Category Archives: The Tales of a Stroke Patient

Something REALLY New to Help Stroke Survivors

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 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.

subluxation sling

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, have a subluxed shoulder, go to this site:

Scroll down to the bottom and that’s where you can buy the sling.

Even though I had my stroke 3 1/2 years ago, Robert, who communicates through the therapist, says it might help me restore my arm somewhat. My sling arrived today and I’ll report back to you in three months how it’s working out. As I often say, stay tuned!

*Editor’s note: Joyce has been using the sling for over a month now and says she is pain free!

Babies and Strokes

Babies and Strokes

Image of a brain bleed caused by a stroke in a baby.

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 an exchange blood transfusion where 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.

Baby Joey
Baby Joey

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.

Chandra and Joey Whitfield

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.

The Cancer Scare

The Cancer Scare

I was scared of anything medical, even way before the stroke. I waited eleven years to get a sinus operation, ten years to get a colonoscopy, and eight 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 dubious 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, for example. 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.

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

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

There has to be a better way

Men basically have two things to worry about: erectile dysfunction and the prospect of prostrate cancer. Big deal. 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 run through our veins; 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 best, 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. Right, left. But on you? left, then right.”

Is there a phrase that’s stronger than “shut up?” F*%! 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, ooow, 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.”

I was going to say something, but 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. Heh, heh.

About two weeks later, I received a letter from the place 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. Sigh.

Strokes: False Facts and a Quiz

Strokes: False Facts and a Quiz

By now, so many months later, I’ve heard mostly everything that has been said about strokes, including upsetting rumors, dreadful untruths, and uplifting myths. Let’s take these issues one at a time. The comments in parentheses are mine. I’ll give you examples, too, even though it’s sort of painful to do so. But, hey. I’m…Continue Reading

The Hospital Gown: Misguided and Malfunctioned

The Hospital Gown: Misguided and Malfunctioned

Country Music icon Trace Adkins sang “Honky Tonk Badonkadonk” at the Grand Ole Opry when I was in Nashville about a decade ago. The music was hot, but the lyrics left me wondering about Trace: It’s so hard not to stare At that honky tonk badonkadonk Keepin’ perfect rhythm Make ya wanna swing along Got…Continue Reading

ALERT: A Voyeur in the Nursing Home

I always wonder about people who do odd, compulsive things. Take voyeurism, for example. Voyeurism is French meaning “one who looks.” In popular wisdom, voyeurism occurs when somebody views or photographs or films others without their awareness. In common vernacular, voyeurism can be defined as “a peeping Tom.” Now for some trivia on a non-trivial…Continue Reading