When Hercules Had a Stroke - American Stroke Association

N OV E M B E R | D E C E M B E R 2 0 1 1
STROKECONNECTION
StrokeAssociation.org
Guilt and Frustration
Tackling two debilitating emotions
Improving Stroke Care
Healthcare quality improvement
programs make a difference
Recall a Problem?
Tips for improving your memory
Understanding
Long-term Care
When staying at home
isn’t an option
Life at the Curb
Those Oldies but Goodies
Allergan, Inc. is a proud sponsor of
Stroke Connection E-zine.
When
Hercules
Had a
Stroke
Hercules star Kevin
Sorbo on his recovery
and life after stroke
N OV E M B E R | D E C E M B E R 2 0 1 1
Contents
STROKECONNECTION
12
S TA FF A N D C ON S ULTANT S :
Laura Sol
Vice President
American Stroke Association
Debi McGill
Editor-in-Chief
Jon Caswell
Lead Editor
Pierce Goetz
Art Director
Lyanne Dupra
Advertising Sales
[email protected]
8
Cover Story
8
Even Hercules
Can Have a Stroke
For seven seasons Kevin Sorbo played the
title role on the popular TV show Hercules.
Before the fifth season, at age 38, Kevin
had three strokes. We talked to him about
his recovery and what he learned about
life as a result of his strokes.
16
Features
Allergan, Inc. is a proud sponsor of
Stroke Connection E-zine.
12
Caregiver Guilt
and Frustration
Despite their dedication to doing their
jobs perfectly, many caregivers experience
guilt and frustration at some point in
their caregiving journey. We talked to
three caregivers and a psychologist about
dealing with these debilitating and all-toocommon emotions.
Copyright 2011 American Heart Association
ISSN 1047-014X
Stroke Connection is ­published six times a year
by the American Stroke Association, a division of
the American Heart Association. Material may be
reproduced only with ­appropriate acknowledgment
of the source and written ­per­mission from the
American Heart Association. Please address inquiries
to the Editor-in-Chief.
The information contained in this publication is
provided by the American Stroke Association as a
resource. The services or products listed are not owned
or provided by the American Stroke Association.
Additionally, the products or services have not been
evaluated and their listing or advertising should not
be construed as a recommendation or endorsement
of these products or services.
StrokeAssociation.org
16
Improving Stroke Care
Healthcare quality improvement programs
from the AHA/ASA are changing the way
acute stroke is treated in hospitals by
taking to heart the dictum “Time lost is
brain lost.”
20Improving Memory
We talked to rehab psychologist Janet
Spradlin and three survivors about how to
deal with post-stroke memory challenges.
Their solutions spanned the spectrum
from no-tech to hi-tech.
1 - 8 8 8 - 4 S T R O K E
20
Departments
2 Stroke Notes
6 Readers Room
18Everyday Survival
Sometimes long-term
care is the best solution.
We outline the options.
21Life at the Curb
John Kawie goes
antiquing.
( 1 - 8 8 8 - 4 7 8 - 7 6 5 3 )
I wish I could learn more about spasticity.
I wish there were tips for caregivers.
I wish I could find the support I need.
I wish I understood my treatment options.
I wish I was more prepared to talk to my doctor.
I wish I could hear from others living with spasticity.
I wish there was more information about what to expect.
Explore your wishes at
SpasticityAnswers.com
A stroke can disrupt the brain’s ability to send messages properly to the muscles, causing the muscles
to contract and spasm, resulting in stiffness and pain. This condition is called spasticity.
SpasticityAnswers.com is dedicated to educating people affected by spasticity
about the condition and its treatment options.
I:wish
Create your Wish List Discussion Guide
Create your treatment Wish List
to help prepare to talk to your doctor.
Find out more about spasticity • Learn about treatment options
Read stories from people living with spasticity • Get information for caregivers, and more!
©2010 Allergan, Inc., Irvine, CA 92612 All rights reserved. www.SpasticityAnswers.com
SpasticityAnswers.com is not intended to be a substitute for professional medical advice, diagnosis,
or treatment. Always seek the advice of your physician or other qualified healthcare provider with any
questions you may have regarding a medical condition.
APC54ME10 107751
Spasticity
A:nswers
S T R O K E N OT E S | Connecting You to the World
PregnancyRelated Stroke
Rate of stroke increasing among women
during, soon after pregnancy
he stroke rate for pregnant women
and those who recently gave birth increased
alarmingly over the past dozen years,
according to research reported in Stroke:
Journal of the American Heart Association.
Researchers gathered data from a large
national database of 5 to 8 million discharges from 1,000
hospitals and compared the rates of strokes from 1994-95 to
2006-07 in women who were pregnant, delivering a baby and
who had recently had a baby.
Pregnancy-related stroke hospitalizations increased 54
percent, from 4,085 in 1994-95 to 6,293 in 2006-07.
“I am surprised at the magnitude of the increase,
which is substantial,” said Elena V. Kuklina, M.D.,
Ph.D., lead author of the study and senior service fellow
and epidemiologist at the Centers for Disease Control
and Prevention’s Division for Heart Disease and Stroke
Prevention in Atlanta. “Our results indicate an urgent need
to take a closer look. Stroke is such a debilitating condition.
We need to put more effort into prevention.
“When you’re relatively healthy, your stroke risk is not
that high,” Kuklina said. “Now more and more women
entering pregnancy already have some type of risk factor
for stroke, such as obesity, chronic hypertension, diabetes or
congenital heart disease. Since pregnancy by itself is a risk
factor, if you have one of these other stroke risk factors, it
doubles the risk.”
For expectant mothers, the rate of stroke hospitalizations
rose 47 percent. In pregnant women and in women who had
2
STROKECONNECTION
November | December 2011
a baby in the last 12 weeks (considered the postpartum
period), the stroke rate rose 83 percent.
Pregnant and postpartum women ages 25 to 34 were
hospitalized for stroke more often than those who were
younger or older.
High Blood Pressure Prevalence Among Pregnant or
Recently Pregnant Women Who Suffered Strokes
1994-95
2006-07
% of women with HBP
prior to giving birth
11.3%
17%
% of women with HBP
at or near delivery
23.4%
28.5%
% of women with HBP within
12 weeks after delivery
27.8%
40.9%
Furthermore, high blood pressure was more
prevalent in pregnant women who were hospitalized
because of stroke.
A major problem is that pregnant women typically aren’t
included in clinical trials because most drugs pose potential
harm to the fetus. Therefore, doctors don’t have enough
guidance on which medications are best for pregnant
women with an increased risk for stroke.
“We need to do more research on pregnant women
specifically,” said Kuklina, who found only 11 cases
of pregnancy-related stroke in her review of previously
published literature.
