoulders too high, the shoulder will pop out permanently which, of course, it sometimes does. When a shoulder subluxes, pain occurs and is positioned primarily in the shoulder joint. The American Academy of Orthopaedic Surgeons (AAOS) says most of shoulder subluxations happen because the shoulder slips forward, starting the patient's pattern of avoiding motions which give pain to the patient, thus resulting in weakness for those motions the patient can't--or won't--do anymore.  The AAOS says the shoulder will often sense numbness and tingling, traveling down the arm.

Visual signs are often these:
     * Swelling or bruising over the spot where the injury occurred
     * Less rounding of the subluxed shoulder as compared to a healthy shoulder
     * Dimpling below the bony protrusion at the top of the shoulder

Even if you can't interpret the visual signs that accompanies subluxation as needing HELP, there is the pain, and that's where Robert comes into the picture. This excerpt comes from Robert, and I offer it to you, coming right from the man's heart:

"The ER ...man what a scary place...not much compassion there. They deal with death every day and it shows they do what they can, but honestly, how would you like the job of trying to calm down family members of a patient on the brink of death...that's gotta be hard on your heart and soul. Sharon was in ER for a week. The doctors told us not to expect her to recover and said if she did recover at all, she would have total loss of her left side. Ok, with that news shocking the family, what was I supposed to do? This is my soul mate and I knew if I gave up, she would, too. There was no way I was going to let that happen. So first things first. I taught her to eat so they wouldn't put a feeding tube in her (tough fight there they kept ordering a tube and I kept telling them to wait. I knew she would eat on her own given the chance). Ok, now we're off to recovery center.

"In-patient rehab....These people do great things and they’re very positive and encouraging (what a refreshing change). The therapy she received helped her leg, her speech,her eating and swallowing, just about everything but her arm and hand...this is what I would like to talk about. I have been by her side since her stroke every therapy she got. I repeated it in her hospital room and her recovery was amazing, but they couldn't really do anything for her arm (mainly due to the pain). I asked them about a sling to hold her arm and shoulder joint in place (they said the pain and swelling was from pinched nerves in the shoulder). They said that she just had to work through the pain because there was no sling that really worked for the sublux shoulder. My answer to that: bull****.

"I watched her therapist hold her arm in place and her pain went away. I started searching for a sling ...and sadly they were right. Every sling I found caused more harm than good...and they wouldn't let me put any on her. (They did try the givemore sling, but it just didn't work. Every time she bent her arm, her shoulder fell down). Well, I didn't stop there.

"When she got home, she had in-home care and I started making different slings while her therapist kept telling me what was wrong with each sling (I made 10 kinds). Finally, they started liking where I was going with number 11. When I finished it, her therapist loved it. Her pain level dropped to where she no longer takes pain meds. The recovery of her arm jumped 80% in two weeks. Now, all of her doctors and the therapist require her to wear the sling I made.

"All of her doctors and therapists kept telling me to patent the sling and get it out to the public because there were so many people out there that needed one. So I applied for a patent and put together a workshop to make them.

"Over the years, many people have tried to make an arm support for patients with shoulder problems. For a sling to meet the needs of the patient, it has to conform to criteria considerations such as subluxation reduction, easily worn/put on, ability to wear under clothing comfortably, weight distribution, freedom of movement of both upper and lower parts of the arm while keeping the shoulder in place. Our sling meets all these requirements.

"My sling starts with a comfortable arm support. I start with an elastic arm band with non-elastic cloth ends with elastic hook and loop fastening system for arm size and comfort . This is placed over the bicep of each arm. Each arm support has a strap permanently mounted on the top front and one strap grommet and one quick-release buckle mounted to the top rear.




"The straps are made of semi-elastic material. The top 2 straps start in front of the shoulder and go over the shoulder, crossing each other in the top middle of the back, and the strap from the top front of each arm support connects to the opposite arm support at a point at the top of the arm pit in the back at the buckle so you can adjust the upward pull on the injured shoulder. The third strap runs across the back from arm pit to arm pit with a hook and loop adjustment for lateral support of the shoulder joint."





