Survivor Louise Ingram - American Stroke Association

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Survivor Louise Ingram - American Stroke Association

Survivor Louise Ingram


contents September/October

Feature Story

Dimensions of Dementia 18

For many people, dementia is a dirty word, but for some

stroke families it’s a fact of life. Two caregivers share

how they dealt with a parent’s stroke-related dementia.

Articles

Communication Advice from

Experts — Survivors with Aphasia 16

Aphasia patient Gary Milner interviewed the

members of the Aphasia Treatment Program at

California State University, East Bay.

The Art of Dementia 24

Elizabeth Cockey had a successful career

in sales, but when her mother developed stroke

dementia, her life took a turn.

The Healing Power of Connection 28

Support groups can take many forms. We examine three

different formulas for support group success.

Hunting with One Hand 31

Survivor Knute Wallin thought his

deer-hunting days were over until two friends

enrolled him in a program for disabled hunters.

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 12

Life at the Curb 33

Everyday Survival 34

Jon Caswell, Lead Editor

Mike Mills, Writer

Jim Batts, Writer

Pierce Goetz, Art Director

Michelle Neighbors,

Advertising Sales

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

2006

18

24 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.

© 2006 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

1-800-609-7515

PROVEN TO HELP PROTECT FROM

ANOTHER HEART ATTACK OR STROKE

USA.CLO.06.03.80/March 2006 B1-K0237/03-06

sanofi-aventis U.S. LLC


PLAVIX® Rx only

clopidogrel bisulfate tablets

INDICATIONS AND USAGE

PLAVIX (clopidogrel bisulfate) is indicated for the reduction of atherothrombotic 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

(25 times that in humans at the recommended daily dose of 75 mg.

Clopidogrel was not genotoxic in four in vitro tests (Ames test, DNA-repair test in rat hepatocytes,

gene mutation assay in Chinese hamster fibroblasts, and metaphase chromosome analysis

of human lymphocytes) and in one in vivo test (micronucleus test by oral route in mice).

Clopidogrel was found to have no effect on fertility of male and female rats at oral doses

up to 400 mg/kg per day (52 times the recommended human dose on a mg/m2 basis).

Pregnancy

Pregnancy Category B. Reproduction studies performed in rats and rabbits at doses up to

500 and 300 mg/kg/day (respectively, 65 and 78 times the recommended daily human dose

on a mg/m2 basis), revealed no evidence of impaired fertility or fetotoxicity due to clopidogrel.

There are, however, no adequate and well-controlled studies in pregnant women.

Because animal reproduction studies are not always predictive of a human response, PLAVIX

should be used during pregnancy only if clearly needed.

Nursing Mothers

Studies in rats have shown that clopidogrel and/or its metabolites are excreted in the milk.

It is not known whether this drug is excreted in human milk. Because many drugs are excreted

in human milk and because of the potential for serious adverse reactions in nursing infants,

a decision should be made whether to discontinue nursing or to discontinue the drug, taking

into account the importance of the drug to the nursing woman.

Pediatric Use

Safety and effectiveness in the pediatric population have not been established.

Geriatric Use

Of the total number of subjects in controlled clinical studies, approximately 50% of patients

treated with PLAVIX were 65 years of age and over. Approximately 16% of patients treated

with PLAVIX were 75 years of age and over.

The observed difference in risk of thrombotic events with clopidogrel plus aspirin versus

placebo plus aspirin by age category is provided in Figure 3 (see CLINICAL STUDIES). The

observed difference in risk of bleeding events with clopidogrel plus aspirin versus placebo

plus aspirin by age category is provided in Table 3 (see ADVERSE REACTIONS).

ADVERSE REACTIONS

PLAVIX has been evaluated for safety in more than 17,500 patients, including over 9,000

patients treated for 1 year or more. The overall tolerability of PLAVIX in CAPRIE was similar

to that of aspirin regardless of age, gender and race, with an approximately equal incidence

(13%) of patients withdrawing from treatment because of adverse reactions. The clinically

important adverse events observed in CAPRIE and CURE are discussed below.