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How Aphasia Feels
New Internet resource for understanding
communication problems
new, free Internet resource
is now available that explains
aphasia. Through a series of
simulations, it shows what
it might be like to have this
language disorder that affects more than 1 million
people in the United States. For example, users
can hear a story read with some words missing
or distorted to simulate what it might be like
for those with aphasia who may not understand
all words that are said to them. In another
simulation, the user is asked to write the word
that goes with a particular picture (like “dog”).
However, what appears on the screen is a related
word (“cat”). This demonstrates how people with
aphasia may see something, know what it is, and
intend to write the correct word, but have the
experience of writing a related word.
The simulations are intended to educate the
general public about aphasia. Although the disorder
affects more people than does Parkinson’s disease,
multiple sclerosis or cerebral palsy, less than 10
percent of people in
a recent survey knew
about aphasia.
The simulations
can also be used in the
training of students,
nurses and other
health professionals
to improve
communication with
aphasia patients.
Even family members
and friends of those
who have aphasia
can benefit from the
simulations, which
were developed by Dr. Jackie Hinckley, associate professor
emeritus in Communication Sciences & Disorders at the
University of South Florida, and Aphasia Corner, an online
service for speech rehabilitation for people with aphasia.
Aphasia Simulations can be viewed at aphasiacorner.com/
aphasia-simulations/
Stroke Plaque Identified
Genetic “signature” may be key to future treatment
talian researchers may have
identified a genetic “signature” for
dangerous plaque that leads to stroke.
In the study, which was published in
Stroke: Journal of the American Heart
Association, researchers identified a pattern of
five microscopic bits of genetic material called
microRNAs (miRNAs) — a genetic “signature”
— present only in the plaque of patients who had
experienced a stroke.
Researchers studied 31 patients who had plaque
build-up but had not had a stroke and 22 patients
who had plaque and had experienced a stroke.
This is the first report to suggest that miRNAs may
provide an important clue about which plaque in
artery walls is the most dangerous.
4
STROKECONNECTION
November | December 2011
Plaque is made up of fat,
cholesterol, calcium and
other substances found
in blood. Plaque can be
“stable” or “unstable.”
Some types remain as
a bump or streak on the
artery wall, while others
cause clots that lead to a
heart attack or stroke.
By identifying the specific
miRNA signature, researchers
hope to find new ways to prevent and
treat stroke. For example, new medicines can be
designed to hone in on plaques with the potential
to rupture.
I wish I could learn more about spasticity.
I wish there were tips for caregivers.
I wish I could find the support I need.
I wish I understood my treatment options.
I wish I was more prepared to talk to my doctor.
I wish I could hear from others living with spasticity.
I wish there was more information about what to expect.
Explore your wishes at
SpasticityAnswers.com
A stroke can disrupt the brain’s ability to send messages properly to the muscles, causing the muscles
to contract and spasm, resulting in stiffness and pain. This condition is called spasticity.
SpasticityAnswers.com is dedicated to educating people affected by spasticity
about the condition and its treatment options.
I:wish
Create your Wish List Discussion Guide
Create your treatment Wish List
to help prepare to talk to your doctor.
Find out more about spasticity • Learn about treatment options
Read stories from people living with spasticity • Get information for caregivers, and more!
©2010 Allergan, Inc., Irvine, CA 92612 All rights reserved. www.SpasticityAnswers.com
SpasticityAnswers.com is not intended to be a substitute for professional medical advice, diagnosis,
or treatment. Always seek the advice of your physician or other qualified healthcare provider with any
questions you may have regarding a medical condition.
APC54ME10 107751
Spasticity
A:nswers
STROKECONNECTION
November | December 2011
5
R E A D E R S R O O M | Connecting You to Others
Love Me Tender
Survivor David Layton plays his hammer dulcimer.
he year was 1956 and my dad had only taken
our family to movies at drive-in theaters,
where my brother and I usually fell asleep in
the back seat after watching the news strip
and the cartoon. I don’t remember seeing any
full-length films prior to Elvis Presley’s film
debut in “Love Me Tender,” which was released in November
and opened at the Carolina Theater in downtown Greensboro,
N.C. Going to the Carolina was a special event in our family.
I knew this was going to be something special when we
had to dress up in our Sunday clothes, and Dad wore his
suit and tie. The theater was impressive — a huge crystal
chandelier overhead and statues of naked women in lighted
alcoves along the walls. I wondered if this was all right, but
Mother said it was, because it was “art.” The screen was
hidden behind a beautifully embroidered curtain that opened
as the movies started. My brother and I got to share a box of
popcorn — a really special treat. I forget who was in charge
of the drink, but it was probably my older brother since I was
only 12 and subject to spilling things on our dress clothes. I am
66 now and once again subject to spilling my soft drink while
eating popcorn at the theater.
I had shown some interest in playing Dad’s guitar prior to
“Love Me Tender,” but the flame of desire was lit after seeing
Elvis play and sing on the big screen. After we got home, Dad
6
STROKECONNECTION
November | December 2011
showed me the three chords — D, G and A7 — that Elvis
used as he sang the title song. With those three chords, I started
an adventure that lasted for 42 more years. With my guitars,
and there were many, I played through country/western, ’50s
rock and roll, ’60s folk music, plus whatever was popular and
my audiences wanted to hear. I always felt like guitar playing
would continue into my retirement years, but my strokes in
1999 ended that chapter of my life at age 55. I tried playing
the guitar with just one hand and a capo, but the results were
unsatisfactory, so in the first 10 years of living with left-side
paralysis, I consoled myself by saying, “I had a good run, 42
years of singing and playing.” But the desire was still there.
Last year while riding around at a holiday craft fair in my
powered wheelchair, I was drawn to the beautiful sounds of
Christmas music being played on a stringed instrument that
was unknown to me. After telling my wife to go on shopping
without me, I spent the next 45 minutes enjoying the beautiful
sounds of a hammer dulcimer. Although this instrument is
normally played by striking the strings with a stick, called a
hammer, in each hand, I could see the potential for playing
it with only one hand. After six months of thinking about
it, I bought a basic hammer dulcimer in June 2010. We had
Christmas music all year round as I learned to play this new
instrument. Although many types of music can be played on
the dulcimer, I think the hammer dulcimer sound is best suited
for Christmas hymns and carols. “Will Christmas ever come?”
I kept wondering.
Since last Christmas I have added movie theme songs to
my dulcimer repertoire: “Sound of Music,” “South Pacific,”
Tara’s theme from “Gone with the Wind.”
Regardless of which songs I play in the future, the
important fact now is that at age 66, I am opening a second
chapter in my life of entertaining through music! So thanks,
Dad. Thanks, Elvis. The flame is still burning and “The Beat
Goes On.” Go Grandpa!
We are never too old to learn and accept new challenges.
Just when you think one door has been closed in your life,
God opens another one. Thank you, Lord.
David Layton, Survivor
Summerfield, N.C.
Editor’s Note: If you want to see a video of David playing his
hammer dulcimer, visit singlehandedliving.com/music.html
Survivor Denise DeAntonio cuts a rug at her brother-in-law’s wedding.
