Born to Survive - American Stroke Association

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Born to Survive - American Stroke Association

contents January/February

Feature Story

Born to Survive 18

Questions, answers and stories about stroke in children

Articles

The Respite Zone 13

Creating a haven in the home for the family caregiver

Controlling Post-Stroke Seizures 15

An expert’s advice on a common complication

Saving Strokes, Changing Lives 26

A California golf event links stroke recovery and fun.

A Case of Parenting as Therapy 28

Survivor Chris Bulthuis becomes a stay-at-home dad.

Staff and Consultants:

Dennis Milne, Vice President,

American Stroke Association

Wendy Segrest, Director, American

Stroke Association Operations

Debi McGill, Editor-in-Chief

Departments

Letters to the Editor 3

Stroke Notes 6

Readers Room 10

Life at the Curb 25

Everyday Survival 30

Jon Caswell, Lead Editor

Mike Mills, Writer

Sam Gaines, Writer

Pierce Goetz, Art Director

Michelle Neighbors,

Advertising Sales

1-888-4STROKE (1-888-478-7653) StrokeAssociation.org

2006

18

26 28

Stroke Connection Magazine is underwritten

in part by Bristol-Myers Squibb/Sanofi

Pharmaceuticals Partnership, makers of Plavix.

Produced and distributed in cooperation

with Vitality Communications

a division of

Copyright 2006 American Heart Association ISSN 1047-014X

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 Editor-in-Chief.

The information contained in this publication is provided by the

American Stroke Association as a resource. The services or products

listed are not owned or provided by the American Stroke Association.

Additionally, the products or services have not been evaluated and their

listing should not be construed as a recommendation or endorsement of

these products or services.


YOU DON’T

WANT ANOTHER

HEART ATTACK

OR ANOTHER

STROKE

TO SNEAK UP

ON YOU.

PLAVIX HELPS KEEP BLOOD PLATELETS

FROM STICKING TOGETHER AND FORMING

CLOTS, WHICH HELPS PROTECT YOU FROM

ANOTHER HEART ATTACK OR STROKE.

If you’ve had a heart attack or stroke, the last thing you

need is another one sneaking up on you. PLAVIX may

help. PLAVIX is a prescription medication for people

who have had a recent heart attack or recent stroke, or

who have poor circulation in the legs, causing pain

(peripheral artery disease).

PLAVIX OFFERS PROTECTION.

PLAVIX is proven to help keep blood platelets from

sticking together and forming clots, which helps keep

your blood flowing.This can help protect you from

another heart attack or stroke.

IMPORTANT INFORMATION: If you have a stomach

ulcer or other condition that causes bleeding, you

shouldn't use Plavix. When taking Plavix alone or with

some medicines including aspirin, the risk of bleeding

may increase.To minimize this risk, talk to your doctor

before taking aspirin or other medicines with Plavix.

Additional rare but serious side effects could occur.

© 2005 Bristol-Myers Squibb/Sanofi Pharmaceuticals Partnership.

WITHOUT PLAVIX WITH PLAVIX

TALK TO YOUR DOCTOR ABOUT PLAVIX.

For more information, visit www.plavix.com or call

1-877-700-0701

PROVEN TO HELP PROTECT FROM

ANOTHER HEART ATTACK OR STROKE

USA.CLO.05.08.12/September 2005 B1-K0197/09-05

January/February 2006


PLAVIX ®

clopidogrel bisulfate tablets

Rx only

Brief Summary of Prescribing Information Rev. November 2004

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 the following conditions:

• Hypersensitivity to the drug substance or any component of the product.

• 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 (


L E T T E R S

The letter from Anne Dimiceli in your

September/October issue hit home. I am a caregiver to

my children who have handicaps and my husband who

is in a care center because of dementia from his strokes

in 1987. I started a support group in 1988. I still go to

help others who are just at the beginning.

We have so much to share with those that are new

to this life. We bring our loved ones with us because it

is good for them to know that they are not alone. Those

who have lost their loved ones still come as they have

become part of an understanding family.

I would urge Anne to seek out a good support group

and go. If she can’t leave her loved one alone, I would

urge her to find someone to help her in respite care.

I was told when my husband had his stroke to find

time for myself, even if it was a few hours once a week.

I loved to fish, so I made Monday afternoon mine. I

would stress to Anne that her own time to relax is just

as important to her health as taking care of someone is

important to them. I am now having a number of health

problems and have been told it is because I didn’t take

care of myself. My body is saying enough is enough.

I wish her luck.

Joanne Goff, Caregiver

Via e-mail

I just finished reading John Kawie’s

column and thoroughly enjoyed it. It was given to me

by a friend who had a stroke. I also had the pleasure

of seeing John perform “Brain Freeze” last November

at a Life after Stroke seminar in Rutgers, New Jersey.

He was the keynote speaker and answered questions

afterwards. He was fantastic! What a unique perspective

to share with others who are involved with stroke. John

nailed their feelings, both highs and lows, right on the

head. Between the laughter and the tears, we were not

alone in crying at some of the situations he portrayed.

While stroke is not a humorous topic, I’m a firm

believer that laughter is the best medicine. I’d like to

thank John for making me and my friends laugh and to

you for letting him touch others with his gift.

Norman Luther, Survivor

New York, New York

Connecting You to Us

I am a caregiver for a stroke survivor. My

husband had a stroke 15 years ago. With the help of your

wonderful magazine, we have set up a lending library

and made up fliers to try and let others know we have a

support group just ready for them.

We went before the city council and had May

proclaimed Stroke Awareness Month in our town. Your

magazine has shown us we all have to make stroke

awareness our job in life.

Joanne Potter, Caregiver

Folsom, California

I don’t know how I got signed up for the

magazine, but I sure am glad I did. I devour every page

when it arrives and have learned so much. The article

by Mary Morgan brought me to tears, to finally know

that others struggle with mental problems after stroke.

The physical problems were evident and I worked hard

to overcome them. I thought, “Once I whip these, I’ll be

fine.” NOT!

I didn’t realize I would be a different person, with a

different personality. Even after three years, every day is

a struggle trying to do and enjoy the things I did before.

This was not mentioned once all through therapy.

And sleeping is the worst. I’ve not had a full eight

hours sleep in the last three years. Medicine just doesn’t

seem to work the same. Do any other survivors have

this problem? I tell my doctor, but I don’t think she

understands. I get the feeling she thinks I want to be a

drug addict and won’t prescribe a stronger pill.

I hope Linda Jennings in the July/August issue can

find some help for her husband to sleep through the

night. I’ll be watching for what other survivors do to

beat insomnia.

I was “lucky” because I had a “small” stroke,

“they” said. I don’t believe any stroke is small because

your whole life and that of your family is completely

changed. I wish I had been told what I was going to go

through.

Debby Goodspeed, Survivor

Evanston, Wyoming

January/February 2006

( c o n t i n u e d )


L E T T E R S

In April 2003 I had an ischemic stroke and

exactly one week later had a second stroke, which made

me unable to swallow for two weeks.

Stroke Connection is uplifting and encouraging to

me. I am now unemployed but grateful I can drive and

do light housekeeping. My swallowing is weak but I

am thankful I can eat and drink, although I’ve had to

make adjustments. Thank you for encouraging me.

I re-read the magazine and appreciate it very much.

The article “When the Eyes Don’t Have It” was

especially pertinent to me as I had just visited my

ophthalmologist for my routine checkup. It has been

two years since my two strokes. I had my written

questions in hand and asked them of the staff person,

who asked me some general questions. My doctor

never acknowledged that I had asked specifically

about dry eyes. So I photocopied your article and

mailed it to his office. I have learned to speak up

when my questions aren’t answered.

Only another stroke survivor can fully understand.

I am totally different than I was before my stroke, and

have gained a completely new perspective. I am very

thankful I can swallow. I sure took that, and countless

other things, for granted. Jesus Christ is my hope. Many

people prayed for me, for which I am most thankful.

“Never, never, never give up,” Winston Churchill

said. That also applies to us as stroke survivors.

Brenda Oquist, Survivor

Osceola, Nebraska

You are so wonderful, I don’t know

where to begin. The latest Stroke Connection had so

many good articles, I just tore it apart and sent them

to family and friends who could benefit.

I kept Elizabeth Cockey’s “Therapy that Makes

You Laugh” for my husband who has mild cognitive

impairment due to vascular strokes. “When the Eyes

Don’t Have It” I kept for myself since I just had

cataract surgeries.

Thanks for a job well done.

Myrtle Vernon, Survivor

Greensboro, North Carolina

January/February 2006

Connecting You to Us

I enjoyed reading “Life at the Curb”

by John Kawie. That story was done quite well. There

was some humor in it, and I like that. Is John Kawie

really a comedian? If he isn’t, he should be. Will we

be hearing more from him? This article made me

laugh, something I haven’t done in a long time.

Joyce, Survivor

Massachusetts

I have read your magazine with great

interest since my stroke two years ago. Here is

my main complaint: You use a “power of positive

thinking” approach. Surely, you know that a stroke is

a sad, shocking, trying, ongoing problem for most of

us. Are you properly dealing with emotional aspects,

the loss, the coping problems?

How does one feel about suddenly being pushed

into a wheelchair? How does one deal with suddenly

being dependent on others? How does one deal with

having only one hand to do two-handed chores? How

does one deal with the great gaps in medical care after

stroke? How does one deal with making it on your

spouse’s income and raise a child?

We have fought for 18 months over disability. I

was denied twice and go for a third hearing soon.

If you look through recent issues, every face is

smiling broadly. This may be unconscious, but I

believe your readers deserve to be addressed on a

“real” basis by your acknowledging how hard the

experience of stroke really is! Everyone around me

thinks it’s easy to get up and work and do things

normally. But deep down, it’s hard to even think about

what the next day will bring for me and my family.

