June

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STROKENET Newsletter

June 1, 2001 Issue #7

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

=> Stroke and Autumn in New Zealand

=> See the USA Through my CVA

=> Website Review: www.caregiver.org

=> Stroke Survey Results

=> 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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********************POSITIONS OPEN!!********************

The positions of Nurse and Occupational Therapist are currently

open for our web page www.strokenetwork.org. If you are a

Professional who would be willing to help our readers please

let us know. We would also appreciate your passing this request

on to other individuals who might be interested. Thanks.

Well, we are finally doing it. The responses that we have

received about how helpful our on-line stroke network is,

coupled with the expenses that maintaining this site is

causing me, has driven me into making this web site financed

through donations and grants. We are in the beginning throes

of selecting a Board of Directors and soliciting for donations

to seed the organization during start-up. Please help us if

you can afford to by donating any small amount that you can

manage. Our donation information for this is at http://www.strokenetwork.org/donate.htm.

The Stroke Network now has a mailing address; the organization

is now getting better organized and has a new address. The

address is:

The Stroke Network

P.O. Box 492

Abingdon, Maryland 21009

You may want to copy the address for your information.

We have a few Personnel announcements to make. Unfortunately,

our Assistant Webmaster, Shane Deavers, is leaving us. The

good news is that Shane will be moving on in order to continue

with his education. I know that I will miss him greatly but

couldn’t be happier for him. We now have our own Software

Engineer. Andy Liu has joined our organization and staff.

He is and will be a big part of our future. He had his

stroke when he was just 28 and was working as a Software

Engineer but now can apply his technical background to

improving the software mechanics needed for our organization,

welcome aboard, Andy.

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EDITOR'S MESSAGE, By Lin Wisman

This month you have several treats in store. David Ray writes

about autumn (fall) in New Zealand. Once again he reminds us

of the possibilities we each have. Rhonda Petersen’s article

this month relates her experience of learning to drive again.

It is inspiring (not to mention funny) to read of her struggles

and accomplishments. Barbara Layne reviews another

website. This month’s feature is the website of the Family

Caregiver Alliance). Finally, we give you the current results

of the “Age of your First Stroke” survey.

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STROKE AND AUTUMN IN NEW ZEALAND by David G Ray

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I hesitate in using the word "autumn" as I realize that in

North America, where I guess most readers live, know the

season better as "fall". Anyway the leaves of the trees here

are turning wonderful shades of gold, bronze and brown before

falling to the ground leaving a colourful carpet. But then

we have to rake them up. Autumn, where I live in the bottom

part of the North Island has been warm, quite unseasonable.

From the point of view of having a stroke it has been great,

being able to go for walks and admire the ever-changing sea

views.

Although, like many other stroke people, I am unable to

undertake any heavy physical work, I am able to pull out a

few weeds. This is very relaxing and is in fact a good

exercise for people with stroke because it not only gives

you the feeling of achieving something useful, but also

helps raise your self-esteem. Mind you, it does not help

when your wife tells you off for pulling out useful plants.

Last month my wife and I drove down to Invercargill to

attend my sister's family gathering. We first crossed Cook

Strait to the South Island on the Interisland Ferry before

taking two days to drive down to the bottom of the island

to Invercargill, stay a few days and drive back again. Even

though I have had a stroke, I am able to drive short

distances to give my wife a rest. In other words I have not

allowed my disability to stop me from living a normal life.

Unfortunately a few of my fellow members of our stroke club

seem to have given up life, like many of the characters in

that British TV comedy, "Waiting for God". As I see it, as

one of my tasks in the Stroke Club, is to encourage them by

telling them what I do. One lady in particular has a very

negative attitude to life since she suffered a stroke, but I

am working on her and hope to have her participate more in

club events. This, of course, is one of the aims of the stroke

club, which is to help and encourage each other to live normal

lives.

Over the next few months when the weather will, I guess, get

somewhat colder, we will continue with indoor activities which

will include listening to guest speakers and enjoying our mid

winter lunch.