I Could Have
Danced All
Night
wo years ago, I had recently been
discharged from a rehabilitation hospital
where I received intensive therapies. I
had a near fatal hemorrhagic stroke in
December 2008 and was hospitalized
until the following March. When I came
home from the rehabilitation hospital my walking was
limited, and I used a wheelchair at times. I also wore a
helmet because a portion of my skull had been removed
to reduce swelling after the stroke. I still have difficulty
with walking and balance.
The other day I attended my brother-in-law’s
wedding. There was music and dancing. I expected to
be watching others dance, but I danced. I was dancing
for the first time since my stroke. I danced to fast
songs and slow songs. Like many parts of my recovery,
my dancing didn’t look pretty. I couldn’t do it all
alone; sometimes someone held my hand so I wouldn’t
fall. As difficult as the dancing and rehabilitation were,
I am happy and grateful I am able to participate and
not just observe.
Denise DeAntonio, Survivor
Fleetwood, Pa.
STROKECONNECTION
November | December 2011
7
C OV E R S TO R Y
Stroke survivor
Kevin Sorbo with
sons Braeden (top)
and Shane in 2004.
Photograph courtesy
of Sam Sorbo.
8
STROKECONNECTION
November | December 2011
BY JON CASWELL
et’s face it, if Hercules can have
a stroke, it should be no surprise
when it happens to mere mortals.
For seven years, on the popular
TV show Hercules, Kevin Sorbo
embodied the legendary half-god,
half-man character from Greek
mythology. In real life, however, he
had three strokes, at age 38.
In his book, True Strength, Kevin recounts the day in
September 1997 when all three ischemic strokes happened.
Most of the publication, however, is an account of his long
(and continuing) recovery. Two of the strokes occurred in the
balance area of his brain and caused vertigo and dizziness
that lasted for years. The third affected his vision: “I still
have a 10 percent vision loss 14 years later,” Kevin said.
The strokes happened before the sixth season of Hercules,
but the producers decided Kevin simply could not be replaced;
he had played the character so long that he was Hercules. The
final two seasons would bring lots of complications for Kevin.
His vertigo, daily migraines, weakness and lack of balance —
not to mention the 20 pounds he’d lost from his bodybuilder
physique — restricted his range of movement, and set crews
needed to adjust camera angles to conceal his physical
limitations. In addition, they used doubles where possible. He
went from 12 hours a day on the set to one hour.
“I hated having someone else do all my stunts and fight
scenes,” he said. “That was such a shock to my ego because
that’s what I loved to do the most.”
Since high school, he had worked out for two hours
nearly every day. And in the five years prior to his strokes,
Kevin maintained a grueling work routine of 18-hour days
up to six days a week, 10 months a year. That schedule takes
some of the glamour out of being a TV star.
For many stroke survivors, life changes completely in
an instant, never to be recovered. Kevin eventually got his
life back, but he had to work at it for a long time. For a year
afterward he had crippling panic and anxiety attacks.
“I know a lot of it came from feeling inferior,” he said.
“I felt everyone was looking at me differently. I couldn’t
handle being in public. I wanted to hide.”
Meditation helped him overcome these debilitating
episodes, as well as the encouragement of his wife Sam,
whom he met on the set of Hercules. It was Sam who took
him to the hospital the day of his strokes; they married
about a year later. Sam was unrelentingly positive when
Sorbo needed her most, but he admits that he didn’t always
appreciate this quality in his wife.
“I was like a rebellious teenager. I knew she was right to
be positive, but I was angry and frustrated.”
He had gone from being a lifelong athlete and
bodybuilder to someone who was unable to throw a ball
with one hand and catch it with the other.
“That describes my first day of rehab. It was devastating,”
he said.
He found that fluorescent lights, computer screens and
the food additive MSG made his symptoms worse, so
he made adjustments to eliminate them where he could.
STROKECONNECTION
November | December 2011
9
“I had to admit I
wasn’t that Kevin
anymore. It took
me a couple of
years to see it, but
the strokes woke
me up to the fact
that I needed to
change the way I
was living my life.”
Above: the Sorbo family in 2003 —
Sam, Gizmoe, and Braeden;
photo courtesy of Gordan Dumka
Opposite: Kevin and Braeden at
Santa Monica beach in 2002;
photo courtesy of Sam Sorbo
10 S T R O K E C O N N E C T I O N November | December 2011
He found acupuncture helped
tremendously. Another thing that
helped was pushing himself, whether
it was walking or staying in front of
his computer. It was a principle he’d
learned as a bodybuilder: “If you
want big muscles, you have to tear
them down and build them back,”
he said. “That’s what I did with all
my stroke deficits. I would go to the
point of exhaustion, but I knew it
would make me stronger.”
Kevin’s cranial sacral therapist
challenged him to find the gift in his
stroke. Like many survivors before
him, he had a hard time imagining
there was anything good that could
come of it. Yet looking back, he
realizes that acceptance was one of
the first lessons that his strokes taught
him. He wanted to be Hercules, to be
invincible, but when he looked in the
mirror, that wasn’t who he saw.
“I had to admit I wasn’t that
Kevin anymore,” he said. “It took
me a couple of years to see it, but
the strokes woke me up to the fact
that I needed to change the way I was living my life.”
Less than a year after Hercules ended, Kevin began Andromeda, a
sci-fi tale set far in the future, in another galaxy from Hercules. Though
that project was three years post-stroke, he was still not at 100 percent,
especially if he got exhausted. That’s why his agent inserted a clause in his
Andromeda contract that limited his work day to 12 hours “door to door.”
The first day on the set in Vancouver, he had to enforce that clause with an
over-eager director. It was an important moment in his recovery.
“I had to learn to say ‘no’ and get beyond trying to please everyone,” he
said. “Ultimately the crew loved me for it because it meant they could get
home at a reasonable hour. That allowed everyone to have a life.”
Gratitude was another lesson Kevin had to learn. A psychiatrist
suggested he practice a “gratitude prayer,” rehearsing all the things that
were good and going right in his life. He needed that refocus because the
Kevin on Caregiving…and Patience
Caregivers have a role to play in recovery, says Kevin, which
is to encourage their survivors, but he adds that patience has
to go hand in hand with the encouragement. “Sometimes
there may not be much progress, but caregivers have to stay
positive and encourage, encourage, encourage,” Kevin said.
“Push them, in baby steps at first, beyond those boundaries
that never used to be boundaries before.” And don’t take it
personally when they get angry and frustrated.
strokes had affected his emotions. He had become hypercritical,
with a temper that seemed to flare up at a moment’s notice.
“I had to learn to stop focusing on what I didn’t have and
instead be grateful for what I did have – life, a beautiful wife, a
healthy child, a successful TV show,” he said.
On the other side of gratitude and acceptance in Kevin’s story,
there is his Type A personality, which pushed him to stretch
himself in rehab and his daily routine. While these two “selves”
are diametrically opposed, they were able to coexist, Kevin says,
based on his belief
that failure is actually
a positive force
in life. He pushes
himself because he
is not afraid to fail.