If you, or somebody you know, has a subluxed shoulder, go to this site:

http://www.subluxsling.org/

Robert, who communicates through the therapist, says it might help me restore my arm somewhat. My sling arrived a few days ago and it's already working!

Dec 9, 2012

Babies and Strokes


This is a brain. It is also the unfortunate outcome of a baby whose mother experimented with cocaine, resulting in a premature birth and a bleed in the baby's brain. A bleed in the brain means the baby had a stroke. Hey! Wait a minute! Babies and strokes don't go together, or do they?

Note: for all you baby-makers out there, I'm not trying to scare you from having kids. This post is just a dose of reality.

You probably don't know the name Duncan Guthrie. He started a charity in 1952 for his daughter, Janet, who had polio, and he was determined to find a cure for the disabling disease. With money funded by the charity, research, in time, led to the first oral polio vaccine which wiped out new cases of polio in the UK. Now called Action Medical Research, the charity encompasses so many other afflictions, and that leads us to babies and strokes.

In 2009, Action Medical Research estimated at least one baby out of 2,300 in the UK born full-term were victimized by a stroke. These strokes often were unexpected at the time of birth or before, i.e. some developing babies had strokes in utero. The researchers didn't know if the babies, who are now barely three years old, had trouble using language because they hadn't matured to the point where anybody could tell the difference between a three year old saying gibberish or not.

But of the 100 or so children in the study, the researchers are working feverishly to know how stroke affects their language skills. Magnetic Resonance Imaging, most commonly known as MRI, is administered to the child to watch how stroke affects different parts of the brain. Sometimes, the brain readjusts itself, said the researchers, especially in a newborn, to compensate for the section that was harmed. Known by the medical term as plasticity, the brain takes charge of the imperfect tissue with the good part of the brain. In fact, in the first 28 days of life, stroke is more common than after.

So the big question is, how do you know if the newborn had a stroke? Newborns most likely would show no signs of a stroke unless they have a seizure. Seizures symptoms include staring, rhythmic and spasmodic episodes in the face, arms, and legs, stiffening of muscle groups, and pauses in breathing. Generally, newborn stroke survivors show less movement on one side of their body. "Handedness," the term given when newborns favor one hand over the other, could be a symptom of stroke.  Parents often mistake this as meaning that the baby is advanced for his or her age. In healthy babies, handedness appears at about 12 months.

According to the American Heart Association Journal (AHAJ), the incidence of stroke in newborns in the first 28 days is very elevated compared to infancy and childhood years. The following can happen at a rate of 1 in 4000 newborns:

     * Arterial Ischemic Stroke (where blood flow is stopped in an artery to the brain by a clot)
     * Sinovenous Thrombosis (where a clot appears in one of the veins in the brain)
     * Hemorrhagic Stroke (where an artery bursts in the brain).

After the newborn period, the risk of stroke decreases significantly and remains low until post-55.

This is what can happen in pregnancy and childbirth:
     * Proteins travel from mother to fetus, which aids in clotting. But if there's too much clotting, a
        stroke for the baby is more likely.
     * At the point of labor and delivery, childbirth can result in physical stress on the baby’s head with
        the arteries and veins in the baby’s head leading to clots and stroke.
     * Newborns have twice as many red blood cells as an adult which can lead to excessive clotting.
       (Stroke can sometimes be prevented by giving newborns blood transfusions the blood is diluted
       with saline).
     * Dehydration can cause the blood to clot, some signs of which are a dry mouth, dry skin, and
        fewer than six wet diapers a day.

A number of factors that can put a newborn at risk for stroke include:
     * If the newborn has a hole in the heart, it facilitates a clot going up to the brain.
     * If there is a genetic history of clotting problems, the risk of stroke increases.
     * If serious infections such as sepsis exist, clotting may result.
     * If the mother takes an illicit drug, like cocaine or heroin, a stroke, albeit needless, may occur.

For expectant mothers, if clotting disorders are part of your genetic history, tests can be done in-utero ahead of time to help the baby's outcome. All expectant mothers should eat nutritiously, stop cigarette smoking, and avoid dehydration.

Here's the bottom line: there’s not much research so far on how to treat strokes in children, including newborns and fetuses.