Hemorrhagic: In CAPRIE patients receiving PLAVIX, gastrointestinal hemorrhage occurred

at a rate of 2.0%, and required hospitalization in 0.7%. In patients receiving aspirin, the corresponding

rates were 2.7% and 1.1%, respectively. The incidence of intracranial hemorrhage

was 0.4% for PLAVIX compared to 0.5% for aspirin.

In CURE, PLAVIX use with aspirin was associated with an increase in bleeding compared to

placebo with aspirin (see Table 3). There was an excess in major bleeding in patients receiving

PLAVIX plus aspirin compared with placebo plus aspirin, primarily gastrointestinal and

at puncture sites. The incidence of intracranial hemorrhage (0.1%), and fatal bleeding

(0.2%), were the same in both groups.

The overall incidence of bleeding is described in Table 3 for patients receiving both PLAVIX

and aspirin in CURE,

Table 3: CURE Incidence of bleeding complications (% patients)

Event PLAVIX Placebo P-value

(+ aspirin)* (+ aspirin)*

(n=6259) (n=6303)

Major bleeding † 3.7 ‡ 2.7 § 0.001

Life-threatening bleeding 2.2 1.8 0.13

Fatal 0.2 0.2

5 g/dL hemoglobin drop 0.9 0.9

Requiring surgical intervention 0.7 0.7

Hemorrhagic strokes 0.1 0.1

Requiring inotropes 0.5 0.5

Requiring transfusion (≥4 units) 1.2 1.0

Other major bleeding 1.6 1.0 0.005

Significantly disabling 0.4 0.3

Intraocular bleeding with

significant loss of vision 0.05 0.03

Requiring 2-3 units of blood 1.3 0.9

Minor bleeding 5.1 2.4


L E T T E R S

Calling All Readers...

We often hear from survivors that the most important

thing Stroke Connection does for them is remind them

that they are not alone.

Readers Room (see pages 12-14) is a prime spot

where you can feel comfortable sharing your funniest

and saddest, best and worst, most frustrating and most

enlightening life-after-stroke experiences. And you

can be sure that what you share will touch many other

readers who have shared the experience called stroke.

Please send your poems, letters and stories to the

following address:

Readers Room

Stroke Connection Magazine

7272 Greenville Avenue

Dallas TX 75231

214-706-5231 (fax)

strokeconnection@heart.org (e-mail)

I am writing in response to Scott

Bonagofsky’s letter (January/February 2006). First,

he asks whether the magazine deals with coping, loss

and emotional aspects. I say yes. When I first had my

three strokes, I felt like I was the youngest person

alive going through this, until your magazine came

my way. It helped me see the ifs, ands and whys of

what I was going through.

Here I was 33 years old being told I would never

walk or talk again — both of which I can do. Losing

your job, driver’s license and income, raising a

daughter? How does one get over that? Simple, put

one foot in front of the other.

Survivors need to realize life has changed and

you need to deal with that and go on. I still have

seizures, loss of vision in both eyes, right hand and

leg paralysis. Do I get down? Of course, but I’m still

here, living my life one day at a time.

My words of advice are “never give up.” I could

have done that, but I refused. I even started a stroke

support group because there weren’t any around here.

I now have 13 members.

Brian Kromer, Survivor

Dillsburg, Pennsylvania

Connecting You to Us

I am writing in response to Irwin

Bierhans (March/April 2006). As a caregiver for my

husband the past three years, I can understand the

frustration and anger at the medical system. Even if

you are lucky to have health insurance, you still have

to fight for every rehab benefit because the company

will have a preconceived idea that all stroke patients

are the same and should have the same treatment.

Stroke families know that is not the case because there

is no “average” stroke. I hope he realizes that any

progress at all is great.

My husband has surprised a lot of medical

personnel with how far he has come these past three

years. We feel it was due to the prayers from all

who were involved, our faith and his strong will to

survive. My husband says, “Strokes are not for sissies

because it involves hard work to keep learning and

re-learning, and to stay involved with your life.” What

we appreciate from the magazine are the stories from

the survivors and their hard work and determination to

recover, whether they are successful or not.

