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.
------------------
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

Sep 21, 2012

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 


Sep 4, 2012

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.

Mar 20, 2012

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.