Scott Bonagofsky, Survivor

Bismarck, North Dakota

We Want To Hear From You

mail: c/o Editor-in-Chief

Stroke Connection Magazine

7272 Greenville Ave.

Dallas, TX 75231

fax: 214-706-5231

e-mail: strokeconnection@heart.org

Letters may be edited for length and scientific integrity. The opinions presented are those of the individual and do not reflect those of the American Stroke Association.


S T R O K E Connecting You to the World

Children Affected

by Parent’s Stroke

owering blood pressure can slow or stop the

progression of brain abnormalities that raise

the risk of dementia and stroke, according to

a study in Circulation: Journal of the American

Heart Association.

This is the first study to use magnetic resonance imaging

(MRI) to assess the impact of reducing blood pressure

on the development of “white matter hyperintensities”

(WMH) — abnormalities of white matter deep in the brain

that are visible as bright areas on an MRI scan.

“These are also called ‘silent infarcts’ because, unlike

other obstructions in the brain’s blood supply, they are

not followed by paralysis, trouble speaking or other stroke

symptoms,” said the study’s senior author, Christophe

Tzourio, M.D., Ph.D., a neurologist at the Lariboisière

Hospital in Paris, France.

“People with high blood pressure are more likely to

develop WMH, and a larger volume of WMH is associated

with cognitive decline, an increased risk of dementia and

accelerated brain aging in some hypertensive patients,”

he said.

January/February 2006

Children often develop behavioral problems and

depression after a parent has a stroke, according

to a study in Stroke: Journal of the American

Heart Association.

Researchers found that about one in three

children are negatively influenced by the changes in the

family situation a year later.

“The high percentage of children with clinical and

subclinical problems directly after parental stroke might reflect

psychotrauma as a consequence of parental stroke and family

crisis,” said lead author Anne Visser-Meily, M.D., rehabilitation

specialist, at the Rehabilitation Centre De Hoogstraat and

University Medical Center, Utrecht, the Netherlands.

“The family tries to find a new balance when the stroke

patient comes home. An increase of child problems can

be expected because the family realizes that at least some

changes will be permanent, and they have to reorganize

family routines,” she said.

According to the researchers, approximately half the

children showed one or more behavior problems or depression.

Thirty percent showed internalizing symptoms (i.e., withdrawn,

physical complaints and anxiety/depression) and 18 percent

showed externalizing symptoms (i.e., delinquent and aggressive

behavior).

HBP Associated with Brain Abnormalities

WMH are also associated with gait disturbances, a

higher risk of falls, symptoms resembling Parkinson’s

disease and a higher risk of stroke and depression.

Each participant received a brain MRI at baseline

and again after an average follow-up of 36 months. At

baseline, a neuroradiologist examined each scan and

determined that 42 percent of participants had no WMH;

26 percent had mild WMH, 13 percent had moderate

WMH and 19 percent had severe WMH.

At the time of the second MRI, blood pressure

readings had fallen more in patients treated with high

blood pressure medication than in placebo patients.

The risk of new WMH was reduced by 43 percent in the

treatment group. The volume of new areas of WMH in the

treatment group was one-fifth that of the untreated group.

“These results confirm the intuition of researchers that

reducing blood pressure decreases the risk of developing

white matter lesions,” Tzourio said. “WMH could be the

missing link needed to explain the well-established

association between high blood pressure and

cognitive decline.”


Training Caregivers

Makes Life Better

Training could help family caregivers who

struggle to care for stroke survivors, according

to a study in Stroke: Journal of the American

Heart Association.

“Caregiving is a very important task that we

understand very little,” said study author Lalit Kalra,

Ph.D., F.R.C.P., professor of stroke medicine at Guy’s,

King’s and St. Thomas’ School of Medicine in London.

“We need to learn what exactly caregivers want, and

what determines the burden they experience, because

their role is very important in determining the longterm

outcome for stroke patients.”

Advances in stroke rehabilitation have successfully

reduced severe disability and institutionalization, so

that up to 80 percent of stroke survivors return home.

However, about 25–74 percent require assistance from

layperson caregivers for daily living activities.

“The good news is that we’re sending a lot more

patients home,” Kalra said, but there’s a problem: “Our

rehabilitation programs have been centered on the

patients and not on the caregivers.”

Half of the caregivers in the study received customary

support from the rehab center, including information on

stroke, involvement as discharge plans were made and

rehabilitation goals set, encouragement to watch nursing

care and learn how to assist, and advice on services and

benefits available after discharge.

The other half received formal training on preventing

and treating common stroke-related problems (such

as bed sores) and individualized hands-on training

in nursing skills such as lifting and helping with

communication.

Researchers found that caregiver-burden scores were

higher and quality-of-life scores lower when:

• survivors were older, had more disability, more

anxiety or more depression;

• caregivers were older, more anxious, had physical

difficulties, or did not receive caregiver training;

• there was little support from other local

family members.

“Caregiving is a major transition in people’s lives,

associated with lots of anxiety and stress, but making

people confident about their own abilities really does

help,” Kalra said. “We need to change our focus in

rehabilitation and start looking at patients and their

caregivers as a unit.”

Help in Choosing a Rehab Program

The National Rehabilitation Hospital’s Center for Health and

Disability Research has published a booklet to help stroke

families choose a rehab program. Titled Choosing a High-Quality

Medical Rehabilitation Program, it can be downloaded for free at

www.nrhresearch.org. Click the “Research” button at the top of the

page, click “Center” for Health and Disability Research, click “Read

More” in the middle of the page, then click “CHDR Publications.”

The publication is the second listing.

January/February 2006


Ed R., stroke survivor. Ed has

been receiving Medtronic

ITB Therapy SM since 2004.

A few years back, Ed suffered a stroke that affected the

right side of his brain—leaving him with severe spasticity

(tight, stiff muscles) on the left side of his body.

Ed tried injections and physical therapy to help ease his

pain and increase his mobility, but nothing worked. Then

Ed’s doctor suggested Medtronic ITB Therapy SM

(Intrathecal Baclofen Therapy).

“ It was exciting to finally feel like I was

getting better...like I could do this.”

ITB Therapy helped reduce his spasticity which gave Ed

the functional improvement he needed to accomplish

more at his physical therapy sessions.

The results? Ed can do more at home and take care of

himself again. He’s even back to doing a little cooking,

which is something he’s always loved to do. His wife,

Andrea, loves that, too.

Results vary; not every individual will receive the same

benefi ts. Side effects can occur. For more information,

please refer to the accompanying patient information.

January/February 2006

“ My muscle stiffness made it

impossible for me to do a lot.

Now I think anything

is possible.”

My wife and I take

walks in the park.

I can apply myself

more during therapy.

Embrace the possibilities

Call 1-800-856-3823 ext. 102 to request a

customized information packet.

Find out more at www.yourlifeafterstroke.com/sc

or talk to your doctor.


PATIENT INFORMATION

LIORESAL ® INTRATHECAL (baclofen injection 40 mg/20 mL, 10 mg/5 mL, 10 mg/20 mL, 0.05 mg/1 mL)

Completely read this information before you start using Medtronic

ITB Therapy SM (Intrathecal Baclofen Therapy). This information

does not take the place of thorough discussions with your doctor.

You and your doctor should discuss ITB Therapy before you

begin receiving the therapy and at regular refill appointments.

Q: What is Lioresal ® Intrathecal (baclofen injection)?

A: Lioresal Intrathecal is a liquid form of baclofen, and is

commonly used to treat severe spasticity. Liquid baclofen

is used for injections and infusion into the intrathecal

space (the fluid-filled area surrounding the spinal

cord), using an implantable drug delivery system.

Q: What is severe spasticity?

A: Severe spasticity is tight, stiff muscles that make

movements – especially of the arms and legs – difficult

or uncontrollable. Severe spasticity can interfere with

an individual’s function and/or comfort.

Q: Who is a candidate for Lioresal Intrathecal?

A: People who suffer from severe spasticity resulting from

cerebral palsy, multiple sclerosis, stroke, traumatic brain injury,

or spinal cord injury, and who suffer intolerable side effects

from oral baclofen (pills), may be a candidate for Lioresal

Intrathecal. A screening test will help determine if you will

respond to the intrathecal medication. Talk with your doctor

about whether Lioresal Intrathecal may be an option for you.

Q: Who is not a candidate for Lioresal Intrathecal?

A: People who are hypersensitive (extremely sensitive)

to oral baclofen should not take Lioresal Intrathecal.

Q: What are the most common side effects of Lioresal Intrathecal?

A: The side effects of intrathecal baclofen include loose muscles,

sleepiness, upset stomach, vomiting, headaches, and dizziness.

As with most medications, overdose (drug dose is too high) or

under dose (drug dose is too low) can occur. Talk with your doctor

about the side effects you may experience from your treatment.

Q: What do I need to know if I am using Lioresal Intrathecal?

A: Abruptly stopping intrathecal baclofen can result in

serious medical problems and in rare cases has been fatal.

It is important to keep your pump filled with medication

by attending regularly scheduled refill appointments.

Q: What are the signs of rapid or abrupt withdrawal from

intrathecal baclofen?

A: Increase or return in spasticity, itching, low blood pressure,

lightheadedness, and tingling sensation are often early indications

of baclofen withdrawal. It is very important that your doctor be

called right away if you experience any of the above symptoms.

In rare cases, severe symptoms may occur. These symptoms

include high fever, altered mental status, spasticity worse

than before you started ITB Therapy, and muscle rigidity.

It is very important that your doctor be called right away

if you experience any of the above symptoms.

Q: What can I do to prevent baclofen underdose or abrupt

discontinuation of intrathecal baclofen?

A: It is very important that you keep all of your refill

appointments. This may require some planning prior to traveling.

Maintaining a regular refill schedule will ensure the pump does

not run out of medication and that any potential problems with

the infusion system are diagnosed and corrected. Additionally,

you should be aware of what your pump alarms sound like.

If you hear an alarm, contact your doctor immediately.

