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STROKENET Newsletter
April 1, 2001 Issue #5
Linda Wisman , Editor,
mailto:LWisman@strokenetwork.org
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By subscription only! Welcome to your next
issue of
"STROKENET".
You are receiving this
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IN THIS ISSUE
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=>
Sponsorship Notice
=>
Organization Highlights
=>
Editor's Message
=>
Lower Hutt Stroke Club
=>
The Story of a Stroke Survivor
=>
Post-Traumatic Stress and the Stroke Survivor
=>
Website Review: www.healthandage.com
=>
Subscribe/Unsubscribe information
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SPONSORSHIP NOTICE
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If you would like to be a
sponsor of this newsletter, please
contact me: mailto: LWisman@strokenetwork.org
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ORGANIZATION HIGHLIGHTS, By Lin Wisman
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Our website, http://www.strokenetwork.org/, is
gradually changing.
This month we would like to
ask your help with book reviews.
Please check out the books
mentioned on the website. If you
have read any of them,
please go to http://www.amazon.com/
and write a brief review. It
would be great to have reviews
from those closest to
stroke. There may be other books, which
you would recommend. Let us
know about them. Go ahead and write
a review at Amazon for your
favorite.
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EDITOR'S MESSAGE, By Lin Wisman
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Welcome to the April Edition
of STROKENET Newsletter. This
edition contains several
articles of interest First, David Ray
tells us of the activities
of the Lower Hutt Stroke Club in New
Zealand. Rhonda Peterson
then shares with us her story of
triumphantly surviving a
stroke. Thirdly, Polly Perez shares
data on Post-Traumatic
Stress and the Stroke Survivor. Finally
Barbara Layne tells of a
website that is especially geared to
help seniors. Enjoy the
read!
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Lower Hutt Stroke Club, by David G Ray
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In my first article on
stroke organisations in New Zealand I
concentrated on the general
scene. In this second article I
will cover the Lower Hutt's
programme for February/March. Our
club is typical of most
stroke groups. I hope also in future
articles to give aspects of
our beautiful country. In February
we listened to and watched a
slide show about the Karori
Wildlife Centre which is
situated only 3 kilometers from the
centre of Wellington. The
wildlife centre has been fenced
around the perimeter to keep
out predators such as possums,
stoats and cats. It houses a
variety of native birds such as
Kiwi, Tui, Weka and Robins.
There is also a variety of native
trees and shrub. The web
site www.sanctuary.org.nz describes
the area in greater detail.
Two weeks later members were
taken by bus to the Wainuiomata
coast to see a garden of
native trees and bush. Stroke persons
were able to walk about
admiring the wonderful setting. Later
in the month we were given a
practical demonstration of mobile
products aimed at helping us
live normal lives.
Many of our group are
elderly and sadly, lonely, and club
attendance gives them the
opportunity to talk to persons with
like problems. Our club does
meet with other clubs from time
to time and this gives us a
broader outlook and experience of
other stroke persons. We
take the view that while it is
unfortunate to have suffered
strokes, the clubs have meant
that we have met and made
friends with a wonderful group of
people. Incidently, my wife
and I live in a small area called
Eastbourne. You can find out
about Eastbourne in
www.eastbourne.co.nz as it
is a beautiful place.
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The Story of a Stroke Survivor by Rhonda
Petersen
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When I hear people say, “You
don’t look like you’ve had a
stroke,” I am perplexed.
Since a stroke affects the brain and
the brain is located inside
the skull, what is a stroke
survivor supposed to look
like? I am not sure whether to
begin teaching stroke
education or to accept the remark as a
tribute to my arduous
journey through stroke recovery. After
all, it’s almost been ten
years since the event turned my
life upside down. Over time,
my brain has formed new pathways
of adaptation and my spirit
has endured through the loss of
employment, divorce, and
financial disaster caused by this
catastrophe. Now, at the age
of fifty-two, I view the stroke
as a part of who I am. Now,
I prefer to view my assets instead
of my deficits. I choose to
look at what I have learned through
the experience.
