Wheelchairs and Stroke Survivors, aka Talk to Me When You're Talking to Me

China had the first-recorded wheelchair in the 6th century, made of plant reeds and iron wheels, and then Spain, Germany, and England later, ably transported, mostly through wars, the disabled by other wheelchair materials. Many centuries later in the 1700s, in Bath, England, the most popular wheelchair, albeit cumbersome, looked like this: 
 

Now we have this: 

 

Look how far we've come. But I'm here to talk about wheelchairs in a different capacity.

 

There are two Mark Zupan's. There is Mark Zupan, the famous dean of the University of Rochester's Simon School of Business, but I'm talking about the other Mark Zupan, who earned a soccer scholarship to Florida Atlantic University. 

 

Mark Zupan

A football and soccer star in high school, and after a soccer game in '93, when he was 18 years young, Zupan got buzzed at a bar along with some of his soccer team and fell asleep in the back of his friend's truck. His friend, driving drunk, went off the road and Zupan landed in the canal, clinging to a branch for almost 15 hours, resulting in hypothermia and, ultimately, to quadriplegia.  

 

Even though he stands and walks short distances, Zupan ended up in a wheelchair for life and became a quad rugby champion twice. Zupan went on to become a TV and movie personality, appearing many times as "the guy in the wheelchair."  

 

Zupan's autobiography, "GIMP: When Life Deals You a Crappy Hand, You Can Fold---or You Can Play" and his notable championships make him famous.

But to me, he is most famous for his words: "We're normal people," says Zupan. "Don't be scared because we are in a chair. People don't understand that. They think, 'Oh, a wheelchair, something's wrong with their heads, something's just not right.' Well yeah, we may be a little twisted, but no more than anyone else." And there it is: "no more than anyone else." 

Maybe it's only me, feeling diminished by the wheelchair. I can stand and walk with a quad cane so sometimes, when I'm in the wheelchair, I raise the leg rests and stand so I'm on the same plain as everybody else. I'll explain.
 
When I go to a doctor or a store and I have a lot of walking to do, I'll go in the wheelchair, of course with a friend because I can't drive (seizures in the first year, and this is my 6th, but still...). The doctor or the salesperson always addresses my friend, like, as Zupan says, they think "something's wrong" with my head.

I was almost to the point, many times, of telling them "to look the fuck at me." But I didn't. Except one time. I was, to use on old expression, at my wit's end.

Kristin C, working with the elderly, says in an email, when looking at somebody in a wheelchair: "I think we can only learn this from exposure to [the wheelchair]. If we all realize that it is the person in the wheelchair who counts, and not the wheelchair, and actually look at the person, we will get better at it from practicing it."

But how many people do that? 10 percent? Less? Fuck. Not many at all.

Now I have a new line, much more genteel, to redirect attention back to me: "Talk to me when you're talking to me." You can use it for the doctor or salesperson. If asked, say you just thought of it. Don't say you read it somewhere. Don't give me credit. Just use it. And it works every time.

For Immediate Attention: An Email Just Received

I just received an email from Douglas Lowell, President of Find a Cure Panel for debilitating diseases including stroke. Here is what he said:

Subject line: Cryptogenic stroke (which is known as a stroke of unknown cause) qualitative research
 
Find a Cure Panel specializes in patient research for rare and serious diseases and conditions including strokes.
 
Douglas Lowell says, "Patients who have no idea what caused the stroke and the doctor lists 15 reasons but can’t settle on one, and nobody agrees…that’s cryptogenic and as long as they do not have AFIB, then they qualify."


In the next few weeks, FACP has some patient and caregiver research for people who have suffered a cryptogenic stroke (which is also known as a stroke of unknown cause) but have NOT been diagnosed with AFIB.
 
It’s very easy to participate. It’s one confidential and anonymous call with one moderator talking about your experience. FACP gives you a 1800 number to call in and schedule the call at your convenience.
 
To qualify:
1) You must live in the US;
 
2) You must have suffered a cryptogenic stroke (stroke of unknown cause)
 
3) You must be over the age of 50
 
4) You must NOT have an implanted cardiac device (ie. Monitor or pacemaker)
 
5) You must NOT have been diagnosed with AFIB
 
6) Must NOT be using Veteran’s insurance.
 
If you do the call, FACP will donate $100 to a non profit of respondent choice.

If you are interested in participating, please email us at info@findacurepanel.com and reference cryptogenic stroke.
------------

As my grandmother used to say in her broken English, "Oy. It couldn't hurt."

