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. 

The Chances of Getting a Second Stroke, aka Who Me? Worry?

Everybody worries about getting a second stroke after the agony of the first one. So read on.

You probably don't know James Wilson, but the folks at Lighthouse Baptist Church do. In 2000, the Pastor wrote a sermon called "Who Me? Worry?" that has absolutely no connection to the gap-toothed poster boy of MAD Magazine, Alfred E. Neuman, who said sort of the same thing. Alfred substituted "what" for "who." But I digress. 


Anyway, in the sermon, Pastor Wilson took Matthew's words in the New Testament (chapter 6, verse 34) and brought them up to date: 

Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. 

His sermon was about how much we worry about real things, like children worrying about death, and adults worrying about leaving their children too early when death knocks on their door.

In my world, a second stroke was the real thing. After almost six years since my stroke which happened April 8, 2009, my top worry was about getting a second stroke. Of course, I Googled it, and I found the following article reported by HealthDay in 2005:

"People who have had a minor stroke have a 43 percent risk of another, potentially fatal stroke within 10 years, Dutch researchers report."

There were 2 things wrong with that report. First, it was only said about one country, and second, the report was 10 years old. So I continued to look and found this one from Deborah Davis, DNP (Doctor of Nursing Practices), written 10 years later, aka 2015:

"The American Heart Association and  American Stroke Association estimates nearly a third of the strokes which occur every year in the United States are second strokes.  Also, physicians contend there is a 40% chance of having a second stroke within five years of the first."

If that were true, that means I passed the 5-year milestone. And this from Dr. Oz, a cardiologist, television star, and heart throb with the 45-and-older set, written in our current year as well:

"Certainly, many strokes are caused by high blood pressure. For those people, there's a 20 percent recurrence rate within two years if they control their blood pressure, compared to a 50-percent rate if they don't. You can lower that 20 percent even more (by about 70 percent more) by avoiding smoke (even second-hand), eating healthy fats (like 2 grams of distilled fish oil or an ounce of walnuts a day, controlling stress, and meditating daily."  

Last year, Dr. Bernd Kallmunzer of the Department of Neurology at Universitätsklinikum Erlangen in Germany, after conducting a study on second strokes, told Reuters Health, "Taking a pulse reading can detect atrial fibrillation, a leading source of blood clots that travel to the brain and cause stroke. Detecting atrial fibrillation is important because the patient can be treated with anti-clotting medications to reduce the risk of another stroke or death.

"The risk of a second stroke is highest during the months after the first one [now it's months--better yet--and a neck pulse is ideal for somebody who has use of only one hand], but currently researchers do not know exactly how long this kind of pulse monitoring should go on," he said.

I have low blood pressure, low cholesterol, don't smoke and I'm not around smokers, not overweight, and got over my stress through therapy. No, I shouldn't have another stroke, but I shouldn't have had the first one either. (http://stroketales.blogspot.com/2014/07/how-two-legal-drugs-caused-my-stroke.html)

I always say, because it's true, you never know what's around the corner. You just never know.

Ten Things NOT to Say or Do to a Stroke Patient

This post is different. It comes directly from my book, "The Tales of a Stroke Patient." One of these situations just happened--again. I think it needs a re-print in my blog.
--------------------
People are funny, and I don’t mean in a ha-ha sort of way. They could be neurotic, bipolar, obsessive-compulsive, anxious, or agoraphobic, just to name a few types. Some of the ones who came to visit me had their own type: dysfunctional-when-meeting-a-stroke-patient.

Even though they had good intentions, in all fairness to me, some of them said and did things that were downright insulting, if I took the comments and body language personally. But I didn’t, for those people who took the time and came to visit me.

In all fairness to them, how could they know the right responses from the wrong. What it really comes down to is this: How do you speak to a stroke patient who’s had her life turned around in a 180-degree spin?

I made a list of the top ten things you should never say or do to a stroke patient, and I, too, have been guilty of most of them before having my stroke when I visited stroke patients. 
So having set the record straight, here goes.

1. Saying ‘good girl’, ‘good boy’, ‘good job’

Those are phrases you should say to your pets when they are being rewarded with a “Pup-Peroni” or Doritos’ chips. If you say them to me, I am not really being a good “anything.” I’m just sayin’. IT’S SORT OF CONDESCENDING.

 

2. Talking loudly

People have a habit of speaking loudly to foreigners and the sick. Just because they are from somewhere else, speaking loudly to a foreigner will not help get your point across. There is no hearing problem involved. The same thing applies to me. HOW DOES SHOUTING HELP?

 

3. Talking slowly

Talking slowly to a foreigner might be an asset. But talking slowly to me makes me feel mentally disabled. How would YOU like it if someone said, “How — are — you — feeling — today?” If I could, (and I wasn’t able to then), I would have talked quickly in response, possibly making them change their way of speaking. I REPEAT–HOW WOULD YOU LIKE IT?