Furthermore, it is very important that you know and

understand the signs of baclofen underdose. Also be sure

to tell your doctor right away if you experience any unusual

symptoms, side effects, or changes in your condition.

Q: What are the symptoms of baclofen overdose?

A: Although rare, it is possible for you to receive too much

medication (overdose). A baclofen overdose may cause drowsiness,

lightheadedness, respiratory depression (difficulty breathing),

seizures, loss of consciousness and coma. If you experience any

of the above symptoms, it is very important that you

or your caregiver contact your doctor right away.

This provides a summary of the most important information

about Lioresal Intrathecal. If you would like more information,

talk with your doctor. You can ask for information about Lioresal

Intrathecal that is written for healthcare professionals. You also

can get more information by visiting www.spasticity.com.

Rx only.

Lioresal ® is a registered trademark of Novartis

Pharmaceuticals Corporation.

Medtronic, Inc., 710 Medtronic Parkway NE, Minneapolis, MN 55432-5604, USA

Internet: www.medtronic.com

Tel. 763-505-5000, Toll-free: 1-800-328-0810, Fax 763-505-1000 200601888a EN NP6975a ©Medtronic, Inc. 2005 All Rights Reserved


R E A D E R S Connecting You to Others

Nearly four months ago

now I had two brain

stem strokes within

four days. The second

one immobilized my right arm

and leg. Having lost the use of

my left arm and leg after the first

stroke, I felt like I’d had a double

whammy! Although recently

retired at 63, I was religious

about working out five days a

week at the neighborhood fitness

center, so I was confused as to

“why me and why now?”

Tony Clikas

Whatever the ultimate answer

to that question, one thing is certain, the strokes might alter my

lifestyle and activities I’d always taken for granted, but it is not

going to stop my love of life or cancel the good times ahead with

my wife, five children and nine grandchildren. I plan to say in 100

percent agreement with my doctors, family, nurses and therapists

that a positive attitude and much hard work pay off a million

times over.

Retraining the brain to recognize those “lost” areas of

movement seemed to me a challenging concept, but definitely

doable. Strange as it seems, I would lay awake in the hospital bed

at 3 a.m., “talking” to my toes or foot and asking them to move.

During my month of therapy, I’d draw smiles from the therapists

when I’d ask for more resistance, more repetitions or more juice

with the e-stem treatments. Almost always, though sometimes

reluctantly, they complied. After all, we were there to work, and

work we did!

In these few months, God has rewarded me with 90 percent

recovery of movement and strength on my left side. I can speak

clearly, walk with a cane and even eat a meal with my dominant

right hand. Oh yes, the toes on both feet are now wiggling on

command!

I realize I’m still a work in progress and there’s a long road

ahead, but life’s going to continue to be A-OK if I stick to the

three Ps — prayer, patience and perseverance. My dad was a

football coach, and his words echo over and over: “Take the

lumps and bruises that life gives, but never quit trying!”

Tony Clikas, Survivor

Daphne, Alabama

0

January/February 2006

Attitude is

Everything!

Denial

seems I’ve been living in

denial for quite a while. For

instance, when I was told I

was a diabetic, my first words

were, “No way, I’m not a sweet-eater.” I

wasn’t overweight, had always exercised.

Obviously I didn’t know anything about

diabetes. Denial? Duh!

When I had a heart attack while

walking, I said, “No, I’m coming down

with a cold, and my chest is heavy.” And

there was my husband with nitroglycerin

in his pocket because of his heart

surgeries. When I finally went to the

doctor, he said, “It’s the heart doctor for

you, young lady.” I said, “I don’t have a

cold or the flu?” That was denial knocking

on my door.

When I woke up to a stroke after 12

days of being unconscious, right away I

said, “You must be mistaken, I can move

and talk.” But I wasn’t able to see on the

left half of both eyes, and that really did

it for me.

When do we stop denying? I can’t

believe how much a body can go through

or how much your mind has to accept.

Now they’ve found a kidney stone, and

I’m to accept this? Does it just go on and

on? Does it ever stop, or do I just go on

denying what’s happening to me?

Loretta Mikosz, Survivor

Spring Hill, Florida

Loretta Mikosz


Embracing Life

Putting your house in order

Means more than cleaning it.

My sister would always leave

her house spic-and-span

whenever she went away on

a trip – ‘just in case’

something happened.

When she died, the house

was spotless, but her estate

was a mess.

Estate planning is critical to your own and

your family’s future. We urge you to send

for our free brochure Planning for Women.

The American Stroke Association hopes

you will find this information helpful in

formulating ideas for your estate plan.

You can also call toll-free 800-AHA-USA1,

visit us at americanheart.org/plannedgiving

or e-mail us at plannedgiving@heart.org.

Zenta Sheehan

Before Nov. 30, 2002, I admit I had it all — an active 56year-old

woman with a comfortable life, good health,

material things. Then a pontine hemorrhagic stroke took it

all away.

When I came to the next day in the ICU, I could no longer hear,

see anything but dark shadows, or swallow. The left side of my face

drooped to my chest, and I could not use my left arm or leg. It was as

though I had been split in half.

We couldn’t even find her will,

to find out what her wishes were. Name

Over a two-and-a-half-year period of hard

work in therapy, I got back the use of my

body and can see (and in color), I can hear,

and my face is normal. My arm still needs

work — fine motor skills.

I was in a wheelchair for two years, but

last year’s New Year’s resolution was to

get out of it, and I did, almost a year now.

I walk with a cane. I visit people and go to

the gym, movies, church or out to dinner.

I’m always up for the challenge.

Thanks to a lot of wonderful people, I

am a survivor. There are the medical people

whose faces I never saw, and the love of my

family and friends and my beautiful husband

John, who never left my side. The stroke

made us stronger and love each other more.

My advice to survivors is keep the faith,

have a good attitude and a sense of humor.

And go outside your front door and let life

embrace you.

Zenta Sheehan, Survivor

Taunton, Massachusetts

Please send to:

American Stroke Association

Planned Giving Department

7272 Greenville Avenue

Dallas, TX 75231-4596

c Please send me the free booklet Planning for

Women. (CDA)

c Please put me in touch with an American Stroke

Association Representative. (CDD)

c I am considering a gift to the American Stroke

Association through my estate plan. (CDC)

c I have already included the American Stroke

Association in my will/estate plan. (CDB)

Address

City

State ZIP

Phone

Birthdate E-mail

06GPGCA SC 01/06

©2006 American Heart Association

January/February 2006

KC-0080


R E A D E R S Connecting You to Others

Do I Know You?

My name is Patrice

Vacca. I’m 51

years old and am

a retired rehab

nurse. I once took care of

stroke survivors; now I am one.

My first stroke hit my left

upper body, so I could walk

but couldn’t feel my left arm

at all. At the hospital, it got

worse: I couldn’t read, write

or remember the name of

my live-in companion. After

talking to another friend, I

learned my boyfriend’s name,

so you’d think the problem Patrice Vacca

was solved. But it wasn’t.

He came to visit, but he was with another man (I couldn’t

remember his name either). They both kissed me hello, and I still

didn’t know which one was mine, and I felt very uncomfortable.

The guys didn’t know I didn’t know who was who, but finally one

of them addressed the other by name. That’s when I knew who I

was going home to! The hospital wanted me to go to rehab — me,

who had worked as a rehab nurse. No way, I was discharged home.

That’s where a new life began. I used to bake and thought I’d

surprise my boyfriend with a cake. Unfortunately, I forgot the

eggs. Then I tried to fix dinner. When my boyfriend got home, he

took a sniff and found the rice had burned. I had forgotten I’d put

it on, and although I smelled something burning, I didn’t put the

two together.

People would walk up and start talking, and I would just stare

blankly and say, “Who are you? I’ve had a stroke. Do I know you?”

As if that weren’t bad enough, I had another stroke, which

affected my right upper body. I had to relearn many things: how

to eat, swallow, read, write, sew (I make quilts), bake and cook. I

think my stubbornness, persistence and the loving support of my

friend and son made all the difference. I recently lost my son, but

they were both at my side when I cried, yelled, prayed and threw

temper tantrums like a 2-year-old.

I have survived lupus, fibromyalgia, diabetes, carotid artery

surgery and the death of my 22-year-old son. I am a fighter, and

reading the articles from other survivors, I know I’m not alone.

Patrice Vacca, Survivor

Moscow, Pennsylvania

January/February 2006

Finding

Another Voice

Here or there, everywhere or anywhere,

around the corner,

afar, remote, from the distance,

at that moment, what happened?

All around me,

enveloped by silence

within my head, would I still be alive?

would I be able to find my own voice?

When I missed my memory,

I could not say any name, or sound a sound,

but to wait until dawn, eager to leap, yet to imagine,

would I find another voice in my recovery?

Since I never wrote a poem, ever,

throughout my life before, my computer and I:

We would discover a memory, a map,

Leonard Zion

for a wider world beyond.

Leonard Zion, Survivor

Boston, Massachusetts


Creating Your

Own Haven

by Mark Warner, A.I.A.

“A period of rest or relief.” This is how the

dictionary defines respite, but for those who know the

realities of caring for someone with stroke, respite

means much more.

Caring for a loved one with stroke is a twofold task.

You have to attend to the needs of someone else, but also

your own. And this isn’t easy. Your family member’s

demands may leave little time for you.

Many caregivers selflessly sacrifice everything

for their loved ones, including their own health. But

caregivers need to realize that stress builds silently and

can take a heavy toll. Therefore, you need a plan — a

plan to take care of you.

This includes learning all you can about the disease

so you’ll be better prepared when new challenges arise

— seeking out support and finding consolation and

validation through your support network, and creating a

respite zone in your home.

A respite zone — a term you won’t find in the

dictionary — is an area within your home set aside just

for you, the caregiver. It is your space alone. It can be

your bedroom, an office, a room upstairs, the bathroom

or even a bench outside in the garden or on the porch.

It’s a place where you can relax, recharge and take a

break while your loved one rests or is taken care of by

someone else.

