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My Stroke Journey: Woman Shares Her Recovery Tale

Tribune photo by CHRIS URSO

Dina Barker beads a rosary while sitting on the porch of her St. Pete Beach home. Two years ago, Barker suffered a debilitating stroke and had to relearn how to read and spell. She uses beading as a form of therapy.

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By DINA BARKER

Special to The Tribune

Published: September 21, 2008

ST. PETE BEACH - The idea of having a stroke never crossed my mind two years ago, as I hurried to put away supplies in my new dream-come-true coffee shop.

I was 50 years old and in good health, and my life was right on track: My house was paid off, my eldest daughter was due to graduate from college, and my youngest daughter was about to turn 18. Just a few months before, I had opened the coffee shop in the small town of Huntley, Ill., about 50 miles northwest of Chicago. That particular February afternoon, I was looking forward to a soothing bath and a fun night out with friends. I ignored a painful monthlong headache, quickly made myself a cup of coffee and rubbed my temple. A 15-mile drive home lay ahead of me.

Before the drive was over, I was handicapped. That quickly, my life was changed forever by a stroke.

I remember putting my hand up to shield my eyes and seeing it hit my car window — suddenly, violently. Blood leaking in my brain was causing a seizure. My SUV drifted into a snow bank on the side of the road.

I awoke to someone slapping my leg very hard, shouting for me to say my name and date of birth. I tried to open my eyes but couldn't. I mumbled my answer. I tried to touch my face. Sharp voices, disturbing the tranquillity I had been feeling, ordered me not to move.

The temperature was below zero, and the sunlight on the snow was blinding. EMTs, their uniform sleeves banded in neon orange, seemed everywhere. Frantic voices. "Can you feel this?"

I felt scissors cut my clothing from my body to free me. I cried out at the slap of cold air on naked skin. Cold, gloved hands gently wrangled me onto a hard board. Warm blankets were piled on me, and my forehead was duct-taped to the board.

In the emergency room, a nurse removed the duct tape and inspected my forehead. "Well, I guess that was the best eyebrow job you never paid for," she said and laughed. I had no idea what was ahead for me, how my life was about to change, or I probably would not have smiled back.

Almost two years later, I am still trying to recover.

Families Fumble For Information

Stroke is the No. 3 cause of death in the United States and the No. 1 cause of adult disability. Every person reading this article likely will, at some point, have to deal with the fallout from stroke.

It is an especially confusing medical emergency, and stroke victims and their families are often left fumbling for information. My family was baffled by the onslaught of terms, and a hospital bedside makes a poor classroom.

In the simplest terms possible, there are two kinds of stroke. The majority (83 percent) are ischemic: A blood clot gets caught in a blood vessel too narrow to allow passage, much like when something gets stuck in a straw. Time is critical for victims of ischemic stroke because medications called clot busters are used, and fast treatment means less damage.

I had an uncommon (17 percent) hemorrhagic stroke: Blood leaks directly onto brain tissue, which usually ends in death.

A blood vessel in my brain had been injured, most likely by a severe fall weeks before. The weakened blood vessel had probably ballooned out first, causing an aneurysm, a warning that an MRI might have picked up, preventing the catastrophe.

Strange Behavior

If only I'd had an MRI.

For weeks, my eldest daughter had pointed out oddities in my behavior. She insisted that one side of my face was sagging. I told her I was just tired, to stop worrying. I knew I had a bad headache, but I never suspected what was happening.

The country town I lived in had no doctor, only a certified nurse practitioner who was always days behind in seeing patients. Qualified medical personnel are scarce in rural areas, and there was no neurologist on staff at the emergency room I was rushed to.

Doctors and nurses asked repeatedly if I had been drinking. I assured them I had not, and tests showed no alcohol content in my blood. My air bag had not opened, and X-rays confirmed I had not suffered from the accident. But the pain in my head continued, unbearable. I was put on morphine, and I began rambling on about the severe pain in my head.

