May

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STROKENET Newsletter

May 1, 2001 Issue #6

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 newsletter because you

requested a subscription or are on the Stroke

Newsletter list. Unsubscribe instructions

are at the end of this newsletter.

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IN THIS ISSUE

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=> Sponsorship Notice

=> Organization Highlights

=> Editor's Message

=> Anzac Day in Belgium and New Zealand

=> Danger and Opportunity

=> Website Review: www.stroke-site.org

=> 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 Steve Mallory

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A Stroke Awareness Presentation has recently been developed

and would now like to recruit your experiences to help

implement this endeavor. The program has been developed in

order to help educate society about their stroke knowledge

and then inform them what to do in case it ever happens to

them or a loved one. You should tell your local hospitals

and friends that they can download it for free by going to http://www.strokeawareness.org/. You should also create a YourName@strokeawareness.org e-mail address for yourself

while you are on that page.

I have been undergoing medical procedures for the past few

months in order to help control my spasms and central pain.

The procedure was to have a hockey puck shaped computerized

pump implanted in my stomach. The pump contains the drug

Bacclofen and is more effective because it is being

administered through a catheter to the spinal chord and thus

being directly routed to the brain. You may want to ask your

doctor about this procedure, called the ITB pump.

I also recently appeared on my local news station to explain

stroke support, the Stroke Network, via the Internet. The

news anchor was extremely interested in this subject and did

a good job of asking questions about it. This has made me

think of how effective it might be if many of our members

took on a similar task. The rationale behind me wanting to

do something like this was to inform the city of Baltimore,

and metropolitan area, that this form of stroke support was

available to it’s stroke survivors and caregivers. After all,

these people are my neighbors and I felt that we provide a

needed and unique service. You can e-mail me if you are

interested in doing something like this too and need I

nformation about our organization.

We started the Stroke Caregiver mailing list again last month.

Caregivers no longer need to belong to the Stroke Support

mailing list in order to obtain support. You can exchange

your questions, experiences and just vent by joining this

needed list. You can join it by going to

http://www.strokecaregiver.org/. Carl Wilson is the moderator.

His e-mail address is CBWilson@strokesupport.org in case

you have questions.

There are two Expert vacancies: Nurse and Occupational

Therapist. If you are interested in filling either of these

positions please contact our Director of Personnel, Pat Provost,

PProvost@strokenetwork.org. If you know if anyone who might be

willing to volunteer please pass this info on to them.

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EDITOR'S MESSAGE, By Lin Wisman

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In this issue there are several important points in the

Organization Highlights (above). Particularly I would like to

point to the open positions mentioned in the last paragraph.

All of us appreciate the help we receive and would like to

continue to receive it. Also in this message is data on the

Stroke Awareness Presentation and Steve Mallory’s recent TV

appearance. Hopefully you can also help to help educate the

public on stroke.

Below is an article on Anzac Day in Belgium and New Zealand. In

it, David Ray helps to educate us on this event. It is often

easy to forget those who have given their lives to make this a

more peaceful world. Barbara Layne reviews for us this month a

Website specializing in tips for healthcare professionals.

Finally, we realize that there have been recent problems with

the Distribution List for this Newsletter. Several names were

inadvertently dropped from the list. If you were dropped please

accept our apologizes and re-subscribe. Thanks.

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ANZAC DAY IN BELGIUM AND NEW ZEALAND by David G Ray

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April 25^th of each year ANZAC Day is commemorated in both

Australia and New Zealand. ANZAC means Australia and New

Zealand Army Corp and was a name originally given to the

solders who fought at Gallipoli in Turkey during the

1914 - 1918 world war. It has since come to denote

all solders, naval and air force personnel who fought

in World War 2, Vietnam, Korea and East Timor besides

those undertaking peacekeeping duties in Eastern Europe,

Middle East and other areas.