A respite zone — a term you won’t find

in the dictionary — is an area within your

home set aside just for you, the caregiver.

But what it really is, is essential — something that

no live-in caregiver should be without.

Here are a few quick and easy steps to creating your

respite zone:

• Choose your favorite kind of respite. Is it reading,

listening to music, gardening, talking with friends…

or building model airplanes? It could be anything.

• Determine when you are available to use this retreat.

If your family member naps in the afternoon,

perhaps that is the opportune time. Do you have

family or friends who visit after lunch? Take your

break then. If the only period you can obtain respite

is at night, maybe the garden won’t work (unless

you like gardening in the dark), but a computer will.

• Find free space in your home. Do you have a front

or back porch? A den or a guest room? Are there

rooms upstairs that are no longer used or visited by

your family member? Could you convert a corner of

your bedroom?

• Decide what it would take to make your respite

zone a Shangri-La. Make a list. Be creative, yet

reasonable. Comfort, security and practicality should

be your primary goals.

January/February 2006


How you prepare your respite zone depends on

how you want to use it. One caregiver’s retreat is a

bathroom stocked with scented candles, potpourri, a

cassette player, favorite tapes and a bubble bath. For

another, it’s the computer room, where time is spent

chatting with friends all over the world; searching

for information; and shopping. For others, it’s the

workshop, where they build birdhouses that add to

the pleasure of gazing into the backyard.

Wherever it is and whatever it looks like, your

respite zone should be just for you. It’s the place

you will go to pay bills or just relax, watch TV,

read or listen to music. You need to feel secure that

important papers and equipment (computer disks or

bills, for example) and your special things will not be

tampered with, removed or thrown out. So select and

prepare your respite zone appropriately.

Aside from stocking the area with essentials,

ensure that your loved one doesn’t enter your respite

zone. Keep in mind that this is your space, where you

spend your time for you.

Mark L. Warner, A.I.A., is co-founder of Ageless Design

Inc., Jupiter, Fla., a consulting and information company.

He is also editor-in-chief of The Alzheimer’s Daily News,

co-creator of the Alzheimer’s Store, and author of The

Complete Guide to Alzheimer’s-Proofing Your Home and the

soon-to-be-released In Search of the Alzheimer’s Wanderer.

Adapted and reprinted with permission from the Summer

2005 issue of Vantage, For Caregivers of Persons with

Alzheimer’s Disease and Related Illnesses, a quarterly

publication of the Alzheimer’s Foundation of America. For a

free subscription, call 866-AFA-8484 or visit www.alzfdn.org.

+A361_Northstar Neuro 1 10/7/05 11:07:25 AM

January/February 2006


Controlling Post-Stroke

hen a person

has a stroke,

the injury to

the brain can

manifest itself in

various ways. Stroke

can affect movement, speech, behavior,

memory and emotions.

What might be less obvious about

stroke’s effects is the increased

chance of developing seizures.

Seizures are brain malfunctions that

alter a person’s awareness.

During a seizure, the brain cells fire

large bursts of energy, a departure from

the normal on-and-off firing pattern.

The seizure may last only a few seconds

or minutes and trigger involuntary

body movements, strange sensations

or blackouts. The Epilepsy Foundation

estimates that seizures strike 22 percent

of stroke survivors.

A Scar in the Brain

“Seizures occur whenever there

is a scar in the brain,” said Ralph L.

Sacco, M.D., professor of neurology

and epidemiology at Columbia

University Medical Center. “When

stroke injures part of the brain, it

leaves a scar, and this scar can then

trigger abnormal electrical activity

that can start a seizure.”

by Mike Mills

Dr. Sacco said that bleeding

(hemorrhagic) strokes are more likely to

produce seizures than ischemic strokes.

That accounts for many of the seizures

that hit 2–6 percent of stroke survivors

in the first 30 days, making seizure risk

the greatest during that period.

Seizures strike

an estimated

22 percent

of stroke

survivors.

Focusing on Treatment

Although research has led to a

greater understanding of how to treat

seizures, no cure has been found.

Physicians focus on controlling seizures

with medicine while keeping side

effects to a minimum.

Once a seizure occurs, getting help

quickly is essential. Promptly treating

seizures seems to lower the risk of

having more seizures, Dr. Sacco said,

and increases the chance of becoming

seizure-free. Medications may be less

successful once seizures and their

consequences become established.

“The longer you go seizure-free on

medicine, the lower your risk and the

more reasonable it may be to take you

off medicine.

“If you have seizures early in the

period of a stroke, yes, you are still at

risk for long-term seizures. However,

suppose that you have them early, get

treated and remain seizure-free. You

may be over the acute period and be

able to come off the drugs.”

A Form of Epilepsy

Doctors treat a post-stroke seizure in

much the same way they treat epilepsy.

Although it takes more than one seizure

to classify someone as epileptic, Dr.

Sacco said, almost all post-stroke

seizures are treated with the same anticonvulsant

drugs given for recurrent

epilepsy, including phenytoin (Dilantin),

carbamazepine (Tegretol), phenobarbital

(Solfoton), valproic acid (Depakote) and

lamotrigine (Lamictal).

Epilepsy, a general term covering all

types of recurrent seizures, affects about

2.3 million Americans. Although people

of all ages are affected, particularly

the young and elderly, nearly half of

all cases develop before the age of

10. Epilepsy in young people comes

January/February 2006 5


from a variety of causes, including

head injuries, poisoning, stroke, brain

tumors, genetic factors, serious illness

and problems in brain development

before birth.

In older people, the cause is more

likely related to physical changes from

aging, including cardiovascular disease,

stroke, brain tumors and Alzheimer’s

disease. Of these, stroke is the most

frequent cause.

“If you are a stroke survivor and

haven’t had seizures yet, having another

stroke is going to increase your risk of

seizures,” Dr. Sacco said.

Effective lifestyle changes to reduce

the risk of seizures are the same as those

to reduce the risk of recurrent stroke.

Controlling weight and blood pressure,

increasing physical activity and eating

nutritious food will help.

Out of Control

With most seizures, the effects last

only a few seconds or minutes, and

normal physical and mental functions

are restored. But a condition called

status epilepticus, in which a person has

an abnormally long seizure or does not

regain consciousness between seizures,

is life-threatening.

A seizure lasting longer than

five minutes, for practical purposes,

should be treated as a status

epilepticus condition. Immediate

medical help is necessary.

“Status epilepticus has been known

to cause further injury (to the brain),

especially if it’s occurring around the

time of the stroke,” Dr. Sacco said.

“Status epilepticus in anybody will

increase the risk of mortality.”

Drug Interaction

Stroke survivors who take blood

thinners such as warfarin must be

carefully watched by their doctors.

Warfarin, an anticoagulant, fights

the formation of blood clots, which

could cause another stroke. Because

it affects the liver, warfarin magnifies

the detrimental effect that anti-seizure

medicines have on the liver.

For the same reason, Dr. Sacco

recommends that alcohol, whose

harmful effects on the liver are well

January/February 2006

known, be avoided while taking antiseizure

medicine.

Common drugs used to prevent

recurrent stroke — aspirin, clopidogrel

and aspirin-dipyridamole — are not as

dangerous when taken with anti-seizure

medicines, he said.

When to Medicate

Should anti-seizure medicine be

given before a seizure occurs? Opinions

and practices vary. Some doctors

start medicine soon after a stroke as a

preventive measure, and others prefer to

wait until after the first seizure.

“For most strokes you wait until

you have the seizure,” Dr. Sacco said.

“For some bleeding strokes, some

people have advocated prophylactic

(preventive) anti-seizure medications

only in the early period after a stroke.

But for the general stroke patient, you

would not medicate until you have

the seizure.

“All drugs have risks, and you don’t

want to use a drug if you don’t need it.

Not every stroke patient has a seizure.”

Let Others Know

Fortunately, seizures in themselves

are usually painless, and they don’t

get worse over time. The brain

malfunction in epilepsy is temporary,

and the condition is not to be confused

with mental illness. People with

epilepsy are just as intelligent and

capable as anyone else.

Dr. Sacco said it’s a good idea for

people who have seizures to wear a

medical alert bracelet so that when a

seizure occurs, people around them

won’t be unduly alarmed. People who

live and work around those with epilepsy

should know what to expect and what to

do. (See “If You See Someone Having a

Seizure” on this page)

“People always get very concerned

when they see someone have a seizure,”

Dr. Sacco said. “Most of the time, a

seizure is survivable. Usually, it will

pass and the person wakes up. The

problem occurs when a seizure occurs

and they are driving a car, or they fall

down a flight of stairs, or they get

injured during the seizure.”

If You See Someone

Having a Seizure

If you see someone having a

seizure with convulsions or loss of

consciousness, here’s how you can

help:

1. Roll the person on one side to

prevent choking on any fluids or

vomit.

2. Cushion the person’s head.

3. Loosen any tight clothing

around the neck.

4. Keep the person’s airway open.

If necessary, grip the person’s

jaw gently and tilt the head back.

5. Do not restrict the person from

moving unless in danger.

6. Do not put anything into the

person’s mouth, not even

medicine or liquid. Contrary to

widespread belief, people cannot

swallow their tongues during a

seizure or any other time.

7. Remove any sharp or solid

objects that the person might

hit during the seizure.

8. Note how long the seizure

lasts and what symptoms

occurred so you can tell a

doctor or emergency personnel

if necessary.

9. Stay with the person until the

seizure ends.

Source: National Institute of Neurological

Disorders and Stroke (“What to Do If You

See Someone Having a Seizure,”

www.ninds.nih.gov/disorders/epilepsy/

detail_epilepsy.htm)


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January/February 2006


F E A T U R E

Born to Survive

by Jon Caswell

s long as my child is healthy, nothing

else matters.” This is a thought many

parents have in common. Pregnant women,

concerned about birth defects, Down

syndrome and other potential dangers,

carefully watch what they eat and drink,

but no one ever expects something like

stroke to happen to her newborn. Yet the

truth is that even babies have strokes. So

do children and adolescents. In fact,

stroke can strike a fetus in the womb.