An excerpt from a blog, Raising Arizona Kids, tells one story of thousands:



"Chandra Whitfield, of Mesa, learned just a few months ago that her son, Joey, suffered a stroke in-utero.

At first, Joey was an easy going, happy, typical baby, welcomed by his parents and brother Daniel (3 ½).

But at around 8 weeks, Chandra began noticing a few things about Joey that seemed different from her experience the first time around with Daniel. She mentioned her concerns to Joey’s pediatrician at the next well check.

The doctor diagnosed Joey with tortocollis, which can occur while a baby grows in the womb if the muscles or blood supply to the fetus’ neck become injured.

He prescribed some stretching exercises and suggested that Chandra put toys on on Joey’s left side to encourage him to turn his head.

That helped, but at four months, Chandra begin to notice that Joey wasn’t reaching for toys with both hands- just his right hand.

At his six month well check, he still didn’t seem to be using his left arm and hand – and Chandra decided to trust her 'mommy gut' feeling that something wasn’t right.

She asked the pediatrician for a referral to a pediatric neurologist, just to rule out that anything was seriously wrong.

Finally, Chandra and her husband, Chris, received some tough news about their little boy.

Joey was diagnosed with left-sided hemiparesis (weakness on the left side of the body) due to a stroke in-utero. An MRI followed and confirmed the diagnosis.

Since the diagnosis, Chandra says she feels 'as if a fire has been ignited in me.' She began working to raise awareness about childhood stroke.

She and her family have walked in the Stroke Walk, a fundraising event.

She’s been selling purple awareness bracelets and donating the funds to the Children’s Hemiplegia and Stroke Association (CHASA), she’s got plans for a website, and volunteers for CHASA.

Chandra also sent a letter to Governor Jan Brewer requesting that May 7 be declared 'Childhood Stroke Awareness Day.' Here are Chandra and Joey on the day just a couple of weeks ago when they received the news that the request was granted, and more.

Arizona now joins several other states in declaring May as Childhood Stroke Awareness Month. CHASA hopes to build a grassroots effort to add more states to the list.



"Joey is a year old now and doing well. He works with a physical and occupational therapist to help strengthen his left side. The testing and therapy will continue, but so will Chandra’s will to get the word out to others to raise awareness—and to grow a community. Because what Chandra says has helped the most is the connection she’s made with other parents of children who have suffered stroke in-utero."

My God. Babies and strokes. It happens. And now you know.

Nov 18, 2012

Hurricane Sandy, Part 2, aka Has G-d Had Enough?

Tuesday, October 30.
We awake to the chill in the air. I knew I couldn't stay here and so did he. My nerves were frazzled because I had something like Post-Traumatic Stress Disorder (PTSD) from the storm. As a stroke survivor, I had some trouble going with the flow now, and I was near the end of my patience. But I tried my darned-ist not to say anything to my friend about the heat and lack of hot water. We were leaving anyway. And he had more problems than I did.

My friend went down to the basement to check for moisture, but he found more--15 inches of rain and sea water. His boiler, water heater, washer, and dryer among other things went south to hell. We had breakfast and, when the tide started retreating around 11 am, we went back to Philadelphia to stay in his mother's apartment who didn't live there anymore. She had died on Thursday.

We brought our computers, but in an assisted living facility, there was no need for Wi-Fi for the great majority of the people who lived there because they don't use computers. If someone wants to go online, they have a certain area where it's possible on the dining floor, but the Internet was out for awhile, I imagine because of the storm. I continued writing my blog. He watched television and we ate dinner at his sister's house two miles away, going over roads that were absolutely passable, and then returned to his mother's apartment for much needed sleep.

A side note on the sleep issue is there's much evidence that getting a good night's sleep--at least 7 hours--is so important for stroke survivors. But it's not uncommon for stroke survivors to have problems sleeping. Maybe they have an arm or leg muscle that quivers in a spasm (called "tone" in physical therapy jargon) or are kept awake with over-thinking the day. At least once a week, my muscles go into "tone" in the middle of the night and I am forced to get up and stretch. And wow, do I over-think. More than a few times, I got up at 3 am and thought until 7. Any stroke survivor could identify with these conditions.