In fact he has learned
to be grateful for
failure because “it is
just another chance
for me to learn. If we
don’t push ourselves,
then we must resign
ourselves to what we
have,” he said.
Kevin’s doctors
gave him the standard
line of the time, that
what you get back in
the first six months
is all that you will
recover. That was not
acceptable to him
because he was so
compromised at that
point. He describes
his state at that point as looking out from inside an aquarium with
a low humming sound in the back of his head that never stopped.
Some days the most he could do was lie on the couch.
“But I knew the only way to get better was to convince my
body to do more than it thought it could do,” he said.
Recovery is different for every survivor, but whatever
approach they take, Kevin hopes they’ll remember advice he once
received from an acting coach: The thing you fear, that’s what
you have to go up against.
“I had to decide not to live my life out
of fear anymore,” he said — fear of failure,
fear of others’ judgments, fear of what the
future might hold. “Be grateful for what
you have, and never, ever give up.”
Editor’s Note: Kevin’s book True Strength is
now available via booksellers everywhere.
Speech and Language Recovery
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WARNING
SIGNS OF STROKE:
KNOW THE
• Sudden numbness or weakness of the
face, arm or leg, especially on one
side of the body
• Sudden confusion, trouble speaking
or understanding
• Sudden trouble seeing in one
or both eyes
• Sudden trouble walking, dizziness,
loss of balance or coordination
• Sudden, severe headache with no
known cause
If you experience some or all of
these warning signs, don’t wait.
Call 9-1-1 right away.
STROKECONNECTION
November | December 2011
11
Caregiver
Guilt and
Frustration
By Jon Caswell
It’s hard to imagine a more
important role than caregiver. It is
also a role that can lead to intense
levels of guilt and frustration.
12 S T R O K E C O N N E C T I O N November | December 2011
“Caregivers feel like they’re beating their
heads against a wall. Keep a sense of humor
so you can laugh together
instead of getting angry.”
n the one hand, caregivers feel deep
satisfaction at fulfilling their personal
vows to a spouse or partner, or standing
by a family member in need. On the
other, they may feel frustrated that their
lives have been greatly altered — or taken
over altogether — by a disease that’s not
their own. We talked to three caregivers — Marylee Nunley,
Catherine Horn and Nikki Warner — as well as psychologist
Sara Palmer, assistant professor in the Department of Physical
Medicine and Rehabilitation at Johns Hopkins University
School of Medicine, about caregiver frustration and guilt.
Sources of Frustration
“My frustrations are typically related to the need for me
to adapt so much of my life to give my husband the best
quality of life,” said Marylee Nunley, age 63, of Peoria, Ill.
She had been married only four years when John, age 65, had
an ischemic stroke in September 2001. As a result, he faced
aphasia in addition to several other serious health challenges.
“I’ve been frustrated at the amount of additional responsibility
I’ve had to take on – paying bills, making all the household
decisions, managing medications, attending every doctor’s
appointment, assessing his complaints (and with aphasia, that
is challenging) as well as finding the proper resources for
diagnosis and treatment.”
Catherine Horn, 38, of Owensboro, Ky. is new to the job —
husband Scott’s stroke occurred this past June. She laments the
loss of routine because of Scott’s needs. His stroke has affected
his personality as well as caused memory loss and problems
with impulse control. “Having to repeat the same instruction
over and over wears me out,” she said.
Nikki and Shane Warner of Longview, Texas had their
first child two months after Shane’s two strokes in May
2010, at age 29. Among other things, Nikki is frustrated
by the expenses. “The expenses for medical care are just
outrageous,” she said. “We had to cash out our retirement
accounts to pay for COBRA because Shane was unemployed
at the time of his stroke.”
Obviously caregiver frustrations span a wide range. In many
cases, it is impossible for a single person to handle all aspects
of caregiving. “To alleviate frustration and stress, caregivers
usually need to get help from others — emotional support and
help with caregiving duties,” said Dr. Palmer, who is the author,
with her physician husband Jeffrey Palmer, of When Your
Spouse Has a Stroke – Caring for Your Partner, Yourself and
Your Relationship. “To ease financial
pressures, a social worker can help
you plan for the future and maximize
benefits from private and government
disability and insurance programs.”
Dr. Sara Palmer
Social workers are available at most
hospitals and rehab programs and can be located through local
Area Agency on Aging offices. Certified financial planners and
attorneys specializing in elder care and disability are another
valuable resource.
Impaired Communication
All three caregivers shared frustrations about communicating
because of aphasia. “I miss having a normal conversation that
goes back and forth and processes a situation or leads to a
decision that needs to be made,” Marylee said. “I don’t like the
burden of decisions being on my shoulders and then when the
outcome isn’t the best, I am responsible for it.”
“I miss having a two-sided conversation that doesn’t involve
a game of charades,” Nikki said.
Dr. Palmer acknowledges that aphasia is particularly
frustrating for stroke families, often more than physical
disabilities. “Caregivers feel like they’re beating their heads
against a wall,” she said. Instead of struggling with language,
she suggests using gestures, pictures and pantomimes. “Keep
a sense of humor so you can laugh together instead of getting
angry,” she said.
Marylee agreed: “Having a sense of humor about
everything helps.”
Concerns about the Future
Perhaps because they are younger, both Nikki and Catherine
are concerned about the long-term future. “I get angry about the
uncertainty of our future, even though I know it is not Scott’s
fault,” Catherine said. “I often cry when I’m alone.” She also
worries about their sexual relationship.
Nikki worries that Shane will miss the experience of
fatherhood. “I am afraid he is not going to be as active in our
son’s life as he would have been,” she said. And they face the
constant fear of another stroke because they have not been able
to identify the cause of Shane’s first stroke.
Marylee has given up worrying about the future. John has
had multiple health problems since his stroke, including over 20
ER trips in the past five years. “Healthwise, I just don’t worry
anymore,” she said. “We take what comes and deal with it. I
feel like I’m always preparing for the next health crisis.”
STROKECONNECTION
November | December 2011
13
“I’d be lying if
I said I didn’t
miss so many
elements
of a typical
marriage.”
John’s ongoing health concerns mean that he is able to do
less and less as time passes. For several years after his stroke
he drove and handled some household chores, but because of
thalamic pain he can no longer do those things or exercise. “I’d
be lying if I said I didn’t miss so many elements of a typical
marriage,” Marylee said. “John can’t tolerate movies or crowds
and eating out isn’t always pleasant, so I’ve had to accept that
anything resembling a ‘date night’ isn’t within reach.”
Cognitive and Personality Changes
Scott has experienced personality changes that concern
Catherine. “He can be so demanding and seems to lack concern
for my feelings. Sometimes I feel like I lost my husband and
have been left with someone I don’t know,” she said.
