Top 5 Worst Aspects of Stroke

June 19, 2012 by  
Filed under On Life and Living

Life after stroke is never exactly the same as it was before.  Even when the permanent damage is classified as “minor,” life must now be viewed in a completely different context.  Part of the brain has died, and the doctors tell us that brain cells don’t regenerate.  Life will require adjustment, for no matter how much we recover there will always be lingering deficits.

Our pre-stroke daily routine(s) consisted of thousands of individual bits of function.  Activities as simple as getting up from the couch and walking to the bathroom must now be viewed in a different context.  Instead of a single act, this larger movement now viewed as the sum of a number of individual movements.

My wife Jessica experienced her stroke while she was delivering a baby.  Actually the doctor described the trauma not as a stroke but as “a pair of medium sized strokes.”  I guess that means the stroke(s) affected a medium sized portion her brain.  From a practical perspective, there is no such thing as a “small” or “medium” sized brain injury.  Those who have ever experienced one know the frustration of pain, dizziness, and loss of functional ability.  Explaining that things could be worse is a discussion that quickly turns into an argument.

If you’ve ever experienced a concussion, you know how painful and unnerving it can feel.  The dizziness, sensitivity, and loss of focus are scary symptoms.  Although concussions feel severe, they are actually classified as a mild brain injury.

If concussion recovery is like gluing the arm back onto a porcelain doll, then stroke recovery is fixing that same arm after it has been shattered.  For all the hope and prayers of a better life, there is a sobering feeling that things will never be normal again.  No matter how much is regained, there will always be lingering frustration.  It is the feeling of despair that comes whenever we are reminded that our capability may not ever return.

If you have ever wondered about life after stroke, it is a life of adjusting to frustration.  It has been two years of recovery for us, and there will be a lifetime of frustration ahead.  The top 5 worst aspects of living with our stroke:


1)  Spasticity

The most common and obvious result of a stroke is a stiff hand or leg.  Jessica’s stroke was sizeable enough to affect a lot of movement.  It affected the right side of her body, especially her arm and leg.

Stroke victims frequently experience increased muscle tone, also known as spasticity.  In the arm, this condition manifests with a bent elbow, tight hand, and curled fingers.  The increased tone results in stiffness and makes it hard to reach, grab, and pick up items.

This frustration is ranked #1 because it is the most public one on the list.  When the body is in motion, even unrelated muscles tighten up.  It’s bad enough to walk around at a turtle’s pace… what is even worse is an arm, hand, and fingers that tighten up and refuse to relax. It is truly humbling to feel so self-conscious on a stroll through the park or mall.  Your arm raises itself a bit to announce your presence as hand and fingers squeeze into a half-hearted fist.


2)  Aphasia

Aphasia is a second debilitating result of stroke.  Imagine asking someone to turn on the lights and having them interpret your request as if you said “bring me a drink of water.”  Now consider that the breakdown in communication may have been your own words.  Your brain said “turn on the lights” but your mouth spoke “I need some water.”

A person with aphasia might have a hard time speaking, reading, writing, and identifying.  They may also have a hard time processing what other people have said.  A stroke victim may think they are saying “turn on the light” when in fact they are saying “get me a fork.”  This problem is difficult to deal with because it is hard for the patient to wrap their mind around what is going on.  Their brain is sending signals but the mouth has a mind of its own.

Aphasia also manifests in written words and pictures.  Patients who suffer it may say the wrong word to identify a picture or written word.  They may get hung up on a single word and repeat it to answer a variety of questions.  A natural consequence of aphasia is doubt in what one is saying.  Even when expressing thoughts correctly, the patient may be unsure about whether they said what they meant to say.


3)  Cognitive Problems

The ability to analyze situations and organize information is called executive function.  Stroke victims may have a hard time with all the underlying abilities that allow for executive function.  The inability to remember, organize, and think critically are common deficits that present themselves daily.  The scariest result is when a stroke victim suffers impaired judgement.  They may be unaware of the amount of time needed to complete a task.  In addition, they may attempt tasks that are no longer safe.

Two years into our recovery, Jessica still hasn’t regained her ability to read.  She does lots of activities and practice, but the ability to pick up a book and dive in has evaded her.  Even with accomodations, her brain struggles with various forms of literacy.  I remember feeling brilliant the day we brought home the first book on tape.  Unfortunately, her mind could not listen as fast as the book was being read.