While my wife and I lived in Brussels, Belgium, we attended

ANZAC ceremonies in Ypres, and Messines. Both towns where

Australian and New Zealand solders fought in bloody

battles, under atrocious weather conditions. Ypres, known

to old solders as "Wipers" is situated in the western side

of Belgium, close to the French border. Messines is but

a few miles away, also in Belgium. It was literally

flattened during the Great War but was rebuilt, more

or less exactly as it was, with German finance.

The first parade we attended on ANZAC Day in Belgium

was at Messines where many New Zealand solders lost

their lives in a bloody battle. There is a memorial

to these solders there and we attended a wreath laying

ceremony. All the houses had New Zealand flags dangling

from their windows, a moving tribute. From Messines

we drove to Ypres where we attended a wreath

laying ceremony with the Australians at the Menon Gate.

The Menon Gate is a large memorial to all those who

fought and fell in both world wars.

Since we have been back home, we have attended ANZAC Day

ceremonies in our hometown of Eastbourne. Not only do we

remember those who died in two world wars but also

those who made the ultimate sacrifice in Korea, Vietnam,

Kuwiat and other places. The ceremony was simple and

moving, as is always. Each year has seen a diminishing

number of old servicemen and women and a growing number

of young people attending. Our son, who knows little about

war (and we pray that will continue) laid a wreath on

behalf of the local voluntary fire brigade. After the

ceremony was over we all went to the Returned Service

Persons rooms to talk and talk and talk.

These few paragraphs have not touched on the subject of

stroke. However past wars do touch us all. The ANZAC ceremony

ends with the words - "We will remember them" and we will,

each April 25^th and always.

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Danger and Opportunity by Polly Perez, RN,BSN,FACCE,LCCE

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There is a Chinese word with two figures that when combined

been mean danger and opportunity. My journey through

stroke-land was filled with danger and opportunity. I had

just finished five miles on my treadmill when coherent thought

refused to form in my mind and I became one of the people

who suffer a brain attack. This happens every 53 seconds in

the U.S. A stroke is a very personal journey as it affects

everyone differently. This experience was a lonely one.

In some respects it was like giving birth. When I birthed

my children, I felt the same way. There were others around

me to help but the job was mine and in some respects it was

a lonely one. Eventually, I took pen and paper in hand to

record this journey. Writing a book about the experience

was good for my emotional health and I wanted to put this

experience into words to help others and that book is called

Brain Attack: Danger, Chaos, Opportunity and Empowerment.

It is a story of strength, feelings, healing and empowerment

I felt that I had the duty of bearing witness to the exile of

my words as there are some real implications for medical

professionals to learn from. Health care professionals must

always remember that some day it could me THEM sitting on the

other side of the health care fence. I entered the kingdom

of the unwell and I moved to the other side of health care

and became a patient. This changed how I saw the medical

system and those who worked in it. In the book I also wanted

to inspire stroke survivors to persevere.

Speaking has been the center of my professional life as I

have been making my living speaking to medical audiences.

In a split second, my words were abducted and all I could

say were unintelligible words. The envelope of time ripped

open and my speech was dropped into a back hole. The

language center of my poor brain suffered the most damage

of the impact of the blood clots. I am now one of the one

million people in the United States, who has aphasia

(uh-fay'-zhuh) and apraxia (uh-prax-she-a) as a result of

a stroke that impaired my ability to use or comprehend

words and articulated speech. The severity of aphasia

symptoms can range from my mild to very severe. I marched

into the unknown without any words in my vocabulary. My

apraxia and aphasia were severe and vastly changed the way

that I communicated. More than my words were lost in the

thunderstorm in my brain, I could no longer write and spell.

The brain attack was sudden, unexpected, and every bit

unwanted but it presented unique challenges, unique dilemmas,

and unique opportunities. My life seemed to be unraveling

like a piece of cloth, thread by thread . The very word

"surrender" evokes giving up and giving in and this is not

what I would do so I kept trying to communicate with those

around me even though I couldn’t speak. I kept sorting

through my brain like you would do with a Rolodex but my

processing skills were utterly gone. What do I do next?

