Joyce Hoffman's 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. 

Postnote: The situation took a turn. http://stroketales.blogspot.com/2014_07_03_archive.html 

If You Squeeze Them One More Time, I May Hurt You.

Men basically have two things to worry about: erectile dysfunction (yes, ED has an awareness platform, too) and the prospect of prostrate cancer. But most men don't know what it takes to be a woman because they've never walked our mile. 

Permit me to elaborate: wearing a clumsy pad or a Tampon that was pushed up too far while our 30+-year period continues to flow; achieving pregnancy with bipolar-ish hormones; using itchy make-up, because it was the best buy, that was not tested on animals; losing our diaphragms somewhere, somehow, inside our bodies; experiencing the annual pap smear that will tell you if uterine cancer is in the cards; and, my personal favorite, getting a mammogram, especially after my stroke.

A mammogram is a bitch. Millions of women, including me, have to get a mammogram every year to detect, primarily, cancer and other breast disorders. A mammography exam is a type of imaging that uses an x-ray, the low-dose type, to examine the breasts, called a mammogram, which is used to aid in the early detection and diagnosis of breast diseases in women. Other machines exist to capture the breasts' images, but an x-ray is the most popular. If the doctor suspects a problem, you might use another method of scanning the breasts, like an ultrasound.

Mammography plays a central part in early detection of breast cancers because it can show changes in the breast up to two years before a patient or physician can detect lumps. Currently, many associations, like the American Cancer Society, the American Medical Association, the U.S. Department of Health and Human Services, and the American College of Radiology, recommend a mammography annually, starting at age 40, when women are most likely to receive the best form of treatment if any cancer is seen. Women who have had breast cancer at a younger age, or who have breast cancer in their genetic history, could have a mammogram sooner than 40, according to the National Cancer Institute.

Here's where the rules come in.

--Your mammogram should not be given the week before your period, if you're regular or not, when your breasts are sensitive.
--If you suspect pregnancy, tell your doctor or x-ray technologist because your breasts may be too tender to handle.
--If the screening place is a new one, gather prior mammograms and make them available to the radiologist. If your screenings are done in the same place, the radiologists should have them there. Asking doesn't hurt.
--Wearing deodorant, lotion, or powder on the day of your mammogram could show up as calcium spots, not a good thing, so risk smelling foul for one day.
--If you don't hear from your doctor or the mammography site, don't assume the best. Call after one week. Possibly, and likely, someone screwed up in informing you..

In the mammography process, a technologist will put your breasts, one at a time, on a platform, compressing them with a paddle, commonly made of clear Plexiglas. Compression is necessary to put the breasts flat, to spread out the breast tissues to scan as much of the breasts as possible, and to hold the breasts still while holding your breath to not make the pictures a good waste of time.

Breast implants can also make mammograms difficult to read because both silicone and saline implants are not transparent on x-rays. But trained technologists and radiologists know how to compress the breasts to make the view successful without rupturing the implant. (Squish? Just sayin'). Also, a small portion of mammograms show that cancer exists when it is really not there, known as a false-positive result.

The mammography is performed on an outpatient basis and it's a 30-minute process, tops.

In my case, having a stroke didn't have much to do with my mammogram except for one thing: my one breast hung down lower than the other because of my sub-luxed shoulder which happened from the stroke. In layman's terms, the shoulder muscle was detached from what used to be the ball and socket configuration. So the scan was harder to accomplish. The customary views are right breast, top to bottom, and an angled view, and the same with the left breast. Though the technologist had a routine by always starting with the right breast, she did the opposite.

"I'll x-ray your left breast first, then the right. I'm breaking my routine since I always start with the right breast. But it's going to be harder to x-ray the right. I'm a creature of habit. First right, then left. Right, left. But on you? Left, then right."

Is there a phrase that's stronger than "shut up"? Fuck you, maybe? I didn't know how to deal with this "Chatty Cathy," but I started to count. Counting always calms me.