Virginia Stanhope, Caregiver

Joliet, Montana

I would like to comment on the letter

from Irwin Bierhans (March/April 2006). The life of

a caregiver is very difficult, and I thank God every

day for my wife Lee. I believe being a caregiver is

every bit as hard, if not more so, than being a stroke

survivor. I feel compassion for Mr. Bierhans.

I firmly believe that focused on God we each need

to push ourselves to do all that we can with what

we have and not let our attention be diverted to the

negative.

Mike Dennis, Survivor

Longwood, Florida

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.

September/October 2006


L E T T E R S

As a caregiver, I read with interest “A

Chinese Stroke Connection” and “Evaluating

Needles” (March/April 2006) about acupuncture.

My husband Larry had a stroke four years ago and is

flaccid on his left side. He has physical therapy, pool

therapy and massages on a weekly basis. Two years

ago he started acupuncture treatment with massage.

All of a sudden he developed big black bruises,

which the doctor couldn’t explain. We were afraid of

internal bleeding. The doctor wanted him to go back

to the hospital and have quite a few tests. Some were

done with no explanation of what was being done.

I figured it out on my own: Larry takes warfarin.

That was the cause of the bruises. Once we stopped

the acupuncture, everything went back to normal.

A word to the wise, many survivors take blood

thinners, so before going for acupuncture, check with

your doctor.

Pauline Germi, Caregiver

Miami, Florida

I’d like to add to the experiences

described in letters from Debby Goodspeed and Scott

Bonagofsky (January/February 2006).

I am not a quitter, but on occasions I have felt

like giving up. When I asked the neurologist who

treated me in the ER why I didn’t get TPA, he told

me I wasn’t a candidate. I wanted to know why,

and he became angry with me and said, “Forget

about it, those brain cells are dead!” Other questions

were answered with “I’m not the expert.” Then he

attempted a joke, “Little clot, big disability.”

A rehab doctor and another neurologist told me

that my ability to write and walk would return in a

couple of months. Now, two years later I still cannot

write or eat with my dominant hand and walking is

painful. I was told by another doctor that everyone is

different and I should know that the doctors were only

guessing. When I describe other deficits, I have been

told, “We don’t see that with a stroke like yours.”

Now I realize that a support person should have

accompanied me to all appointments because some

doctors do not like to give out information or answers.

Lorraine Michalski, Survivor

Marshfield, Wisconsin

September/October 2006

Connecting You to Us

I had a stroke in September 2002. I went

to rehab for a week, where I began having pain and

a burning sensation on my right side. The doctors

attributed it to the stroke and told me within a year

I would not even know I had had a stroke. Little did

they know.

The burning pain and numbness in my right hand

got so bad I couldn’t even shake someone’s hand. I

even had trouble touching things. Months went by,

and it did not get better. After a year, someone where

my wife works gave me a copy of Stroke Connection

and I read an article about “thalamic pain syndrome.”

It sounded like what I have. I searched the Internet

and found much more information.

I went back to the neurologist, and she told me my

stroke was in the thalamus area and that most people

who develop this pain have it for a long, long time

and it may never go away. She put me on Neurontin.

Now I take 1600 mg a day, however, I believe it has

caused my balance problems to get worse.

My foot has gotten better, but my hand, and

especially my fingers, are sometimes unbearable if I

miss my pill. My hand feels like a burning toothache

that won’t go away. But from my week in rehab, I

know there are others worse off than me.

It has taken a long time to write this letter, but

thank you for your magazine as it could have taken a

lot longer for me to find out what my problem was. If

anyone else has found a new medication for this pain,

please let me know.

Douglas Pollock, Survivor

Pottstown, Pennsylvania

Your magazine came when I was feeling

low and hopeless. My 68-year-old husband is also the

survivor of a very bad stroke, like Joseph Markowski

in the November/December 2005 issue. Seven months

of a feeding tube, very slow improvements. I am so

grateful for articles like this. I read them over and

over. Thank you!

