American Heart Association - American Stroke Association

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July/August 2004
FEATURE STORY
Tough Work If You Can Get It
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Uncovering opportunities and barriers
in going back to work
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ARTICLES
Knight Jousts With Stroke
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The nine lives of survivor Sir Barry Simons
Timeline of Recovery:
A Mother’s Journal
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A caregiver’s walk through year one
Why Not Comply? Part II
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Part two of a two-part series on medical compliance
Reading Rehab
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Sound solutions for improving reading
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D E PA RT M E N T S
Letters to the Editor
Stroke Notes
Readers Room
Everyday Survival
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Staff and Consultants
Jon Caswell, Editor/Writer
Copyright 2004 American Heart Association ISSN 1047-014X
Ellen Magnis, Vice President,
American Stroke Association
Emily Springer, Assistant Editor/
Research Coordinator
Karen Clapper, Director,
Strategic Initiatives
Pierce Goetz, Art Director
Stroke Connection Magazine 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 Managing Editor.
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 should not be construed as a recommendation or endorsement of
these products or services.
Debi McGill, Editor-in-Chief
1-888-4STROKE
Stephanie Ryden,
Advertising Sales
StrokeAssociation.org
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I especially enjoyed the article “Risking Success”
by Robert Gellman on page 5 of your March/April
2004 issue. Mr. Gellman showed extreme courage
and tenacity in overcoming his weakness in order to
play the guitar once again after his stroke. As a fellow
guitar player and stroke survivor, it gave me hope to
know that my talent should not be lost because of a
stroke. After all, we lose so much already!
Thank you for your publication. It makes me smile
with every issue.
Randy Gray, Survivor
Biloxi, Mississippi
Like so many others, I must write and tell you how
I appreciate your wonderful magazine. When it comes,
I sit down and devour it. I save all the issues and refer
to them time and time again.
I am 75 years young and the one thing I fear most
is a stroke. So I try to stay abreast of everything
pertaining to stroke prevention. I also have five
homebound patients who I call on. I also work parttime at Perryville Prison, so I am one busy grandma.
One of my homebounds is a stroke survivor, so I share
the marvelous stories in your magazine with her.
Please keep me on your mailing list forever. Well, at
least till I go to heaven.
Ann Faith Davis, Caregiver
Buckeye, Arizona
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I just received my first copy of Stroke Connection
Magazine and have read each article with so much
interest and encouragement. Thank you, stroke
survivors and caregivers, for such a wonderful
magazine. I really appreciate knowing about their
ordeals and stories.
My husband had a stroke on August 28, 2003, at
the age of 84. He spent two days at the hospital and
was transferred to a rehabilitation hospital where he
stayed 32 days for therapy. He left there on October
2, and we lived temporarily in the basement of our
son’s townhouse.
Then, on January 2, 2004, we moved to an
apartment that my daughter and son-in-law built for
us adjacent to their house, so that they could give us
a hand when needed. My husband had home therapy
for four months. He is now starting outpatient therapy
three times a week.
He has made some progress, walking 200 to 400
steps with a hemi-walker (in increments of 50 steps
each). But I can see that the road to even partial
recovery will be very, very long. As his wife and
primary caregiver, I have been trying to cope with the
situation. I energize myself by doing 45 minutes to
one hour of meditation, then by practicing simplified
tai chi and an exercise called Joy Through Movement
for half an hour early in the morning before taking
care of him each day. I found the article “Sit Still, Do
Nothing” quite an inspiration indeed.
I am eagerly looking forward to receiving your
next issue.
Kim Vu, Caregiver
North Potomac, Maryland
In response to Edna Jackson’s letter to the editor in
the March/April 2004 issue about her loss of taste: I
also had this problem. The only response I received
was that everybody complains about the food.
When I was able to look up the medications I was
on, I found they could have an effect on taste. Check
with your pharmacist. He may have some suggestions.
For your mouth, warm salt water, an electric
toothbrush and Listerine mouthwash may help. They
did for me.
Good luck to you. It took a couple of years for my
taste to come back, but it did.
Kay Fallin, Stroke Survivor
Mesa, Arizona
Letters may be edited for length and scientiÞc integrity.
The opinions presented are those of the individual and do not
reßect those of the American Stroke Association.
WE WANT TO HEAR FROM YOU
mail:
fax:
e-mail:
c/o Managing Editor
Stroke Connection Magazine
7272 Greenville Ave.
Dallas, TX 75231
214-706-5231
[email protected]
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Stroke Radio
Campaign
n May, the American Stroke Association and
the Ad Council launched a radio advertising
campaign targeting African Americans, who are
at greater risk for stroke than the general population. These
radio spots feature two popular African-American recording
artists, Will Downing and Kelly Price. A print campaign also
launched in May, which was American Stroke Month.
These new ads build on the success of the “I am a
Stroke!” television campaign, which launched in April
2003. That campaign, which featured five celebrities, has
become one of the most frequently requested campaigns
created by the Ad Council. Since the launch, traffic to
the American Stroke Association Web site has increased
by 126 percent over the previous year.
Messages encourage the general public to learn
to recognize a stroke and act quickly because
time lost is brain lost.
Special Cruise for Stroke Families
troke families often believe
that their traveling days are
over because of mobility
challenges. The New Jersey Stroke
Activity Center wants to put that
myth to rest. They are sponsoring
a cruise for stroke families from
September 26 — October 3, 2004.
The Norwegian Dawn is a new
ship 100 percent accessible for
people with disabilities. The cruise
leaves from New York City and
will sail to Port Canaveral, Miami
Beach; Nassau in the Bahamas; and
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Great Stirrup Cay, a private island
in the Caribbean. The ship offers 10
different restaurants, but if you can’t
find what you want there, special
diets are no problem. Special
arrangements can be made for
shower chairs, ice for prescription
medicines and scooter rental. There
are also supervised activities for
children ages 2 to teens.
For more information and to
book your cabin, call Four Seasons
Travel at 1-800-531-7327.
Ask for Mary Jo.
© Ross Products Division, Abbott Laboratories
Welcome back, Sue.
We really missed you.
You’re on your way to recovery from your stroke.
Now here’s one for the road.
With #1 Doctor Recommended* Ensure® now in
reclosable bottles, everyone who needs complete,
balanced nutrition can enjoy it anywhere, anytime.
And with 24 vitamins and minerals, Ensure helps
you get the nutrition you need to stay healthy.
Drink to your health.
For a free bottle of Ensure, call 1-800 -986 -8849.†
*Among regular, high-calorie and high-protein nutritional supplements
†Limit one free bottle per household
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Early Stimulation has
Long-Term Impact
W
hen it is repeated daily, targeted stimulation
of a stroke patient’s weakened arm during
the first weeks after stroke may improve
recovery at five years, according to a study published
in Stroke: Journal of the American Heart Association.
Other studies have investigated targeted
interventions with a year of follow up, but this is the
first to evaluate them longer term.
Surprisingly, researchers found the greatest
positive effect in the most severely affected subgroup
of stroke patients, including those with severe arm
paralysis. “These results are remarkable because in
other studies, favorable results were mainly found
in patients with moderate motor deficit,” said Hilde
Feys, Ph.D., the study’s lead author and a professor
of rehabilitation sciences.
“We believe this therapy is causing a rewiring of
the brain and remapping of the cortex during the acute
phase of stroke recovery, a time in which currently
there aren’t many treatment alternatives for the arm
available,” Feys said.
The researchers investigated 100 stroke patients
treated at four rehabilitation centers in Belgium and
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Switzerland. The treated patients received one extra
30-minute session of sensorimotor stimulation of the
arm each day for six weeks, while the control group
received placebo treatment.
Those in the treatment group sat in a rocking chair
with their affected arm supported by an inflatable
splint that held it in the direction opposite to the arm’s
spastic pattern. The chair was balanced in such a way
that patients fell slightly forward during rocking and
had to use the arm to push backward. Patients in the
control group also sat in a rocking chair, but with the
arm resting on a cushion in their laps. They received
fake short wave therapy to the shoulder during rocking.
After the six-week period, all patients continued
standard rehabilitation.
The investigators made follow-up assessments at
6 months, 12 months and 5 years using two tests of
arm function. There was no difference in functionality
between the two groups at the start, but by 5 years
those who had received treatment scored significantly
higher on the assessments.
And when the researchers divided patients into three
groups — deteriorated, improved and stable — based
on changes in scores at 5 years, 90 percent of patients
in the treated group had improved versus 55 percent in
the control group.
Feys said stroke patients should be encouraged to
begin therapy on weakened arms quickly.
THANKS, CRPF
troke Connection Magazine would like to
thank the Christopher Reeve Paralysis
Foundation (CRPF) for its recent contribution
of $10,000 to support the distribution of this
issue. CRPF has granted close to $3.5 million
since 1999 through their Quality of Life Grants
program, supporting nonprofit organizations that
help improve the daily lives of people living with
paralysis. In addition to grants like this, CRPF
has awarded $42.5 million in research grants to
neuroscientists.
The Foundation recently developed the
Translational Research Fund. This new funding
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resource is intended to support the testing,
development and application of evidence-based
interventions that show strong promise of clinical
improvement in the functioning of people with
spinal cord injuries.
The foundation’s research grants are helping
scientists investigate ways to promote neuronal
growth and survival as well as to encourage the
formation of synapses, the junctions between
nerve cells. They are also evaluating drugs and
other interventions that protect against secondary
neuronal injury.
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Getting on With My Life
ARE YOU A SURVIVOR?
I
am 35 years old and have
an open mind and a sense of
humor. I am petite and look
very young. I was an office manager
in New York City and spoke six
languages: English, Persian, German,
French, Spanish and Hebrew. I was
a businesswoman and tried to be a
warm, pleasant person.
In April 1997, I had a stroke. I
Tinna Geula was angry, upset, short-tempered,
anxious and burned up. It was hard and I was frustrated. I lost a lot of friends.
My family was upset with me because I had volatile moods. My right side was
numb, and my brain lost its language ability. I didn’t speak for a year.
I would go to the gym two hours and study eight hours each day to get
better. My English has improved. I read short stories or novels and write essays
and poems and communicate with people. I understand Persian, German and
English. However, English is the only language I speak now, and it’s difficult.
My siblings have devoted themselves to me during my rehabilitation these
past seven years. They have made many sacrifices in performing this act of
love. I will be forever grateful to them.
Some of us have had a stroke
We are survivors
Some struggle to speak
Some struggle to count
Some struggle to build
sentences
Some struggle to keep
old relationships
Some struggle to make
new relationships
Some struggle to
remember things
Some struggle to make
their bodies strong again
Some struggle to…
Are you a survivor
as I have been?
Tinna Geula, Survivor • New York City
The Real “American Idols”
had a massive stroke in June 2003, and it was then I learned
about American idols — not from TV shows but by the
difference the true American idols made in my life. They work
in hospitals, rehab units, private care and nursing homes all
across the country. They are healthcare aides and other workers
who respond to a call for help. They answer the button to help
a disabled person do something they couldn’t do alone, such
as dress themselves or use the bathroom. And they do it with
graciousness and a smile, all the while treating that person with
dignity. Who are these people? You don’t need to turn on a TV
to see them. They’re the folks next door. They have names like
Gerry, Cindy, Jeanine, Koreen and Cheryl. They make a world of
difference in people’s lives.