“Some survivors have personality or cognitive changes that
make it harder for them to see another person’s point of view
or negotiate a compromise,” Dr. Palmer said. In those cases,
caregivers may need to set their own rules, and simply tell their
loved one that getting help or a break is essential. “Take a look
at the Caregiver’s Bill of Rights,” she suggested. “That will
give you some pointers about what is reasonable to expect from
yourself and from your loved one.” (To read the Caregiver’s
Bill of Rights, go to caregiver.com/articles/caregiver/
caregiver_bill_of_rights.htm.)
The Importance of Respite Care
Dr. Palmer is adamant about the need for self-care.
“Whatever a caregiver’s responsibilities and obligations, it
is necessary that they take some time for themselves every
day, even if it’s only 10 minutes,” she said. Regular physical
activity helps to reduce stress and cope with frustration, as
does keeping a consistent sleep schedule and eating healthy
foods. Try to intersperse a few fun activities into every week,
such as watching a movie, working on crafts or a hobby or
playing with a pet. All of these increase feelings of wellbeing. “Remember, if you become ill, you will not be able
to help your loved one,” she said. “Enlist the help of family
members or find some form of respite care.”
14 S T R O K E C O N N E C T I O N November | December 2011
Battle of Wills
Nikki has found herself in a battle
with Shane over doing his therapy
exercises. “I seem to push him more
than he pushes himself,” Nikki
said. “I have to act like his mom to
make sure he does his homework. I
– Marylee Nunley,
also have to encourage him to push
caregiver for
himself to try new things, especially
husband John
when it comes to his right arm.”
If a survivor lacks selfmotivation to keep up with
recommended exercises or other
regular activities, it’s important to
find out if there is an underlying obstacle. If depression, fear
or anxiety is the cause, the survivor should be evaluated by a
neuropsychologist or neuropsychiatrist. When depression is
treated, Dr. Palmer says the survivor will be more motivated
and have more energy.
Other causes for not doing “homework” are cognitive
impairments – such as poor memory or inability to organize or
plan. “Depending on the extent of those problems, a caregiver
may simply remind the survivor to do his at-home therapy,”
Dr. Palmer said. “Or he or she may have to act as a ‘coach’
and schedule and supervise the therapy.” If memory is severely
impaired, you may need to frequently re-explain the reasons
why doing therapy is necessary. It may help to switch the focus
(with the help of a therapist) from “exercises” to life activities
like walking outside, gardening or working on hobbies that
work the same muscles.
If you find yourself in a battle with your loved one, where you
are both angry, it’s best to step back and try another approach.
“If a spouse caregiver is starting to feel like her partner’s mother,
“Sometimes
I feel like I lost
my husband
and have
been left with
someone I
don’t know.”
– Catherine Horn,
caregiver for
husband Scott
she needs to find another way to encourage him,” Dr. Palmer
suggested. It can help if the caregiver calmly and rationally
discusses her concerns about the survivor’s progress, and then
clearly explains how the exercises can be beneficial – if the
survivor is not too depressed or cognitively impaired.
“Praising and rewarding your loved one for doing his
therapies and for trying new things works better than criticizing
him for not doing these things,” Dr. Palmer said. Similarly,
taking a positive approach by focusing on good things that can
come from increasing activity (e.g., the survivor can get out to
social events, play with grandchildren) is more motivating than
stressing the negative consequences of not doing so.
The Crippling Emotion
Many caregivers experience guilt because they feel that
they are not doing enough for their loved ones, especially
when there is not a quick recovery. “I feel guilty when I
blame Scott for this illness even though I know better,” said
Catherine. “Sometimes I blame him for letting me shoulder the
‘everythings’ that happen every day.”
Dr. Palmer noted that guilt feelings and the conflicts that
cause them are so uncomfortable that people try to keep them at
bay by doing even more for their loved one or striving to be the
“ideal caregiver, regardless of the emotional toll it takes on them,”
she said. “To make decisions that are good for you and the person
you care for, it’s important to reduce your guilt feelings.”
One way to lessen guilt is to step back and examine
your own standards from a more objective standpoint. Try
to determine if these expectations truly make sense in your
situation. The first thing to examine: whether they are your
expectations at all. Do they belong to you? It’s easy to absorb
how other people – parents, siblings, friends – think you should
behave. Are your expectations realistic, or are you striving for
a perceived perfection? After you’ve made that assessment,
Dr. Palmer suggests resetting your priorities. “Try making a
list of all the things you are doing to help your loved one,” she
said. “Then rank the importance of your caregiving tasks —
which ones are necessary for your loved one’s well-being and
which ones are ‘extras’ that you might be doing from a sense
of obligation or a desire to be the ‘perfect’ caregiver. If you can
focus your energy on doing a good job with the essential tasks,
you may feel less guilty about skipping the ‘small stuff.’”
Some caregivers feel guilty because their loved one is
suffering, while they are not. Some try to “even the score” by
neglecting their own needs for the “good” of their loved one.
They don’t take care of themselves and act as if they don’t
deserve to feel good. To cope with these feelings, Dr. Palmer
again recommends taking a rational and more detached point
of view. “Ask yourself: Does it make sense?” Dr. Palmer said.
“You will see that if you as a caregiver feel stressed, unwell and
grumpy, this will not make your loved one feel better or take
away the difficulties of recovering from a stroke. In fact, your
loved one will do better if you are rested, happy and healthy.”
After 10 years of caregiving, Marylee has learned to handle
guilt. “When I feel pangs of guilt, I step back and look at all
I’ve accomplished since the stroke and where we’ve come and
then I know that the little situations from time to time aren’t deal
breakers,” she said. “It helps that there has never been a moment
when either of us has questioned our commitment to each other,
our unconditional love and devotion to our marriage. Many
survivor couples don’t have that, and I see how it takes its toll.”
“I am afraid
he is not
going to be
as active in
our son’s life
as he would
have been.”
– Nikki Warner,
caregiver for
husband Shane
All the caregivers acknowledged that battling through their
current situations are better than the alternative: not having their
partner at all. “When I feel overwhelmed and full of self-pity,
I remind myself how I felt the day the doctors told me my
husband might not survive the night,” Catherine said. “I cannot
imagine how my life would be without him, but I am struggling
with how to live our lives now. I am constantly reminded by
family and friends how well he is doing, but they don’t realize
how different our lives are. I am learning to be patient. I know
my husband’s heart still belongs to the man I married, but
his mind is slow to remember. When I said ‘I do,’ I meant it.
I remind myself and him that our journey began the day his
illness came into our lives, and we will continue this journey
together until the day comes that we have made a place for his
illness as a part of our lives. Then new journeys will begin as
we move forward.”
Resources for Respite Care
For respite care resources in your area, check
with your local Area Agency on Aging by visiting
eldercare.gov or calling 1-800-677-1116. The National
Respite Care Locator is another good resource and
can be found at archrespite.org.