Helga Scriven, Caregiver

Johnstown, Ohio


Do sudden, unpredictable emotional

outbursts disrupt your life?

You are not alone.

You may be one of more than a million Americans suffering from

involuntary emotional expression disorder (IEED).

Involuntary emotional expression disorder can

happen when disease or injury damages the area

of the brain that controls how you express your

emotions. The result: sudden, unpredictable crying,

laughing, or other emotional episodes that can be

disruptive and embarrassing.

But you are not alone. More than a million people

diagnosed with neurologic disease or injury also

have IEED—impacting their lives, and the lives of

those close to them.

If you or someone you care for experiences these

episodes and has been diagnosed with a condition

such as multiple sclerosis (MS), Lou Gehrig’s

disease (ALS), Parkinson’s disease, Alzheimer’s

disease, stroke, or traumatic brain injury, it may be

due to “short circuits” in brain signaling. It may not

be depression. And you can begin to take control.

To learn more about IEED, visit us at www.IEED.org

or call 1-866-932-3411.

Ask your doctor about

To learn more, visit us at www.IEED.org or call 1-866-932-3411

©2006 Avanir Pharmaceuticals. All rights reserved. NX0036ADV0607


S T R O K E Connecting You to the World

$15 Billion Economic Benefit of NINDS Clinical Trials

comprehensive review of all phase

III clinical trials supported by the

National Institutes of Health’s

National Institute of Neurological

Disorders and Stroke (NINDS)

estimated that the economic benefit

in the United States from just eight

of these trials exceeded $15 billion

over the course of 10 years. The study

also found that new discoveries from

the trials were responsible for an estimated additional

470,000 healthy years of life.

The study is one of the first to systematically

analyze a publicly funded research program’s impact

on medical care, public health and healthcare costs.

The analysis showed that the 10-year return on the

investment in clinical trials research funding was 4,600

percent. The researchers also found that the projected

benefits of the clinical trial program during the period

covered by this study were more than $50 billion —

far greater than NINDS’ total budget of $29.5 billion

during that period. The investment in most of the trials

was returned through health benefits within 1.2 years

after the trial funding ended.

“The results of this analysis demonstrate the return

of the public investment in NIH research for the

American people not only in economic terms, but in

additional healthy years of life,” said Elias A. Zerhouni,

M.D., director of the National Institutes of Health

(NIH). “We are transforming the practice of medicine

by moving into an era when treatment will increasingly

become more predictive, personalized and preemptive.”

September/October 2006

“This study strongly suggests that, for this institute

at least, the economic benefit from clinical trials more

than offsets the total expenditures on clinical and basic

research,” said Story C. Landis, Ph.D., director of the

NINDS.

The investigators evaluated the costs and public

health benefits of all 28 phase III clinical trials

supported by the NINDS between 1977 and 2000.

The total cost of funding these trials was $335 million.

The investigators reviewed publications on treatment

utilization, societal cost and health impact. Information

on the utilization of the tested therapies and their

impact on societal costs and savings or quality of life

was available for just eight of these trials. The costs of

the other 20 trials were included in the analysis, but

their potential benefits were not.

“We tried as best we could to be very systematic

and to estimate conservatively whenever an estimation

was required. In spite of all that, we found that there

was a tremendous positive impact from the program

of clinical trials at NINDS,” said Claiborne Johnston,

M.D., who led the investigation.

Among the eight trials with adequate data for

analysis are some of NINDS’ best-known successes.

One was a trial of tissue plasminogen activator (TPA)

for ischemic stroke that showed that the clot-buster

could improve a patient’s chance for a full recovery if

used within the first three hours after a stroke begins.

Another showed that using indomethacin in premature

babies can prevent brain hemorrhage. Each of these

studies had an estimated net benefit of more than $6

billion over 10 years.

The analysis did not include the benefits of

many other trials for which impact information was

incomplete. Many of these trials have greatly changed

clinical practice and have probably had a major public

health impact. Therefore, the total benefits of the

research program are likely underestimated.