I
Marcy Craskey, Survivor • SpringÞeld, Pennsylvania
Marcy Craskey (seated) and her fans
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— TG
Through New Eyes
y name is Ellen Rome. I had
a stroke at age 22, in March
2003. I was told I had the
worst kind of stroke — an embolic,
base-of-the-brainstem stroke. The
doctors told my father that I had a
50 percent chance of living. I had
inpatient therapy for 77 days, and
now I’m in outpatient therapy two
days a week.
I had to relearn everything,
including walking, eating, dressing,
swallowing and balancing. I went
from wearing diapers to my own
underwear; mushed up food to
eating real food; and from dragging
my leg to walking on my own. I was
in a wheelchair for a little while,
then a walker, followed by a cane,
and now I am practicing in therapy
with no cane and mostly walk with
no aid at all.
M
The stroke occurred
in the hospital while I
was being treated for
depression. I’m not
depressed anymore after
dealing with it for four years.
I don’t know where it went
but I’m not complaining.
I’m like the opposite of
depressed; I couldn’t be
Ellen Rome
happier. I see life through
new eyes. I am planning to
return to college this summer.
The stroke has actually made
my life better. Part of my outpatient
therapy focuses on cognitive
therapy, where I learn strategies
to use when I go back to school.
I’m going to start driving therapy
soon and will have to learn with the
gas and brake on the left. It’s an
adapter they put on the car.
I’m looking forward to gaining
more independence. It’s like I’m 16
again. I have made a lot of friends,
lost 40 pounds and stopped doing
bad habits. I’m 23 years old now
and hopeful about the future and
what life has to offer. I look at
everything in a new way.
Ellen Rome, Survivor
Kingston, Pennsylvania
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War’s a Piece of Cake
I
had a stroke — they said it was a “mild” one
— and a week later, while still in the hospital,
I put my feelings on paper, hence this poem.
The nurses on the rehab ward framed a copy and
hung it on the wall. I feel privileged to bowl, drive
and dance again. I thought I was indestructible and
am thankful for a second chance. Two wars and 30
years of service was a piece of cake compared to a
stroke, even a mild one.
17 APRIL 2003
It came out of the blue,
Changing everything I know how to do.
Things that were taken for granted, like to tie
a shoe, walk a line,
Even with help wasn’t always as fine.
Luxuries like a shower alone,
For that you’ll have to wait until you get home.
Meals by the clock,
No long walks around the block.
Can’t jump up and do my thing,
More like a bird with a broken wing.
A belt around your waist, a walker to use.
Rules not to abuse.
You feel good, know this will pass,
Lord willing, it won’t last.
You take your first steps with a belt around your waist,
Your therapist tells you there is no haste.
Take your time, you’re doing fine.
Family and friends come by.
You can see the question, “Why you?” in their eyes.
They may not know it, but just being here
Says so much more than words, that they came.
The frustration makes you want to cry
As you keep asking yourself “why?”
Feeling sorry for yourself is not the answer.
And you must not accept defeat, but know
in your heart
Sandra and Charles Ballard
That this is only a small part
Of a new life for you.
One in which you can excel.
Charles Ballard, Survivor
Lakewood, Colorado
Charles and Sandra (center) at their friends' wedding
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In Praise of Praise
oday I read the January/
February issue for
the second time and
highlighted many comments for
my benefit and to use in future
stroke support groups.
My stroke was in 1986, and it
left me with left-side weakness.
I facilitated groups made up of
delinquents for 15 years before
my stroke. For 13 years I have
facilitated a stroke support group
twice a month at a senior center.
I was fortunate to retain and
transfer the skills I developed
working with juveniles.
We frequently talk about the
need for exercise in our meetings,
so I was attracted to the article
“Finding the Strength.” It was
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very informative and inspiring. I
go to the gym at the Y at 6 a.m.
and work out for 50 minutes
Monday–Friday.
I believe that many survivors
are so damaged by their strokes
that they don’t have the ability to
develop the strength described in
that article.
In my groups I continually praise
my group members who get up,
get dressed, eat, get out the door
into the car and arrive at their
destination and have to get out of
the car and somehow get to where
they are going. And have to go
through this whole process again
when they return home.
This is not physical exercise
done in a gym, but it is all that
Gerald Bonczkiewicz
some can do, and I firmly believe
these people deserve a lot of
credit for doing what they can
do. I have found that praise is a
tremendous reinforcement.
Gerald Bonczkiewicz, Survivor
Fall City, Washington
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Knight Jousts
with Stroke
by Sir Barry Simons,
Stroke Survivor
Tolland, Connecticut
s a cat in a previous life, but fear that I've
I reckon I wa
used all nine lives.
1941 — As a schoolboy, I was riding
my bicycle along a coastal road in south
Britain when I was strafed by a German
airplane. He missed!
1943 — The roof of my house was
blown off twice and the windows blown
out three times in air raids.
1944 — I was buried in debris from a
bomb that fell outside a subway station in
London. I climbed out of that and walked
to Guildhall to sit for my bachelor’s
degree. For safety, the examination was
held in the crypt. While I was waiting
outside, a bomb fell a few yards away,
blew in the gates and us down the stairs
into the crypt. I passed!
Sir Barry Simons (left) and a fellow veteran
1944 — In the British army, I almost “bought the
farm” landing in a field in Holland. The glider
disintegrated! Though taken prisoner, I “left” after
three days with all my 30 colleagues. We had to
leave, the catering was terrible!
1955 — I was mauled by a lion that I had trained.
Also while performing in the circus, I came off a
trapeze.
1956 — I was thrown by a monster chimpanzee (175
lbs., 52" chest). My exercise was to wrestle with him,
and he could easily throw me 10–12 feet.
1956–57 — I had a couple of accidents auto racing.
1998 — I had a couple of TIAs but didn’t know what
they were. I drove myself to the hospital where a
massive ischemic stroke kicked in a few hours later. I
stopped smoking forever at that precise moment.
After a couple of weeks I was moved to a rehab
hospital in New Britain, Connecticut. The PT asked
what my goals were, and I replied, “To improve the
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grip in my left hand…and to improve my leg so I
can march in the Veteran’s Day parade.” I had never
missed a parade after my army service. As for my
goals, I can do the former but had to give up halfway
through the parade.
The speech therapist had to work particularly hard
because I write, produce and record numerous radio
commercials. We were successful because I didn’t
miss a single recording session. Happily, I’ve done
dozens since.
My health is such that I cannot work apart from the
above, and at 76 my age is against me, but I’ve just
been taken on as chaplain with a local nursing home
plus part-time in the same capacity at the hospital
where I had the stroke.
There is a strange coincidence in all this. I was to
be honored with a knighthood around the time I
had the stroke in 1998. Obviously I couldn’t travel
to attend the investiture, so everything was done by
correspondence. While I was still in hospital, the
parchment and insignia arrived, and the parchment
was dated the same day as my stroke!
A World Without Limits For
Hearts That Know No Bounds
Adaptive Equipment Financial
Assistance provides up to $1,000 towards
the cost of adaptive equipment, or up to
$200 for an alert hearing device*.
Roadside Assistance is as close as a
toll-free number, 24 hours a day, every day
of the year. Call for a tow, tire changes, fuel
delivery, lockout assistance and jump-starts.
Information on the Ford Mobility Motoring
Program can be found at:
800-952-2248
TTY 800-833-0312
www.mobilitymotoringprogram.com
Ford Credit Mobility Financing offers
flexible finance terms for persons with physical
disabilities and their families, plus financing
of both the vehicle and the adaptive equipment
for qualified customers.
The Christopher Reeve Paralysis Foundation (CRPF) encourages and supports
research to develop effective treatments and a cure for paralysis caused by spinal
cord injury and other central nervous system disorders. The foundation evaluates
and selects these research programs using councils of internationally renowned
neuroscientists and clinicians. The foundation also allocates a portion of its
resources to grants that improve the quality of life for people with disabilities.
*The 2004 Ford Mobility Motoring Program is in effect from September 1, 2003 through August 31, 2004. The Program will reimburse for the exact amount of the adaptation, up to $1,000 on adaptive equipment and up to a maximum amount
of $200 for alert hearing devices, lumbar support and running boards, when you take retail delivery of an eligible new 2003, 2004 or 2005 Ford, Mercury or Lincoln vehicle by August 31, 2004.
MA8094/2-04/5
F E A T U R E
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or many stroke survivors, returning to work is the gold standard by
which they measure their recovery.
Younger survivors with children still at home may feel they have
to help support a family. Every stroke family knows the bills don’t
stop when someone has a stroke. Survivors closer to retirement
age may work because for them a job is more than money — it’s
self-esteem. It’s a merit badge that tells the world, “See, I do have
value. I’m not a victim.”
Steve Park felt the financial pressure to work after he had
a stroke during an operation to remove an arteriovenous
malformation (AVM). He was 32, and the sole provider for his wife
Charlie and their daughters, Ashley and Lisa, who were 5 and 3.
He had made a good living in building maintenance at a country
club in Dallas, where he’d worked for five years, and he had every
intention of getting back to it.
“I did not give up on my career for the first two years after my stroke,” says Steve,
who is now a career counselor for the Epilepsy Foundation of Greater North Texas.
“My stubborn denial helped me in my rehabilitation, but I had planned on going back
to work with no noticeable deficits. I just figured if I worked hard enough, I could
overcome my stroke. Silly me.”
This is a common reaction says Dr. Alan Frol, a psychologist trained in
neuropsychology who works with patients at the Baylor Institute of Rehabilitation in
Dallas. “People can be faced with multiple challenges after a stroke, and the implications
of these changes can be difficult for the patient to assess accurately and cope with
effectively.” Patients often judge their status by their success in the structured and routine
environment of therapy. The work world is more complex and demanding.
“I have learned the hard way life’s important lessons. There are no short cuts."
“A patient’s awareness of any changed abilities can be limited by the direct
consequences of the stroke,” says Dr. Frol. “Family members and therapy staff may
be more aware of the deficits and their implications while the individual with the
stroke may minimize or deny problems.”
Steve worked hard on walking, balance and using tools. He learned to
repair equipment with one hand and, despite aphasia, returned to work
12 months post-stroke as a maintenance mechanic at the country club.
He had been working 30 hours a week for six months when he had a
series of grand mal seizures. After a week in the hospital, he
was told he could only work one day a week at the club, but
he could have a job as long as he wanted.
“The everyday demands of work,” says Dr. Frol, “require
factors like adequate energy, getting along with others, pace and
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complicating factors.”
“Giving up my job at the country club was a
setback,” Steve says, “but I wanted to get off Social
Security Disability (SSDI). Our income had been cut
by two-thirds. It caused me to re-think my plans.”
At a speaking engagement he met Dr. Sandra
Chapman, a speech pathologist and researcher at
the Center for Brain Health in Dallas. During a
conversation she told Steve that she believed he had
a communication problem, not a mental problem. “I
didn’t believe her. I had had a stroke. I was dumb.”
He told Dr. Chapman that he wanted to go to
college but he had trouble writing. He had worked
on his reading, which was still a struggle, but writing
was the real hurdle. With Dr. Chapman’s help, Steve
got a year of speech therapy at the Center for Brain
Health. “There I worked on my writing, and the
better my writing, the better my speech. During my
sessions, Dr. Chapman encouraged me to attend
community college.”