But the really shocking news is that even if you have average weight and are healthy, and have normal readings in both blood pressure and cholesterol, sleeping less than six hours a night consistently could quadruple your risk of a stroke, according to a recent study at the University of Alabama. The extensive test was done on over 5,600 people, aged 45 and older. Researchers concluded that sleep is just as critical as diet and exercise. The reasons, say the researchers, is that deprivation of sleep can cause changes in the blood pressure, heart rate, and glucose levels, all critical factors that might possibly lead to a stroke if any one of those factors goes too high.

Wednesday, October 31.
The entries from here on out would be shorter. The storm and all the destruction left behind had passed.

My friend wanted to return to his house at the shore because standing water in the basement could spell disaster. So back we went sixty miles--again. We left the computers and our other belongings in his mother's apartment. He rented a pump along the way which operated on gasoline. When we arrived in the town next to his, his town was inaccessible because there was a breach in the water system, and back roads were not the answer. There was no doubt about it. New Jersey got hit hard by the hurricane. The police figured out almost all the ways someone could get in. We decided to go for a pizza dinner in the neighboring town and think, and after that, he figured out a way to get back to his house because the police didn't think of everything.  When you live in a place for sixty-four years, you just know.

When he went down to the basement, surprisingly, the water level diminished to four inches in a few places, seeping through the cracks in the floor, and simply wet in most places. But the pump didn't have a hose that was long enough to extricate the water and put it into the street which wasn't flooded anymore. The rest of the day was allotted to my thoughts, partly of G-d and how we were spared from the hurricane this time. But I still wondered, would next time be the last time? To put it simply, has G-d had enough?

We slept at home on Wednesday.

Thursday, November 1.
The power came to life just before noon, and I flipped a lot of switches needlessly, just to make sure it was really on in the whole house. My friend went back to Philadelphia to retrieve our belongings and bought a shop vac at Loews because the water level was manageable now. But on the border to his town, the police stopped him. They had finally figured out all the ways to enter his town. One of the cops said there's no law against walking. So he parked and got out of the car with the shop vac and all our belongings and walked the mile back to the house.

His sons came to help him clean out the soggy, moldy basement. The house was cold and damp, at least to me, because I take Coumadin which makes most of us who take it feel a lot colder than the temperature readings indicate.

In general, there's a lesson to be learned in everything that happens to us. Maybe for the next monster storm that hits us, we'll know the answer. Maybe it's just a wake-up call for us to get our heads out of our asses and evacuate. But just between you and me, after all was said and done, the storm was thrilling, especially because we lived to tell about it.

Nov 10, 2012

Hurricane Sandy, Part 1, aka Has G-d Had Enough?

The hurricane came on slowly, like a tiger stalking his prey. All I heard was the low wind, but then there's usually wind on the beach block of South Jersey's shoreline, especially in the downtime from fall to spring. The fall was over a third finished, but there it was: Hurricane Sandy.

Sunday, October 28.
My friend's mother died, and we had a graveside service at the shore where she lived for over fifty years. The wind was already blowing, but the gusts slowed down as if the wind wanted to pay its respect to his mother, too.

My friend motioned for me in my wheelchair to walk to the chairs the cemetery had set up for family members, but I sat on the edge of the crowd, not trusting myself on the uneven terrain, common to all cemeteries. (You may not have noticed because you don't walk in my shoes and you may not have had a stroke). The service ended a half hour later, and we all went back to his sister's house in Philadelphia which was sixty miles away for the after-gathering.

While in Philadelphia, a few people said that the bridges to the barrier islands, where we are from in New Jersey, would close down at 4 o'clock, so we left his sister's house at 2:45 in order to make the 4 pm deadline. It started to rain, and he took the Atlantic City Expressway, intending to go from Exit 44 to Exit 2, to make it back in time.

But near Exit 5, the police slowed us down by having one patrol car in each of the three lanes and, at Exit 5, the patrol cars stopped and another officer, who was standing in that wide-legged stance that only policemen and workout guys have, told us to turn around.

''She had a stroke," he said, pointing to me, "and I'm returning to the house to get her pills." It was no lie. I needed my Coumadin.