The research was funded by the NINDS, but to

reduce bias, it was performed independently and the

sponsor had no control over the content of the analysis.

Also, an independent panel of health policy experts

audited the analysis and reviewed the manuscript.

The NINDS is a component of the National

Institutes of Health and is the nation’s primary

supporter of biomedical research on the brain and

nervous system. For more information about the NIH

and its programs, visit www.nih.gov.


I NDEPENDENCE

With Mobility Motoring,

the results can be exhilarating.

For many Americans, gaining independence provides limitless

opportunities and endless possibilities. Individuals with accessible

transportation needs serve as an example that in life, ability dictates

your level of independence and attitude drives you beyond that.

Ford Mobility Motoring offers valuable financial and practical

assistance, including reimbursement for the exact amount of vehicle

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on alert hearing devices, lumbar support and running boards.

*Total reimbursement is not to exceed $1,000. Options available for factory installation are not considered eligible under the terms of the program.

9127J/4-06


S T R O K E Connecting You to the World

Treating HBP Lowers Dementia Risk in Elderly

Maintaining high blood pressure treatment

may reduce the risk of dementia in old age,

researchers reported in Stroke: Journal of

the American Heart Association.

Lead author of the study Rita Peila,

Ph.D., an epidemiologist at the National Institute on Aging

(NIA), said, “For every year of hypertension treatment, there

is increased protection against dementia.”

Some physicians hesitate to treat hypertension in the

elderly because of concerns that lowering blood pressure

might impair cognitive functioning. However, clinical trials

have shown no harmful effects on cognitive function in

elderly patients undergoing hypertension therapy.

“Hypertension treatment in the very old — those aged 80

and older — protects against stroke, heart disease and heart

failure, and now we see that there is no harm — and perhaps

a benefit — to cognitive function,” said Peila, who is also a

scientist at the Pacific Health Research Institute in Honolulu.

Researchers analyzed data from 848 men (ages 50–65)

who had midlife high blood pressure and were free of

dementia at age 77 (on average). The men had follow-up

exams at three and six years.

Researchers found that each year of treatment

reduced the risk of developing dementia by about 3

percent. Compared with men who were never treated for

hypertension, the risk of developing dementia was:

• 6 percent lower in those treated less than five years

Warfarin, a drug used to help

prevent certain strokes, is

underused in the elderly,

blacks and Hispanics, according to two

studies published in Stroke: Journal of

the American Heart Association.

Warfarin is an anticoagulant drug

that helps prevent blood clots from

forming and is prescribed for patients

with atrial fibrillation (AF). AF increases

the risk of stroke. AF is uncommon

before age 65 but occurs in 10 percent of those age 80 or older

and accounts for about 25 percent of strokes in that age group.

For two and a half years, Boston researchers followed the

treatment of 405 AF patients age 65 and older throughout their

hospital stays to find out why warfarin is often not prescribed

to elderly patients despite clinical trial data. Fifty-one percent of

patients followed were age 80 or older. Overall, only 51 percent of

the original patients were on warfarin when they left the hospital.

September/October 2006

• 48 percent lower in those treated from five to 12 years

• 60 percent lower in those treated more than 12 years

— similar to the risk in a control group of 446 men

with normal blood pressure

“We found protection against both Alzheimer’s disease

and vascular dementia,” Peila said.

While only 7.8 percent of the 848 men were diagnosed

with dementia, even those who did not have dementia

showed cognitive declines. But men who had untreated

hypertension had significantly more cognitive decline than

men with normal blood pressure and hypertensive men

treated for at least five years.

“Even if you’re very old, have your blood pressure

checked and talk to your doctor about treatment if it is

high,” Peila said.

Warfarin Underused in Elderly AF Patients

Researchers found that the most commonly cited reasons

for not using the drug were:

• current or chronic bleeding episodes (33 percent),

mostly gastrointestinal

• spontaneous falls that broke a bone or caused a

head injury (32 percent)

• patient refusal to take the drug or a history of not

taking prescribed drugs (14 percent)

In another study, researchers studied “the real-world

effectiveness of warfarin” among Medicare beneficiaries. They

examined 17,272 Medicare beneficiaries with AF who were

hospitalized in 1998 or 1999. All were age 65 or older; average

age 79.3 years.