“Improvement with survivors generally begins
with their gaining a better understanding of the
consequences of their stroke on brain and behavior,”
says Dr. Frol. “It helps when they understand the
potential for recovery and its rate. Opportunities for
rehabilitation therapy and home therapy programs
foster additional recovery. They allow survivors to
experience their current skills and provide critical
information to the individual about their new self.”
Steve knew that the Texas Rehabilitation
Commission (TRC) would help pay for school, but
before he applied to TRC he wanted to see if he
could be successful in the school environment. He
took basic electronics and remedial math at a nearby
community college and was surprised that he could
re-learn
he
by Jon Caswell skills
thought
were
lost. He did well, and the rehab agency agreed to
fund his education — until he began having seizures
every few weeks. After that the agency dropped his
case.
Determined to get an education so he could get a
job and support his family, Steve and Charlie applied
for a Pell Grant, an educational loan through the
federal government. He found medication to control
the seizures. Charlie found a job, and they kept a
close eye on the budget so that he could go to school
full time.
He did so well in community college that he won
a full scholarship at Southern Methodist University,
and the family arranged student loans to pay living
expenses. TRC paid for his books each semester.
Steve finished his degree in psychology six years
after his stroke. “I chose psychology so I could
become a counselor. I could be a counselor with
aphasia, working with one hand, and the job doesn’t
require much walking. I set my sights on a master’s
in rehabilitation counseling at the University of
North Texas. Their program was designed for the
Texas Rehabilitation Commission. After I graduated
I planned to be a vocational rehabilitation counselor
with them.”
Choosing a career path that matches a survivor’s
strengths is a key component of successfully
returning to work. “Concretely discussing the
demands of work with its expectations of pace,
accuracy, handling complex situations and physical
limitations combined with an evaluation of an
individual’s strengths and weaknesses provides
valuable information about returning to work,” Dr.
Frol says.
At each of the three colleges Steve attended he
got help from counselors in the Office of Disability
Accommodations. The disability office worked out
accommodations that included time–and-a-half
on tests, extra tutoring, tape recording of lectures
and release from a foreign language requirement.
Steve talked with each professor about the effects
of aphasia and stroke in the first week of class. He
took notes on a laptop computer. “I couldn’t dream
of college without a computer and spell-checking
software,” Steve says.
Graduate school was more difficult. Although UNT
gave him a fellowship that paid tuition plus $350 a
month, the school was 40 miles away and there was
no public transportation if he should ever have a
seizure and couldn’t drive. Also, all the classes were
at night, on weekends or at a different campus even
farther away. It meant that he was away from his
family three or four nights a week for 21/2 years while
he earned his degree.
But once he graduated, Steve says, it all seemed
worth it. He got his dream job as a vocational rehab
counselor at TRC in the office where he had interned.
He was selected over 35 other applicants, some with
more education and experience.
“I had a big office and an aide, but the caseload
was overwhelming,” Steve says. “I had 130 clients
depending on me, and 75 of those had catastrophic
disabilities. I didn’t have enough of a budget to
meet their needs or time to return their phone calls.
I started losing sleep because of the stress. I would
TOUGHifWORK
you can get it
F E A T U R E
the flexibility of thought to make
independent decisions. Stroke
survivors don’t generally appreciate
those complicating factors.”
“Giving up my job at the country
club was a setback,” Steve says,
“but I wanted to get off Social
Security Disability (SSDI). Our
income had been cut by two-thirds.
It caused me to re-think my plans.”
At a speaking engagement he
met Dr. Sandra Chapman, a speech
pathologist and researcher at the
Center for Brain Health in Dallas.
During a conversation she told
Steve that she believed he had a
communication problem, not a
mental problem. “I didn’t believe
her. I had had a stroke. I was dumb.”
He told Dr. Chapman that he
wanted to go to college but he had
trouble writing. He had worked
on his reading, which was still a
struggle, but writing was the real
hurdle. With Dr. Chapman’s help,
Steve got a year of speech therapy
at the Center for Brain Health.
“There I worked on my writing, and
the better my writing, the better my
speech. During my sessions, Dr.
Chapman encouraged me to attend
community college.”
“Improvement with survivors
generally begins with their gaining
a better understanding of the
Clockwise from left: Lisa, Ashley, Steve and Charlene Park
Rehabilitation Commission (TRC)
would help pay for school, but
before he applied to TRC he wanted
to see if he could be successful in
the school environment. He took
basic electronics and remedial math
at a nearby community college and
was surprised that he could re-learn
skills he thought were lost. He did
well, and the rehab agency agreed
to fund his education — until
he began having seizures every
few weeks. After that the agency
dropped his case.
scholarship at Southern Methodist
University, and the family
arranged student loans to pay
living expenses. TRC paid for his
books each semester.
Steve finished his degree in
psychology six years after his
stroke. “I chose psychology so
I could become a counselor. I
could be a counselor with aphasia,
working with one hand, and the
job doesn’t require much walking.
I set my sights on a master’s in
rehabilitation counseling at the
"I cried when I turned in my resignation, but I just could not do the job."
consequences of their stroke on
brain and behavior,” says Dr. Frol.
“It helps when they understand the
potential for recovery and its rate.
Opportunities for rehabilitation
therapy and home therapy programs
foster additional recovery. They
allow survivors to experience their
current skills and provide critical
information to the individual about
their new self.”
Steve knew that the Texas
14
Determined to get an education
so he could get a job and support
his family, Steve and Charlie
applied for a Pell Grant, an
educational loan through the
federal government. He found
medication to control the seizures.
Charlie found a job, and they kept
a close eye on the budget so that
he could go to school full time.
He did so well in community
college that he won a full
University of North Texas. Their
program was designed for the
Texas Rehabilitation Commission.
After I graduated I planned to be a
vocational rehabilitation counselor
with them.”
Choosing a career path that
matches a survivor’s strengths is
a key component of successfully
returning to work. “Concretely
discussing the demands of work
with its expectations of pace,
If you would like to receive a
complimentary bookmark/magnifier
please visit www.novavisiontherapy.com:
select “Contact Us” and complete the
“General Contact Form.” Be sure to include
“stroke connection special offer”
in the “Nature of Request Box.”
F E A T U R E
accuracy, handling complex
situations and physical limitations
combined with an evaluation
of an individual’s strengths and
weaknesses provides valuable
information about returning to
work,” Dr. Frol says.
At each of the three colleges
Steve attended he got help from
counselors in the Office of Disability
Accommodations. The disability
office worked out accommodations
that included time–and-a-half on
says, it all seemed worth it. He got
his dream job as a vocational rehab
counselor at TRC in the office
where he had interned. He was
selected over 35 other applicants,
some with more education and
experience.
“I had a big office and an
aide, but the caseload was
overwhelming,” Steve says. “I
had 130 clients depending on me,
and 75 of those had catastrophic
disabilities. I didn’t have enough of
a budget to meet their needs or time
to return their phone calls. I started
losing sleep because of the stress.
I would wake up at 2 or 3 and
worry. I was exhausted at the end
of every day, and I knew that sleep
deprivation or disturbance leads to
seizures for me.
But even with the reduced caseload,
it was an exhausting routine that left
him little time with his family. He
began dreading work.
“It was taking all my strength
to work a 40-hour week. After
speaking with my family, I decided
it was best for all of us if I went
back on SSDI.”
But he had proven himself
a valuable asset to the epilepsy
foundation, and they wouldn’t
accept his resignation. Instead they
changed his schedule and allowed
him to work 20 hours a week. The
new schedule leaves him energy
for his family and time for other
pursuits, such as doing disability
education in a local school system.
“I feel a sense of self-worth now.
I am adding to the community
"Prejudice against people with disabilities is the biggest obstacle."
Steve Park
tests, extra tutoring, tape recording of
lectures and release from a foreign
language requirement. Steve talked
with each professor about the effects
of aphasia and stroke in the first
week of class. He took notes on a
laptop computer. “I couldn’t dream
of college without a computer and
spell-checking software,” Steve says.
Graduate school was more
difficult. Although UNT gave him
a fellowship that paid tuition plus
$350 a month, the school was 40
miles away and there was no public
transportation if he should ever have
a seizure and couldn’t drive. Also,
all the classes were at night, on
weekends or at a different campus
even farther away. It meant that he
was away from his family three or
four nights a week for 21/2 years
while he earned his degree.
But once he graduated, Steve
16
“I cried when I turned in my
resignation, but I just could not do
the job. My area manager offered
me a lighter caseload in an office
closer to home but after talking it
over with Charlie and the girls, I
still resigned.”
“Return to work with changed
abilities or greater difficulty in
meeting the demands can be more
successful when there have been
discussions on what will happen
once they return to work,” says Dr.
Frol. “This can help when things
are not as easy or take much more
time. It allows survivors to discuss
the possibilities and their ways of
coping with them.”
Steve gave the agency two
months notice, and on his last
day there he made the connection
that brought him to the Epilepsy
Foundation of Greater North Texas.
For a year he worked full time as an
employment specialist there. He had
a caseload of 40, and his previous
experience at TRC was invaluable.
without feeling wrung out, and I am
taking full advantage of my training.
“I have learned the hard way
life’s important lessons. There are
no short cuts. I finally had to realize
that everything is not wrapped up in
my employment. I thought I learned
that lesson when I had the stroke.
I will always know that I tried to
work full time, but too many things
have changed since my stroke.
Now I enjoy going to work and
giving it my all for 20 hours a week,
knowing that I will have the time
to rejuvenate later in the week. And
being able to enjoy my weekends
with my family is delightful.”
Steve’s story illustrates many
elements of the process survivors
follow in returning to work. As a
career counselor for the epilepsy
foundation, he guides people with
disabilities through the maze of
possibilities and problems that
confront them.
The first step is assessment. One
of the first things he evaluates is
whether there are emotional issues
impeding a person’s progress. People
with these needs he recommends for
counseling with a psychologist or
social worker.
“Beyond psychological problems,
there are other predictable obstacles.
Housing, finances, transportation,
medical and medication requirements.
Without addressing these issues, there
is little chance of employment.”
Like Steve, many stroke survivors
find that they can’t return to the job
they had before. This is generally a
blow to their self-esteem and can be a
good reason to get counseling from a
therapist or clergyperson. It may also
help to get career counseling from the
state rehab agency or a nonprofit group
like Steve’s, if you qualify. A career
counselor can help you develop a plan
for achieving your goals.
You also need to look for a mentor.
A mentor is someone who is honest,
objective and supportive, like Dr.
Chapman in Steve’s recovery.
After the evaluations, investigate
what you want to do. People often find
that the direction of their lives changes
after stroke. Sometimes that comes
as a result of physical or cognitive
limitations. Sometimes the insights
about yourself and your purpose come
as a result of the introspection that often
follows a life-threatening experience.
Like Steve, some find that overcoming
a disability is specialized job training
for the work they want to do.
“For some people, their stroke is
the first time they have taken time
to examine what is truly important
to them,” says Dr. Frol. “It is more
common than not that the answer
revolves around relationships
rather than specific jobs and titles.
Creating those relationships becomes
paramount.
“A person can meet those needs
and values through work or volunteer
settings, or through family or spiritual
pursuits. Work, love and play are
three important activities for people.
Sometimes these three are off
balance, with work competing with
love (family) and recreation. During
recovery survivors can rediscover who
they are and what they value. This
understanding provides the map for
future pursuits.”
Not surprisingly, a new career
generally requires new training or
further education. In most states, the
rehab agency can help survivors pay
for educational and training services.