My family and friends kept pressing the nurses for answers, but they had nothing to offer, not even a guess. Due to limited equipment and staff, I was transferred to another facility. The second hospital had an MRI machine and two neurologists on staff, and the doctors came to opposite conclusions about what was happening. One thought I had a brain tumor and insisted on immediate brain surgery, but the other neurologist did not agree.

I was moved to a third hospital. My pain increased; not even morphine could control it. Finally, brain surgery — a craniotomy — was performed to determine whether the object that showed up on an MRI of my brain was a tumor or a blood clot. It was neither. Instead, there had been prior bleeding in my brain, and the object in the MRI was another weakened blood vessel (aneurysm) on the verge of bursting, millimeters away from my motor control center.

The aneurysm was removed before I lost any more brain tissue. I was released to go home and heal. We were told to expect 100 percent recovery.

Short-Term Memory Fails

Everyone said how lucky I was.

At first, there were no obvious physical signs that I had suffered a stroke. I didn't look damaged, didn't have the weakness on one side of the body that is typical of stroke. My family assumed the crisis was over and that I would be myself in a few days.

But a few days into my recuperation, I awoke in the night, alone and unsure of who I was, where I was and what was happening. I cried out, waking my daughter. She reminded me that my brain was swollen from the surgery and assured me my memory would return.

To some extent, she was right. My long-term memory did return, but my short-term memory did not work. I couldn't remember from minute to minute what anyone, myself included, had said. Additionally, the pain and my medications caused unexpected changes in my behavior, including depression and aggression.

I only knew I was not getting better. Daily, it was becoming more, not less, difficult to get up and cross the room, to brush my teeth. Every task seemed too difficult.

At the same time, the pressure to return to work was overwhelming. Even with family stepping in for a week or so to help me out at the coffee shop, it was a choice of go back or go bankrupt. I did not have the strength to do either, but I tried to work. I was the only source of income for my family.

I finally gave up when I spilled coffee on a customer. What was effortless a month before became an impossibility.

The financial wipeout that occurred as a result of my illness happens to many people who have a stroke. I had good insurance that went a long way to cover medical expenses, but even the best insurance eventually runs out.

The family fighting that resulted from my stroke is also common. Whether it happens in a business or in a family, when the person who is the leader is abruptly gone, dynamics shift. If we had not been told to expect a complete recovery, maybe many of the problems that severed ties in our once-close family would not have happened. Maybe we would all still be together. Maybe I would not have lost contact with two of my five children.

Naturally, it was frightening to see me go from a strong and vibrant woman to a terrified old lady in a matter of weeks.

I have yet to meet one person who has had a stroke who would say that they are 100 percent recovered. No one survives a stroke and is the same person again.

Neurologists and other medical professionals insist that each stroke is different and, perhaps, at a microscopic level, yes, each stroke is unique. But stroke survivors will be the first to say that there are commonalities in the symptoms they share.

Paperwork Can Be An Obstacle

Following my stroke, an acquaintance, Pete, took the time to describe his stroke to me.

I hardly knew Pete, and had never known why he had difficulty talking or why he seemed so strange. Small country towns can be supportive, but they can also be cruel. I had been told he was mildly retarded. Turns out, because his insurance policy limits did not allow speech therapy after his stroke, Pete hung around former friends trying to re-learn to speak.

I was surprised when, after my stroke, Pete called me. I was the first person he ever talked to about his own experience. He'd had an ischemic stroke 10 years before, but many of our problems were the same.

Pete never applied for disability because he could not understand the paperwork. Brain-damaged people are unable to navigate a complex health and public assistance system. A stroke can cause the loss of the ability to read and write. Though sometimes temporary, such a disability makes it impossible to fill out forms without help. Speech impairment also makes it challenging to access help systems.

A person who suffers a brain injury loses credibility. Tears from very real pain are often misinterpreted as psychological problems. Essential medications can actually cause some of the behavioral problems, not to mention the structural damage to the brain that is only beginning to be researched.

Lucky for me, I had help with my paperwork. I never even needed a lawyer for my disability claim. Caseworkers at government offices were many times more knowledgeable and sympathetic than my own doctors.