In 1992, I had two strokes
within days of each other. The
neurologist said that I had
been having “mini-strokes” or “
Trans Ischemic Attacks
(TIA’s)” for years. All the physicians
agreed that a congenital
heart problem called Atrial Septal
Defect was causing the
strokes. However, after the first major
stroke, I was not well
enough to undergo the corrective heart
surgery. First, I would have
to build strength and endurance
through physical therapy.
The right-sided strokes had rendered
the left side of my body
numb to the touch, heavy, and
extremely uncoordinated.
Peripheral vision was permanently
damaged. It was difficult to
stay awake, least of all alert.
The brain stem swelling
caused imbalance, dizziness and at
times, a slowing of
respirations. Stroke affected vital
pathways in my brain
resulted in constant electric-like pain
on the left side of my body.
Before the heart surgery, I
wasn’t concerned with life beyond
the hospital walls. I was concentrating
on staying alive!
After the second stroke,
machines aided life support and the
doctor’s decided to operate
immediately. I had run out of time.
Intensive Care, pneumonia,
infection, and six weeks of
in-hospital therapy followed
surgery. When discharged from
the hospital, like a
re-birth, everything seemed new and
overwhelmingly exciting. I
remember breathing the warm breeze
of summer, feeling the rays
of the sun against my cheek, and
hearing the birds as if for
the first time. I had traveled
far in my journey of
recovery; however, I was oblivious to
any permanent life change
and surmised that eventually I
would return to my normal
routine.
For the next two months, I
attended outpatient therapy. I
was unable to remember or
recite a short sentence and counting
skills were beyond my
capabilities as well. I found I could
only speak to the rhythm of
nursery songs, when the beat
ceased; my memory seemed to
lose focus. Words would not
connect from my mind to my
mouth and I’d close my eyes to
help visualize what I wanted
to say. In the process, my voice
became high-pitched and
monotone.
While at home, I began to
understand stressful situations
experienced by my family.
Our finances were in shambles. I
was unable to resume full
time employment. After the
hospitalization, the medical
bills had exceeded one-million-
dollars and I was quickly
dropped from our policy benefits.
My medications continued to
be about $800.00 a month. We had
to sell the house. Our marriage
was faltering under the strain.
Our three teenage children
were angry that their mother had
changed, that their life had
changed, and that everything was
about to change again.
The stroke had severely
curtailed my independence. Without my
autonomy, my spirit would
eventually shrivel like a plant
without water. My memory
could not store needed information
about the past or the
future, I literally lived in the
present. Difficulties in
processing information complicated
decision-making. Nevertheless,
I was determined to begin to
take control of my life. It
would take time for my brain to
heal, but time seemed to be
an enemy once again.
Our twenty-two year marriage
ended in divorce and I began
living independently.
Because of the stroke, I was unable
to drive, unable to
understand the concept of money or how to
make change for the bus or
for food. Because of the stroke, I
was having frequent
seizures, I couldn’t read, write, or
comprehend newspaper
headlines. But because of the stroke I
found inner-strength,
spirituality, a sense of humor, and
an attitude about living in
the moment that said, “I can not
change what has happened but
I can literally make change!”
It was a statement of fact.
It was my first statement of
self-determination, like a
Declaration of Independence. It was
the realization that I could
not change what had occurred but
I was healing. I laughed for
the first time in months.
All the while, I remained
under the watchful eye of my
neurologist who knew, as well
as I, the unspoken alternative
to not managing an
independent lifestyle. My neurologist
became my confidant and
friend, allowing me as much freedom as
I could safely handle.
Although my official therapy
sessions had ended, I had not
finished rehabilitation. I
began classes at the local
community college. I learned
to tell time again and learned
how to take the bus to and
from school. I tape-recorded the
few classes I attended and
repeatedly listened to the lectures.
I had all the time I needed
to learn.
In 1995, I graduated from
the community college, moved back
to my hometown, and finished
courses towards a Bachelor of
Arts degree at the
University of Minnesota Duluth campus. I
enjoyed the exercise of
walking to and from the campus. My
textbooks were on tape and I
studied before the classes began
in order to place the needed
information in long-term memory.