They may pay all the costs or only
part, but they are the first place you
should investigate. They should also
be able to guide you in evaluating the
kinds of accommodations offered by
different schools.
Once you’ve investigated your
personal issues around returning to
work, and you know what you want,
have the necessary education and some
strategy for reaching it, the next hurdle
is the job market itself. You must
consider the economy, and a depressed
job market is a hard time for anyone to
find work. Obviously this is a variable
beyond anyone’s control, and it may
be hard to neutralize its effects.
Rather than become discouraged,
create a personal support system.
Encouragement is the No. 1 role of
your mentor, but you can also find
it in a stroke support group or from
members of a religious congregation.
To get your feet wet, volunteer
first. Volunteer activities will give
you insight into how you deal with
increased pace and expectations.
Volunteering has the added advantage
of expanding your network of people
who think well of you.
Networking is essential to finding
a job, but before your network can
serve you, you have to be clear about
what you’re looking for. Don’t ask
the people in your network if they
know about any jobs. Instead, ask if
they know anybody in the field you
are interested in or who works at a
company in that business. Make it
your goal to get the name and contact
information of at least one person in
your field from every person you talk
to about your job search.
17
F E A T U R E
Experts say that people rarely
find a job in their first four levels
of networking. In other words, you
may have to meet a lot of people
before you get to the person who
has the job. And remember, the
majority of jobs are never listed in
the newspaper. One way to find out
about them is to know somebody
who knows somebody. Another
way is through a temporary agency.
Online job databases are very
helpful as well, like www.monster.
com and www.careeronestop.org.
Dr. Patricia Smith, vice chair
of the Department of Physical
Therapy at the University of Texas
Southwestern Medical School,
reports that many people she
works with discover that the work
environment is much faster than
they experienced in rehab. They
may need a scooter to get around
the workplace or a voice-activated
computer, which is slower than one
18
operated by a keyboard.
Like Steve, they often don’t have
the stamina to survive the demands
of a 40-hour week. Dr. Smith says
that the people who have the most
success in returning to work either
enter a small or family-owned
business, work in childcare or out of
their homes and only work part time.
Despite the Americans with
Disabilities Act (ADA), you may
experience discrimination. Steve
recounts an experience at a job
fair. “I had introduced myself to
a human resource manager as a
career counselor for the epilepsy
foundation. And before I said
anything else, he told me, ‘We don’t
hire people with epilepsy.’ Even
with the ADA, he said that.
“Prejudice against people with
disabilities is the greatest obstacle.
Educating employers about
abilities, regardless of handicap,
seems to be the key.”
Achieving the gold standard
and returning to work after stroke
is a tough job all by itself. Stroke
families make big sacrifices while
their survivors come to terms with
their disabilities, learning ways to
overcome them and then finding
their niche in an ever-changing
economy.
On this journey, there will
be highs and lows, moments of
serendipity and dashed expectations.
Those who walk this path often
experience frustration and
confusion, but so many times, these
conditions produce the insights
that add the greatest meaning to
life. Our breakthroughs are almost
always preceded by breakdowns. If
Steve’s story has a moral, it’s this:
DON’T GIVE UP!
For the stories of more stroke survivors
returning to work, please visit our Web
site at www.strokeassociation.org.
Completing a marathon is a life-changing event.
So is a stroke.
Train To End Stroke is a marathon-training event that raises money
to fund lifesaving stroke research and education. We’ll help train
participants in 60 cities to finish a marathon or half marathon. Participants
who complete this training and reach the fundraising minimum will be
invited to travel with us to one of many exciting destinations.
Call (888) 4-STROKE to find out if this program is offered in your area. To help our efforts,
encourage family and friends to participate in this event in your honor. Learn more about
Train To End Stroke at StrokeAssociation.org.
Get Fit. Have Fun. Save Lives.
e
n
i
l
e
m
i
T
O
ur daughter Lori Walla, 35 years old, had a stroke
in August 2002. The MRI showed a large blood
clot deep in the left side of her brain with three
hemorrhages and blood covering 40 percent of the left lobe.
Lori was a court reporter in Wyoming, and Quincy,
her husband, works in the gold mines in Carlin, Nevada.
The stroke affected her speech, short-term memory and
word retrieval, but her intellect is intact. Being a court
reporter, Lori had an extensive vocabulary and the ability
to spell just about any medical and legal term. Even in
the hospital she corrected a doctor on the pronunciation
of a word. Now, she has lost her profession, income and
ability to communicate without a lot of difficulty, but she
is alive.
One Month Post-Stroke
I have become the main caregiver. I stay three weeks
at Lori and Quincy’s home in Nevada, then return to
California for one week to see my husband and my doctor.
Last February I was diagnosed with autoimmune hepatitis.
Fortunately, I am responding well to treatment.
No one in our family has had a stroke, so we are unfamiliar
with all the nuances of this situation. My cousin put it simply:
Top: Ken Edwards and Lori Walla; below: Jenny Edwards
20
“It’s like your brain is Swiss cheese. Some days you’re on the
cheese and some days you’re in the holes.”
The physical care is manageable. She walks but is
wobbly at times. She can empty the dishwasher, fold
laundry, play cribbage, write a grocery list, get online with
her computer, but she cannot tell the difference between
6 and 9. She calls some things by incorrect names — a
fire truck became a fire dragon. Her portable oxygen tank
became a pig and her cane is a crane.
Before her stroke, she sang and performed in the local
opera company, but while in the hospital she could not
sing. One day, a song from Sesame Street came to her,
“Sunny day, sweepin’ the clouds away,” and we have built
on that. This month she starts back with a voice coach at
the college.
The combativeness that she displayed in the hospital
is no longer there, but the crying is another story. She is
frustrated that she can’t communicate and realizes she may
not be able to resume her career. These are hard things to
deal with. Some days are so good, her father and I forget
that she has had a stroke. The not-so-good days make us
cry for our daughter to be as she was. Youth and a positive
attitude are on her side as well as the support from her
husband and family.
ec
R
of
o
J
u
s
'
r
r
n
e
a
h
l
ot
M
A
:
y
r
e
v
o
I stumbled across a phone number for the American
Stroke Association, and talking to the people on the
Warmline has been a great comfort to us. It lets us know
we are not alone.
Five Months Post-Stroke
We tried having a relative stay with her so I could go
back to California, but that was a disaster. Things started
well enough, but she took Lori’s emotional outbursts
personally. She let her sleep 10, 14, 16 hours a day and did
not give her medication on time. It even got to the point
where she ridiculed Lori.
I came back as soon as I could and Lori is making
progress. We got her back on the Internet. She plays
cribbage with her friend in Bishop, California. Next, we
located a voice coach at the community college. Joyce had
never worked with a stroke survivor before but was eager
to try. She is starting Lori on new music, rather than have
her get frustrated trying to remember the old. When she
asked Lori if she remembered her Italian, Lori said, “I knew
Italian?” Joyce said, “OK, just try reading the first line,”
and she read it like a champ. Joyce said, “OK, you know
Italian!” Now she is learning new arias in Italian, which has
done a great deal for her self-esteem. She was even offered a
chorus part in the upcoming production of “Oklahoma!”
Seven Months Post-Stroke
It has been interesting watching the reactions of family
and friends when they see Lori. They seem to think stroke
is like the flu, and she should be over it by now.
by Jenny Edwards, Caregiver • Auberry, California
I let her drive on a deserted road. She stayed in her lane
but kept slowing down till I thought she had gone to sleep.
She said she just forgot to keep her foot on the gas thingie!
We’ll wait awhile on the driving.
I teach computer classes at the senior center and Lori
goes with me. She has made a friend there who is also
a stroke survivor. She is older than Lori but they had an
automatic bond. Lori also joined the pinochle players. Last
week she sang for them. It was the first time she had sung
outside of the home. They applauded, I cried.
We went to the Aphasia Center of California for an
evaluation. The therapist thought Lori was doing very well.
She said if the headaches and balance problems could be
cleared up, her speech would improve. She felt the voice
coach could do more for her than speech therapy to help
her get inflection back in her speech.
Lori was making remarkable progress, then…WHAM!
We got the knock on the door at 4:30 a.m. Quincy had
been hurt in a mining accident: four fractured vertebrae,
and the talus bone, kind of the universal joint in his ankle,
was fractured in 33 places. He will be off work for a
minimum of four months with only half pay. We will all
return to my home because it is handicap-accessible as my
100-year-old father-in-law lives with us. Ken takes care
of him. In a couple more months we should qualify for a
nursing degree.
Nine Months Post-Stroke
Lori is cooking meals! She reads the recipe, shops
for the food, cooks it, and I clean up. She and Quincy
are doing so well that Ken and I took a week’s vacation,
leaving them to fend for themselves in California. Quincy’s
limitations have helped him understand what Lori has been
dealing with. Her meds have been greatly reduced, her
headaches have lessened and her balance has improved.
Lori has been working on her steno machine and doing
well except for the stamina, a major concern. As she tires,
the balance, headaches and speech difficulties come back.
21
Eleven Months Post-Stroke
We have learned a lot this past year, but sometimes I
feel that we know nothing about stroke. At times it is hard
for Lori to remember she has had a stroke. She can be 100
percent one minute and not so the next. She skims through
Stroke Connection Magazine but says it is hard for her to
read the stories without either crying or wondering why
others have recovered and she has not. I remind her that
time is on her side.
My health is improving, Quincy’s back and foot are
healing, Lori is doing well. Her medications have been
greatly reduced. She can’t be left alone for any length of
time due to impaired judgment. A phone solicitor could sell
her the Brooklyn Bridge on some days!
With direction she does great. Balance, short-term
memory and word retrieval difficulties are still with her,
improving but still there. We have found that although
exposure to new people, places and things are challenging
for her, in the long run these are what help her the most.
She still works hard on her steno machine and is looking
forward to starting a new career in closed captioning. It is
an attainable goal.
22
They came to California last week, and Lori and I went
shopping. The noise and the crowds are a challenge, but
nothing compared to the escalator. It was like teaching a
2-year-old, but she did it. One of the things we have found
that works for Lori is oxygen. She has been on three liters
since shortly after she got home from the hospital. It helps
her think and speak more clearly, especially if she is tired.
In September, Ken and I have planned a cruise to Alaska.
Quincy should be back on light duty by then, and since Lori
can’t be left alone, we are taking her with us. We are all
looking forward to this.
Twelve Months Post-Stroke
One year, one absolutely unbelievable year. Quincy is
still not back to work, and their finances are at rock bottom,
Ken’s dad passed away at 100 years old, my autoimmune
hepatitis is in remission, EEGs show Lori has slowed brain
activity, but other than the stroke, no other abnormalities.
Daily there are changes, and we deal with them. People say
what a wonderful thing I have done helping Lori, but what
would you not do for your child? We laugh more than we
cry these days. We are still “sweepin’ the clouds away.”
Is a gift annuity right for you?
(Try this little quiz to find out.)
4/04 KC-0009
True or False
T F 1. I would like to make a gift to the American Stroke
Association that would not only help the association,
but provide me with income for the rest of my life.
T F 2. I would like to receive regular, fixed payments that I can
count on.
T F 3. I would like to receive payments that may be as much or
more than I might receive from other financial arrangements.
T F 4. I would like a portion of each payment I receive
to be tax-free.
T F 5. I would like to receive an income tax charitable
deduction for my gift.