These researchers also found that warfarin was underused.

Only 65 percent of ideal warfarin candidates — patients with no

contraindications to the drug who had additional risk factors for

stroke besides AF — got warfarin.


S T R O K E Connecting You to the World

Poverty’s Impact on Stroke

10

troke patients in poor neighborhoods

get adequate emergency medical

transport to hospital emergency rooms,

but some elderly with low income and

education levels have twice the risk of

stroke compared to those at the highest

end. Those are the conclusions of two

studies on socioeconomics and stroke

reported in Stroke: Journal of the

American Heart Association.

In the first study, researchers in the greater

Cincinnati area investigated whether socioeconomic

status (SES) influenced EMS arrival and transport

times. They reviewed data on 3,814 patients

hospitalized for stroke or TIA in one year.

“Poverty has been associated with a shortened

lifespan, due in part to problems involving access to

medical care,” said Dawn Kleindorfer, M.D., lead

researcher and assistant professor of neurology at

the University of Cincinnati. “For example, EMS

arrival might be delayed in a high-crime area by the

need to wait for a police escort.”

Kleindorfer and colleagues analyzed EMS time

performance in a five-county area of southern Ohio

and northern Kentucky with a total population of

about 1.3 million. They defined SES by household

income from census data.

September/October 2006

“We didn’t find significant differences in prehospital

delays based on socioeconomic status or

race,” Kleindorfer said. “In our city the average time

from the 9-1-1 call to arrival at the scene was 6.5

minutes, and the total transport time was 28 minutes.”

However, only 39 percent of patients —

regardless of where they lived — called 9-1-1 for

emergency transport to a hospital.

“In the whole scheme of things, the time spent

with EMS was relatively small, compared to

delays related to lack of public awareness of stroke

symptoms, which often leads to hours and hours of

delays,” she said.

In another study, researchers at the Harvard

School of Public Health assessed the effect of SES

on stroke incidence in the elderly. They found that

socioeconomic status, as measured by education

and income, strongly influences stroke risk.

“Our study confirms that socioeconomic

disparities in stroke remain, at least up to early

old age. It also highlights the role of diabetes and

psychosocial risk factors (such as depression and

social support) as potential pathways through which

lower socioeconomic status increases the risk of

stroke at early old age,” said lead author Mauricio

Avendano, M.Sc., who was a visiting fellow at the

Harvard School of Public Health when the study

was conducted.

Avendano investigated the impact of

socioeconomic status on stroke rates among 2,812

individuals age 65 years and older. During the 12year

study, 270 people developed stroke. Among

participants aged 65 to 74, lower education and

income were strongly associated with an increased

stroke risk. Those elderly with the lowest educational

level or income had twice the risk of stroke compared

to those with the highest educational level or income.

Conventional stroke risk factors, such as high

blood pressure, smoking and diabetes, were more

common in lower-education or lower-income groups

at age 65 to 74, as were non-conventional risk factors,

such as depression and low social support. Those

with lower SES were also more likely to be African

Americans. After statistical adjustment for race,

diabetes, depression and social support, the influence

of SES on stroke was substantially reduced.


S T R O K E Connecting You to the World

Poverty’s Impact on Stroke

10

troke patients in poor neighborhoods

get adequate emergency medical

transport to hospital emergency rooms,

but some elderly with low income and

education levels have twice the risk of

stroke compared to those at the highest

end. Those are the conclusions of two

studies on socioeconomics and stroke

reported in Stroke: Journal of the

American Heart Association.

In the first study, researchers in the greater

Cincinnati area investigated whether socioeconomic

status (SES) influenced EMS arrival and transport

times. They reviewed data on 3,814 patients

hospitalized for stroke or TIA in one year.