In 1999, I graduated with
honors in English and a minor in
Communications and
Professional Writing.
Over time, our children have
grown. The adversity has
tightened the bonds between
us and rewarded us with a deep
appreciation of the precious
gift of life. While it is true
that I missed out on some of
their teen years, as a mother I
have given them the gift of
strength and courage to carry on
no matter what stands in
their way. They have also learned
to adapt to life.
One of the highlights of our
life is that I actually delivered
my granddaughter. When my
daughter was in labor, she requested
that her mother, a former nurse,
deliver her child. I had no
idea of her request until
the time came to welcome a new
life into this world. The
hospital nurses assisted me in the
process and I will never
forget the joy we experienced.
The story is far from over;
in 2000, I began a small business
that supports others who are
reaching out towards independence
and adaptability while
living with the effects of stroke.
Peterson Press provides
speaking presentations to
organizations regarding a
stroke survivor’s perspective of
Life after Stroke. Also, we
publish a humorous monthly
newsletter entitled, The
Ramblings.
Eight years after the
strokes, I regained the ability to drive.
So if you’re out on the
roadways watch for the peripheral
visionary. She’s the one who
doesn’t look like she’s had a stroke.
LOOK FOR
WWW.PETERSONPRESS.COM COMING IN APRIL. ALSO,
http://www.thrivenet.com/, THE SITE OF AL
SIEBERT,PH.D. AND
AUTHOR OF "THE SURVIVOR
PERSONALITY" WHO WILL BE FEATURING
RHONDA PETERSON AS THE APRIL
"SURVIVOR OF THE MONTH"
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Post-Traumatic Stress and the Stroke Survivor,
by Polly Perez
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It is not uncommon for survivors
to have symptoms of PTSD
Post-traumatic Stress
Disorder) after the stroke.
* RE-EXPERIENCING THE EVENT
*FLASHBACKS
*DREAMS
*ANNIVERSARY RECOLLECTIONS
* AVOIDANCE OF STIMULI
*SITUATION AVOIDANCE
*AMNESIA
*DETACHMENT FROM OTHERS
* PHYSIOLOGICAL AROUSAL
*SLEEP DISRUPTION
*IRRITABILITY
*DIFFICULTY CONCENTRATING
*HYPERVIGILANCE
Trauma occurs when a person
is subjected to stress that is
outside the range of what
she/he perceives as normal. If she
has had no preparation for
the event it is more likely that
many things about the
experience will be perceived as traumatic.
None of us had any
preparation as a stroke comes "out of the
blue" and our lives
were immediately changed. Turmoil reigned!
Trauma does not result from
just dealing with a stressful
event; it occurs when there
is great danger involved and one
is powerless. The critical
variable is the degree of exposure
to stress. This can occur
when a single event is extremely
stressful or when many episodes
of low level stress occur
close together or over a
long length of time. In my own case,
not only did I have the
trauma of the stroke but the trauma
of being emotionally abused
in the hospital. The week was a
downward spiral into
chaos--the violent brain attack, being
unable to communicate with
words, and being traumatized in the
hospital and the result was
PTSD (Post-traumatic Stress
Disorder). In the stroke
survivor, whose perception and
communication may be
distorted or impaired, the perception
and communication that
remain are often sensitized and acute.
Some doctors have ignored
the emotional trauma associated with
a stroke. Trauma cannot only
radically change a person's
perception of the event but
can negatively affect our lives.
The internet site of David
Baldwin contains much information
about PTSD. There he tells
that “traumatic experiences shake
the foundations of our
beliefs about safety, and shatter our
assumptions of trust.
Because they are so far outside what we
would expect, these events
provoke reactions that feel strange
and "crazy".
Perhaps the most helpful thing I can say here is
that even though these
reactions are unusual and disturbing,
they are typical and
expectable. By and large, these are
normal responses to abnormal
events.”