10 Things I Learned About Living as a Stroke Survivor

I live a life of peacefulness. I'm not rich and don't want to be. I am a Goodwill addict. And I've never accepted the stroke fully, but I'm close, getting to recognize that I am competing with myself--one more step to climb, yet another minute on the bike, an additional hour standing.

I have solitude now, but I'm not lonely. When it's quiet in my apartment, I am thinking all the time--of this blog, another book to read, another book to write. And the ten things I learned about living as a stroke survivor. Here they are:

1.  I find people staring at me, like an oddity of sorts among the "normals." I used to return their stare, angry and maniacal, but now, I like myself enough to not care.

2.  I'm worthwhile, making a contribution, albeit small, to society at large, by giving my knowledge about strokes to anybody who affords me the opportunity to speak. There is always a stroke group who loves to hear the stories behind a stroke survivorship.

3.  I pursue my love of reading to keep my brain at optimum level. If my eyes tire and can't read the words on the page, I use audiotapes.

4.  I always use the computer since I am a writer. But you don't have to be a writer to stay in touch with the world via the computer, with CNN or Google news, for example. My iPhone and my iPad do the same thing. 

5.  The last cry for help was the last. Having Life Alert, a direct connection to the emergency crew by pushing a button on a necklace that's always around my neck, makes me and my sons more comfortable. The cell phone, if it's charged, works the same by calling "911." (The operative word is "charged"!)

6.  Most of my falls were in my kitchen. But now, I bought a used wheelchair and a new cushion that I keep in my kitchen to prevent falling--sit, retrieve, and stand.

7.  I speak from the gut now to medical professionals, telling them, for example, if they missed a question on the "new patient" form or if they don't let me finish my thought, always preceded by, "With all due respect...."

8.  I like to be organized to simplify my life and to accommodate all my OCD (which many stroke survivors have) tendencies. So I have a file cabinet and a desk which I bought at Goodwill for $15.

9.  I set the alarm on my iPhone when I have to take medication by speaking to Siri, the intelligent personal assistant that comes with Apple products. It takes the guesswork out of remembering. I also set the alarm to keep from napping longer to avoid insomnia at night.

10. I live each day with appreciation for the love of my sons, their respective significant others, and the friends I have obtained coast-to-coast in America and around the world.

As I say in the intro to the blog, "I don't embrace the stroke -- not now, not ever -- but I accept it because I have two options: live with the stroke or... well, you know the alternative." 

I am here, alive, and trying my damnedest to keep it that way for a long time.

The Relationship Between Surgical Procedures and Blood Clots

Wake-up time. If you're going to have surgery in the near or distant future, please read this post. As common, a little history first.  

Blood clot

Blood clots are a solemn reminder of just how fragile the human body is. Blood clots usually appear in your legs and are called deep vein thrombosis (DVT), the most common type of blood clot after surgery. They typically remain in the legs, but can break free and begin to move through the blood stream, like to the lungs or brain, known as an embolism. I had two blood clot experiences as a stroke survivor, and with both, the hospital kept me for a week each time. You might think that doctors and nurses are obsessed by blood clots, but this event is serious business. And the obsession is valid.

Blood clots can lead to a stroke, another name for an embolism that travels to the brain. Strokes can result in long-term disabilities including slurred speech, an inability to speak, one-sided weakness, and facial drooping, for example. 

Pulmonary embolism

A pulmonary embolism means one clot landed up in your lungs, causing possible pain and severe shortness of breath, resulting in death for 30%.   

Clots are often associated with surgery. The reason is, the person is lying still during the procedure and potentially for many hours post-surgery. (Blood clots, as mentioned in my blog, can also form when an person is motionless for long periods of time, such as during airplane ride a long car trip. http://stroketales.blogspot.com/search?updated-min=2013-07-01T00:00:00-04:00&updated-max=2013-08-01T00:00:00-04:00&max-results=2)

The type of surgery you are having can also increase the risk of having blood clots after the procedure. If your surgery requires your arteries, veins, or tendons to be cut or repaired, the risk of a blood clot is higher because your body works to stop bleeding by forming clots. 

The risk factors for blood clots both during and after surgery may include:

• History of Blood Clots: If you have had a blood clot in the past, your are more likely to have one in the future.  
• Genetics: If your family is prone to clots, you may be, too. 
• Atrial Fibrillation: Patients with an irregular heart beat have an increased risk of forming blood clots.
• Pregnancy: The chance of blood clots increase as the body makes blood clot faster in preparation for child birth.
• Cancer: Some types of cancer make blood clot more easily.
• Hormone Replacement Therapy (HRT): One known side effect of HRT is the increased risk of forming blood clots.
• Obesity
• Smoking
• Prolonged Immobility which include the time during anesthesia and recovering
• Heart Valve Issues people with replacement heart valves or heart valve problems have a higher risk of forming clots that can then travel to the lungs or brain.