T F 6. I would like to know more about charitable gift annuities.
If you answered "True" to most or all of these questions, a gift annuity from
the American Stroke Association may fit your needs perfectly.
For a brochure about gift annuities and a confidential, non-obligatory
illustration of how this gift can benefit you, fill out and mail this form to:
American Stroke Association, Planned Giving Dept., 7272 Greenville Avenue,
Dallas, Texas, 75231-4596, or e-mail us at [email protected]. You can
also visit us at americanheart.org/plannedgiving.
Note: We urge you to consult with a qualified advisor before making a final
decision regarding any planned gift for the American Stroke Association.
Yes! I am interested in the following gift annuity illustration:
r One-life r Two-life
Amount: r $25,000 r $10,000 r $5,000
(Other) $
If funded with appreciated securities, the approximate cost basis is: $
1st Person Name
Birthdate or age
2nd Person Name
Birthdate or age
Address
City
Phone (
State
)
ZIP
E-mail
This is not an insurance product. Returns are based on rates suggested by the American Council on Gift Annuities.
Payments are backed 100% by the American Stroke Association’s own assets.
05APGAA
IAD SC 07/2004
PART II
by Jon Caswell
A
t first glance, compliance appears to be a
patient problem: If patients would just do
what they’re told, everything would be
fine. The reality is much more complex, and when
we began investigating why noncompliance is so
widespread, we found that there are many barriers.
In Part I (May/June 2004) of our two-part series, we
looked at the psychological barriers to compliance. In
Part II, we will investigate some of the challenges that
external circumstances may contribute as survivors
try to follow doctors’ orders.
External Challenges
1. Not enough time with the doctor.
In our reimbursement-driven healthcare
system, physicians’ time is at a financial premium.
Unfortunately this works against patient education,
and patients who don’t understand their treatment
or its rationale have a hard time following directions.
“Patients really want to talk to doctors,” says Dr.
Thomas Swift, president-elect of the American Academy
of Neurology and professor emeritus at the Georgia
Medical College in Augusta. “When patients share their
symptoms, they feel better, but doctors don’t get paid for
that anymore, and the patient suffers.”
3. Too many doctors.
2. Too many medications and too many
complicated lifestyle prescriptions for
diet, exercise and stress reduction.
Many stroke survivors have to take multiple medications.
This may be particularly true if an underlying condition
such as heart disease, high blood pressure or diabetes
contributed to the stroke. The more complicated the drug or
lifestyle prescription, the less likely a patient will follow it.
24
With the proliferation of specialties, patients may have
several doctors and get sometimes conflicting advice
and requirements. Few families have a central health
monitor who directs medical traffic and ensures that
patients successfully navigate the maze of therapeutic
requirements. Faced with complicated treatment plans that
don’t automatically mesh, patients often make uninformed
choices, or simply give up in frustration.
4. Cost.
Drugs are expensive, and even patients with good
insurance may find that their policy is deficient in
prescription coverage. Recently TIME reported that drug
costs represent almost a quarter of out-of-pocket medical
expenditures. Patients on fixed incomes may have to
choose between their prescriptions and other necessities.
Patients sometimes use the excuse of feeling better
or worse to stop taking a drug that strains the budget. In
an effort to stretch their medicine, they may reduce the
amount they take or the frequency, hoping it will still be
effective. But any drug not taken as directed can’t work
as expected. When patients don’t follow their treatment
plan, they can’t get maximum benefit from it.
5. Physical limitations.
Some patients cannot get to a pharmacy easily.
Even where transportation is available, some people
can’t leave their homes. And even those who are able
may occasionally be too ill to venture out. Many
elderly people lack the computer skills and equipment
to order online, or they may forget to refill their
prescriptions on time.
Solutions
1. Not enough time with the doctor.
“The most important thing is the doctor-patient
relationship,” says Dr. Swift, “and that can’t be built in
10 minutes. Friendships are key to healing. Patients’
biggest complaint is that their doctor doesn’t talk to
them. What they are really saying is, ‘My doctor won’t
be my friend.’” Short of a revolution in healthcare
reimbursement, there is little any patient can do about
that, but here are some things that may help:
Go to your appointment with written questions. Find
out as much as you can about your condition and write
down questions to ask your doctor. Keep a pad where
you store your medicine so you will have a central place
for writing down questions.
Request that a loved one be present during your
appointment to take notes. Ask if you can record
the doctor’s orders so you can review them. “This is
a sensitive area,” says Dr. Swift. “Some doctors feel
threatened. I personally don’t mind. At the very least,
the patient should write down the plan and repeat it to
the doctor.”
ONLINE PHARMACIES:
SOME SPIN A WEB OF
UNCERTAINTY . . . . . . . . .
egitimate Internet pharmacies follow a chain
of responsibility similar to brick-and-mortar
drugstores. They require confirmation from
your doctor for any drug you request, and they
let you e-mail or phone questions to a licensed
pharmacist. When you open an account,
they require insurance as well as credit-card
information. These pharmacies openly list facts
about their licensing.
L
Look for the VIPPS seal on the home page.
The Verified Internet Pharmacy Practice Sites
program is sponsored by the National Association
of Boards of Pharmacies, an umbrella group
sponsored by state pharmacy boards. Visit its
Web site at www.nabp.net for a list of approved
pharmacies.
All the big brick-and-mortar chains — CVS,
Walgreens, Eckerds, for example — have
reputable online pharmacies. The FDA does
not regulate foreign sites, and little recourse is
available to the consumer if injured or defrauded.
When evaluating a new site, read the fine print on
the Web page. That is where they are required to
list any state investigations.
Rogue sites can appear as sophisticated as
legitimate ones, but they generally won’t require
a doctor’s confirmation of your prescription.
Although they may require you to fill out a
questionnaire, there is no guarantee a doctor will
review it. Extremely cheap prices or lack of a U.S.
address should be red flags for out-of-date or
counterfeit drugs.
If you suspect a site is illegal, report it to
[email protected]. If you have suffered a
life-threatening reaction to a drug bought over the
Internet, call 301-443-1240. For milder reactions,
call 888-463-6332. Both numbers are operated by
the FDA.
Source: Consumer Reports Web site
25
2. Too many medications.
In The Essential Guide to Prescription Drugs 2004,
Dr. James Rybacki suggests several ways of simplifying
medication problems.
Create a medication map. A medication map is a
schedule covering the whole day. It plots when you take
what medicine, the dose and any other instructions, such as
nutritional support. It organizes all your medication in one
place so you see at a glance what, when and how much. A
dosing calendar is also helpful because you can check off the
date after taking your medicine.
Schedule a “brown bag” session with your doctor or
pharmacist. Put all your prescription and non-prescription
medications in a bag and take them to your doctor’s office
or pharmacy. They may find overlapping or duplicate
prescriptions from different doctors. This would also be a
good time to make a medication map. Periodic medication
reviews allow you to ask if simpler alternatives are available.
3. Too many doctors.
Appoint a healthcare gatekeeper. Find a doctor you trust
and ask him or her to serve as the ultimate arbiter of your
treatment. This way you won’t have to make uninformed
decisions about conflicting advice or therapies. Ask your
pharmacist to review all your medications for problem
interactions and then ask your primary care physician to
resolve the problem.
“A fundamental problem is that
there are different treatments from
different doctors,” says Dr. Swift.
“You can’t get away from that.
Find a doctor you trust and ask
him or her to serve as the ultimate
arbiter of your treatment.
Different doctors come to different conclusions on the
same facts. There will always be alternative ways to
treat things. No one treatment is the only way of treating
something so you must trust your physician.”
4. Cost.
Comparison shop. Investigate the prices charged for your
prescriptions at several pharmacies. Also check prices at
online pharmacies, but remember — it’s hard to verify the
credibility of Internet vendors.
Investigate Patient Assistance Programs. Most drug
companies have special programs that discount certain
drugs. They are called Patient Assistance Programs (PAP).
Who qualifies, what is required to participate and the
discount varies for each company. Individual company Web
sites can give you the specifics. Just type in the company
name in Google, and that will link you directly to the
company’s home page. For more general information on
PAPs, visit www.rxassist.org or www.needymeds.com.
Ask your doctor about lower-price alternatives.
Before you leave your doctor’s office, ask that they
check to see if your prescription is covered by your
insurance plan. If it isn’t, they may be able to switch you
to a drug that is. Tell the truth to your doctor about your
ability to pay for medication.
5. Physical limitations.
The Internet essentially brings the pharmacy to your
door. Online ordering could be the answer for anyone
with limited mobility because you get your medications
delivered to your door. Most brick-and-mortar pharmacies
have Internet ordering sites, so you don’t have to start with
a new company. If you cannot get on the Internet, ask a
trusted friend or relative to place the order for you or find
out if your physician can do it for you.
Another alternative includes finding a local pharmacy
that takes phone-in orders and delivers. And there are mailorder pharmacies such as the one operated by AARP.
S
troke survivors are often patients for the rest of their
lives, but about half of them fail to follow doctor’s
orders. Not only is that a huge waste of money
— why pay for advice you’re not going to follow — but
it’s also a wasted opportunity for stroke families to improve
their quality of life.
26
Reading Rehab
by Margaret Greenwald, Ph.D.
Member, American Speech-Language-Hearing Association
location of an individual stroke. The
brain’s left hemisphere supports most
language functions, including reading,
but the right hemisphere does have some
normal reading ability. Because of this,
a person with a left hemisphere stroke
can regain some reading ability via the
injured left hemisphere as well as the
right hemisphere.
A Variety of Forms
S
troke often produces reading difficulties. This
“acquired dyslexia” or “alexia” may occur with or
without other language challenges and even when
writing ability is intact.
The inability to read interferes with work and
recreation for many survivors, making it difficult
to follow written instructions, pay bills or use the
computer. The ease and pleasure of reading is often
replaced by effort and frustration. However, many
improve their reading through spontaneous recovery,
direct practice or compensatory strategies.
The Geography of Dyslexia
Stroke causes many different types of dyslexia. This
variety reflects two things: 1) the way normal reading
ability is organized in the brain, and 2) the size and
Silent reading can be easier than
reading aloud following stroke. This
is because word retrieval is a lingering
challenge for nearly all stroke patients,
and this difficulty in recalling words
for speech can affect reading aloud just
as it affects conversation. On the other
hand, some individuals have a hard
time recognizing written words and/or
understanding their meaning.
Certain types of words, such as
irregularly spelled words or abstract
ones, may be harder to read than regularly spelled
or concrete words. There may be a difference in a
survivor’s ability to read single words versus sentences
or paragraphs.
Some Ways Around the Reading Block
To compensate, many individuals use audiotape
resources such as Books on Tape. Instructional
materials for many hobbies and interests are available
on audiotape and videotape, and current technology lets
computers scan text and read aloud.
The reading demands of some daily activities can
also be reduced with new routines or strategies. For
example, taking recognizable product logos to the
grocery store instead of a written shopping list.
27
Some At-Home Treatment Ideas
Treatment often helps survivors with dyslexia.
Many speech-language pathologists are trained to
diagnose acquired dyslexia and can recommend
treatment or home-practice strategies appropriate for
each person’s unique pattern of dyslexia. However,
the process of reading recovery is complex and
largely depends on the location and severity of the
stroke.
The following suggestions may help survivors with
reading difficulties:
“Sounding out” letters. Individual letters or letter
combinations such as B or CH can be presented
and the survivor asked to say the corresponding
sound. In this exercise it is not correct to provide
letter NAMES. The sound should be produced. For
instance, the letter “S” makes the “ssssss” sound.