“Poverty has been associated with a shortened

lifespan, due in part to problems involving access to

medical care,” said Dawn Kleindorfer, M.D., lead

researcher and assistant professor of neurology at

the University of Cincinnati. “For example, EMS

arrival might be delayed in a high-crime area by the

need to wait for a police escort.”

Kleindorfer and colleagues analyzed EMS time

performance in a five-county area of southern Ohio

and northern Kentucky with a total population of

about 1.3 million. They defined SES by household

income from census data.

September/October 2006

“We didn’t find significant differences in prehospital

delays based on socioeconomic status or

race,” Kleindorfer said. “In our city the average time

from the 9-1-1 call to arrival at the scene was 6.5

minutes, and the total transport time was 28 minutes.”

However, only 39 percent of patients —

regardless of where they lived — called 9-1-1 for

emergency transport to a hospital.

“In the whole scheme of things, the time spent

with EMS was relatively small, compared to

delays related to lack of public awareness of stroke

symptoms, which often leads to hours and hours of

delays,” she said.

In another study, researchers at the Harvard

School of Public Health assessed the effect of SES

on stroke incidence in the elderly. They found that

socioeconomic status, as measured by education

and income, strongly influences stroke risk.

“Our study confirms that socioeconomic

disparities in stroke remain, at least up to early

old age. It also highlights the role of diabetes and

psychosocial risk factors (such as depression and

social support) as potential pathways through which

lower socioeconomic status increases the risk of

stroke at early old age,” said lead author Mauricio

Avendano, M.Sc., who was a visiting fellow at the

Harvard School of Public Health when the study

was conducted.

Avendano investigated the impact of

socioeconomic status on stroke rates among 2,812

individuals age 65 years and older. During the 12year

study, 270 people developed stroke. Among

participants aged 65 to 74, lower education and

income were strongly associated with an increased

stroke risk. Those elderly with the lowest educational

level or income had twice the risk of stroke compared

to those with the highest educational level or income.

Conventional stroke risk factors, such as high

blood pressure, smoking and diabetes, were more

common in lower-education or lower-income groups

at age 65 to 74, as were non-conventional risk factors,

such as depression and low social support. Those

with lower SES were also more likely to be African

Americans. After statistical adjustment for race,

diabetes, depression and social support, the influence

of SES on stroke was substantially reduced.


R E A D E R S Connecting You to Others

Slow Down

and LIVE!

While out skiing near my home in

beautiful northern Michigan, I began to

notice that my left hand was frequently

becoming cold and numb. I went

into the lodge to get warm; however, the numbness

remained. Then one Sunday the church service seemed

to be in a foreign language. Two days later I was

admitted to the hospital with a stroke. I was 67. My

condition worsened on the second day, and the MRI

revealed a narrowing of the right middle cerebral

artery. After discharge I chose outpatient therapy rather

than inpatient. I couldn’t drive for eight long months.

From being the one who took others to the hospital

and appointments, I had to depend on others to take

me everywhere.

One of my therapy goals was to play in my church

handbell choir again. I even took the bells to therapy

and learned to play them, but my brain would not read

the music. I was either four measures ahead or three

measures behind! Since it was extremely frustrating to

me (and I’m sure to the director), I decided to sit in the

congregation and enjoy the music.

Another goal was to return to my part-time job as a

nurse, but with the numbness in my left hand, I didn’t

feel I could even put a tourniquet on an arm, much less Carol Smith

start an IV. I didn’t feel competent to give medications.

But that’s all right, now I can do things with friends that I couldn’t before because I always had to work.

It’s been more than two years, and I am now able to ski again — only easy runs and much slower,

but I never was aiming for the Olympics. I have trouble keeping the pole in my left hand, but the straps

keep me from losing it. My friends buckle my boots for me.

I continue to have trouble with calendars and appointments. Sometimes I go to meetings on the

wrong dates, or don’t go at all. My fine-motor skills need some tuning, and I need to be more organized,

but at least I’m not trying to call friends on the remote control! I did learn it doesn’t have a dial tone.