After surgery, if you are able, get up and move during your recovery, one of the ways to prevent blood clots. Staying well hydrated by drinking ample amounts of water can also reduce your risk of forming clots, too.  


One treatment for blood clots post surgery is heparin, a medication that is given by injection or by IV to prevent the formation of clots, to reduce the clots that already formed, or to keep the blood clots from getting larger. Another is Coumadin, or the generic Warfarin, given to help the body remove a clot from the bloodstream.

In cases where there is a high risk of the clot moving to the lungs or brain, especially after surgery, a device called an inferior vena cava filter (or Greenfield Filter) may be placed, which acts like a tiny porous vessel, catching clots before they can damage the lungs or brain. A small incision in the groin or neck is how the filter is put into place in the inferior vena cava. But the blood clots can break off and go to your lungs or brain anyway. That is how I had a pulmonary embolism. The filter can catch all, but sometimes not everything.

So you really have to hope for the best because the cold truth is, you never know what's gonna bite you in the ass next.

Walmart--A Convenient Place to Shop, Unless You're a Shoplifter

As a stroke survivor, I always feel vulnerable. I can't escape  from danger because I can't run away--from a fire, a mugging, or even a bee attack, for instance. As a result, I evoke unsolicited drama wherever I go. So it's time to tell you the story of when we went to Walmart.

Walmart, especially the super-sized ones, is the place you go when you need a variety of things, a consolidation of the trips you would have taken to the grocery store, the hardware emporium, and the plant shop, for example.

A couple of days ago, I (in my wheelchair because sometimes the scooters are wet from I-don't-know-what but I can take a guess) and my friend went to Walmart wearing casual clothing--the two of us in jeans and hoodies (my hoodie comes into play later on)--to shop for a bag of romaine, light bulbs, and a plant not requiring much of anything, like water and sunlight. But every time I go there, I get what's on the list and a slew of more items. Every time. Good marketing, I imagine.

Anyway, I also picked up an avocado and a box of tomatoes that an AARP article nudged me to do, a sun hat (which I didn't at all need), flip-flops for the future even though I still have an AFO, an extra extra jar of Musselman's  applesauce, just-in-case, that I use for taking my pills, a can of Pledge, two dust cloths (that are related to the Pledge), and two plants in case one of them dropped dead on the ride home. I also picked up batteries for my MP3 player that I use for exercising. My friend picked up a plastic container of Hershey's syrup that her son loved for chocolate milk.

The ride through the store was a hard one, going down every aisle in case I missed something, especially the sale items which Walmart calls "rollbacks." After a while, I couldn't carry the things on my lap anymore, after dropping the Hershey's syrup and Pledge three times. So my friend put the dropped items in my hood and we went to the cashier to check out. I got the receipt and attempted to exit the store.

However, I was in a high-anxiety state when extraordinarily loud alarm bells and buzzers started going off simultaneously. Soon, two beefy security men appeared. My friend (soon to be not) forgot to take out the Hershey's syrup and Pledge from my hood unknowingly. Really. Unknowingly! Evidently, Walmart has cameras, or security people watching from above.

Could it just prove my theory: You never know what will bite you in the ass next? I closed my eyes, expecting the worse, thinking to myself in the wheelchair, "Where am I exactly going? Could I run away? NO way!" My friend was standing alongside me.

"You have something in your hood," one of the guards said to me. It wasn't the time for jokes, but actually I had two things in my hood.

"Oh? I didn't know," I replied with all the self-righteousness I could muster. And I didn't know. She and I forgot about the allegedly stolen items. Because that's what they were. Allegedly stolen. Good thing the guards stopped us inside the store. I don't want to even think about what could've happened if we were outside the store.

I offered to pay for them and the two guards were looking at us skeptically with we-don't-give-away-free-stuff-at-Walmart expressions. Not a word from the guards any more. Without looking back, we just turned around, went to a cashier, and paid--me for the Pledge and her for the Hershey's. 

We didn't say a word during the long drive home. I was proud of myself for not saying, "She did it. It was her fault." And she was probably saying to herself, "Why do I even work for this woman." 

I found this article the next day on the computer:

Fort Lee, FL--A security guard at a Fort Myers Walmart was caught on video tackling a suspected shoplifter and holding her down. That employee has since been fired for how he handled the situation.