Begin with a small set of letters to sound out,
and add more letters gradually over many practice
sessions until the survivor can sound out all the
28
letters of the alphabet plus SH, CH, PH and TH.
This approach works because many English words
can be read correctly by sounding out the letters and
then blending the sounds to make a word. For some
survivors, learning to sound out even the first letter of
a word can assist word retrieval during reading.
Naming letters. Some survivors are able to
pronounce words that are spelled aloud to them.
For example, they are able to say the whole word
“boat” if someone first spells it aloud — B-O-A-T.
These individuals may learn to spell words aloud to
themselves by naming each letter.
Although some people begin using this strategy
on their own, it eludes others who have difficulty
saying the letter names. These people may benefit by
practicing saying the letter names. This may eventually
help them spell written words aloud. Although this is a
slow process, it is one way to achieve some functional
reading. Survivors who are already using this strategy
may be able to increase their reading speed by reading a
paragraph over and over.
Know the warning
signs of stroke:
• Sudden numbness or weakness of
the face, arm or leg, especially on
one side of the body
• Sudden trouble seeing in one
or both eyes
Recognizing and/or understanding whole words.
Some survivors have particular difficulty reading
whole words that cannot be sounded out, such as
“yacht” or “island.” For these people, pairing a
written word with the corresponding picture may
help them recognize the word and understand its
meaning. Here are several ways survivors can learn
to pair written words with their meanings:
• Sudden confusion, trouble speaking
or understanding
a) Read magazine or newspaper headlines and
look at the associated pictures.
Call 9-1-1 IMMEDIATELY
if you experience symptoms!
b) Surf the Internet for Web pages where words
and pictures are paired.
• Sudden trouble walking, dizziness,
loss of balance or coordination
• Sudden severe headache with
no known cause
Time lost is brain lost!
c) Watch television with written words on the
bottom of the screen.
d) Listen to an audiotape while looking at the
corresponding written words.
Note that these tasks require only silent reading,
not reading aloud.
Focusing visual attention. Some people with
acquired dyslexia have difficulty reading sentences
or paragraphs because they can’t focus their visual
attention on one word at a time. Visual distraction
can be reduced by cutting a “window” in a piece of
paper and then moving the window along a line of
text so that it can be read one word at a time.
These strategies and exercises can help survivors
with dyslexia improve their reading ability. There
is ongoing research into acquired dyslexia, and
speech-language pathologists will use this research
to develop new treatments for improving the ability
to read after stroke.
For more information or to find an ASHAcertified speech-language pathologist in your area,
call ASHA’s Action Center at 800-638-8255, email ASHA at [email protected] or visit ASHA on
the Web at www.asha.org.
29
E V E R Y D A Y
S
U
R V
C o n n e c t i n g
Y o u
I
t o
V A
H e l p f u l
L
I d e a s
Books by Stroke Survivors,
Caregivers and Healthcare
Professionals
Port in the Storm: How to Make a Medical
Decision and Live to Tell About It
Stroke Survivors! Living a
Joyful Life After a Stroke
by Cole A. Giller, M.D., Ph.D.
by Hersch Pahl
Lifeline Press®
Washington, D.C., 2004
ISBN 0-89526-132-4
Dr. Cole Giller is a
neurosurgeon and associate
professor of neurosurgery at
Southwestern Medical School
in Dallas, Texas. He has spent
the last 13 years in clinical
practice counseling patients
with neurological illnesses
on their medical decisions. In this book, he gives stepby-step advice to patients and their families who are
facing tough medical decisions.
Professional Press
Chapel Hill,
North Carolina, 2000
ISBN 1-57087-508-1
Retired naval officer Herschel
Pahl describes his life with
wife Bonnie, a stroke survivor.
Although Bonnie has aphasia
and paralysis on her right
side, she and Herschel enjoy
traveling, and go on cruises and
walks together. The book is a love story about the first 10
years of their life together after the stroke.
Who Cares: A Loving Guide for Caregivers
The Fire Within: A True Story
of Triumph Over Recovery
by Valerie L. Greene
Alex Press
Winter Park, Florida, 2004
ISBN 0-9748833-8
Once a triathlete and
successful estate planner,
Valerie Greene experienced
a stroke when she was 31
years old. The stroke affected
her left side and her speech.
Valerie tells her inspirational
story of recovery and healing.
30
by Dee Marrella
DC Press
Sanford, Florida, 2002
ISBN 0-9708444-8-4
Written by a caregiver, this
book is a journal for survivors
to express their needs and
wishes to their caregivers —
from the brand of toothpaste
and type of music they prefer
to their desires concerning
life support systems.
These book summaries are provided as a resource to
our readers. These books have not been reviewed or
endorsed by the American Stroke Association.
Dystonia: It’s in the Brain
troke survivors know how
difficult simple movements
can be. A stroke can make
signing a check, turning
a steering wheel or even opening
your eyes as challenging as scaling
a mountain. Sometimes the task is
impeded by overactive muscles, a
condition called dystonia.
Dystonia is a blanket term referring
to any abnormal contractions of
muscles, affecting anything from the
vocal chords to the feet.
Although there is no single known
cause for dystonia, researchers
suspect that the disorder stems from
a chemical imbalance in the basal
ganglia. This group of structures at
the base of the brain is involved with
voluntary limb movements.
Dystonia is the third-mostcommon movement disorder (behind
Parkinson’s disease and tremor)
and affects 300,000 people in North
America. Where Parkinson’s patients
suffer from a “paucity of movement,”
meaning that not enough muscles are
activated to complete a movement,
dystonia patients have an excess of
movement.
In other words, more muscles are
activated than needed. When too
many muscle fibers contract, the
muscle draws up and cramps. For
example, if all the muscles in your
neck contract, they twist and wrench
the neck to one side. If they don’t
release, your neck is essentially stuck
in that position.
Dystonia is not life-threatening nor
does it decrease life expectancy, but
it can significantly decrease quality of
life by forcing patients into debilitating
postures, whether a perpetually twisted
foot or a craned neck. Some people
lose their ability to speak due to the
over-contraction of muscles controlling
the vocal chords. Others may blink so
often, they’re rendered legally blind.
S
by Heather Harper
Doctors and therapists
tend to treat dystonia
symptomatically. Botulinum
toxin injections at the site
of the spastic muscle offer
temporary relief. Muscle
relaxants such as baclofen
and benzodiazepines
often cause symptoms to
subside. In severe cases,
brain surgery may be an
option. Here are a few tips
for dealing with dystonia
proactively.
DYSTO NI A
Dos and Don’ts...
• DO try aquatic therapy.
Water activities aggravate
muscles less.
• DO practice proper
alignment when relaxing
and sleeping. Try sleeping
with a pillow between
your knees to keep the
hips and back aligned.
• DO implement a stress
management plan to help those
muscles relax. Yoga and tai chi
foster relaxation, as well as improve
strength and flexibility.
• DON’T try to “correct” the spasms
or twisting with a brace or tape.
Dystonia is a neurological disorder,
so the muscles will continue to
spasm with or without orthopedic
devices.
• DON’T move the affected area in the
opposite direction. With dystonia,
your muscles are essentially fighting
each other, so twisting them back
just aggravates them more.
Currently, there are no tests to
confirm dystonia, and it is often
misdiagnosed or discounted as
a psychological disorder. If you
suspect you suffer from dystonia,
speak up. Diagnosis rests solely on
information from the patient and a
neurological exam.
Some people go years without a
diagnosis simply because doctors
often fail to consider dystonia
as a possibility. It is important to
find a doctor who is familiar with
the disorder and with the unique
movements of patients with
dystonia. Relief can’t begin until
the cause is brought to light.
• DON’T give up your normal
activities — modify instead. For
example, if you suffer from writer’s
cramp, try writing on an angled
surface or a chalkboard.
31
E V E R Y D A Y
S
U
R V
I
V A
L
R e s o u r c e s
Epilepsy Foundation
Epilepsy affects more than 2 million people in the
United States. Through research, education, advocacy
and support services, the Epilepsy Foundation helps
people affected by seizures. This agency offers tollfree information services and educational materials
as well as online support groups. On their Web site,
type in your ZIP code to find an Epilepsy Foundation
affiliate in your area. Services that may be available
include respite care, assisted living and employment
services.
http://www.epilepsyfoundation.org/
4351 Garden City Drive
Suite 500
Landover, MD 20785-7223
Phone: (800) 332-1000
Fax: (301) 577-2684
E-mail: [email protected]
Employment Services for People with
Disabilities
The Social Security Administration offers the Ticket
to Work program to help eligible Social Security
beneficiaries with a disability go back to work. Their
Web site outlines eligibility requirements for the
program. You can also call their toll-free help line to
find out if you are eligible. Their site offers a database
of employment networks across the country that can
help with job training and searching. Their site also
provides “A Guide for People with Disabilities Seeking
Employment,” which explains your rights under the
Americans With Disabilities Act of 1990.
American Stroke Association
(888) 4-STROKE (478-7653)
Fax: (214) 706-5231
www.StrokeAssociation.org
National Family Caregivers Association
Voice: (800) 896-3650
Fax: (301) 942-2302
www.nfcacares.org
Americans with Disabilities Act (ADA)
Voice: (800) 514-0301
TTY: (800) 514-0383
www.usdoj.gov/crt/ada/adahom1.htm
National Aphasia Association
Voice: (800) 922-4622
Fax: (410) 729-5724
www.aphasia.org
National Rehabilitation Information
Center (NARIC)
(800) 346-2742
www.naric.com
Friends on the Web
Brain Aneurysms Narratives
http://www.westga.edu/~wmaples/brain.html
Megan Drummond
http://www.angelfire.com/pa2/mdrummond/
mystroke.html
http://www.ssa.gov/work
Phone: (800) 772-1213 (voice)
(800) 325-0778 (TTY)
Sue Benson
http://carecure.rutgers.edu:16080/
mobilewomen/fwistakingback_a.htm
Terri Horne
http://homepages.tesco.net/~Terrihorne/
MyWEBsite.htm
32
PLAVIX ®
clopidogrel bisulfate tablets
BRIEF SUMMARY–– Please see package insert for full prescribing information.
INDICATIONS AND USAGE: PLAVIX (clopidogrel bisulfate) is indicated for the reduction of thrombotic events as follows:
• Recent MI, Recent Stroke or Established Peripheral Arterial Disease
For patients with a history of recent myocardial infarction (MI), recent stroke, or established peripheral arterial disease, PLAVIX has been
shown to reduce the rate of a combined endpoint of new ischemic stroke (fatal or not), new MI (fatal or not), and other vascular death.
• Acute Coronary Syndrome
For patients with acute coronary syndrome (unstable angina/non-Q-wave MI) including patients who are to be managed medically and those
who are to be managed with percutaneous coronary intervention (with or without stent) or CABG, PLAVIX has been shown to decrease the
rate of a combined endpoint of cardiovascular death, MI, or stroke as well as the rate of a combined endpoint of cardiovascular death, MI,
stroke, or refractory ischemia.
CONTRAINDICATIONS: The use of PLAVIX is contraindicated in patients with a hypersensitivity to the drug substance or any component of
the product, and those with active pathological bleeding such as peptic ulcer or intracranial hemorrhage.