But the patrolman must have heard that excuse before, so he repeated himself. "You have to turn around."

My friend, who knew the back roads, went onto Exit 5 and kept going beyond where he should have gone. He took a circuitous route which took us close to his home, but we still had to go over the bridge. At 3:59 pm, he took the bridge which closed at 4 o'clock promptly. I know because we were the last car that was allowed to go over. The roads were empty and the town was ghost-like.

When we pulled up to his place, I saw and heard the roaring ocean from his house.

"The ocean looks dangerous," I said, "but the ride was thrilling." I know it sounds crazy, but you weren't there. Those two, diametrically opposed statements were both accurate. We went to bed early, him, because the funeral day was tiring, and me, because I love a storm when I'm safely inside and under the covers. But this storm was different, with strong winds at 75 mph that howled and moaned, and I was afraid the windows would break.

But before I slept, I thought about all the ways we had fucked up this world. Not me, specifically, but "me" as part of the world--wars, pollution, homelessness, hunger, the super PACs? I wondered, was G-d trying to give us a last warning? Was this flood representative of the last one, involving the Bible's Noah and the Ark? Was G-d even so tired of us that He decided to start over? Was this it, the east coast version of the Big One?

With so many questions to myself, asked and answered, I slept for 2 hours that night.

Monday, October 29.
We awakened to a flooded street. According to my friend, the last time the streets were flooded was in 1962 with a nor'easter that blew out the boardwalk. With Sandy, the sea water covered our driveway ramp and started to creep up to the bottom step of the entrance to his home. The storm was encroaching. We lost power, electric and gas, somewhere around 11 am. But we couldn't leave because we were trapped. So we sat in the house that day with nothing to do but stare at the flood or read a book when the light let us.

When I thought that I couldn't stand it any longer, I said, "We could microwave popcorn," I said, but he replied, "No power. Remember?"

A little while later, he said, "You could check your computer for the weather," but I replied, "I have no battery power left."

When it got dark, my friend made us dinner--the leftovers from the funeral food--and, being the ultimate saver, he used a flashlight to find a new headlamp that was a Christmas gift from nine years ago. He put the batteries in and I was a virtual miner, focusing the light on my head at the stairs to the bedroom. He led the way, with the light on the next step, and all the ones after, to guide me. When I reached the top, I moved toward the bed. He helped me into bed and, because I hadn't hardly slept the night before, I slept deeply.

Oct 25, 2012

Elliptical Timeline

There's an old joke: Call me anything, but please don't call me late for dinner. And please don't call me a hypocrite, either. Three days a week, I have done physical therapy at Rehab X, twelve times so far.

If you read my book, "The Tales of a Stroke Patient," though I said horrific things about my stay there for seven weeks, I didn't say one bad word about the physical therapists. So I was not being a hypocrite when I returned to Rehab X for physical therapy. That's a roundabout way of saying the physical therapists were the best, at least according to the sign they have plastered in the therapy window for winning the local newspaper's award.


Anyway, there were three parts to the routine that lasted for about an hour and was the same every time. First, I got stretched on the mat with the physical therapist helping me lift, spread, and bend my legs. My hamstrings, quadriceps, and ankles were challenged, and though it hurt, it was a good hurt. Next, I went on the elliptical, a cardio training machine that mirrors walking up the stairs and running, working large muscle groups, in my legs and one functional arm in a continuous movement.Finally, I used the parallel bars, with exercises like side-stepping and lifting my leg on the affected side as high as it would go.  My therapist gave me all her time, but occasionally, when the therapy center was crazy busy, the therapist at most had two patients.

I don't know how long she stretched me, but I got up off the mat and attempted to sit until my balance was restored. After about a minute, I walked over to the elliptical machine, taking a minute more. I noticed a pale, elderly man with plush, white hair sitting in a waiting-room-type chair with arms, next to me in the therapy room. His head was down as if he was sleeping. With the therapist's help, I sat down on the elliptical and I cycled for 14 minutes. I know it was 14 minutes because the elliptical machine had a timer.