That worker told investigators he tried to stop them and they took off running. That's when he tackled them.

If that's the way Walmart's security guards were trained, were we lucky in retrospect? Absolutely!

Falls and Stroke Survivors: 5 Studies in 5 Continents, and 5 of My Tips for Preventing Falls

I'm out of the hospital. The reason I was in there at all for two weeks is because of blood clots--in my leg (DVT) and lung (pulmonary embolism, PE as an acronym). 

No matter what you call it, I feel like a ticking time bomb, never knowing if the time will come where another clot ultimately goes to my brain, and it's lights out--permanently. The docs assured me that wouldn't happen, but who knows? It's just the docs' educated guesses, one after another. I have an educated guess, too. I may be fucked.

A stroke survivor

So to take my mind off death, for the moment, I started to research falls as related to stroke survivors. Between 40 to 70% of stroke survivors worldwide have serious falls within a year of their stroke. I had many falls, most my own fault out of chancy stupidity and a few not. Here's some of my favorite findings, from 5 of the 7 continents. South America has an excuse. (And is anybody even living in Antarctica?) All continents used international and certifiable scales as related to stroke survivors and the falls they encountered.



NORTH AMERICA
 
Focus: Improving walking and reducing falls post-stroke

Background: California researchers understood that better comprehension of falls was imperative, as broken bones, hips the most common, and head trauma might be the result. 

So ambulatory stroke survivors were enrolled in Locomotor Experience Applied Post Stroke (LEAPS) and were assessed 2 months post-stroke. Falls were assessed for 12 months post-stroke and participants were characterized as: multiple or injurious (M/I); single, non-injurious (S/NI); or non-fallers. 

Results: The results were alarming. Among the 408 participants, 36%  were M/I, 21% S/NI, and 43% non-fallers. A majority of falls occurred at home in the first 3 months. Although multiple fallers are not at higher risk for injury for any given fall, cumulative injury risk increases with each fall. Thus, falls prediction and management for individuals post-stroke should focus on multiple falls.

A primary goal of stroke rehabilitation is to improve individuals’ mobility in the presence of motor, balance, and visual-spatial deficits. Yet, increasing mobility and physical activity increases exposure to fall risks. A review of exercise in older people strongly implies that strength and balance exercises reduce falls, whereas walking training alone may increase them.

Participants were assigned to one of three groups:
* a locomotor training program (LTP) that included use of the treadmill followed by walking practice 2 months post-stroke
* a progressive strength and balance exercise program provided by a physical therapist in the home started 2 months post-stroke.  
* late LTP, 6-months post-stroke

Each program was provided for 36 sessions over 16 weeks and was monitored between 2 and 12 months post-stroke. The researchers defined a fall as, “A person has a fall if they end up on the ground or floor when they did not expect to. Most often a fall starts while a person is on their feet, but a fall could also start from a chair or bed. If a person ends up on the ground, either on their knees, their belly, their side, their bottom, or their back, they have had a fall."

Of individuals who fell, 74% had at least one fall from which they could not get up independently. Fall rate per person year was 1.76 overall, 1.33 for moderately impaired walkers, and 2.13 for severely impaired walkers. But here's the thing: Of the three groups, there was no difference in overall fall incidence between 2 and 12 months post-stroke. And between 2 and 6-months post-stroke, both groups receiving early intervention had a higher fall rate than individuals in the late-LTP group. Over-confidence, the researchers theorized.

AUSTRALIA
 

Focus: Falls in older adults with strokes

Background: This Australian study aimed at two things: probe the  differences in the incidence of falls between chronic stroke subjects and matched non-stroke subjects who were 65 years or older and community dwellers, and establishing factors associated with falling with chronic stroke survivors.

Results: More stroke survivors reported falling in the previous twelve months after the stroke than non-stroke subjects (36% vs 24%). When comparing stroke survivors who fell to stroke survivors without any falls, the first group were more likely to report to have difficulty in stooping or kneeling, getting up in the night to urinate more than once, and having a greater problem with activities that involved hygiene, that is, bathing or showering.

 

 

ASIA

 

Focus: Risk factors and management in stroke survivors who have fallen

 

Background: Israeli researchers found that falls are common events among hospital inpatients and constitute a major health problem in rehabilitation. Many risk factors for stroke falls such as muscle weakness, hypotension, and medication side effects have been identified.

Results: In a 5-year study of 56 falls in 41 stroke patients hospitalized for rehabilitation, 30 patients fell once, 9 patients twice and 2 patients four times, obtained from the medical and nursing records.
 