STROKECONNECTION
November | December 2011
15
Improving
Stroke Care
By Jon Caswell
hen someone is having a stroke,
having healthcare facilities with
all of the appropriate things in
place to treat stroke effectively is
critical to minimizing death and
disability. In addition, to reduce
the chances of further strokes,
medical facilities must carefully
assess each patient and treat any underlying conditions that
increase their risk of recurring stroke. That is why the American Stroke Association joined
forces with the Brain Attack Coalition in 2000 to define
recommendations for the Primary Stroke Center Certification
Program, which is administered by The Joint Commission. The
Joint Commission evaluates stroke care provided by hospitals.
Hospitals that follow the “Recommendations for Primary
Stroke Centers” (published by the Brain Attack Coalition and
the American Stroke Association) are certified as primary
stroke centers. These hospitals have set up procedures and
protocols, including dedicated stroke teams, for delivering
emergency and acute inpatient stroke care based on the premise
that “time lost is brain lost.” The Joint Commission has
certified 845 hospitals as primary stroke centers so far. Another program from the American Heart Association/
American Stroke Association is called Get With The
Guidelines – Stroke (GWTG-Stroke). This initiative helps
hospitals improve health outcomes in stroke patients during
the acute inpatient stroke episode. Using the program’s
clinical guidelines, hospitals implement best practices, record
their results and monitor their improvement in multiple areas
of stroke care. With over 1,600 hospitals participating, GWTG16 S T R O K E C O N N E C T I O N November | December 2011
Stroke has a huge registry of data comprised of information
about the treatment of 1.7 million stroke cases.
“These two programs have transformed stroke systems of
care in the United States,” said neurologist Dr. Eric Smith, the
chair of the GWTG-Stroke Working Group. “What’s been
amazing has been the uptake of hospitals getting certified and
being evaluated for providing stroke care and improving that
care. By joining these programs these hospitals are committing
to tracking their quality of care and improving it.” From 2003
to 2009 there was a 40 percent increase in the use of the clotbusting drug tPA in eligible patients in GWTG hospitals.
“That’s been one of the biggest improvements we’ve seen. It
means a lot of patients are getting stroke care that is preventing
stroke-related disability.”
Neurologist Dr. Michael Frankel directs the Marcus Stroke
& Neuroscience Center at Grady Hospital in Atlanta. “We’ve
been using GWTG-Stroke for ten years. Early on, it was clear
that we needed to improve the consistency of care,” he said.
“The data we compile provides a great tool for feedback on
performance, allowing us to change processes, repeatedly
reassess our performance and adjust processes until our goal is
achieved. Once we started targeting the processes behind the
quality indicators, we quickly saw our performance improve.”
GWTG-Stroke is a huge registry of roughly a third of
all stroke patients cared for in the United States. There are
participating hospitals in every state, reflecting a diverse
range of hospitals, from small community hospitals to large
academic centers. “It provides a great opportunity to look at
trends in stroke care nationwide,” Dr. Smith said, who has
published several studies using GWTG-Stroke data. “The
program has looked at differences in the care of groups
Reducing the door-to-needle time is not
simple because there are many steps from the
moment someone experiences the first signs of
stroke to receiving emergency treatment.
according to age, gender
and race. It’s had the power
to examine that because of
the size of the program.”
Target: Stroke is part of
Dr. Eric Smith (l) and Dr. Michael Frankel
the GWTG-Stroke program
specifically designed to reduce door-to-needle times. “The
goal of Target: Stroke is to move the number of patients that
get tPA from about 32 percent to 50 percent,” Dr. Smith said.
“It gives hospitals tools to improve those times and we hope to
see progress toward that goal in the next several years.”
This is important because with stroke every second counts
and because tPA can only be administered within 4.5 hours of
the onset of symptoms. “We know from the treatment trials that
patients who are treated more quickly after their strokes begin
to do better and have a better response to the treatment than
patients who are treated later,” Dr. Smith said. “The earlier we
can treat, the more brain we can save.”
Reducing the door-to-needle time is not simple because
there are many steps from the moment someone experiences
the first signs of stroke to receiving emergency treatment. The
THE MOST IMPORTANT THING
Although these quality-of-care improvements are
encouraging, experts like Dr. Frankel acknowledge
there’s still much work to be done. A key factor
toward further improvement, he said, is to improve
patients’ awareness of their own symptoms.
“The most important thing patients can do is
to recognize the warning signs of a stroke and call
9-1-1,” Dr. Frankel said. “The earlier a patient asks for
help, the earlier the process begins.”
Experts cite three reasons that it’s better for
patients to arrive at the ER by ambulance rather than
on their own:
• Patients arrive at the hospital faster.
• Most ambulances (within stroke systems of
care) are required to call hospitals in advance
when transporting a stroke patient, which
mobilizes the hospital’s stroke team to ensure
expert treatment.
• Doctors and nurses respond faster to patients
arriving via ambulance.
To find a primary stroke center near you, go to
maps.heart.org/quality.
patient must get to a
stroke-ready hospital and
then receive some sort of
diagnostic scan such as
a CT scan or MRI, that
assures the doctor that it
is an ischemic stroke and
treatable with tPA. One of
the most important steps
in the process is for the
emergency medical personnel in
the ambulance to call ahead and
let the hospital know that they are
transporting a stroke patient. In some states, stroke
patients are specifically routed to primary stroke centers.
“By definition, stroke centers are required to focus on
improving the quality of stroke care,” said Dr. Frankel.
“Becoming certified as a Primary Stroke Center by the Joint
Commission was a very important part of improving care at our
hospitals. Participating in the AHA’s Target: Stroke campaign
is a great way to improve door-to-needle times.”
The door-to-needle time is not some abstract goal. Statistics
drawn from the GWTG-Stroke registry show that every
15-minute reduction in door-to-needle time was associated
with a 5 percent lower risk of mortality.
In addition to increasing the number of patients getting
tPA, there have been other improvements in stroke care in
GWTG-Stroke hospitals, including an increase in prescribing
preventative treatments, like anti-thrombotics (for prevention
of recurrent strokes) at discharge as well as a 50 percent
increase in smoking cessation.
In a development that bodes well for the future, the percentage
of graduating neurology residents comfortable treating stroke
with tPA has increased from 73 percent in 2000 to 94 percent in
2010. Furthermore, 95 percent in 2010 had used tPA compared to
80 percent in the earlier survey. Of the 95 percent who had used
tPA, 59 percent reported delivering it at least once without direct
faculty supervision. This study was not related to GWTG-Stroke,
but shows professional interest in neurological training in treating
acute stroke as a medical emergency.
“GWTG-Stroke lets hospitals check via the Internet how
they’re doing on different measures of stroke care,” Dr. Smith
said. “That allows the hospitals to look at how they’re doing,
implement improvements and then check in to see if they’re
getting better. We’ve seen a lot of improvement over the years,
and we think this is enabling a continuous cycle of quality
improvement that lets hospitals get better rapidly.”