I saw health care from the other side and sometimes the

picture wasn't pretty. It let me know in an experiential

way how important our job as health care professionals are.

I learned that some of them were dedicated to help in ANY

way they could. They used their power to empower me.

Unfortunately, there were a few who used their power in a

destructive way to hurt me. I learned what post-traumatic

stress was about when two nurses emotionally abused me when

no one was there to rescue me from their show of control

and power.

In the end, their actions were a blessing in disguise as

their poor treatment empowered me to say the first words

after the stroke which were "Get me out of here." A

nurse-friend helped me transfer hospitals to one that was

dedicated to patient-centered care. I decided to see the

brain attack as a challenge and I knew that challenges

can be overcome. I knew that I had to push against the

difficulty the stroke made me face so I used every

second of the day to bring forth my dream of speaking

professionally again. I was willing totry anything.

I started copying the letters of the alphabet so that

my handwriting got better as well as I started trying

to make the sounds that make words. I had to build a

bridge over the gap that was in between my mind and my

mouth.

When I tried to speak sometimes, I felt that there was a

mistake when I heard the jumbled-up sounds that emerged

from my mouth. Where do they get detoured? The stroke

changed my life picture in a way I had never thought

possible and each day the my life camera was pointed in

a different direction it seemed as I struggled to regain

my speaking skills.

My occupational therapist spread baby powder on a table

for me to write with my right index finger, the words that

I couldn't say. My fine motor control was not redeveloped

enough to do this with a pen easily. The task of manipulating

a pen and writing was too overwhelming to me. When I took

away the pen, I could write and rudimentarily spell again.

This powder writing helped as there was a connection from my

brain to my finger. It was the first thing that I could do

by myself. My speech therapist became my lifeline. Talking

was very difficult but I worked every second of the day

practicing speaking. Endurance became my best friend and I

found that perseverance pushed me forward. All of this hard

and unending work was worth it when I gave my first

professional speech and got a standing ovation.

My brain attack gave me a new perspective on life. Each

day gave me a new perspective like a photographer changing

their view through the camera lens. The result is a picture

that makes me look at my life as though I have never seen

it before..Out of Chaos, Stars are Born

BIO-

Paulina G. Perez R.N., B.S.N., F. A.C.C.E.

Polly is an internationally known nurse and public speaker.

She is a consultant to hospitals, universities and

corporations on health care related issues. Polly has always

campaigned for patient rights and for family-centered care.

Ms Perez is known for her exciting programs and books,

always presented with warmth, enthusiasm and wit. She draws

on her experience in health care to address issues that are

important to families and professionals. Those who have

heard Polly speak or read her books are energized by both

her personality and her ability to make complex information

easily understood. Her latest book, Brain Attack: Danger,

Chaos, Opportunity and Empowerment is a book about stroke,

survival, and perseverance. For Stroke Month in May, Ms.

Perez will be speaking in Spartanburg, SC about the book

and her recovery.

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Website Review, by Barbara Layne

This month I have found a website called the Acute Stroke

Toolbox – www.stroke-site.org

It contains the “tools necessary for health care professionals

to develop systems to enable the rapid diagnosis and treatment

of acute stroke”

Guidelines

Pathways

Stroke Scales

Information for the Public

The Coalition

Disclaimer

Index

These are the headings for the Brain Attack Coalition which

point the health care professionals (and those of us

interested non-professionals!) to a wealth of information

on causes and treatments. There are two new sections with

updated information.

There are links to familiar and new sites for those of us

who are on a quest for as much information as we can

find concerning stroke (brain attack).

Give this site a try – especially the new sections on

recommendations. See you next month. God bless!

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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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Steve Mallory

President & CEO

The Stroke Network

mailto:SMallory@strokenetwork.org

Stroke Awareness for Everyone