Most falls occurred among male patients who had reduced muscular tone (70%), paralysis (54%) and/or hemiparesis (one-sided body weakness). In addition, 48% percent of the falls occurring during the first month, 70% during the morning or the afternoon, and 62% occurred close to the patient's bed.
 

Also, 89% of stroke survivors' falls were attributed to medication side effects, 29% to communication disorders, 21% to blindness, and 18% visual sensory disorders.


EUROPE

Focus: Patient Falls in Stroke Rehabilitation

Background: Falling is a major complication in stroke rehabilitation. This study intends to investigate the incidence, characteristics, and consequences of falls in an in-patient stroke rehabilitation setting.

Precisely 161 patients were admitted to a geriatric stroke rehabilitation unit. Falls that occurred during their stay were registered and analyzed. The study was performed at the stroke rehabilitation unit of the geriatric clinic at Umeå University Hospital, Sweden. This unit is a 24-bed ward that specializes in stroke care and rehabilitation; patients are usually admitted from acute-care clinics 2 to 4 weeks after their strokes.

Results: 62 of the patients (39%) suffered falls. The total number of falls was 153, which corresponds to an incidence rate of 159 falls per 10,000 patient days. Most falls occurred during transfers or from sitting in a wheelchair or on some other kind of furniture. 17 falls (11%) were classified as the result of extrinsic mechanisms, 49 (32%) were intrinsic falls, 39 (25%) occurred in a sitting or lying position, and 48 falls (31%) remained unclassified. No injury was observed in 109 of 153 incidents (71%), whereas 6 falls (4%) involved fractures or other serious injury.
 
(Per the above: For falls with an extrinsic precipitating cause, the most significant risk factors were: age, diabetes mellitus, a history of falling, and treatment with neuroleptics or oral bronchodilators. For falls with an intrinsic precipitating cause, the independent risk factors were: age, diabetes, dementia, alterations of gait and balance, previous falls, and treatment with digitalins, neuroleptics or antidepressants).
 
AFRICA

Focus: Gait and balance performance of stroke survivors in South Western Nigeria

Background: Stroke survivors are often left with neurological and functional deficits, which impair their ability to walk and affect their balance. This study assessed gait parameters and balance performance among stroke survivors.

Results: Seventy stroke survivors (65% males) who were 6 months or more post stroke participated in this study. The gait of participants was assessed by gait speed and cadence (rhythmic flow). Balance performance was assessed using the Activities-specific Balance Confidence scale for balance self-efficacy and Functional Reach Test for standing balance.

Participants were 43 to 65 years in age. Forty five (64%) stroke survivors had hemorrhagic strokes while 25 (36%) had ischemic stroke. There were significant relationships between gait speed and balance self-efficacy and between cadence and functional reach distance.

The study concluded that stroke survivors with higher cadences had higher functional reach distances, and those with higher gait speeds had better balance.

About 35% of survivors with initial paralysis of the leg do not regain useful walking function, and 25% of all survivors are unable to walk without full physical assistance. They also demonstrate postural control problems such as loss of anticipatory activation during voluntary movements, increased sway during quiet standing, especially on the affected side, and decreased area of stability during weight shifting while standing.

Postural balance is closely related to gait ability. A strong relationship has been reported between gait velocity and dynamic balance in the acute rehabilitation period among patients with first time stroke. 

"We did not find significant differences in the gait speed and cadence between fallers and non-fallers, though the non-fallers had higher gait speed and cadence values. The reason for this result may be because all our participants could ambulate independently and therefore had similar gait speeds and balance performance," say the researchers.

Stroke survivors with higher cadences had higher functional reach distances, and those with higher gait speeds had better balance. This implies that gait speed and cadence are factors related to balance performance and should be considered during balance and gait retraining.

SOUTH AMERICA

There should have been 6 continents in my review about falls and stroke survivors, but The American Heart Association says the following about South America:

"Current knowledge of stroke risk factors and epidemiology is

based mostly on North American or European studies; so scarce data have been published from developing countries. Stroke will be a public health problem in South America during the next decades because of an increase in life expectancy and changes in the lifestyle of the population. Because epidemiological and clinical characteristics of stroke vary according to environmental, racial, and socio-cultural factors, we need to be aware of the peculiarities of stroke on 
this continent to reduce the impact burden of this epidemic."