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See the USA Through my CVA by Rhonda Petersen

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I had a right-sided Ischemic stroke on June 9,1992. Actually,

one short sentence cannot sum up the extent of the brain injury

because the stroke affected several areas of my brain. So, let

me re-phrase it. I had a “shower” type stroke caused by a heart

defect and the major affected areas presented on the right side

of the brain. Now that I’m done with the medical explanation of

my CVA (Cerebral Vascular Accident) or stroke, let me explain

the USA part.

This has to do with my driving ability. Before you get your

pants in a bundle, let me assure you that I stayed away from

behind the wheel for over seven years, while healing. I had

retained my driver’s license but had assured my neurologist

that I would not drive until I felt I was ready and had checked

with him first. In fact, with permanent left-sided visual field

cut (meaning I’m blind to the left in both eyes), left side

weakness, and memory deficits, I was petrified to even TRY

driving. You have to be so careful out on the roadways, don’t

you? Watch your speed, observe the other cars, forward, reverse,

stop, go, left turns, right turns, watch for pedestrians, observe

what’s going on behind your vehicle and all around you, watch

for traffic signs…. it seemed like an impossible task!

I had set specific goals in my recovery process. First, I

would graduate from college and second, I would re-learn how

to drive. Time was irrelevant; I had all the time there is to

accomplish the tasks. I managed to succeed at the first within

five years of the stroke. But the ability to drive would be

more exciting than college graduation. Since I live

independently, the lack of mobility had kept me from

activities I had enjoyed. I wanted the freedom to travel when

ever and where ever I wanted to go.

The first hurdle I had to jump over was in securing medical

approval. One neurologist said “no” and another said “yes,”

one ophthalmologist said “absolutely NOT” while another said,

“go for it!” I scheduled a “driver’s assessment” test through

the Courage Center driving program just to see if I was ready.

This test included dexterity testing, vision and depth

perception testing, and culminated with behind-the-wheel

instruction.

With my vision problems, I had thought that I could only make

right turns! Which would have been okay if I was only going

around the block But how would I ever understand directions

from point A to point B if I could only make right turns to

get there? Somehow, I would have to make adjustments to view

what was happening on the left as well. My biggest fear was

that I would cause an accident because of visual neglect.

“What if” scenarios whirled through my head, as I thought of

various reasons that would prevent this type of dangerous

activity. But then there was my sense of humor pushing me

onward with thoughts of finally achieving a place to hang my

“handicap” sticker, if a police officer stopped me I could

never pass the sobriety test because I can’t walk a straight

line or close my eyes and touch my nose with my finger

without falling over, and if I gained the ability to drive I

could do almost anything and wouldn’t that be great?

But there was only one major roadblock in my way. The used

car I was about to purchase was ready to be picked up at the

dealership 150 miles away and I hadn’t taken the Driver’s

Assessment training yet. The salesman had stored the vehicle

in his garage waiting for me to pick it up. Was I coming to

get it or would he have to sell it? “Okay, okay, I’ll be

right there,” I said. I had spent great pains in research

in picking out the perfect vehicle for me to navigate IF I

passed the test. But it was happening out of sequence and I

had to make a decision quickly.

I would take the Greyhound bus to the large metropolitan area

where the dealership was located, take a cab to the dealership,

and tell him of my dilemma. As soon as I laid eyes on my

beautiful car, I started to cry. “Why don’t you take it for

a test drive?” asked the dealer. “Oh, no…I couldn’t,” I

exclaimed. Even though he knew I had had a stroke, he was

among the naive group of people who assume you just get over

a stroke and eventually resume activities as if nothing had

happened. It was not the time or the place to enter into a

Stroke Education diatribe. “The paperwork is complete, it’s

yours…take it home,” he said as he rattled off the directions

on how to get to 35W north. I quit listening after he said it

was mine. Besides I can’t remember more than one direction at

a time, how was I supposed to remember to turn right at 47^th

Street, go a mile and a half, turn left on Lexington, take

Interstate 694 and veer off onto 35, etc, etc…The car was mine.

I can do this. I can do this. I can do this, I kept repeating.

All I have to do is get it home and park it in the garage. I

had forgotten that it was approaching five o’clock rush hour

traffic in a large metropolis. I had forgotten that I hadn’t

been behind the wheel in over seven years, AND I had forgotten

the directions he had given me to find the freeway home!