Post-traumatic stress
disorder is defined in the Diagnostic
and Statistical Manual of
Mental Disorders
(DSM-III-R) by
listing the criteria the
person must meet. These criteria are:
A. You have been exposed to trauma
B. You re-experience the trauma in the form
of dreams,
flashbacks, intrusive
memories, or unrest at being in
situations that remind you
of the original trauma
C. You show evidence of avoidance behavior-
a numbing of
emotions and reduced
interest in others and the outside world.
D. You experience physiological hyper
arousal, as evidenced
by insomnia, agitation,
irritability, or outbursts of rage.
E. The symptoms in criterion B, C, and D
persist for at
least one month
One way to deal with PTSD
(Post-traumatic Stress Disorder) is
through writing. Journal
writing can be very helpful. BRAIN
ATTACK: Danger, Chaos,
Opportunity and Empowerment, my latest
book started that way. Even
before I could write well I
dictated my thoughts to my
husband. Writing can change your
relationship to the trauma
of the stroke, and it can help
you handle an arduous time
in your life. It can be a way to
console yourself. Writing a
book for people you will never
meet is a way to share
something that is important to you. I
wrote this book to put my
experiences into words that would
help others. At the same
time, the writing and its intimate
reflections were a form of
grieving for my pre-stroke life and
a kind of psychological therapy.
Writing each day gave me a
new perspective on what was
happening to me, like a photographer
pointing a camera in a
different direction. The result was a
picture of my life as I had
never seen it before. The brain
attack changed my life and
my soul. I was always cerebral and
left-brained (analytical),
but the stroke forced me to get more
in touch with my right
brain. I had to become more intuitive,
to express myself more
through gestures than through words, and
to be more free with my
feelings than I had been before. The
experience changed my life
perspective. I had been so focused
on living life, that at
times I didn't enjoy it. Now I take
nothing for granted, not
even the view from my window.
Brain Attack represents a
unique opportunity for readers to
understand the deepest
feelings of a stroke survivor. I have
written about loneliness,
fear, anticipation, frustration,
and fulfillment. I am no
longer the person I was before the
brain attack. This diary of
recovery contains not only my
thoughts and feelings but
those of my doctor, therapists,
family, friends and
colleagues. As I am a nurse, I was in a
position to evaluate my
health care and I found a flawed
system, often at odds with
the stroke survivor’s best interest.
Brain Attack gives my
recommendations for improving stroke care
to give stroke survivors and
their families the knowledge and
confidence they need to deal
with the aftermath of a brain
attack. It is for everyone
who has had a brain attack or who
loves someone who as, for
everyone who cares for stroke survivors
and for everyone who
relishes stories of courage and triumph.
It was published this week
and is available through your local
book store, Cutting Edge
Press, www.childbirth.org/CEP.html
or Amazon.com.
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Website Review, by Barbara Layne
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There is an excellent
website for seniors that deals with
medical issues and answers
many questions. There is quite a
lengthy section on strokes
and heart disease. The website is
www.healthandage.com. There are five main sections for each
heading along with a search
engine that will pinpoint specific
areas. The main headings
are:
This contains summaries of
recent and late-breaking news of
Research on this topic.
v Am I At Risk?
This contains information to
help you determine if you are at
risk for the medical
conditions included in this topic.
v What Can Be Done?
This contains information on
approaches to the treatment of the
conditions covered by this
topic.
v Help Services
Additional resources
(research resources, medical associations,
etc.), both on-line and
off-line, which addresses this topic.
v Disease Digests
Extensive background reading
prepared under the auspices of
Harvard and Mass General
physicians.
Each time I look through
another website or article, I find
another bit of information.
I am amazed at wealth of knowledge
there is on the internet and
I am thankful that it has been
available during my recovery
and just to help me deal with the
changes that stroke has
brought to my life!
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Copyright Information
This newsletter is the
copyright of the Stroke Network and may
not be copied without the
express written permission of the
editor, Steve Mallory,
Smallory@strokenetwork.org
mailto:SMallory@strokenetwork.org
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Copyright 2001 The Stroke
Network
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------------------------------------------------------------------
Steve Mallory
President & CEO
The Stroke Network
Stroke Awareness for Everyone