I was unclear who noticed it first as I was getting off the elliptical and going to the parallel bars, the third part of my routine, but the elderly man was still sleeping, or so it seemed. I also don't know how long he was that way because he was upright in his chair. 

Two therapists went over to him and screamed his name to no avail.  My anxiety level went through the roof. Four doctors, three paramedics, the two therapists, and one nurse appeared which reminded me of the song, "The Twelve Days of Christmas." Four calling birds, three French hens, two turtle doves, and a partridge in a pear tree. Tra la la. That's how my mind works now, three and a half later. I'm all over the place.

Anyway, the therapist made a comment. "This happens way more times than it should," said my therapist, talking to me as if I was a confidante. Then catching herself, which I considered over-sharing, she said, "Let's concentrate on the parallel bars." But it was too late. My interest was piqued.

"How often does it happen? Once a week, once a month?" I asked. "And why does it happen 'way more times than it should,'" quoting the therapist. I was interrogating her as if she spilled the beans, which she had.

But that was all she said. She clammed up and started to lift her legs, demonstrating what she wanted me to do on the parallel bars.

The National Institute on Disability and Rehabilitation Research funded an article, written by Mark Sherer, Ph.D. and others, that said that unconscious people with no eye opening could be in a comatose state. Complete unconsciousness with some eye opening and wakefulness as well as sleep is called a vegetative state. So, according to that article, I was in a coma for 8 days when I had my stroke. Characteristics of someone in a coma include no eye-opening, unable to follow instructions, no speech or other forms of communication, and no purposeful movement. That was me.

"Mr. Smith" didn't look conscious, either, and I had no clue whether he was in a coma or had turned vegetative, but I didn't see his eyes open as long as he was in the room which was at least 14 minutes from the time he was noticed. Fortunately for him, Rehab X is connected to a hospital which is on the other side.

But I have questions. Did he a brain hemorrhage? A heart attack? Did he take more--or less--medication than he should? Wasn't anybody watching him? It was at least 14 minutes from the time I sat down on the elliptical that he was alone. Maybe the therapists all thought he was sleeping. But in light of the activity in the therapy room, that didn't seem logical. The paramedics transferred him to the gurney and "Mr. Smith" and the entourage left.

What if it was me with another stroke? Would anybody notice? For at least 14 minutes, he was there. The elliptical had timed it. But I had gone too far in my recovery to go backwards now. So I did the exercises that the therapist requested while concentrating on my anxiety which could be somewhat controlled if I set my mind to it.

When I returned to therapy the next time, with my mind working in a strange way again, I saw the empty chair, and I thought of Clint Eastwood.

For all those who didn't see the event when Mitt Romney was nominated by the Republican Party with accompanying hoopla,  Eastwood addressed an empty chair which was occupied, though not virtually, by Barack Obama, criticizing the President. Eastwood is a Republican. It was not his finest moment. Neither was it for "Mr. Smith."

Oct 9, 2012

The Cancer Scare

I was scared of anything medical, even way before the stroke. I waited 8 years to get a sinus operation, 10 years to get a colonoscopy, and 11 years to get hearing aids. Then I broke my shoulder in December, but my upper arm was still swollen five months later. And, of course, I was worried. Could it be blood clots again, this time in my arm, closer to my heart? So I decided, at last, to take action. Five months. I'm improving with age.

I went to the local imaging center in May, a chain that specializes in mostly MRIs, CT scans, ultrasounds, and X-rays. The technician scanned my arm with an ultrasound and told me that I didn't have clots. The doctor verified the result in a letter. But what no one told me was the technician went up too far and scanned my thyroid, too. A few weeks later, I got another letter, recommending a biopsy because my thyroid had eight nodules, seven of them too small to worry about. The eighth one gave the doctor concern. I made another appointment as soon as possible which translated into three weeks, but a little background first on cancer and biopsies.

Nodule. Carcinoma. Tumor. Malignancy. Lesion. I call it the "C word." But no matter what you call it, cancer is cancer. I thought I had it from all the X-rays and CT scans over the last three, stroke-related years. Today, after the smoking PSAs and warnings on the cigarette packs, and a lot of pink depicting Breast Cancer Awareness, more than a million cancer deaths have been avoided in two decades. Even so, there is still cancer.