 

4. Making faces at me

Stroke patients are difficult to understand at times, but please don’t squint, or turn your mouth to one side, or wrinkle your nose at me. Just ask me to repeat my statement, and if you still can’t understand, ask the question in a different way. After all, you’re the one with a full brain! SO USE IT!

 

5. Talking over me

I mostly listen, but when I get up the courage to speak, let me do it. Don’t interrupt me in the middle. In other words, LET ME FINISH!

 

6. Completing my sentence

Some people find the right word choice instantly, but it takes me a few seconds more. So please stop trying to fill in the blanks. WAIT! I’LL GET IT!

 

7. Giving me lists of things to do

If you give me a list of five or more things to do, I’ll may miss one. My brain is going, but the parts that are dead…well, simple died and there’s no hope of getting them back. Did you ever hear that heavy drinkers lose brain cells and the cells won’t be replaced? Same thing. YOU HEAR THAT, HEAVY DRINKERS?

 

8. Ignoring me as if I’m invisible

Once in awhile, at Rehab Y, I would see doctors on the outside. If I’m waiting at a new doctor’s office, for example, staring right at some person who’s in charge, the person invariably stares at my friend to find out what my friend wants, forcing me to shout and look like an idiot–which I am not. I shouted several times in person but even more on the phone. Some of the people just don’t listen and say their “shpiel” regardless if I object. “FOR CHRIST SAKE, I HAD A F***ING STROKE. GIMME A BREAK!” 

 

9. Saying I’m not moving fast enough
Once in awhile, people will say something to the effect, “Could I get by you?” and start moving before they even hear the answer. Their rhetorical question, because that’s what it really is, a few times cost me my balance. WHY ARE VISITORS IN SUCH A HURRY IN THE NURSING HOME?

 

10. Hanging up on me

A lot of operators hang up on me. They are nameless and they take advantage of that fact. But it doesn’t help me. WHY WON’T THEY WAIT?

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Currently, all these situations are still going on with me. Yes, I tell it all from my point of view, hoping that healthcare professionals will take advantage of my thoughts, learning why stroke patients are still frustrated. I am tenacious in my mission to educate the world about stroke survivors. Why do I use "patients" and "survivors" interchangeably? Because sometimes, people make me feel like a patient, even now, 6 years later.

Psychotherapy: It's Been My Life Changer

When one thinks about therapy for stroke survivors,
physical, occupational, and speech therapies are the obvious choices. All the rehabs provide the same, old thing. But what's the missing piece? Psychotherapy, of course! None offer that as routine.

My partner suggested mental therapy almost six years ago. But I didn't do it, not because I didn't think that I needed it after the stroke that caused maximum heartache to both of us and almost ultimate death to one of us; I didn't do it because I wasn't ready. That's the way it was then, and nobody, not even my partner, could change it.

Even if you think you're perfectly all right (which actually no one is) and especially if you think you're not, everyone should experience mental therapy sessions at least once in a lifetime. Most, if not all, insurance plans cover it. You can choose a licensed social worker, a psychologist, a psychiatrist, the latter being able to write prescriptions. But all of them give support with something, maybe a chain of somethings, you just can't figure out.


I've gone to a licensed social worker who is also a psychotherapist for about a year now, twice a week (after the year, once a week), 50 minutes per session, for disappointments and depression from failed relationships among family and friends, some having to do with the stroke, some not. The therapist will read this post and know that I am talking about her. To afford her anonymity, I will call her Sue.

Sue and I talk about a variety of things, like self-esteem, self-worth, and dignity, about life choices, responsibility, and values, about betrayal, rejection, and revenge. I am not nearly done, but looking back, I have made progress. When I first came to her, I was an open, walking wound, but she taught me how to give myself more value, to be a good person. But it turns out, according to Sue and me in collaboration, I was questioning my behavior before the stroke, like choosing the wrong men--angry like my father, narcissistic like my mother, bullying like my brother, or feeling revengeful thoughts against people I once cared about.

Though her office is upstairs, she meets me downstairs to accommodate me. The downstairs space has no comfy couch, no budding plants, no inspiring pictures. Just talk. It's enough for me. With a notebook on her lap, she writes occasionally and listens intently, speaking at random intervals.

Sue is my rudder for making most of my nonsensical thoughts sensical. But she's not a magician. Some of my thoughts get short shrift, dismissed, like the rubbish they are. "Seriously?" she often inquires. And every situation prompts more thoughts. She challenges me and I embrace the challenges. We are a good team--the tough psychotherapist who doesn't let me get away with bullshit comments and the willing patient, eventually choosing what I will become. But not tomorrow. I am a patient patient. I am willing to wait.