Preventing Falls 

These are my new ways to go about preventing falls. I tried all of them and I haven't had any falls in a year since I began implementing these tips:

• Use nightlights in bedrooms, bathrooms and hallways. If the light bothers your eyes, wear a mask. I don't. I deal with it. But either way.
• Sit on a bench or stool with a handle in the shower and use a hand-held showerhead.
• Secure area rugs with double-sided tape.
• Review medications with your doctor as some may cause dizziness and balance problems.
• Slow down and take all the time you need when walking. There is no need to hurry, and it may be safer to go more slowly. By the way, since most of my falls were in the kitchen, bending over to pick up something that landed me on the floor, I bought a used wheelchair, got a new cushion, and always use it when I've dropped something on the floor. I sit, retrieve, and stand. So much easier!

Granted, all strokes suck, but falling compounds strokes, like broken hips or bleeding heads. Keep that in mind.

A Life Interrupted and Then Somehow Regained

While I am finishing the post  "Falls and Stroke Survivors: Sooner or Later, Don't Be Surprised If You Tumble," I had to write something in the meantime because...well, I had to. 

Brain post stroke

I am still in the hospital for one more day. Blood clots in my leg. And lung. I have been here for what seems like a long time. Truth is, 2 weeks is all. I have seen some things that you don't want to see. Ever. It was a reminder, how I reacted to therapy, hospitals. I met all of them in therapy, and they were stroke survivors. Confused, unhappy, filter-less, poor judgment stroke survivors.

The man who didn't know where he was in space and time. He was fixed on looking to his right and the therapist put the plastic cones on his left. He saw the box that used to contain the cones on his right. But the therapist had to gently push his face to the left in order for the task of replacing the cones in the box to be accomplished. The patient therapist and the man who only saw to his right. It was me. 

The woman who was crying. Her mouth always in a frown. The therapist tried to make her laugh, something about if she touched her feet, she would giggle. The patient managed to give a half smile and then cried again. A family member talked to her in a hushed tone. More crying. It was me.

Another woman who wanted to share in my therapy. She was churning on the Nu-Step. "Do the cones falling down mean that it's bad for Joyce?" "Uh oh, you missed getting it on the ring." I knew what it was. No filters. But the therapist told her to keep pedaling on the Nu-Step. That it didn't concern her. It was me.

Still another woman who always wanted to get up from her wheelchair. She was belted in but still, she wanted to go. Anywhere. The therapist threatened her, that if she was trying to stand up, the nurse would put a buzzer beneath her wheelchair cushion and bed that would bring everybody come running. It was me.

Fact is, you can see yourself as you are now--clear-minded, joyous, level-headed, sensical--how much progress you made, only by looking back to where you were. It is me.

You. Never. Know. aka The Shit Misses the Fan

I wrote a post called "The Chances of Getting a Second Stroke, aka Who Me? Worry?"(http://stroketales.blogspot.com/search?updated-min=2015-03-01T00:00:00-05:00&updated-max=2015-04-01T00:00:00-04:00&max-results=1) with the mindset that I was past the 5-year danger zone of getting a second stroke when the 6th year post-stroke approached. 

I bought an exercise bike, learned how to stretch, and used leg weights religiously. I ate healthy, was energetic, and kept my post-stroke hospital weight (size 8-10).

But the trouble started about a year and a half ago when I moved to Pittsburgh and saw a well-known hematologist. He told me, in no uncertain terms, that some doctor, a long time ago, should have taken me off of Coumadin [a blood thinner]. 

So in three days, I weaned off of Coumadin and I was free--no more weekly blood monitoring, no more foods to avoid like cranberries, leafy green vegetables, and a lot of Vitamin K. 

But on Wednesday night, April 22, my knee was swollen, I was more tired than usual, and I was randomly winded. I attributed my swelling to too much exercise (no pain, no gain, right?), my fatigue to too much activity (shop 'til you drop), and my breathlessness to allergies (wheeze, cough). 

My knee was getting increasingly worse, and now it was crimson and warm, my whole leg swollen. Fatigue and breathing difficulty continued, too, through the weekend. I went to the internist on Monday.


"If I were to take an educated guess," she said slowly and paused, as if she didn't want to give me bad news, "I would say it's a blood clot. Go to the hospital and take a Doppler."

Color ultrasound showing blood flow

Of course, I knew what a Doppler was. I had a few of them. The Mayo Clinic defines it best: "A Doppler ultrasound is a noninvasive test that can be used to estimate your blood flow through blood vessels by bouncing high-frequency sound waves (ultrasound) off circulating red blood cells." (A regular ultrasound can't show blood flow).