WARNINGS: Thrombotic thrombocytopenic purpura (TTP): TTP has been reported rarely following use of PLAVIX, sometimes after a short
exposure (<2 weeks). TTP is a serious condition requiring prompt treatment. It is characterized by thrombocytopenia, microangiopathic
hemolytic anemia (schistocytes [fragmented RBCs] seen on peripheral smear), neurological findings, renal dysfunction, and fever. TTP was
not seen during clopidogrel’s clinical trials, which included over 17,500 clopidogrel-treated patients. In world-wide postmarketing experience,
however, TTP has been reported at a rate of about four cases per million patients exposed, or about 11 cases per million patient-years. The
background rate is thought to be about four cases per million person-years.
PRECAUTIONS: General: As with other antiplatelet agents, PLAVIX prolongs the bleeding time and therefore should be used with caution in
patients who may be at risk of increased bleeding from trauma, surgery, or other pathological conditions (particularly gastrointestinal and
intraocular). If a patient is to undergo elective surgery and an antiplatelet effect is not desired, PLAVIX should be discontinued 5 days prior to
surgery. Due to the risk of bleeding and undesirable hematological effects, blood cell count determination and/or other appropriate testing
should be promptly considered, whenever such suspected clinical symptoms arise during the course of treatment (see ADVERSE REACTIONS). GI Bleeding: In CAPRIE, PLAVIX was associated with a rate of gastrointestinal bleeding of 2.0%, vs 2.7% on aspirin. In CURE, the
incidence of major gastrointestinal bleeding was 1.3% vs 0.7% (PLAVIX + aspirin vs placebo + aspirin, respectively). PLAVIX should be used
with caution in patients who have lesions with a propensity to bleed (such as ulcers). Drugs that might induce such lesions should be used
with caution in patients taking PLAVIX. Use in Hepatically Impaired Patients: Experience is limited in patients with severe hepatic disease, who
may have bleeding diatheses. PLAVIX should be used with caution in this population. Use in Renally-Impaired Patients: Experience is limited
in patients with severe renal impairment. PLAVIX should be used with caution in this population.
Information for Patients: Patients should be told that it may take them longer than usual to stop bleeding when they take PLAVIX, and that
they should report any unusual bleeding to their physician. Patients should inform physicians and dentists that they are taking PLAVIX before
any surgery is scheduled and before any new drug is taken.
Drug Interactions: Study of specific drug interactions yielded the following results: Aspirin: Aspirin did not modify the clopidogrel-mediated
inhibition of ADP-induced platelet aggregation. Concomitant administration of 500 mg of aspirin twice a day for 1 day did not significantly
increase the prolongation of bleeding time induced by PLAVIX. PLAVIX potentiated the effect of aspirin on collagen-induced platelet aggregation. PLAVIX and aspirin have been administered together for up to one year. Heparin: In a study in healthy volunteers, PLAVIX did not necessitate modification of the heparin dose or alter the effect of heparin on coagulation. Coadministration of heparin had no effect on inhibition of
platelet aggregation induced by PLAVIX. Nonsteroidal Anti-Inflammatory Drugs (NSAIDs): In healthy volunteers receiving naproxen, concomitant administration of PLAVIX was associated with increased occult gastrointestinal blood loss. NSAIDs and PLAVIX should be coadministered
with caution. Warfarin: The safety of the coadministration of PLAVIX with warfarin has not been established. Consequently, concomitant administration of these two agents should be undertaken with caution. (See Precautions–General.) Other Concomitant Therapy: No clinically significant pharmacodynamic interactions were observed when PLAVIX was coadministered with atenolol, nifedipine, or both atenolol and nifedipine. The pharmacodynamic activity of PLAVIX was also not significantly influenced by the coadministration of phenobarbital, cimetidine or
estrogen. The pharmacokinetics of digoxin or theophylline were not modified by the coadministration of PLAVIX (clopidogrel bisulfate). At
high concentrations in vitro, clopidogrel inhibits P450 (2C9). Accordingly, PLAVIX may interfere with the metabolism of phenytoin, tamoxifen,
tolbutamide, warfarin, torsemide, fluvastatin, and many non-steroidal anti-inflammatory agents, but there are no data with which to predict the magnitude of these interactions. Caution should be used when any of these drugs is coadministered with PLAVIX. In addition to the
above specific interaction studies, patients entered into clinical trials with PLAVIX received a variety of concomitant medications including
diuretics, beta-blocking agents, angiotensin converting enzyme inhibitors, calcium antagonists, cholesterol lowering agents, coronary
vasodilators, antidiabetic agents (including insulin), antiepileptic agents, hormone replacement therapy, heparins (unfractionated and
LMWH), and GPIIb/IIIa antagonists without evidence of clinically significant adverse interactions. The use of oral anticoagulants, non-study
anti-platelet drug and chronic NSAIDs was not allowed in CURE and there are no data on their concomitant use with clopidogrel.
Drug/Laboratory Test Interactions: None known.
Carcinogenesis, Mutagenesis, Impairment of Fertility: There was no evidence of tumorigenicity when clopidogrel was administered for 78
weeks to mice and 104 weeks to rats at dosages up to 77 mg/kg per day, which afforded plasma exposures >25 times that in humans at the
recommended daily dose of 75 mg. Clopidogrel was not genotoxic in four in vitro tests (Ames test, DNA-repair test in rat hepatocytes, gene
mutation assay in Chinese hamster fibroblasts, and metaphase chromosome analysis of human lymphocytes) and in one in vivo test
(micronucleus test by oral route in mice). Clopidogrel was found to have no effect on fertility of male and female rats at oral doses up to 400
mg/kg per day (52 times the recommended human dose on a mg/m2 basis).
Pregnancy: Pregnancy Category B. Reproduction studies performed in rats and rabbits at doses up to 500 and 300 mg/kg/day (respectively,
65 and 78 times the recommended daily human dose on a mg/m2 basis), revealed no evidence of impaired fertility or fetotoxicity due to clopidogrel. There are, however, no adequate and well-controlled studies in pregnant women. Because animal reproduction studies are not always
predictive of a human response, PLAVIX should be used during pregnancy only if clearly needed.
Nursing Mothers: Studies in rats have shown that clopidogrel and/or its metabolites are excreted in the milk. It is not known whether this
drug is excreted in human milk. Because many drugs are excreted in human milk and because of the potential for serious adverse reactions
in nursing infants, a decision should be made whether to discontinue nursing or to discontinue the drug, taking into account the importance
of the drug to the nursing woman.
Pediatric Use: Safety and effectiveness in the pediatric population have not been established.
ADVERSE REACTIONS: PLAVIX has been evaluated for safety in more than 17,500 patients, including over 9,000 patients treated for 1 year
or more. The overall tolerability of PLAVIX in CAPRIE was similar to that of aspirin regardless of age, gender and race, with an approximately equal incidence (13%) of patients withdrawing from treatment because of adverse reactions. The clinically important adverse events
observed in CAPRIE and CURE are discussed below.
Hemorrhagic: In CAPRIE patients receiving PLAVIX, gastrointestinal hemorrhage occurred at a rate of 2.0%, and required hospitalization in
0.7%. In patients receiving aspirin, the corresponding rates were 2.7% and 1.1%, respectively. The incidence of intracranial hemorrhage was
0.4% for PLAVIX compared to 0.5% for aspirin.
In CURE, PLAVIX use with aspirin was associated with an increase in bleeding compared to placebo with aspirin (see Table 3). There was
an excess in major bleeding in patients receiving PLAVIX plus aspirin compared with placebo plus aspirin, primarily gastrointestinal and at
puncture sites. The incidence of intracranial hemorrhage (0.1%), and fatal bleeding (0.2%), was the same in both groups.
In patients receiving both PLAVIX and aspirin in CURE, the incidence of bleeding is described below.
CURE Incidence of bleeding complications (% patients)
Event
PLAVIX
(+ aspirin)*
(n=6259)
3.7 ‡
2.2
0.2
0.9
0.7
0.1
0.5
1.2
1.6
0.4
0.05
1.3
5.1
Placebo
(+ aspirin)*
(n=6303)
2.7 §
1.8
0.2
0.9
0.7
0.1
0.5
1.0
1.0
0.3
0.03
0.9
2.4
P-value
0.001
Major bleeding†
Life-threatening bleeding
0.13
Fatal
5 g/dL hemoglobin drop
Requiring surgical intervention
Hemorrhagic strokes
Requiring inotropes
Requiring transfusion (≥4 units)
Other major bleeding
0.005
Significantly disabling
Intraocular bleeding with significant loss of vision
Requiring 2-3 units of blood
Minor bleeding¶
<0.001
* Other standard therapies were used as appropriate.
†
Life threatening and other major bleeding.
‡
Major bleeding event rate for PLAVIX + aspirin was dose-dependent on aspirin: <100 mg=2.6%; 100-200 mg=3.5%; >200 mg=4.9%
§
Major bleeding event rate for placebo + aspirin was dose-dependent on aspirin: <100 mg=2.0%; 100-200 mg=2.3%; >200 mg=4.0%
¶
Led to interruption of study medication.
Ninety-two percent (92%) of the patients in the CURE study received heparin/LMWH, and the rate of bleeding in these patients was similar to the overall results.
There was no excess in major bleeds within seven days after coronary bypass graft surgery in patients who stopped therapy more than five
days prior to surgery (event rate 4.4% PLAVIX + aspirin; 5.3% placebo + aspirin). In patients who remained on therapy within five days of
bypass graft surgery, the event rate was 9.6% for PLAVIX + aspirin, and 6.3% for placebo + aspirin.
Neutropenia/agranulocytosis: Ticlopidine, a drug chemically similar to PLAVIX, is associated with a 0.8% rate of severe neutropenia (less than
450 neutrophils/µL). In CAPRIE severe neutropenia was observed in six patients, four on PLAVIX and two on aspirin. Two of the 9599 patients
who received PLAVIX and none of the 9586 patients who received aspirin had neutrophil counts of zero. One of the four PLAVIX patients in
CAPRIE was receiving cytotoxic chemotherapy, and another recovered and returned to the trial after only temporarily interrupting treatment
with PLAVIX (clopidogrel bisulfate). In CURE, the numbers of patients with thrombocytopenia (19 PLAVIX + aspirin vs 24 placebo + aspirin)
or neutropenia (3 vs 3) were similar.
Although the risk of myelotoxicity with PLAVIX thus appears to be quite low, this possibility should be considered when a patient receiving
PLAVIX demonstrates fever or other sign of infection.
Gastrointestinal: Overall, the incidence of gastrointestinal events (e.g. abdominal pain, dyspepsia, gastritis and constipation) in patients
receiving PLAVIX (clopidogrel bisulfate) was 27.1%, compared to 29.8% in those receiving aspirin in the CAPRIE trial. In the CURE trial the
incidence of these gastrointestinal events for patients receiving PLAVIX + aspirin was 11.7% compared to 12.5% for those receiving placebo
+ aspirin.
In the CAPRIE trial, the incidence of peptic, gastric or duodenal ulcers was 0.7% for PLAVIX and 1.2% for aspirin. In the CURE trial the incidence of peptic, gastric or duodenal ulcers was 0.4% for PLAVIX + aspirin and 0.3% for placebo + aspirin.
Cases of diarrhea were reported in the CAPRIE trial in 4.5% of patients in the PLAVIX group compared to 3.4% in the aspirin group.