The American Cancer Society says that cancer deaths in the U.S. continue to go down for lung, colon, breast,  and prostate cancers, which are responsible for most cancer deaths. However, some of the less common cancers have been on the increase in the past decade, including pancreas, liver, kidney, and thyroid cancer.


A biopsy, a sample of tissue taken from the suspected site, is done in order to scrutinize it more carefully. Biopsies are done when an initial reading suggests an area of tissue looks suspicious on an imaging test. Lest you think I am straying from the issue at hand, here's the reality: most often, biopsies are done to look for cancer.

So there I was, an uncomfortable stroke survivor, lying prone on a table and staring up at the ceiling, waiting for the biopsy to begin. I started to count the square tiles, count the lights, count the square tiles again. When the radiologist came into the examining room, as I was silently planning my funeral and after-party, the doctor showed me the needle (most commonly used on all biopsies) he would use to remove a small amount of thyroid tissue with the assistance of numbing medication and an ultrasound to identify the nodule.

"You will probably be sore after the biopsy, but the soreness should just last for a few days. Use an ice pack initially, 20 minutes on, 20 minutes off, and take Tylenol, and if the site becomes swollen and/or hot, you can call us at any time. A doctor is always on call," the radiologist said. "There will be three samples taken, one at  a time." I started planning the inheritance for each of the kids.

The biopsy was over in a few minutes and I took a nap when I arrived home. The pain that would "last a few days" lasted a week, with the intensity getting weaker every day. Mostly, I had a sore throat.

The radiologist sent me a report of the findings in another two weeks, and all it said was "abnormal tissue." The report also recommended a biopsy again in three months. So, of course, I wanted a second opinion. A doctor friend recommended an otolaryngologist who specialized in thyroids. So I went to see him. The "oto" recommended Veracyte, a thyroid testing company, that goes the extra mile to test the sample completely. The sample was sent to San Francisco where Veracyte is based, the land of the "Big One," (referring to an earthquake forecast recently for the San Andreas fault that could end up being bigger than earthquake experts previously thought).

According to the Veracyte literature, the test "measures the amount of activity of 142 genes in the thyroid nodule...to be performed only when cytopathology (the examination of cells used to diagnose nodules) is indeterminate." "Abnormal cells," the diagnosis on the first report, was about to get a re-do.

Three months later, I went to get another biopsy, this time with four samples, and again one at a time. The biopsy, like the other one, took a few minutes. I knew the drill by now. Ice pack on and off, Tylenol, nap, and the sore throat for a week. The results letter arrived two weeks later. I was glad the "Big One" didn't hit yet. The letter said that no evidence of cancer was found because the nodule was benign.

Look at all the time I wasted, worrying about thyroid cancer. Three weeks to the first biopsy, then three months to the second biopsy, and then two weeks longer for the results to come. I couldn't get the time back, but once again, a lesson learned: don't worry until you know.

I think I need a root canal. No more delaying, I decided. I'm going in four months--tops.

Oct 1, 2012

Where the heck is the blog, "The Tales of a Stroke Patient"?

By now, the thought has probably occurred to you: Where the heck is the blog, "The Tales of a Stroke Patient"? I mean, what's going on here? Permit me to tell you about the last 3 weeks.

I turned the posts into a book. There were so many corrections, book cover design requests, and layout questions, it felt like I was on deadline every day. It felt that way because it was true, and being on deadline took me back to when I was working for the newspaper, to my television news writing job, and everybody who said, "I want it now!" For so long, I wished for work and that wish finally came true.

Thank you, Xlibris, for doing such a great job on my book. And thanks for the deadlines. I'll resume writing the blog shortly.
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You can buy the paperback version at http://bookstore.xlibris.com/Products/SKU-0115053049/The-Tales-of-a-Stroke-Patient.aspx

You can buy the Kindle (Amazon) version at http://www.amazon.com/The-Tales-Stroke-Patient-ebook/dp/B009J9QC64/ref=sr_1_2?ie=UTF8&qid=1349018197&sr=8-2&keywords=the+tales+of+a+stroke+Patient