I went and it was, just like the doctor had educationally guessed. But there was more. On the advice of the ER doc, I took an ultrasound of my lungs and his educated guess proved right, a clot that traveled to my lungs called a pulmonary embolism. I had the vena cava (Greenfield) filter from the stroke 6 years ago, but it only takes care of big clots. The small ones get away and travel, to the lung or brain, for example. 

The hematologist said the clots must have been from the painful flexor tenotomy (http://stroketales.blogspot.com/search?updated-min=2015-04-01T00:00:00-04:00&updated-max=2015-05-01T00:00:00-04:00&max-results=2) that I had 3 weeks ago when I laid on the sofa for days. But who really knows? It was just another educated guess.

So the takeaway is this (do you see the pattern?): don't do as I did.
1. If you have swelling, redness, and/or increasing heat on any part of your body, especially your legs, don't diagnose yourself with an uneducated guess. Go to the ER or call 911.
2. If you're more tired than usual for no particular reason, go to the ER or call 911.
3. If you're breathless, go to the ER or call 911.

I've been in the hospital for 5 days and counting. I am expecting I'll be here for 2 or 3 weeks. My balance is good, but my endurance sucks. So they transferred me to the in-patient rehab floor where I'll build up to where I was.   

Bad news: blood clots suck. Good news: I'm still writing this blog. And I'm back on Coumadin to keep the clots from forming again.

The hematologist said, "I made a mistake in taking you off Coumadin. 

I was tempted to say, "Fuck, yeah!" But for once, I kept my mouth shut. 

Question: How often do doctors admit they made a mistake? Answer: Rarely to never! I was glad he admitted it. And that was enough for me, making me believe, once again, that doctors sometimes don't know what the fuck they're talking about. Just educated guesses is all.

The AFO and Toes, aka There's Nothing Cute about Curly Piggies

 

I was in the 7th grade of Junior High School (they call it Middle School now), when I first learned from Lydie Miller during a pajama party that I had funny-looking feet--teeny, tiny toes like my rather portly father and sharp bunions like my mother.

Tweens are more sophisticated today, with conversations about getting higher on E, listening to the "good kind" of rap, or deleting unwanted photos on Instagram. But 54 years ago, it was feet. It wasn't the first time that I said, "I have rotten genes."

Anyway, Lydie was right. After that bit about my feet, I never exposed my toes to strangers again. I always wore shoes, never sandals, to the pool, and covered my feet with a towel. On the beach, I dug my toes into the hot sand. I had my bunions straightened, but there was nothing I could do for the exceptionally short toes. That realization changed my being. I always stare at feet to evaluate them: better or uglier than mine. It's a slam dunk. "Better" always wins.

After the stroke, the only news that made me happy was I could only wear sneakers. My toes' secrets were safe forever.

I was fitted for an AFO (ankle/foot orthotic) somewhere around the middle of my 15-week stay in rehab. But somewhere after the 5th year post-stroke, I learned of a new problem with the AFO. My 2nd toe began to curl, so much so that it inhibited my walking at times.

It's not a new problem. Just new to me, and probably you, too.  

Dr. Stanley Beekman, a Cleveland-based DPM, did a flexor tenotomy (cutting the tendon of a metatarsal) on many patients wearing an AFO post-stroke, or anybody who suffered a brain injury of a different sort. 

He said in 2005 (the brackets are my interpretation], "Patients post-CVA do not have a normal [forward-walking] gait, and therefore do not need the digital flexors to [lift off] the ground at push off to off-load the metatarsals because there is no push off. This is why this procedure will work in this situation." This procedure, the flexor tenotomy, will work on hammertoes and other lower-digit problems, too.

In 2008, the Podiatry Institute said, "The simplified technique [flexor tenotomy] utilizes an 18-gauge needle to perform the surgery but does not require suturing and the patient may get the foot wet the next day. 

"This technique is performed in the office under a local digital block. After the digital block is performed and the toe prepped, the same needle used to draw up the local anesthetic to administer the digital block can be used for the surgery. An adhesive bandage is often the only dressing required postoperatively."

If you want to see a video of the procedure that takes about 30 minutes for 1 or 2 toes, watch this: https://www.youtube.com/watch?v=GHx8-GyHhcQ 

So I did it--flexor tenotomy--and I didn't see a thing, aka blood and gore. My foot was elevated to shoulder height and the 2nd toe had the tendon cut.

Just like the Podiatry Institute said, I was up and about in one hour. The pain: minimal. The result: it's too early to tell, but my toe is straighter than it was. And for me, I'm walking faster, and that's good enough for now.