However, these were rarely severe (PLAVIX=0.2% and aspirin=0.1%). In the CURE trial, the incidence of diarrhea for patients receiving PLAVIX
+ aspirin was 2.1% compared to 2.2% for those receiving placebo + aspirin.
In the CAPRIE trial, the incidence of patients withdrawing from treatment because of gastrointestinal adverse reactions was 3.2% for
PLAVIX and 4.0% for aspirin. In the CURE trial, the incidence of patients withdrawing from treatment because of gastrointestinal adverse reactions was 0.9% for PLAVIX + aspirin compared with 0.8% for placebo + aspirin.
Rash and Other Skin Disorders: In the CAPRIE trial, the incidence of skin and appendage disorders in patients receiving PLAVIX was 15.8%
(0.7% serious); the corresponding rate in aspirin patients was 13.1% (0.5% serious). In the CURE trial the incidence of rash or other skin disorders in patients receiving PLAVIX + aspirin was 4.0% compared to 3.5% for those receiving placebo + aspirin.
In the CAPRIE trial, the overall incidence of patients withdrawing from treatment because of skin and appendage disorders adverse reactions was 1.5% for PLAVIX and 0.8% for aspirin. In the CURE trial, the incidence of patients withdrawing because of skin and appendage disorders adverse reactions was 0.7% for PLAVIX + aspirin compared with 0.3% for placebo + aspirin.
Adverse events occurring in ≥2.5% of patients on PLAVIX in the CAPRIE controlled clinical trial are shown below regardless of relationship
to PLAVIX. The median duration of therapy was 20 months, with a maximum of 3 years.
Adverse Events Occurring in ≥2.5% of PLAVIX Patients in CAPRIE
% Incidence (% Discontinuation)
Body System
PLAVIX
Aspirin
Event
[n=9599]
[n=9586]
Body as a Whole — general disorders
Chest Pain
8.3
(0.2)
8.3
(0.3)
Accidental/Inflicted Injury
7.9
(0.1)
7.3
(0.1)
Influenza-like symptoms
7.5
(<0.1)
7.0
(<0.1)
Pain
6.4
(0.1)
6.3
(0.1)
Fatigue
3.3
(0.1)
3.4
(0.1)
Cardiovascular disorders, general
Edema
4.1
(<0.1)
4.5
(<0.1)
Hypertension
4.3
(<0.1)
5.1
(<0.1)
Central & peripheral nervous system disorders
Headache
7.6
(0.3)
7.2
(0.2)
Dizziness
6.2
(0.2)
6.7
(0.3)
Gastrointestinal system disorders
Abdominal pain
5.6
(0.7)
7.1
(1.0)
Dyspepsia
5.2
(0.6)
6.1
(0.7)
Diarrhea
4.5
(0.4)
3.4
(0.3)
Nausea
3.4
(0.5)
3.8
(0.4)
Metabolic & nutritional disorders
Hypercholesterolemia
4.0
(0)
4.4
(<0.1)
Musculo-skeletal system disorders
Arthralgia
6.3
(0.1)
6.2
(0.1)
Back Pain
5.8
(0.1)
5.3
(<0.1)
Platelet, bleeding, & clotting disorders
Purpura/Bruise
5.3
(0.3)
3.7
(0.1)
Epistaxis
2.9
(0.2)
2.5
(0.1)
Psychiatric disorders
Depression
3.6
(0.1)
3.9
(0.2)
Respiratory system disorders
Upper resp tract infection
8.7
(<0.1)
8.3
(<0.1)
Dyspnea
4.5
(0.1)
4.7
(0.1)
Rhinitis
4.2
(0.1)
4.2
(<0.1)
Bronchitis
3.7
(0.1)
3.7
(0)
Coughing
3.1
(<0.1)
2.7
(<0.1)
Skin & appendage disorders
Rash
4.2
(0.5)
3.5
(0.2)
Pruritus
3.3
(0.3)
1.6
(0.1)
Urinary system disorders
Urinary tract infection
3.1
(0)
3.5
(0.1)
Incidence of discontinuation, regardless of relationship to therapy, is shown in parentheses.
Adverse events occurring in ≥2.0% of patients on PLAVIX in the CURE controlled clinical trial are shown below regardless of relationship to PLAVIX.
Adverse Events Occurring in ≥2.0% of PLAVIX Patients in CURE
% Incidence (% Discontinuation)
Body System
PLAVIX
Placebo
(+ aspirin)*
(+ aspirin)*
Event
[n=6259]
[n=6303]
Body as a Whole–general disorders
Chest Pain
2.7
(<0.1)
2.8
(0.0)
Central & peripheral nervous system disorders
Headache
3.1
(0.1)
3.2
(0.1)
Dizziness
2.4
(0.1)
2.0
(<0.1)
Gastrointestinal system disorders
Abdominal pain
2.3
(0.3)
2.8
(0.3)
Dyspepsia
2.0
(0.1)
1.9
(<0.1)
Diarrhea
2.1
(0.1)
2.2
(0.1)
*Other standard therapies were used as appropriate.
Other adverse experiences of potential importance occurring in 1% to 2.5% of patients receiving PLAVIX (clopidogrel bisulfate) in the
CAPRIE or CURE controlled clinical trials are listed below regardless of relationship to PLAVIX. In general, the incidence of these events was
similar to that in patients receiving aspirin (in CAPRIE) or placebo + aspirin (in CURE).
Autonomic Nervous System Disorders: Syncope, Palpitation. Body as a Whole - general disorders: Asthenia, Fever, Hernia. Cardiovascular
disorders: Cardiac failure. Central and peripheral nervous system disorders: Cramps legs, Hypoaesthesia, Neuralgia, Paraesthesia, Vertigo.
Gastrointestinal system disorders: Constipation, Vomiting. Heart rate and rhythm disorders: Fibrillation atrial. Liver and biliary system disorders: Hepatic enzymes increased. Metabolic and nutritional disorders: Gout, hyperuricemia, non-protein nitrogen (NPN) increased. Musculoskeletal system disorders: Arthritis, Arthrosis. Platelet, bleeding & clotting disorders: GI hemorrhage, hematoma, platelets decreased.
Psychiatric disorders: Anxiety, Insomnia. Red blood cell disorders: Anemia. Respiratory system disorders: Pneumonia, Sinusitis. Skin and
appendage disorders: Eczema, Skin ulceration. Urinary system disorders: Cystitis. Vision disorders: Cataract, Conjunctivitis.
Other potentially serious adverse events which may be of clinical interest but were rarely reported (<1%) in patients who received PLAVIX in
the CAPRIE or CURE controlled clinical trials are listed below regardless of relationship to PLAVIX. In general, the incidence of these events
was similar to that in patients receiving aspirin (in CAPRIE) or placebo + aspirin (in CURE). Body as a whole: Allergic reaction, necrosis
ischemic. Cardiovascular disorders: Edema generalized. Gastrointestinal system disorders: Gastric ulcer perforated, gastritis hemorrhagic,
upper GI ulcer hemorrhagic. Liver and Biliary system disorders: Bilirubinemia, hepatitis infectious, liver fatty. Platelet, bleeding and clotting
disorders: hemarthrosis, hematuria, hemoptysis, hemorrhage intracranial, hemorrhage retroperitoneal, hemorrhage of operative wound, ocular hemorrhage, pulmonary hemorrhage, purpura allergic, thrombocytopenia. Red blood cell disorders: Anemia aplastic, anemia hypochromic.
Reproductive disorders, female: Menorrhagia. Respiratory system disorders: Hemothorax. Skin and appendage disorders: Bullous eruption,
rash erythematous, rash maculopapular, urticaria. Urinary system disorders: Abnormal renal function, acute renal failure. White cell and reticuloendothelial system disorders: Agranulocytosis, granulocytopenia, leukemia, leukopenia, neutrophils decreased.
Postmarketing Experience: The following events have been reported spontaneously from worldwide postmarketing experience: Body as a
whole: hypersensitivity reactions, anaphylactoid reactions. Central and Peripheral Nervous System disorders: confusion, hallucinations, taste
disorders. Liver and Biliary system disorders: abnormal liver function test, hepatitis (non-infectious). Platelet, Bleeding and Clotting disorders:
cases of bleeding with fatal outcome (especially intracranial, gastrointestinal and retroperitoneal hemorrhage), agranulocytosis, aplastic anemia/pancytopenia, thrombotic thrombocytopenic purpura (TTP) – see WARNINGS, conjunctival, ocular and retinal bleeding. Respiratory system disorders: bronchospasm Skin and Appendage disorders: angioedema, erythema multiforme Urinary system disorders: glomerulopathy,
abnormal creatinine levels
OVERDOSAGE: One case of deliberate overdosage with PLAVIX was reported in the large, CAPRIE controlled clinical study. A 34-year-old
woman took a single 1,050-mg dose of PLAVIX (equivalent to 14 standard 75-mg tablets). There were no associated adverse events. No special therapy was instituted, and she recovered without sequelae. No adverse events were reported after single oral administration of 600 mg
(equivalent to 8 standard 75-mg tablets) of PLAVIX in healthy volunteers. The bleeding time was prolonged by a factor of 1.7, which is similar to that typically observed with the therapeutic dose of 75 mg of PLAVIX per day. A single oral dose of clopidogrel at 1500 or 2000 mg/kg
was lethal to mice and to rats and at 3000 mg/kg to baboons. Symptoms of acute toxicity were vomiting (in baboons), prostration, difficult
breathing, and gastrointestinal hemorrhage in all species.
Recommendations About Specific Treatment: Based on biological plausibility, platelet transfusion may be appropriate to reverse the pharmacological effects of PLAVIX if quick reversal is required.
Distributed by:
Bristol-Myers Squibb/Sanofi Pharmaceuticals Partnership
New York, NY 10016
PLAVIX® is a registered trademark of Sanofi-Synthelabo.
51-021345-03
Revised May 2002
©2003 Bristol-Myers Squibb/Sanofi Pharmaceuticals Partnership.
PLAVIX,® added to aspirin and your current
medications, helps raise your protection against
future heart attack or stroke. If you’ve been
hospitalized for heart-related chest pain or a certain
type of heart attack, conditions that doctors call ACS or
Acute Coronary Syndrome, ask your doctor about
adding PLAVIX.
For most, heart attack or stroke is
caused when platelets form clots that
block the flow of blood to the heart
or brain. Think aspirin and your other
medications alone are enough? Adding PLAVIX could
help protect you against a future heart attack or stroke.
PLAVIX and your other medications
work in different ways. Adding PLAVIX
can go beyond your current treatment.
Prescription PLAVIX, taken with aspirin,
plays its own role in keeping platelets from sticking together
and forming clots — which helps keep blood flowing.
Talk to your doctor about PLAVIX.
For more information, visit
www.plavix.com or call 1-800-300-3501.
Add more protection against heart attack or stroke
IMPORTANT INFORMATION: If you have a medical condition that causes bleeding, such as stomach ulcer, you shouldn’t use PLAVIX.
The risk of bleeding may increase with PLAVIX, and when you take PLAVIX with certain other medicines, including aspirin. Review
your medicines with your doctor to minimize this risk. Additional rare, but serious, side effects could occur.
Please see important product information on the following page.
NON-PROFIT ORG.
U.S. POSTAGE PAID
PERMIT NO. 4
LONG PRAIRIE, MN
National Center
7272 Greenville Avenue
Dallas, TX 75231-4596