So I drove around the block at about 6 miles per hour, making

right hand turns, for the first half hour. I thought that he

might get a little suspicious so I pulled over to the side

of the road and tried to remember my way home. Why didn’t I l

leave a trail of breadcrumbs! If I could make it back to the

Greyhound bus station, I could remember my way home. I’d just

follow the bus route! Now where was that place again? No time

to think of that now! Look at all these cars! My hands became

a permanent fixture on the steering wheel and my head spun

right, then left, then right…no radio on (even though the car

came equipped with the finest sound system available) I

couldn’t have the distraction. PAY ATTENTION!

Thank goodness the car was full of gas and gets 38 miles per

gallon, because it took me about 38 miles before I figured out

which way I was supposed to be headed! I was sucked into the

flow of traffic and wherever the traffic was going, I was

going too. There was no time for panic attacks! I was so

busy driving that beads of sweat dripped from my forehead.

Is that the Greyhound Bus Depot? It is! It is! Okay, so it’s

getting dark outside…you can do this! Just follow the bus

route home. However, the bus route pulls in to every town,

city, and hamlet along the route…and so did I. I became a

Greyhound bus driver in a little white Saturn and was ever

so happy no one rushed out from the assigned destinations

to climb aboard!

It was getting dark and I though it might be a swell idea

to turn on the headlights. Nope, those are the wipers. How

do you shut those wipers off? No time to think, you’re

driving, concentrate on what you’re doing. Lights, lights, I

think I need lights here! I’ve got to go to the bathroom….

no time for that now, you’re driving…pay attention. But I

really have to go…shut up and drive…lights would be good

here!

As I neared Duluth, the city by the Lake, (oh, yes, and the

fog) the windshield started fogging up. Turn on the defogger,

defroster thingy. Where? Where? I can’t even find the lights!

I have to go to the bathroom! Pay attention, you’re driving!

Someone could get killed! Oh, and you can go faster than 40

miles per hour on the freeway! No, I can’t! I can’t see!

Don’t bring up your deficits now! Roll down the window,

stick your head out and drive! And that’s what I did all

the way to the Greyhound Bus Depot in Duluth…but they were

closed. Since Greyhound doesn’t provide door-to-door service,

I would have to find my own way home from the station. I know,

I’ll follow the city bus route…but I have to go to the

bathroom…keep driving you’re almost home. I only got lost

four times! Must have been the lack of headlights. Thank

goodness, the fog lights stay on automatically! You made it!

That’s your house!

I pulled into the driveway, put the car in park, pried my

fingers from the steering wheel, flung the door open, and

ran inside to use the bathroom.

The next day I passed the Drivers Assessment test with

flying colors. But will someone please show me how to

turn on the headlights!

(Rhonda Peterson has been driving very successfully since 1999.

If any stroke survivor wished to regain the ability to

drive, take a Driver’s Assessment test through your local

hospital or rehabilitation center before getting behind the

wheel. You may have retained your driver’s license but most

insurance policies require competence level testing after

a stroke.)

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Web Site Review by Barbara Layne

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The website for this month is:

www.caregiver.org (Family Caregiver Alliance)

It has six sections:

Diagnoses

Statistics

Research

Fact Sheets

Publications

Newsletters

The Fact Sheet section is seven interesting pages. It begins

with the Definition section and goes through Facts, Symptoms,

Effects, Diagnosis, Treatment, Risk Factors, Recurrent

Stroke, Recommended Readings, Credits, and Resources.

This website “supports and assists caregivers of

brain-impaired adults through education, services, and

advocacy.” They have an email address: info@caregiver.org

if anyone has questions or concerns.

As I find these sites, I have signed up with many to receive

newsletters by email. Many of my questions and concerns

have been answered and I have acquired a wealth of knowledge

on the subject of stroke.

God bless you all!

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Stroke Survey Results

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There have been 2002 participants in the “Age of your First

Stroke survey” on our web page. This survey helps us to see

who our audience really is. The current results:

18-24 (115) 5%

25-34 (168) 7%

35-44 (374) 16%

45-54 (546) 24%

55-64 (401) 18%

65-74 (302) 13%

75-84 (221) 10%

85 or over (75) 3%

Thanks to everyone who has taken a few minutes to complete

the survey. If you haven’t please go to www.strokenetwork.org

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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