The technologist squeezed my breasts with the compression paddle on each of the four views, and then walked behind a wall while each picture was being taken, not wanting to expose herself to radiation. I used all my restraint to avoid the obvious ouch, owww, and a few choice words, saved for occasions like this one.

I was hurting after the mammogram, while the technologist spoke again after she was finished.

"I want to see if the pictures came out. I'll be back. And I want to see if the sides are labeled correctly. I usually start with the right, but in your case, I started with the left breast, saving the worst for last."

That's the second time she said that she usually started with the right. And the worst? For last? The technologist didn't know when enough was enough.

I was all finished dressing myself when the technologist returned and said the pictures were fine.

"I see you've dressed yourself before you knew whether I'd have to re-take one of the images. You must be in a hurry to leave." In the scheme of things, fighting the really tough battles, this wasn't one of them. I only smiled. And I'm proud of myself. For once, I knew when to shut my mouth, not to say something I would regret later. But if I had to repeat the scan, I wouldn't know what I'd do. Jab her with my cane? Maybe. But everybody forgives a stroke survivor.

About two weeks later, I received a letter from the office that did my mammogram. It said, once again, that my mammogram was normal which made me happy, until next year when I'd go through "the squeeze" again. Maybe I'll start counting the days.

I Was MAFO'ed

Do you recognize this script?

Mr. McQuire: Ben.
Ben: Mr. McQuire.
Mr. McQuire: Come on with me for a minute. I want to talk to you.
A woman: Excuses, John.

(Mr McQuire and Ben step away from the crowded room).

Mr. McQuire: I just want to say one word to you, just one word.
Ben: Yes, sir.
Mr. McQuire: Are you listening?
Ben: Yes I am.
Mr. McQuire: Plastics.
Ben: Exactly how do you mean?
Mr. McQuire: There is a great future in plastics. Think about it. Will you think about it?
Ben: Yes, I will.

The 1967 script was from a scene in "The Graduate" starring Anne Bancroft and Dustin Hoffman (no relation). I love that movie because it's about "coming of age" and, of course, you-know-what. That movie made me think of the MAFO.

What does MAFO stand for? You have three guesses. Is it a) Muslim-Americans for Obama, b) Midwest Association of Farmworker Organizations, or c) Molded Ankle-Foot Orthotic? Of course, you know! I gave you a great hint with that script. Plus, as is this is neither a political or farming blog, it must be "c"--Molded Ankle-Foot Orthotic. But some of you don't know what an "orthotic" is. That's why I'm here, to explain it to you. For those of you who do know, bear with me. We've come to background time.

A MAFO, generally known as an ankle-foot "orthotic," is a molded, plastic, supportive aid to the upper or lower limb that makes improved movement do-able. People who make orthotics are called orthotists. Orthotics, coming the Greek word to straighten or align, is a specialty within the medical field concerned with the creation, manufacture, and application of the aids. The acronyms started in the 70s to define in which sub-specialties the orthotist functioned, like MAFO, TLSO that stands for thoracolumbosacral orthotics for conditions like scoliosis, and WHO which represents wrist-hand orthotics, just to name a few.

Foot drop (dropped foot and foot drop are interchangeable terms), what I have, is a symptom of the greater problem, not a disease in itself, characterized by the inability, or sometimes difficulty, in moving the ankle and toes upward. The dropped foot can range from a temporary loss to a permanent condition, all depending on the muscle weakness or, at worst, paralysis. Foot drop can be caused by spinal nerve trauma, an anatomy anomaly, toxins like lead or mercury poisoning, disease, or nerve damage.

My foot drop was caused by the nerve damage when I had the stroke, specifically to the peroneal nerve, the one that broadcasts to the muscles to lift the foot, and that nerve wasn't working. The classic foot drop is characterized by dragging one's toes along the ground. To accommodate patients whereby they lift their foot higher than usual to avoid dragging, they should wear a MAFO, which raises the foot high enough to prevent the toes from dragging.