January/February 2006


Samuel Baird was born on

Tuesday, September 14, 2004.

On Wednesday, he turned blue.

By Thursday he was in a

neonatal intensive care unit.

All Baird family photos by JohnHallPhotography.com

January/February 2006 9


“How Could This Happen?”

Samuel Baird was born on Tuesday,

Sept. 14, 2004. On Wednesday, he turned

blue. By Thursday he was in a neonatal

intensive care unit. After multiple

diagnostic tests, including a CT scan, the

diagnosis was simply startling — stroke.

Samuel’s mother Jude recalled that day:

“In delivering the diagnosis, the words

‘brain damaged and handicapped’ were

used, and that’s all I heard. I didn’t hear the

word stroke. I have a brain-damaged sister

who is institutionalized, in her 40s. I kept

looking at Samuel and thinking how could

this happen to such a beautiful baby? We

were devastated, words can’t even describe

how we felt.”

Samuel’s parents learned that about

a third of pediatric stroke survivors experience no longterm

effects, a third have some deficits and a third require

considerable care. “That made us feel somewhat better,”

said father Gary. “They said because of the location of the

stroke, right-middle cerebral artery, the motor skills on

his left side would be affected, but the doctor didn’t know

how it would

manifest itself.

We were relieved

to hear that there

was a 30 percent

chance he would

not be cognitively

impaired. It

seemed something

of a blessing and

we latched onto

that.”

Jude searched

the Internet for

information on in

utero stroke. The

material she found

was either outdated

or very hard to

interpret without a

medical background. It was also difficult to find statistical

data about types of injury and prognosis.

The Bairds, who live in Scottsdale, Ariz., enrolled

Samuel in the Arizona Early Intervention program, which

provides free therapy to children with developmental

challenges. At three months, Samuel began physical

therapy. Gary did baby massage every night, which Samuel

loved and responded to well. By six months, he was seeing

0

January/February 2006

Samuel, Jude and Gary Baird

three therapists a week and had achieved every milestone.

“At four months, the doctor was very optimistic and

felt the cognitive and language centers were likely not

affected,” said Jude. “However, to a certain extent it is a

matter of ‘time will tell.’ We just feel very grateful that

Samuel has done incredibly well to date. The physical,

occupational and development therapy have been

invaluable.

“He definitely favors his right hand,” said Jude. “We

offer him things on his left side, but he still uses his right

hand. His physical therapist says he has higher tone on his

left side, but I can’t tell when I watch him walk.” Samuel

has progressed so well that at his one-year checkup, his

neurologist said he had to check the CT scan to know he

had even had a stroke.

The Bairds, who are from New Zealand, received support

from all over the world. “My parents flew out the day they

heard and were a tower of strength,” Jude said. An Arizonabased

group called Raising Special Kids also helped.

“They put you in touch with a family who has a situation

similar to yours,” said Jude. “I was contacted by a woman

whose daughter had had a stroke as an infant, and she was

a tremendous support. She answered all my questions. You

know, when you’re a mother, your heart’s not your own, so

it was very helpful to have someone who had been there.”

(Raising Special Kids is specific to Arizona, but there are

similar organizations in other states. To find a group in your

state, see Parent to Parent USA on p. 32.)

The lack of information about pediatric stroke spurred

Gary to action. He has joined Train To End Stroke (TTES)

and has raised $9,000 with a target of $25,000. Beyond his

fundraising goal, Gary is encouraging the American Stroke

Association to make a grant of $150,000 to fund pediatric

stroke research and to add related information to its Web


site. “I think it is easier for people to deal with traumatic

situations if they have good information that they can

understand,” Gary said.

“It’s important for new parents in this situation to

understand that a baby’s brain has an incredible ability to

rewire,” said Jude. “But it’s also important to get them into

therapy as soon as possible.”

A Stroke at Birth

Twins Todd and Josh Anthony of Edmond, Okla., share

many things. But only one of them, Todd, has a history of

stroke. At birth, Todd had a stroke that affected both sides of

his brain (“bilateral infarct”).

At the very beginning, the stroke went undetected. But then

while still in the nursery of the hospital, Todd started having

breathing problems. Tests uncovered a small hole in his heart

called a ventricular septal defect. His condition worsened over

the next 24 hours, and he refused to nurse and couldn’t be fed

with a bottle.

The Anthonys are concerned

about the future. If Todd has

disabilities, they wonder, will

he be accepted by other kids?

“He was inconsolable at times, crying and twitching,

but the doctors and nurses were telling us everything was

normal for a premature baby,” said Letitia Anthony, Todd’s

mother, who had given birth two weeks early. “But on

the day we were to be discharged, there was a lot more

twitching, and my husband Scott insisted Todd be given

more tests before he was released.”

The pediatrician ordered a CT scan and an EEG. Both

were abnormal and the doctor ordered an MRI. That’s when

they discovered

the bilateral

infarcts. “Our

neurologist

told us he had

never seen that

before and gave

us a gloomy

prognosis,” said

Letitia. “He said

Todd might not

walk or talk.”

Both Letitia

and Scott

are physical

therapists.

“As a physical

therapist, you

Todd and Josh Anthony

know to start therapy right away, so we started as soon as

we got home. I think this has been a lifesaver for Todd,”

Letitia said. “He definitely has deficits on his right side, but

he is able to use that side. When he falls, he always falls to

the right. He just started walking two weeks ago, almost 16

months, which is not considered late, but it’s slower than

average. Josh started walking at 12 months.”

Initially, Letitia returned to work and put the boys in day

care, but Todd’s progress seemed to slow, so Letitia decided

to stay home. “My first month back, he made huge gains.

The physical therapist from Sooner Start (a state-sponsored

program in Oklahoma for babies with developmental

challenges) would come once a week and show me what to

do, and then I worked with him every day. We were fortunate

that we were financially stable enough that we could make

ends meet. We’re paying bills, but that’s about it.”

At 18 months, neither Todd nor Josh is talking, but both

are making sounds. “We get a speech evaluation every two

months, and he’s on track. If you ask him what a cow says,

he’ll say ‘moo.’”

Todd Anthony

The Anthonys are concerned about the future. If Todd has

disabilities, they wonder, will he be accepted by other kids?

What kind of relationship will he have with his brother?

“Right now, they get along very well. Though Todd’s

about two months behind Josh, neither one realizes

anything is different. They share toys. They fight, just like

normal boys. They’re 18 months now and going to day care

two half-days a week. We thought the social interaction

would be good and also good for them to be away from me.

“We’re hopeful and optimistic for the future because in the

past 18 months he’s made such tremendous progress,” said

Letitia. “But we won’t know if there are cognitive problems

until he’s older and in school. Of course, we hope they both

go to college, become good citizens, fall in love and get

married, but there’s always a ‘what if…’ in the background.”

January/February 2006


Cause Doesn’t

Change Outcomes

When Ashley Beach was six months old, she woke her

parents, Kim and David, one night with horrible screams, but

her brother had had a history of stomach problems, and they

thought it was probably a stomach virus.

The next morning the pediatrician agreed and sent her

home with anti-nausea medicine. “That’s when she started

tongue thrusting,” said Kim. “I thought she was thirsty, but it

was actually because she was having seizures. At eight that

night, she had a grand mal seizure.”

The doctor thought it was a reaction to the medicine, but

Benedryl didn’t help, so the Beaches rushed their baby to the

emergency room in Tulsa, Okla., where they lived at the time.

A CT scan and subsequent MRI showed the

unimaginable — Ashley had had an ischemic stroke.

The doctors were unable to identify a cause, as is often the

case with stroke in infants. “I think the biggest thing we’ve

learned from all this is that cause doesn’t change outcome,

so ultimately the cause isn’t important,” said Kim. “Cause

is important for parents at the beginning because they want

something to blame, but after awhile it just doesn’t matter

because your child is still here.”

Her parents’ next question was: “What kind of life would

she have?” They didn’t waste time waiting for an answer:

Ashley started therapy before she left the hospital. They

enrolled her in Sooner Start, a state-sponsored program

in Oklahoma for babies and children with developmental

challenges. “They were great because they worked with

things that were actually in her surroundings,” Kim said.

Kim suggested to several therapists that a video for

parents and grandparents would really help them help their

children. One of their physical therapists, Jenna Zervas,

took hold of the idea. Together, Kim and Jenna produced

January/February 2006

a video of exercises appropriate for any

developmentally disadvantaged child. Called

Baby Builders, the video “helped make

something good out of a bad situation,”

Kim said. (For more information, see “Baby

Builders” on p. 32.)

Ashley turned 7 in July; she’s in the first

grade and tests at a level normal for her age.

Although she has seizures, they’re small and

infrequent and she’s not on medication for

them. She’s had two surgeries to lengthen the

tendons in her left foot. “She’ll have more

surgeries because her brain is telling her

tendons to be tight,” Kim said.

Despite these challenges, Ashley is active:

she has taken classes in tap dancing and

cheerleader-gymnastics, and has played

Ashley Beach soccer. She loves to go 4-wheeling with her

family and walk the ruins at Mesa Verde

National Park near the Beaches’ home in Durango, Colo.

“Physically, she doesn’t know any different, but she does get

tired of being the slowest at things. Emotionally, she feels

like she’s the only kid who ever had a stroke.”

Ashley’s situation has affected her brother Chris, who is

two years older. “When he was five, he asked his pediatrician

what he had done to cause his sister’s stroke,” Kim said.

Ashley with brother Chris

“Poor little guy, he had carried that a long time. I feel like he

lost his childhood by going to the hospital all the time. He

learned to count by touching numbers in the elevator.

“He’d get jealous during therapy because she got all the

attention. Every once in a while I see he’s tired of everyone

always asking about his sister.