STROKECONNECTION
November | December 2011
17
E V E RY DAY S U R V I VA L | Connecting You to Helpful Ideas
Long-Term
Care Options
By Jon Caswell
What is Long-Term Care?
Long-term care comprises a variety of services that
include medical and non-medical care. Most long-term care
assists people with activities of daily living like dressing,
bathing and toileting (called custodial or non-skilled care).
Skilled nursing care involves delivery of medically necessary
procedures, such as drawing blood or dressing wounds. There
is a continuum of options for survivors who require some
type of long-term care.
Board and Care Homes
here are various reasons
why a spouse or family
member may be unable to
care for a stroke survivor
at home. For example, they could
have their own health challenges or
disabilities, or they may be advanced
in age. In cases like these, long-term
care may be the best option for survivors and their families. Depending
on the survivor’s needs, there are
several options to investigate.
18 S T R O K E C O N N E C T I O N November | December 2011
One option for people who cannot live on their own but
do not need skilled nursing care is a group living arrangement
sometimes called a “group home.” This provides help with
activities of daily living such as eating, bathing and toileting.
In some cases, private long-term care insurance and other
types of assistance programs may help pay for this option.
However, many of these homes do not receive payment
from Medicare or Medicaid and are not strictly monitored.
The monthly charge is usually a percentage of the resident’s
income. To find out more about board and care facilities in
your area, contact a local Area Agency on Aging.
Assisted Living
This group living arrangement provides help with
activities of daily living and assistance taking medicine and
getting to appointments as needed. Residents often live in
their own room or apartment within a building or group of
buildings and eat some or all of their meals in a common
dining area. Social and recreational activities are usually
provided, and many facilities also have health services. Costs
for assisted-living facilities vary widely depending on the size
of the living areas, services provided, type of help needed and
where the facility is located. Residents usually pay monthly
rent plus fees for additional services. The median rate for a
private one-bedroom apartment
in an assisted-living residence
is $2,575 per month, according
to research compiled by
several nonprofit senior living
organizations. (The median is
the midpoint, which means half
of residences participating in
the research had lower fees and
half had higher fees.)
Most assisted-living
residences charge on a monthto-month lease arrangement,
but some require long-term
contracts. Assisted living is
often less expensive than home health or nursing home care in
the same geographic area.
Base rates fluctuate depending on unit size. Base rates typically
only cover room and board and two to three meals. Additional
charges may include entrance fees up to one month’s rent, deposits
and fees for other services such as housekeeping and laundry,
though many providers include those services as well.
Continuing Care Retirement
Communities (CCRC)
These housing communities have different levels of care
based on a person’s needs. In the same community, there may
be individual homes or apartments for residents who still live
independently, an assisted-living facility for people who need
some help with daily care, and a nursing home for those who
require skilled nursing care. Residents move from one level
of care to another based on their needs but stay in the same
community.
If you are considering a CCRC, be sure to check the record
of its nursing home. The CCRC contract usually requires a
resident to use the CCRC’s nursing home when that level of care
becomes necessary. Many of the questions to ask about these
communities are the same as those to consider when choosing
a nursing home. CCRCs generally charge an “entry fee” before
you move in and then charge monthly fees. In 2004, entrance
fees ranged from $38,000 to $400,000. Monthly payments
ranged from $650 to $3,500 per month.
Nursing Homes
These facilities provide care to people who can no longer be
cared for at home or in the community. Nursing homes provide
a wide range of personal care and health services. They provide
support for activities of daily living plus skilled nursing services
beyond the ability of family members. The cost for nursing
homes varies widely depending on where they are located and
what type of care is needed.
Medicare and Long-Term Care
Generally, Medicare does not pay for longterm care. Medicare pays only for medically
necessary skilled nursing facility or home
health care. However, you must meet certain
conditions for Medicare to pay for either of
those. Most long-term care consists of support
services such as activities of daily living.
Medicare doesn’t pay for this type of care.
Medicaid and Long-Term Care
Medicaid is a state and federal government
program that pays for certain health services
and nursing home care for older people with
low incomes and limited assets. In most states,
Medicaid also pays for some long-term care
services at home and in the community. Who
is eligible and what services are covered vary
from state to state. Most often, eligibility is
based on your income and personal resources.
For information on eligibility, visit the
Centers for Medicare and Medicaid Services
website at cms.gov.
Other Resources
You can find your local Area Agency on
Aging at eldercare.gov or by calling
1-800-677-1116. You may also find more
information about long-term care options at
the Administration on Aging (AoA) website at
aoa.gov.
For information on accreditation of
nursing homes in your area, investigate the
Joint Commission on the Accreditation of
Healthcare Organizations’ (JCAHO) website at
jointcommission.org (in the top menu of the
site, choose Accreditation, then select Longterm Care) .
To find out if the nursing home component
of a particular community is accredited,
contact the Commission on Accreditation of
Rehabilitation Facilities at carf.org.
The following resources may also be helpful:
the Assisted Living Federation of America
(alfa.org); the National Center for Assisted
Living (ncal.org); and Leading Age (formerly
American Association of Homes and Services
for the Aging) (leadingage.org).
STROKECONNECTION
November | December 2011
19
Improving
Memory
By Janet Spradlin, Ph.D., ABPP
Rehabilitation Psychologist
St. Anthony Hospital Rehabilitation Center
Oklahoma City
Memory loss is a common — but nonetheless distressing — stroke deficit. Just as it
takes effort to build physical fitness, boosting brain power also takes some effort.
irst and foremost, take care of your brain! Just as a
car’s function depends on the maintenance it receives,
your brain’s function depends on how well you take
care of it. A healthier brain means a more efficient
memory. Ways to keep your brain healthy include
getting enough sleep, eating right, being physically active and
managing stress well. Optimizing blood flow and nutrients
to the brain is also important and can be done by controlling
hypertension and diabetes, and keeping your heart healthy.
1. Pay attention! A very important component of
improving your memory is to focus intently on what you are
doing. Tell yourself what it is you need to remember. Talking
your way through the task can be very helpful in addition to
breaking it down into manageable steps. If you are learning
the route to a new store in town, verbalize aloud each
segment along the way (e.g., turn right at gas station, left at
the church, etc.).
2. Challenge your brain!
Try getting out of your normal
routine and do things differently. Why not take another
route to your destination? Take up a new
hobby which you never thought you would. Try using
your non-dominant hand to do things.
3. Stay social! Research shows that engaging in
meaningful relationships and social activities contributes
to a healthy brain. Get involved with others and don’t f
orget to laugh, which has been shown to activate areas
of the brain vital to learning and creativity.
4. Use it or lose it!
Because of neuroplasticity,
“exercising” our brains can actually change neuronal
circuitry by creating new neural pathways and synaptic
connections that result in improvement of cognitive a
bilities, including memory.