Functional electrical stimulation (FES) using electrical currents to activate the nerve is an option for some, depending to what degree the nerve damage is. But if the nerve is dead, like in many stroke patients, a MAFO is the best and only bet. Wearing a MAFO causes a person to lift the foot in a process called dorsiflexion. A cuff is placed around the patient's ankle, and another one higher up under the knee, causing the patient to lift up the shoe when walking.

Ten weeks after my stroke, I had a MAFO, and still do. And now begins the MAFO story.

When I came home from the four nursing places I had been, I was wearing the MAFO. Some people asked me if I took it off, once in a while during the day, but they didn't know what you know now, that I couldn't take it off. Foot drop is foot drop. There's no way around it barring a miracle. Miracles are hard to come by. Winning a lottery is easier.

When I got home from the nursing fiasco, I noticed some red marks on my foot, even though the MAFO has to be worn with a high sock, high enough to cover the brace. Being the A-type that I am, I saved the orthotist's card when I met him at Rehab Y and called him to make me a new MAFO, or adjust the old one. He came to the house, wearing a suit (he was a proper kind of guy) and got to work with his apprentice. The two of them were using saws, sanders, and pliers (at least they resembled them) on my MAFO in the kitchen, and when they were finished, I was good to go.

But my foot was swollen after I came home from Rehab Y (I must have been retaining fluids), and in three months, the MAFO was too loose for my foot, risking a fall. So the orthotist came back again and fit a new one while I waited in the living room. This time, to my epic dismay, he decorated it with flowers on the whole back side of the MAFO. It was really silly and child-like. Why would he decorate the MAFO? I mean, why? So I asked him.

"What's with the flowers? I use the MAFO because I have to. If it was for a small kid...."

"I know. I know. I thought you'd like the flowers." I saw his jaw twitch, but he didn't say anything nasty. He was too dignified. He twitched his jaw again. "I can't remove them because the flowers were put on with permanent markers. So keep this MAFO and I'll have to make you a new one--plain, this time."

He returned a week later with the plain one, and since he had measurements from the second one, the MAFO was already prepared.

It was now Fall. I went through the seasons and Summer came, but the MAFO got too hot in the sun, even with the socks. I felt like a wet noodle. I called the orthotist back, but I didn't want a new one since the MAFO fit fine.

"The MAFO is unbearable. It's just too friggin' hot." The orthotist was so distinguished so I cut him a break by not using the "f" word. Even so, the jaw twitching was still there.

"I have an idea which I've never done before. I'll drill a series of pinholes over the whole thing so it can release the heat somewhat. Let's try it. It can't hurt," said the orthotist.

And so he did, and when I put it on and went outside, I was cooler after he drilled the holes. I started to feel rotten about the flower decorations that he applied with good intentions but great about the pinholes. And great about molded plastic. Mr. McQuire was right on. There was a great future in plastics.

The Top Ten Things You Should Never Say or Do to a Stroke Patient

People are funny, and I don't mean in a ha-ha sort of way. They could be neurotic, bi-polar, obsessive-compulsive, anxious, or agoraphobic, just to name a few types. Some of the ones who came to visit me had their own type: dysfunctional-when-meeting-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 ever, 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 whose 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.

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.

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?

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?

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!

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!

Completing your 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 blank. WAIT! I'LL GET IT!

Giving me lists of things to do

If you give me a list 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?

Ignoring me as if I'm invisible

Once in a while, 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. Covered in the previous post The First Phone Call, aka What Should We Do About Outsourcing?, "FOR CHRISTSAKE, I HAD A F***ING STROKE. GIMME A BREAK!" (Sorry to all in the PC crowd).   

Saying I'm not moving fast enough

Once in a while, 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?

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?

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Now that I've off-handedly offended most of you, remember--I said or did the same things myself to stroke patients because I never "walked in their shoes." So now, do you feel better?