“Early on, I got a call from a mother of a pediatric stroke

survivor, and she said that I had to grieve. I said, ‘Why?

Ashley’s still alive.’ And the woman said, ‘Yes, but all

your dreams have died.’ And I realized that was true, all

the dreams we’d had for the child born in July had died in

January. We had to develop new dreams.”


Kasey Koller

A Summer to Remember

L-R: Kasey, sister Hope, cousin Bryson, brother Seth and cousin Kristin (behind)

On May 19, 2003, Dale and Tanya Koller put their 11year-old

daughter Kasey on the bus for her last day of fifth

grade in Panama City, Fla. Later that morning, they received a

call from Kasey’s school. Kasey was having convulsions and

needed them right away.

By the time they got to the school, however, their daughter

had already been taken to the hospital, where she was

admitted with stroke-like symptoms.

Many hours later, ultrasound imaging revealed the agent

of the terror — an inch-long tear in her carotid artery. “Kids

damage the carotid all the time,” said Dale, “but something

happened that caused the artery to crimp. Running caused her

blood pressure to rise and that burst the artery down deep near

the aorta, where a tear could have been fatal.

“When the doctors came back with a stroke diagnosis, I

thought it had to be a misdiagnosis,” said Dale. “They said on

a scale of 1–10, her stroke was an 8.”

Because of the severity of her situation, Kasey was

transported 200 miles by ambulance to another hospital. She

was alert when she arrived, but on the second day she went

into a coma. “She was asleep and motionless and completely

unresponsive,” said Dale. “The doctors couldn’t answer any

of our questions, but they said if she woke up and started

moving, that would be a good sign.”

Two days later she awoke, but couldn’t move her right side.

The stroke had injured areas that controlled comprehension

and dexterity as well. The worst-case prognosis was that

she would never again walk or talk; the best-case was being

released to rehab in a week.

“When she first came to, she could only say ‘ce-ce’

and try to move. Her facial muscles were paralyzed, too. I

thought it was bad, but the doctors said it was good that she

was making sounds,” Dale said. “All the doctors agreed that

age was on her side.”

Within two days she was

learning to walk and talk

again — one step and one word

at a time, but it was a miracle

to her parents. By the third day

she was walking on her own and

speaking fragmented sentences.

The following weekend she was

released to rehab — the best case

had been realized.

With summer just beginning,

Kasey’s goal was to return to the

sixth grade on time. With a lot

of hard work, she made it. “I’d

say she’s 90 percent recuperated,

making A’s and B’s,” Dale said.

“She’s gotten her walk back, but

her right arm is still weak. The

doctors say she can get that back, but it’s up to her. At 13, she’s

a little embarrassed by it and compensates with her left hand.

“We were scheduled to attend a seminar on the Saebo

glove because they say with that she’ll be able to get her

hand back. Unfortunately, the seminar was in New Orleans

the weekend Katrina hit. But the fact we’ve got her back

mentally, we couldn’t be more pleased.”

Stroke in Children

Stroke in children peaks in the first 30 days after birth.

The rate of stroke for infants less than 30 days old is 26.4

per 100,000 live births per year: (17.8 ischemic stroke, 6.7

hemorrhagic stroke).

For children between ages 1 and 14, the rate is 2.7 per 100,000.

The outcome of childhood stroke is moderate or severe in

42 percent of cases.

Compared to white children, black children have a higher

relative risk of stroke of 2.12.

One out of 10 children with ischemic stroke will have

another stroke within five years.

Cerebrovascular disorders are among the top 10 causes

of death in children, with rates highest in the first year.

Stroke mortality in children under age 1 has remained the

same for 40 years.

Source: Heart Disease and Stroke Statistics — 2005 Update

Learn more at StrokeAssociation.org/strokeconnection:

• Rehab psychologist Mark Sandburg discusses emotional

and cognitive recovery of child survivors.

• An update on Brandon Zimmerman (SCM March/April

2002) who had a stroke when he was 6 months old.

January/February 2006


Doctors Talk

Stroke occurs in about 26 of every 100,000 births.

Stroke Connection talked to two experts on

the subject. Dr. Jin Hahn is chief of pediatric

neurology at Lucile Packard Children’s Hospital

at Stanford, in Palo Alto, Calif., and also an associate

professor at the Stanford University School of Medicine,

in Stanford, Calif. Dr. Donna Ferriero is chief of child

neurology at the University of California — San Franciso

(UCSF) Children’s Hospital and professor of neurology and

pediatrics at UCSF School of Medicine.

Healthcare professionals distinguish three categories of

childhood stroke:

• Neonatal or perinatal — stroke in utero up to

approximately 28 days after birth

• Infant — from a month to a year

• Childhood — from a year to age 14; and adolescent

— from 14 to 18 years.

SCM: What are the leading causes of stroke in utero?

Dr. Hahn: Probably an embolic stroke, which is a clot that

migrates into the cerebral vasculature. A clot may form in

the mother and pass through the placenta to the child, or it

may develop in the baby’s circulatory system. Either type of

clot can travel to the child’s brain.

Dr. Ferriero: We don’t really know the causes, but there

are certain risks, like infection and bleeding tendencies or

lack of oxygen at birth that are highly associated with it.

SCM: Is the baby likely to suffer from another stroke?

Dr. Hahn: If it was embolic from a placental clot, it

is unlikely to recur. If it has to do with heart or vessel

problems, they may have recurrent events.

Dr. Ferriero: The good news is that neonatal stroke recurs

in less than 1 percent of cases.

SCM: What is the prognosis generally for a child who has

experienced in utero stroke?

Dr. Ferriero: Over half of the children will have some

degree of neuro-developmental problems, things like

motor impairment, learning disabilities, language problems,

seizures or behavioral problems.

Dr. Hahn: It depends on how large the stroke lesion is and

what the cause is, but if it’s a onetime event they are likely

to have some sort of hemiparesis; about a third will have

recurrent seizures.

SCM: What are the leading causes of stroke in infants?

Dr. Hahn: Some type of congenital heart disease, such as

a hole in the heart or other complex malformations of the

valves or aorta.

SCM: What are the leading causes of stroke in adolescents?

January/February 2006

Dr. Donna Ferriero Dr. Jin Hahn

Dr. Ferriero: In adolescents, causes may be systemic

diseases like infection, metabolic disorders and congenital

heart disease, and a very big one is sickle cell disease in

African-American children.

Dr. Hahn: We run into acquired heart disease and

some vascular malformations, such as arteriovenous

malformations. Others have a primary vascular disorder

like Moyamoya disease, or other systemic disorders, for

example lupus, and sickle cell anemia can be a big risk

factor. Drugs of abuse can also cause strokes. Another

major group of disorders is clotting dysfunctions or genetic

disorders where there are protein deficiencies that allow

clots to form more easily.

SCM: Is a child’s brain more plastic than an adult’s? Do

children recover more easily from stroke?

Dr. Hahn: Yes, a child’s brain is more plastic so that

improves their chances for recovery. They have a great

potential for recovering functions. Often the children come

out a lot better than one would predict. It really depends on

what part of the brain is affected.

Dr. Ferriero: But children still end up with deficits.

Perhaps with appropriate therapy they might respond

better or more quickly.

SCM: Will other areas of the brain compensate for those

damaged by the stroke?

Dr. Ferriero: Often, especially if the damage occurs early.

Dr. Hahn: They do to a certain extent in a child, depending

on how big the area injured is. If it’s a relatively small area

that doesn’t affect motor skills, but if it’s a language area

they may not recover completely.

SCM: If one child has a stroke, are other children in the

family at higher risk? Are future pregnancies at higher risk?

Dr. Ferriero: We don’t have the full answer for this.

Probably not for neonatal stroke. For childhood stroke, it

depends on the underlying disease process, whether it is

inherited or not.

Dr. Hahn: Yes, if the stroke is caused by a genetic

problem, like thrombophilia. So if you can determine a

genetic cause, other children would be at increased risk.


Comedian and

stroke survivor

John Kawie’s

Life

at the

curb

A comical perspective

on stroke survival

“I Get Around”

The Godzillas of the urban armedand-dangerous

are, without a

doubt, mothers with strollers!

When I was home,

recovering from the stroke, and able to walk

with a cane, the high point of my day was

to go to Barnes & Noble. But in order to get

there I had to navigate the streets of New

York City. This is where I’d meet people with

personal weaponry: rollerbladers, kids on

Razor scooters, bike messengers, Chinese

food delivery guys screaming down the

sidewalk on their bikes like Uma Thurman

is chasing them in a sequel to Kill Bill 2.

But the Godzillas of the urban armed-anddangerous

are, without a doubt, mothers with strollers!

Don’t get me wrong. I love mothers. I love babies. But there is something that

happens when you combine the benign loving mother, innocent baby, cell phone, iPod,

Blackberry, a triple latte caramel macchiato with a double shot, and a stroller. Hey, this

is the 21st century, and with all those stroller accessories we should call it the modern

parent’s BMW, “Babies’ Migratory Wheels.”

This is New York City, so here even mothers have attitude. Of course, they’ve

been in Starbucks for the last 24 hours, they’re all gunned up on coffee. “Look I’ve

got a baby, and I’ve got a stroller, so get out of my way you S.O.B., or I’ll cut you off

at the knees!”

I would try to be sympathetic, but mom’s in a hurry, she’s on her cell, sucking down

her coffee, and the kid’s wailin’ up a storm. He doesn’t know what’s going on, and the

more he cries, the faster she goes. Does she think the wind will make him feel better?

Of course, the faster she goes, the more he cries, because from his point of view it’s

like the Indy 500. He’s terrified, so naturally he starts to pee. Wanting to be changed,

he cries louder, and the louder he cries, the faster she goes, like a circle of hell on

wheels, and I’m in the line of fire!

That’s just the single stroller, or “roadster” experience. Then, there’s the doublebarreled

BMW, the SUV of strollers.

What is the deal when you have two kids?

You gotta take them both out at the same time?