20 S T R O K E C O N N E C T I O N November | December 2011
There are many ways to improve memory and these vary from
individual to individual. Here are some tips from stroke and
brain injury survivors:
liff Sandel (hemorrhagic stroke in 2008) uses his
C
cellphone alarm to remind him of appointments. In fact,
he said he had forgotten about a recent appointment until
his alarm went off about an hour beforehand. Luckily, he
made it in time! Cliff is a strong proponent of using and
challenging his brain. Prior to his stroke, he played the
piano and was an avid reader. Since both skills were affected
by his stroke, he now takes piano (and clarinet) lessons and
exercises his brain by memorizing poems and pieces of
music. Cliff also makes up memory games such as trying to
remember the names of all the NFL quarterbacks.
hris Wende (heart attack/brain hypoxia in 2008) says he
C
does Sudoku puzzles to keep his brain sharp. He also uses
his computerized calendar to remind him of appointments,
and puts things (e.g., keys, wallet, medications) in the same
place so he will know where they are. In addition, he asks
friends and family to send him reminders via email, text or
phone calls. Another trick Chris uses is to park in the
same general area, like the top floor of a parking garage. On
occasion he has activated his car alarm to find his vehicle.
anny Hill (brain stem stroke in 2006) uses a big dry
D
erase board posted on the wall to remind him of things he
doesn’t want to forget. He also keeps a notebook where he
writes things down. In addition, he exercises his brain by
using repetition and associating specific images or phrases
with what he is trying to remember. Reading and doing
puzzles also help keep his mind sharp.
L I F E at the C U R B
A Unique Perspective on Survival
by Stroke Survivor and Comedian John Kawie
Those Oldies But Goodies
was 4 a.m. and I was splashing ice-cold water
on my face, trying to shock my system back to
life, like doctors do with those electrode paddles.
Clear! Splash. Clear! Splash. Clear! Splash.
There are three reasons to rise at this hour:
1.You’re Al Roker doing the weather on
“The Today Show.”
2.You’re in boot camp and the bugler
just blew reveille.
3.You’re my wife and you need to go antiquing
more than Lady Gaga needs a new outfit.
These shoppers are serious— they
look like grunge hunters on
safari. Instead of tracking
dangerous game they
stalk whatchamacallits.
Yep … antiquing. Maybe it’s more of a bric-a-brac
pilgrimage because we were headed to the antique
equivalent of Lourdes: The Brimfield Antique Show in
Massachusetts. It’s the size of 23 football fields, filled with
6,000 dealers selling from tents. Translation: Acres and
acres of shopping. To paraphrase Dante, “All hope abandon
ye stroke survivors who enter here!”
Thinking this was going to be an “Antiques Roadshow”
crowd, I threw on a polo and a pair of khakis to which
Marilyn gave the look. She said, “You might as well give
them your wallet and let them take whatever they want!”
Unbeknownst to me, the worse you look the better the
bargain. She tossed me some old jeans and a ripped T-shirt
from our Goodwill pile. I looked like a migrant worker from
“The Grapes of Wrath.”
We pulled into town around 8 a.m. and beheld what
LOVING
LIFE
AT THE
CURB?
holidays!
Here come the
a laugh and
Give someone
Connection
support Stroke
DVDs of
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in the proc
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John’s
, Brain Freeze,
one-man show
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more details!
looked like a convention of grunge bands. Talk about
dressing down — these guys must be getting everything
for free.
The tents made it look like those old Civil War
photographs of Gettysburg. There was total gridlock
because of the screwballs that sell from the side of the
road. They’d shoot your tires to get you to pull over.
Headboards, dressers, clocks, toilets … all scattered on
the curb like trash. It should be called Junkfield. Imagine
“Sanford & Son” on steroids. It’s a disaster area with food
vendors hawking burgers, corn dogs and fries — pass the
Drano please. If you want to have a stroke, this is
the place to do it. But beware: the most modern
medical equipment is circa 1860. They’d give you a
shot of whiskey, a bullet to bite down on, and you
can imagine the rest!
We ignored the screwballs and pulled into
one of the fields where you pay admission for the
privilege of checking out the “exclusive” junk. These
shoppers are serious — same wardrobe only with
the addition of pith helmets. They look like grunge
hunters on safari. Instead of tracking dangerous
game they stalk dainty porcelain whatchamacallits.
By noon it hit 98 in the shade and I was getting
delusional. Firearms, dishes, armoires, quilts, stoneware,
books … all started to spin. Casual browsing turned into
slack-jawed staring and drooling. When a salesman
asked prissily if I needed help, I muttered, “Yes, if I lose
consciousness, could you remind my wife I want to be
cremated?” He responded, “Of course. Coincidentally,
you’re slobbering on a $1,200 cutlery container, circa 1720.
Perfect for your ashes.” Container? It looked like a plain old
wooden box to me.
Just then I spotted the biggest bargain of the day …
$1.25 bottled water, circa Tuesday. As I savored my drink
I thought about that box and what it’s been through. In a
way, it reminded me of the amazing stroke survivors I’ve
gotten to know. We may not be what we used to be. But in
some ways we might be better..
For every Brain Freeze video sold from 8/1/10 through
7/13/15, and after the recovery of startup costs, Parma
Recordings will donate 17% of the retail sales price to
the American Stroke Association. Brain Freeze contains
adult language and situations that may not be suitable
for all audiences.
Read John’s personal stroke story, “Life is at the Curb,”
from the September/October 2003 issue of Stroke
Connection at StrokeAssociation.org/strokeconnection.
For booking information, contact John at [email protected].
S T R O K E C O N N E C T I O N November | December 2011
21
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“PoifGor gentle true-life
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The hilarious live DVD from comedian
and stroke survivor John Kawie
At the age of 47 and on the cusp of the breakthrough that is every
artist’s dream, the comedian John Kawie suffered a devastating
stroke which he thought would derail his career…and life. With
the sardonic wit that landed him gigs as a writer/contributor for
comedians such as Bill Maher, Dennis Miller, and David Brenner,
John focused on his experiences with the stroke and created
BRAIN FREEZE, a hysterical, poignant, and affirmative journey
through the bumpy road to recovery and beyond. Recorded live at
the Gotham Comedy Club in New York City in front of a rollicking
full house, BRAIN FREEZE is sure to delight those who know just
how healthy a laugh can be – and to help teach us all that (to
quote John) life is indeed at the curb!
A portion of the proceeds go to the
American Stroke Association*
John Kawie
Brain
Freeze
www.brainfreezedvd.com
Filmed live at the Gotham
Comedy Club, new York
City on april 24, 2010
* For every Brain Freeze video sold from 8/1/10 through 7/13/15, and after the
recovery of startup costs, Parma recordings will donate 17% of the retail sales price
to the american Stroke association. Brain Freeze contains adult language and
situations that may not be suitable for all audiences.
Big Round Records | 861 Lafayette Road, Suite 6B | Hampton, NH 03842 | 603.758.1718 | bigroundrecords.com