I always make sure to sit near her during movies.  Even the shortest amount of text in a film causes distress.  I often forget that Jessica cannot read the text before it disappears from the screen.  This text is important because if often reveals a clue to the story.  Having to ask someone to read a snippet of text feels degrading.  Just another reminder that life is being lived below the standard established by society at large.


4)  Pain and Numbness

In most cases, post-stroke pain is caused by active movement.  Walking on a stiff leg or using a tight hand may cause discomfort.  More severe cases may result in continuous pain that affects the victim at various times during the day.

Pain exhibits a lot of control over our day.  Jess can only tolerate so much walking before the steps become painful.  This pain has a major influence on whether it is worth it to get up and take that first step.

Walking is the result of compelling motivation.  There is only so much of it that can be done during the day, for additional walking results in added pain.  A stroke-affected lifestyle is a lifestyle of staying put whenever possible.  One of the greatest challenges of the day is coming up with compelling reasons to pursue daily activity.


5)  Vision Problems

The occipital lobe is the vision center of the brain.  If a stroke strikes the rear of the brain, then it is likely to damage the victim’s vision.

The brain has two hemispheres that control the left and right sides of the body.  Stroke commonly affects just one hemisphere and therefore one side of the body.  This is true of vision just as much as muscle control.

Jessica’s visual field cut has eliminated the ability to see anything to the right.  If an imaginary line were drawn straight down the middle of her vision, each eye can only see things to the left of the line.  In order to replicate normal vision, her eyes move like windshield wipers set on the fastest speed.  Scanning quickly allows the eyes to experience a larger field of vision.  This is an unnatural change for the eyes and one that requires constant attention and energy.

This loss of vision simply represents more activities that have been lost forever.  Driving is no longer an option, and the vision loss means that she may not even be able to see body language when engaged in a personal conversation.  Every time she looks down at her plate during a meal, she will see her fork but not her spoon and knife.  Vision loss just makes life that much more annoying and difficult.


Our stroke recovery has been a good one.  We have moved beyond the worst results of stroke.  Many stroke victims never regain the ability to swallow or control when they go to the bathroom.  Stroke can result in reduced balance and problems regulating body temperature.  It can destroy the ability to speak and interpret the world around the victim.

One thing is sure… life is never the same after stroke.  Brain damage often requires lifestyle changes.  Adjusting can be difficult, but it can be done.  If the victim is able to come to terms with the limitations of their stroke, then they can begin to structure their life around activities they can still do.

Life may be different after a stroke, but that doesn’t mean life has to be bad.  Many stroke victims go on to lead happy and healthy lives.  I know this firsthand because I am married to one!


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3 Responses to “Top 5 Worst Aspects of Stroke”
  1. Wendy says:

    I had a brain stem stroke years ago and continue ti make improvements! I found this article depressing and negative. A person who had a stroke needs possitive reinforcement not this type of information that makes you want to stop. You have to have hope to keep going….I have lots of encouragement….I may not totall be walking yet but getting close! At the beginning I was locked in and I couldn’t even move my arm that I can lift over my head now! Encouragement is what is needed!

  2. L. Pierce says:

    I am an epileptic [concussions] who experienced a severe Grand Mall seizure at the end of the last decade. During the seizure I coded. When I regained consciousness I found I was unable to translate thought to speech. I also had no balance and have had to rely on a cane to keep from constantly falling ever since. Just a few months ago I had an MRI done of my brain for another medical problem. That is when it was discovered that I had suffered a stroke. I feel strongly that it was during that Grand Mal. The reason I am writing is to tell this story about how I started to read again after the stroke. I began reading romance novels. I had never spent any time reading them. I thought they were, for the most part, ridiculously simplistic and predictable… and that is probably why they were able to hold my attention long enough for me to begin to be able to partake in one of my favorite past times [no not THAT],I’m talking about reading. It took me years to get back to my preferred genre of mystery and various research publications of healthcare and other interests. I bring this up because you may find changing what you read as important as how you read and retain. Good luck and keep the faith. Tomorrow may not be the same as yesterday but the sun will still shine.

  3. Debby Benton says:

    Hi my dad a very bad stroke 2 years ago, although will never be the same we felt he was getting a bit of independence back until 2 weeks ago he started getting what the doctors call seizures. But these seizures have manifested into violent nightmares where he thinks the end of the world is happening. He cries, screams, prays, scratches his face violently. This lasts approximately 45 minutes, then he comes out of the seizure. His blood pressure goes up to 200/155 with a pulse of 110, for someone who has heart failure at 27%, it is so worrying, has anyone had anything like this before???
    Thank you
    Debby Benton

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