You can’t just take one kid out and put the other

one in storage? What about your underwear

drawer? You stash your money and jewelry in

there, so the kid should be safe, too.

Let’s not forget the guys in electric wheelchairs. I know they have an edge. I was

in a wheelchair once, too. But as soon as I hit the street, do I have to play chicken

with Ironside? It’s like that scene in “Rebel Without a Cause” where James Dean plays

chicken with another guy. Dean rolls to safety, and the other guy rolls off the cliff. Well,

I’m the other guy.

Now, I’ve got a problem with stationary objects — cracks in the sidewalk,

mailboxes and parked cars. I’m not afraid of going off a cliff. I’m afraid of getting

impaled on a parking meter.

One day, most people will have a gravestone that reads, “Bob, a Good Man, May He

Rest in Peace.” I’ll have a parking meter that says, “Time expired, here lies John.”

Editor’s Note: Read John’s personal stroke story, “Life is at the Curb,” from the September/October

2003 issue of Stroke Connection at strokeassociation.org/strokeconnection, or book his one-man

show about stroke recovery, “Brain Freeze,” by contacting him at jkawie@aol.com.

January/February 2006 5


Saving

Strokes,

Changing

Lives

by Sam Gaines

Ask the typical golfer why he or she heads

for the links, and “therapy” probably

won’t be the first answer you get. But the

Saving Strokes golf event, organized by the

American Stroke Association’s Sacramento, Calif., office,

is therapy and more for survivors and their caregivers.

The event is open to all stroke survivors, whether they’re

experienced golfers or have never set foot on a course.

Originally an idea of the late Derrek Dickey, a former

National Basketball Association star and stroke survivor,

26

Survivors receive one-on-one instruction

January/February 2006

Honing his game at Saving Strokes

Saving Strokes was first held in September 2000, in

Sacramento. After his stroke, Dickey wanted to get back

out on the links. But he faced a major obstacle: He’d lost

muscle control in the left side of his body and was having

trouble standing and walking.

“Balance was a big issue for him because of his height,”

said Sandra Lema, ASA communications director in

Sacramento, of the 6'7" Dickey. “Through golf and rehab,

he had been able to recover some of his balance and began

enjoying the game he loved.”

Survivor Ed Parris reaped the same positive results

through therapy on the fairways. “Ed had always enjoyed

golf before his stroke, but he was afraid he’d lost the

opportunity to enjoy it again because of his condition,”

said Ed’s wife and caregiver Sandy. “But he learned how

to swing with one hand through a program for stroke

survivors at Haggin Oaks Golf Complex in Sacramento.

So when we found out about that first Saving Strokes

event, we were very excited. And we certainly had a

wonderful time there.” The Parrises have returned for

every event since.

About 25 survivors and their caregivers attended

that first event. Derrek Dickey served as honorary chair

and gave an inspiring demonstration of his one-handed

200-yard drives. Saving Strokes has since expanded

to numerous locations with hundreds of participants

in California and Nevada — and interest continues to

spread. Before the April 2005 event, word of mouth had

resulted in nearly 200 participants.

“I came back this year because I had such a great time

last year,” said Suzann Ikeuchi, a survivor and avid golfer.


“The ASA people do a great job of getting everyone

involved. My husband enjoyed the chair massage, and we

both enjoyed the enthusiasm of everyone involved.”

At every Saving Strokes event, there’s a three-hole

“fun round,” and golf pros specially trained to work

with survivors are on hand to provide a quick lesson to

participants. The Comfort Green, added as a way to include

caregivers, offers chair massage and other personal wellbeing

products and services to pamper caregivers and any

survivors who stop by.

“What we offer there varies a little from year to year, but

we’re always focused on giving some personal attention to

our guests,” said Selinda Shontz, RD, program manager for

the American Stroke Association.

The City of Sacramento embraced Saving Strokes from

the beginning. The Northern California PGA has also

become an important supporter.

For golf pros, the event is an opportunity to give

back while promoting the game they love as therapy for

survivors.

“It’s recreational therapy,” said Jim Colliflower,

golf pro at Haggin Oaks Golf Complex, home to

Sacramento’s Saving Strokes event. “Getting outdoors

and being active is a lot of fun when you’re enjoying a

beautiful walk along with it.”

Colliflower now specializes in teaching the game to

stroke survivors. “A lot of the folks we work with are going

through some serious challenges to their abilities. Golf

provides a way for them to meet those challenges head-on

and see results while having a good time.”

Lema adds that the event offers more than physical

therapy. “It’s a great excuse to get out of the house and

join others in a fun activity,” she said. “We’ve seen a

number of participants come reluctantly but get caught

up in the fun of it. Some are golfers who have shied

away from the course since their strokes. Some have

never played before. Either way, it’s fun to be a part of

this, to be around people who are having a good time and

helping each other.”

Joseph Conover, a first-time participant in 2005 at

Sacramento, couldn’t agree more. “What a triumph for the

American Stroke Association! What a blessing for stroke

survivors! The smiles, laughter and sheer joy reflected in the

faces of those attending will remain a picture in my mind

until I die. It is great to know someone really does care!”

Save the Date!

Saving Strokes events are already scheduled

for these locations in 2006:

April 2006

Sacramento, Calif.

Haggin Oaks Golf Complex

May 2006

Aptos, Calif.

Seascape Golf Club

Santa Rosa, Calif.

Location TBA

San Jose, Calif.

Coyote Creek Golf Course

San Francisco, Calif.

Harding Park

Las Vegas, Nev.

Location TBD

Pleasanton, Calif.

Pleasanton Golf Center

For more information regarding any of these events,

please call 1-888-4-STROKE.

The Origin of Saving Strokes

Saving Strokes was developed by Selinda Shontz,

RD, program manager for the American Stroke

Association in Sacramento, Calif., and Sandie Lema, ASA

communications director in Sacramento, who worked with

Derrek Dickey’s circle of friends, healthcare providers and

disabled sports advocates to begin organizing a simple golf

activity that could accommodate stroke survivors. Adaptive

equipment was included to encourage participation.

Among that team of original organizers was Deidre

Wentworth, MSN, RN, program manager for the Mercy

Stroke Center of Sacramento. “I had been a volunteer

with the American Heart Association for a

number of years,” Wentworth said. “When

Derrek came up with this idea, it struck

me as a great one. Our hospital is

committed to taking care of stroke

patients, and that’s how I got involved.”

Wentworth has been a vital

part of the Saving Strokes

event ever since.

January/February 2006 27


a case of

as therapy

January/February 2006

Chris and Jenny with Ashley and Spencer

by Evelyn Barella,

Communications Director

Midwest Affiliate of the

American Heart Association

s all survivors know, stroke

changes your life in major ways,

but if you want a real life-changing

event, have twins. Chris Bulthuis has had both

experiences, and though both were unexpected,

they have combined into a satisfying new role

— stay-at-home dad.

In February 2003, Chris returned home

from his job as a service representative for a

tool company and settled in for the evening.

He changed clothes and went about his usual

routine. Married just eight months, he and his wife Jenny had recently moved into a new home

in Hartland, Mich. He was sitting in the kitchen when he suddenly didn’t feel quite right.

As he got up and moved into the living room to call Jenny, he heard a voice but didn’t know

where it was coming from. The voice didn’t sound familiar. Chris looked over at the television

to see if it was on, but it wasn’t. Then he realized the voice was coming out of his own mouth,

but the words were garbled and weren’t making any sense.

“I heard Chris talking to me, but when I

called out he didn’t answer,” Jenny Bulthuis

said. “I heard noises, but couldn’t make out the

words. I thought he was talking to the cat.”

The words stopped, and Jenny decided to

check on Chris. She found him slumped over on

the couch.

“I spoke to him, but he couldn’t talk,” Jenny

said. “At first I didn’t know what was wrong, and I immediately called

9-1-1. I saw that Chris was drooling and I told the operator I thought he was having a stroke

though it didn’t make sense that a healthy 35-year-old would have a stroke.”

“I remember lying there, not being able to move the right side of my body, and thinking,

‘Yes! Yes! That’s what it is! It’s a stroke,’” Chris said.

Chris was lucky. Jenny, who is a pharmacist, decided to have him transported to the

University of Michigan Health Center though it was farther than the nearest hospital. Even with

Reading bedtime stories has

been an ideal rehabilitation

method in which Chris spends

quality time with his children.


immediate medical attention, it was one hour and 45 minutes before

Chris received TPA, but still within the three-hour window for the clotbusting

drug that can reduce disabilities from a stroke.

Chris left the hospital six days later and began receiving intensive

therapy at the University of Michigan Residential Aphasia Program. He

has recovered nearly 100 percent of his physical abilities and has made

significant progress in reading, writing and speaking.

Before Chris’s stroke, the young couple had discussed starting a

family, but they were undecided about daycare options.

“With one baby, we could both continue to work,” Jenny said. “But

twins were on the way and we would not have been able to afford

daycare for both babies.”

“In a way, the stroke made the childcare problem an easy decision.

With Chris fully recovered but still making strides in his speech, reading

and writing abilities, he was naturally in a better position to be the stayat-home

parent.”

Though Jenny now carries the burden of financially supporting the

family, she is grateful that the children are not in daycare and are being

raised by their father.

In fact, reading bedtime stories to son Spencer and daughter Ashley

has been an ideal rehabilitation method in which Chris spends quality

time with his children. “It’s like learning the language all over again,”

Chris said. “In my brain I can picture the word, but I can’t say it

through my mouth.”

Chris still has trouble with oral comprehension and recalling phone

numbers, addresses, birthdates and ages, and other numbers, but the

things he misses the most are being able to work and telling jokes.

He hopes to return to college, where he was working on a degree in

advertising and public relations before his stroke. But for the time

being, he enjoys having his hands full as a full-time dad.

Family time and speech therapy

The Bulthuis family

“Chris was naturally

in a better position

to be the stay-athome

parent.”