WARNING: Three Things You Need to Know About Your AFO (Ankle/Foot Orthotic), aka People Fuck Up

A long time ago, in a land far, far away (I'm kidding--it was New Jersey), a man, called an orthotist, came to Absecon Manor, a nursing home where I was a patient, and huddled with the physical therapists with no input from me. I wanted to know about the options for materials for the brace, the cost, the right to come back for fittings. But they huddled without me. 

He fitted me for a brace, wrapping plaster on  my socked leg that acted as the mold. He produced what is known universally as an AFO (pictured right).

I hated the AFO. It was cumbersome, and the man told me, in no uncertain and threatening terms, that I could go nowhere without it. I had to wear a high sock, even in the blazing heat of summer, to cover the plastic of the brace which would irritate my skin if it got stuck to it. At night, I'd take it off, where many times the AFO would go with me for an urgent bathroom trip. 

Brace on when I awoke, brace off when I wanted to read stretched out on the sofa, brace on when I wanted a drink from the kitchen, brace off when I wanted to take an hour nap, brace on when I wanted lunch, brace off when I wanted to do my sitting-down exercises, brace on when it was night to close the blinds, brace off.... You do have the pattern, don't you?

Medicare will pay for an AFO every 5 years, and I had the brace for 6 years, so when I moved to Pennsylvania, I found out the AFO was made incorrectly. But I'm getting ahead of myself. Here's my story: 

There are 3 places where I could have the brace made in Pittsburgh. I went to the first, but the orthotist contradicted himself twice. So I lost confidence in him for what I thought was unadulterated bullshit. 

I went to the second place, but the orthotist didn't remember that she took pictures of the old brace twice to remind herself where the strap had to go, she didn't remember an appointment I made with her, and she said there would be a charge when there wasn't any. The same deal. No confidence. 

There was only one place left. I met the orthotist--I'll call him Bill--and he didn't like all the questions I asked, and he would rather that I be stupid, just barely tolerating the questions. And I just barely saved the best place for last.

Bill socked my foot and put the plaster over to create a mold. I came back in a week to receive the finished AFO.

"It hurts in my ankle and there's pain around the calf," I said.

"Try it and call us back if there's any problems," Bill replied.

"Um, I already told you. There's pain in my ankle and calf."

So he adjusted my AFO with some kind of melting-plastic thing and tried it again.

"That's all I can do," Bill said, preferring the people who went in there were uncomplaining and settled on whatever they dished out. 

I left because I had 90 days to complain. I read the fine print.

I called the next morning to request another appointment, and the receptionist said there was nothing available until next week. 

"Look again. My old brace has fractures, and it's only a matter of time when I will be bedridden without the brace," I whined. The old brace did have fractures, but bedridden? I may have exaggerated a teensy bit, but as my father once said, "The squeaky wheel gets the oil." So the receptionist found a spot that afternoon.

But this time, the manager--I'll refer to him as Dave who is an orthotist as well--was there, filled with so much more knowledge than Bill and offering to recast my leg for yet another brace.

I have been there 4 times so far and here's what Dave said, 3 things about the AFO that I think you should know:

1. The AFO must come 1" to 1-1/2" below the head of the fibula. You probably won't know what I'm talking about, but the orthotist will. Dave said the 6-year-old brace was too tall and Bill's brace was too short. Maybe that's why Bill's brace caused me pain, impinging on a nerve. I was impressed with Dave's honesty. He had my interests, instead of the company's, at heart. 

2. Dave also told me that the best material for the AFO is co-polymer, rather than the polypropylene which is a generic name for thousands of compounds used by thousands of vendors. The co-polymer is more rigid and 1/16 of an inch thicker, but it isn't subject to the fractures around the joints--the places where nut and screws go on the AFO--like the polypropylene.

3. The AFO, like the original, 6-year-old one, was free of charge. That news only cheered me up because I needed it. It wasn't a "hurrah" moment and I already knew that Medicare covers the AFO every 5 years.

But there was a chink in the armor, if you will. I'm going back, one more time--at least. My physical therapist saw my new brace and told me to tell Dave that my foot is externally rotated. The brace is supposed to re-mediate that problem, she said. Dave told me that my foot is internally rotated, coming from my hip. There's nothing more he could do.

So they're going to have a conversation in a few days--two experts who both know what they're talking about. Hoo-boy. I'd love to be a fly on the wall for that exchange. I'll let you know in a future post who won. 

Bottom line: I have to wear this brace 18 hours a day and it can't be a C+ situation. The AFO needs an A+. I won't settle for anything less. You shouldn't either.