The Geek Squad and a Stroke Survivor: It's Like Apples Communicating with an Orange

I was desperate. The whole building had a wi-fi outage, meaning that FIOS knocked out my triple play: the television, the Internet, and the phone. And when it came back on, the television, the Internet, and the phone all worked, but the printer was off the network, aka offline. I knew because the blue light was blinking. I had a speech to give in 3 days at a local hospital and I had to key-in my notes and, consequently, print them. So I, in the current vernacular, was fucked.

I texted my son in Boston who works for Google as a network admin.

"How do I get printer back online," I whined.

"Um, who is this?" my son inquired. I thought he was joking. He was not.

"It's your mother, damn it. How could I get my printer to work? It went offline in the wi-fi outage." Frustration comes to me so easily, now that I'm a stroke survivor. 

"Nothing I can do. Call your Internet provider. Or Google it." Google it. He always ends the conversation that way.

So I texted my other son who works for IBM, here in my city, as a programmer with the same question.

"Everybody thinks [and by everybody he meant me] that I'm supposed to know everything about computers," he lamented.

"I just thought--." I couldn't even finish the sentence.

"I'll take a look when I come over on Sunday," he said because he knew that I really, really needed that printout for my speech.

One son in Google. One son at IBM. All 3 of us in IT, and nobody knew how to fix the wireless printer. Huh.

So Sunday rolled around and he took a look at the printer,  sitting himself down on the rocking chair placed strategically, for my benefit, in front of the printer that was 30 feet away from the laptop. He got the password from the router, yet no luck. He left and I called the Geek Squad.

The Geek Squad, originally independently-owned, was bought by Best Buy in 2008, and fixes your technical what-have-you--computers, printers, home theaters, for example--starting at $250 if you're interested in a one-time home repair and in a bind, emergently speaking, less if you could wait longer. They also have phone support which you could pay an initial fee of pennies short of $100 and $10.95 a month. You could cancel the monthly service fee at any time, but the $100 is theirs. They call themselves agents, like the CIA or FBI.

So I elected for the phone support. I mean, how hard would it be to get the printer online, you know? I called, and just so I wouldn't get anyone in trouble who's probably making close to minimum wage, the names I'm using have no connection to reality. Having said that, Richard was my agent.

"Hello. My name is Agent Richard. I know that problems with technology can be frustrating. [C'mon. He was reading off the script]. What kind of problems are you having?" the agent said in a monotonous tone, as if one problem a day was all that he could handle. I told him the story.

He didn't have to tell me that he was a member of the Geek Squad. I could just picture him. You know the kind, where if his house is on fire and flames are shooting through the roof, he might ask you to wait a minute because he has to finish the algorithm. And that ho-hum, flat voice slayed me.

"I'll have to charge you a fee first." [Of course].

After he accepted my card and the initial subscription fee, he took over my computer, after I approved, by his moving the cursor around. I carefully watched, but these guys were good. After he opened ten windows quickly, including 2 with code, I was lost. 

"You need to get a secret code," he said, adding a little intrigue to the mix, "and I'll type it in for you." A bunch more windows opened, and by now, we were thirty minutes in. "I'll transfer you to an engineer who knows about printers."

"Wait  a minute! I thought you were going to fix my printer," I implored, ready to explode from the passive voice. 

"You'll have to wait for the engineer," he said. So besides agents, they now had engineers, too. "You really shouldn't wait more than 40 minutes."

"Forty minutes," I screamed and I was exploding. "Do I have to be on the phone or can he call me back? Do I sit at the printer or the computer?" I was running out of power, on my cell phone, I mean. Two bars. But he had already gone and left me asking the questions to myself and listening to promos for the Geek Squad, over and over, that were playing in the background.

Richard returned 15 minutes later. "It should take a little longer."

"How much is a little?" I asked.

"Well, you don't need to be on the phone. He'll call you back."

I gritted my teeth and hung up. Three hours passed and I needed to get my mail in the lobby. So I stood up, left, and in the distance as I was halfway down the hall, my phone rang in my apartment. When I returned, I got the message the engineer left.

"Hello. This is Myron. I heard you wanted your printer fixed. I won't be here any longer today, but I'll pass the message on." I never got a return call. So the next day, I decided to write to the Geek Squad about the blue, blinking light. Here is the response I got from Phil:

"Sorry to hear that.  The blinking light indicates that the printer is no longer connected to the network – this can be due to a change in the network (a new router or Wi-Fi password), or increased network traffic causing a conflict with the printer’s IP.   Generally, the easiest way of getting a printer back on the network is through a temporary USB connection.  If you don’t have a USB cable, there should be other options for getting the printer online if the printer has a screen with menu options.  If you are available, please let me know so we can create a new session to get your printer back on the network and working with your computer."

I understood the message, but I just couldn't do a new session. Now, I was out of power, but I agreed to the session anyway because I am tenacious. My speech is tomorrow, but I haven't heard from Phil yet. I sent the text of the speech to my son and he's going to print it for me. 

The Geek Squad didn't come through, but geeks are like everybody else. It doesn't take much to just fuck up. And my printer? Don't ask.