Know...

the warning signs

of stroke:

• Sudden numbness or weakness

of the face, arm or leg, especially

on one side of the body

• Sudden confusion, trouble

speaking or understanding

• Sudden trouble seeing in one

or both eyes

• Sudden trouble walking,

dizziness, loss of balance or

coordination

• Sudden, severe headache with

no known cause

January/February 2006 9


E V E R Y D A Y Connecting You to Helpful Ideas

ince my stroke in December 2000, I have

learned that your attitude makes a great

deal of difference.

One man told me, “I don’t want to get

well.” A few days later he was gone, his

death wish granted. How much better it

would have been if he had said with the psalmist: “This is

the day which the Lord hath made; we will rejoice and be

glad in it.” (Psalms 118:24 KJV). Perhaps you don’t feel very

cheerful, but notice that the psalmist says, “We will rejoice

and be glad.”

Being joyful or glad is not just a matter of feeling. It can be

an act of the will. If you will say those words out loud, it will

help to drive away any gloomy feelings.

Another thing I have learned is that no two strokes are

alike, so I can’t expect your stroke experience will be like

mine. But perhaps some of what I’ve learned can help you.

Your Home

If you are wheelchair bound (as I am), you may have to

make a few changes in your home. Doorways must be at

least 4 inches wider than the distance between your wheels.

The extra inches beyond the wheels are so you can turn. If

an inside doorway is too narrow you can make it wider by

removing the door.

Our bathroom door is just as wide as the other inside

doors, but since we need that door for privacy, we have to

be satisfied with a smaller opening. The partially open door

takes away 2 inches, so my wheelchair has only 29 inches to

pass. That’s a squeeze, but I can make it.

Soft carpets with a long nap are hard to roll on. I

persuaded our apartment’s owner to replace our carpet with

a firm carpet and omit the pad. The resulting surface is just

fine for me.

0

January/February 2006

Suggestions

for Survivors

by John Schlosser, Survivor

Stanwood, Washington

I use a “helping hand” — a metal rod with a grasping

device at the end. It’s like an extension of your arm. It is great

for getting a book off a high shelf or picking up something

from the floor.

I have a motorized wheelchair called a “Jazzy.”

Medicare paid for it; my only cost was a lot of paper work.

It has two drive wheels centrally placed that have separate

motors, so they can turn in opposite directions and make

the chair turn around in close quarters. I use my Jazzy

mostly for outdoor trips.

I have three grab bars in the bathroom and use them daily.

Getting Dressed

When I wake up in the morning I throw back the covers

and reach for my “sky hook.” A sky hook is a metal ring

suspended over the bed of an orthopedic or paralyzed

patient. I was given a hospital bed with a sky hook, and it is

a great help for turning over or getting out of bed. Another

important thing is to wear slippery-fabric pajamas. These

make it easy to change position in bed.

I start my dressing with my socks — not an easy task with

only one hand — but it can be done. It’s easier if the socks

are not too tight.

After socks come underpants. In my case, due to

incontinence, this means a pad of Depends with straps.

Occasionally I make the mistake of putting on my trousers

before I have put on my long johns! That’s frustrating but not

serious. But when I did it twice on the same winter morning I

began to think that my stroke did affect my mind!

Buttoning a shirt is the hardest part of dressing. Letting

my left thumbnail grow long is a great help for finding the

button hole and guiding the button through. To avoid getting

the buttons in the wrong holes I begin with the bottom

button, which I can see, and work from there to the top.

Most men put their trousers on before putting on their

belts. That’s difficult with only one hand. It was nine months

before I realized I could put the belt through the loops before

putting the pants on the legs.

Next comes pulling them up and tucking in the shirttails.

Since my right fingers are pretty weak, I thrust that hand

deep in the side pocket. Then I can carry the weight of the


pants with my arm rather than with those weak fingers, and I

use my good hand to tuck in the shirttails.

When it’s time to close the waist, I put my right thumb

through the last belt loop. I can push against this to draw the

waist together to close it.

I wear a brace on my lower right leg. It goes inside my

shoe. When I first came home, my wife struggled to get my

shoe and brace on. But I learned an easier way: With the

brace inside the shoe, I pick up the shoe by the toe and lay

it down on the back of the brace. Next I step into the trough

of the brace and slide my foot forward into the shoe, being

careful to hold the tongue up and out of the way. I have

Velcro straps instead of laces on my shoes.

Mealtime

The stroke has limited my mobility but not my appetite.

I still enjoy eating, but now I use my left hand most of the

time. Lately, however, I have been trying to handle a spoon

or fork with my right hand. I can grip more securely with

either hand if I put a piece of sponge rubber over the handle.

I choke easily on thin, cold liquids so I use a straw for

all beverages, including soups, gravies, yogurt and thin hot

cereals. With a straw it is easier for me to avoid swallowing

air and choking.

Recovery

I am now almost 88

years old. Although I

continue to make small

steps of recovery, I

don’t really expect to

recover fully. Is there

anything for an old

man to look forward

John Schlosser

to except a cemetery

plot? Yes indeed, there are many things to keep me busy.

I attend church, go to the exercise room and swim.

I e-mail friends around the world, take their prayer

requests and pray for their needs. And I enjoy

corresponding with my grandchildren, sending them

stories from my boyhood in China and my 25 years in the

backwoods of Mindanao, Philippines.

January/February 2006


E V E R Y D A Y Connecting You to Helpful Ideas

R e s o u r c e s

American Stroke Association’s New Online

Discussion Boards for Parents of Young

Children with Stroke

Visit www.discussions.americanheart.org and

register to participate in this ongoing discussion area

for parents of children age 0–18 who have experienced

stroke. Scroll down to the Stroke Survivors and Family

Caregivers section for this new topic area.

Children’s Hemiplegia and Stroke

Association (CHASA)

CHASA is an online support organization for families

of pediatric stroke survivors as well as children with

hemiplegia and cerebral palsy. Their Web site includes:

• extensive information, from rehab to vacations and

potty training.

• definitions and information on early intervention,

types of providers and infant development.

• an “Ask the Expert” section for pediatric neurology,

physical and occupational therapy, and orthotics.

CHASA also sponsors e-mail support groups and an

annual retreat.

www.chasa.org

Suite 305, PMB 149

4101 W. Green Oaks

Arlington, TX 76016

Parents Association of Children with

Hemiplegia and/or Stroke (PACHS)

PACHS is a Chicago-area support and information

group. They seek to give families of children with

hemiplegia, hemiparesis, diplegia and/or stroke a

chance to connect and interact in person. In addition

to family support and local resource information, the

research link on their Web site gives clear, user-friendly

information about ongoing research and new studies

looking for subjects.

http://pachs.org

January/February 2006

The Technical Assistance Alliance for

Parent Centers

The Technical Assistance Alliance for Parent Centers

supports parents of children with disabilities in

meeting the educational needs of their children. Parent

Training and Information Centers and Community

Parent Resource Centers in each state provide

training and information to parents of infants, toddlers,

children, and youth with disabilities.

888-248-0822

www.taalliance.org

Baby Builders

Baby Builders sells a helpful video of a developmental

exercise program created by a physical therapist for

children at risk.

877-627-8222

www.babybuilders.com

Parent to Parent-USA

Parent to Parent-USA (P2P-USA) is an alliance

of statewide Parent to Parent programs following

established best practice standards. Parent to Parent

programs provide emotional and informational support

to families of children who have special needs, most

notably by matching parents seeking support with an

experienced, trained “Supporting Parent.”

www.p2pusa.org

Lekotek

Lekotek makes the world of play accessible to children

with all types of disabilities through special play

and learning centers where they can have fun with

traditional toys, adapted toys, books and computers

borrowed from Lekotek toy-lending libraries. There are

33 Lekotek sites nationwide.

National Lekotek Center

3204 West Armitage Ave.

Chicago, IL 60647

773-276-5164

Toy Resource Helpline: 800-366-PLAY

www.lekotek.org


PLAVIX ®

clopidogrel bisulfate tablets

Rx only

Brief Summary of Prescribing Information Rev. November 2004

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 the following conditions:

• Hypersensitivity to the drug substance or any component of the product.

• 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 (


YOU DON’T

WANT ANOTHER

HEART ATTACK

OR ANOTHER

STROKE

TO SNEAK UP

ON YOU.

PLAVIX HELPS KEEP BLOOD PLATELETS

FROM STICKING TOGETHER AND FORMING

CLOTS, WHICH HELPS PROTECT YOU FROM

ANOTHER HEART ATTACK OR STROKE.

If you’ve had a heart attack or stroke, the last thing you

need is another one sneaking up on you. PLAVIX may

help. PLAVIX is a prescription medication for people who

have had a recent heart attack or recent stroke, or who

have poor circulation in the legs, causing pain

(peripheral artery disease).

PLAVIX OFFERS PROTECTION.

PLAVIX is proven to help keep blood platelets from

sticking together and forming clots, which helps keep

your blood flowing.This can help protect you from

another heart attack or stroke.

IMPORTANT INFORMATION: If you have a stomach

ulcer or other condition that causes bleeding, you

shouldn't use Plavix. When taking Plavix alone or with

some medicines including aspirin, the risk of bleeding

may increase.To minimize this risk, talk to your doctor

before taking aspirin or other medicines with Plavix.

Additional rare but serious side effects could occur.

© 2005 Bristol-Myers Squibb/Sanofi Pharmaceuticals Partnership.

National Center

7272 Greenville Avenue

Dallas, TX 75231-4596

WITHOUT PLAVIX WITH PLAVIX

TALK TO YOUR DOCTOR ABOUT PLAVIX.

For more information, visit www.plavix.com or call

1-877-700-0701

PROVEN TO HELP PROTECT FROM

ANOTHER HEART ATTACK OR STROKE

USA.CLO.05.08.156/September 2005 B1-K0206/09-05

NON-PROFIT ORG.

U.S. POSTAGE PAID

PERMIT NO. 4

LONG PRAIRIE, MN

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