It was several months before I was diagnosed with Traumatic Brain Injury. There can be an initial appearance of getting better, only to then get worse with no apparent reason.

As the winter began to close in, my pain increased with the cold. Even after tens of thousands of dollars in tests, doctors in Chicago were no closer to finding out what was wrong. There was an implication that my pain and inability to cope with the simplest tasks were psychosomatic and due to depression — but I knew that wasn't true.

A Move To Florida

I decided to try to live in Florida, near my best friend.

A month after moving to St. Pete Beach last November , I had more seizures and was diagnosed with epilepsy and other health problems. Strange, but it was a relief that, finally, some real, measurable causes for what was happening to me were coming to light. No one ever mentioned to me that epilepsy can follow any brain injury.

My disability income, based on my lifetime earnings, is just a few dollars over the Florida limit for Medicaid, so I am not able to get help with the anti-seizure medications I must have to control my epilepsy. After getting every free sample available, pride became a luxury I could no longer afford. I called or wrote to everyone I have ever known for help. But, like health insurance, favors eventually run dry.

Florida law classifies me as medically needy, and the state will step in only when my bills exceed $600 per month. The medications I need to stop seizures do not cost $600. This means I must first survive a seizure, be taken by ambulance to the emergency room, be treated and incur a bill of $600. Only then can I get a month's worth of medication.

Everything Has Changed

I am disabled now and confined to work at home. This article is a practice, an attempt to make my mind work again. Having written professionally before, I hope to be able to write well enough to bring information to people who have suffered strokes, and to their caregivers.

My stroke proved to be catastrophic. I lost a life I had worked for 50 years to make for myself. My house, savings and personal belongings are gone. I am being sued for not completing the lease where my little coffee shop was situated. I found out that even lifelong friends sometimes desert the drowning for fear of being pulled under as well. Others remain unafraid of the challenge.

The stroke journey is rich with lessons, painful and healing in equal measure. My daughter, who had alternated between being a lost cause and being the ultimate "rebel without a cause," made me her cause. I learned that good neighbors are a treasure. I learned to make countless phone calls and to ask for help, even from my state representative, Jim Frishe, R-Belleair Bluffs, and his assistant, Tanya Moore. (And they did help.)

I have learned that many people are compassionate and a few people are cruel.

I pray daily and try to learn from this experience. I would like a chance to work again and to be productive. I would like to challenge myself to do my best work yet.

Terms Related To Stroke And Stroke Recovery

STROKE: A blood-flow interruption to the brain. This can happen in one of two ways:

Ischemic Stroke — Occurs when a blood vessel to the brain is clogged by a clot. Clots can form in the brain (called cerebral thrombosis), or they can form in other parts of the body, break loose and travel up to the brain (cerebral embolism).

Clot-buster medications are used effectively to stop brain damage.

Hemmorhagic Stroke — Occurs when a blood vessel ruptures, leaking blood directly into the brain. Doctors and nurses commonly refer to this as "a bleed." A hemmorhagic stroke is usually fatal.

TRANSIENT ISCHEMIC ATTACK: An event sometimes called a ministroke, or stroke symptoms that always last less than 24 hours before disappearing. While TIAs generally do not cause permanent brain damage, they are a serious warning sign of stroke and should not be ignored.

DOUBLE BRAIN STEM STROKE: This is all about the location of a stroke, not a type of stroke. The brain stem controls essential body functions such as breathing, heartbeat and speech, so this event is usually fatal.

TRAUMATIC BRAIN INJURY: This diagnosis is a big category, a holding area for stroke patients who are exhibiting atypical, not easily understood symptoms. The diagnosis is used while research science tries to catch up with illness. Sometimes a mental impairment may appear to improve immediately following TBI and then worsen, or, conversely, it may appear much worse initially and improve after a few months. TBI may result in impairments with a wide variety of symptoms and signs. The rate and extent of recovery can be highly variable, and the long-term outcome may be difficult to predict.

Online sources related to stroke and stroke recovery:

American Stroke Association: www.strokeassociation.org

The Stroke Network: www.strokenetwork.org

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