Stroke survivors’ lives are definitely changed, but we can learn to do things at our own pace — slow

down and live! Prayer has helped me through depression and enabled me to keep trying and set goals

to redo old skills and try new ones. I have visited survivors in the hospital and the rehab units, trying to

help them get through the hardest time and share my thoughts and experiences, letting them know that

things do not improve overnight. One of my greatest difficulties was and still is my lack of patience

with myself and others. I continue to work on this. We all need to have faith and say, “I can do that” or

“I’ll try,” and never give up.

12

Carol Smith, Survivor • Harbor Springs, Michigan

September/October 2006


Caregiving – Not for Sissies

I have

just finished reading the March/April edition

and feel compelled to respond to the letter by

caregiver Irwin Bierhans. He expressed his frustration

and anger over the Pollyanna outlook portrayed in

your articles. As a caregiver, I, too, share his feelings. I

can’t say they anger me, but they have left me saddened,

frustrated and wondering just why we have not been able to

accomplish all that those you write about have.

My husband’s stroke was in 1999. He was very active

as a high school teacher and drama coach who was

suddenly incapacitated by the stroke. There were numerous

complications, with hospitalization and rehab lasting more

than five months before he could return home. Since then

he has been unable to do most of what he could do before.

He is able to walk with assistance, but he is still unable

to shower, do toileting, dress himself or be independent

enough to enter or exit our home without assistance. His

total link to the outside world revolves around me and the

use of our lift van.

I am not complaining, but I am saying that we are not

a story about how he is able to run a marathon, climb a

mountain or do some phenomenal feat. We struggle day by

day but continue to work with the abilities God has left him

and the calling He has given me to help Tom continue to be

as productive as possible.

With my assistance he is now the youth director for a

church near our house. Tom would not have done this before

the stroke, but God led him/us in this direction. Tom is able

to lead by example. He makes the phone contacts with our

young people; he can listen and cheer them on. He has years

of experience working with teenagers. I do the leg work, like

take the youth canoeing or bowling. Tom comes along in his

motorized wheelchair and cheers everyone on.

In addition to being a youth leader, Tom goes out to the

Paul Rini and niece Jennifer Moir

When my daughter JoDee was married

in 1992, she invited her cousin Jennifer

Moir to be in the wedding. Jennifer came

all by herself from Arizona to Connecticut, and at

the reception I danced with her all afternoon. We

had a wonderful time. When the reception was over,

I told her the next time we danced together would

be at her wedding.

Then in 2000 I had a mild stroke while on a

morning walk, then in the hospital I had a massive

stroke that left my left side paralyzed. After weeks

of therapy, I came home barely able to walk.

high school where he taught

for 32 years and assists a

pantomime troupe. He has

assisted in directing plays at

another school.

None of this is really

easy for us. It means that

I must get him ready, get

him into our van, drive to

the event and then return

in 90 minutes or so, and do

the whole thing in reverse.

It’s very wearing on both

of us, but oh, the value it

gives Tom.

Caregiving is certainly

not for sissies! I didn’t

ask for this, but you know

what, neither did Tom. We

continue day by day and

have been working as a team for more than seven years. In

fact, Tom just returned home again after almost a month in

the hospital with double pneumonia. Now we are back to

having lots of rehab at home, trying to regain what we once

had. I am sure God will carry us through.

I can understand the feelings that Mr. Bierhans

expressed. I would also like to read some articles about

others who are maybe not “success stories,” perhaps more

like our situation. That way we know we are not alone.

I have felt the need to express my sadness and

loneliness in feeling that we were somehow “failures”

because we didn’t fight hard enough like everyone

expresses in your articles.

Mary Prill, Caregiver • Lafayette, Indiana

P R O M I S E K E P T

In April 2002, I was still in bed when I received

an invitation to Jennifer’s wedding in June. I had

to get ready. Every day I practiced standing and

dancing to music. My wife helped me, and when

the time came, I was ready, and Jennifer and

I danced together as I had promised. She had

her photographer take a picture for her wedding

book. That picture now hangs on my wall with

the invitation — a promise kept!

Paul Rini, Survivor

Tampa, Florida

Mary and Tom Prill

September/October 2006 1


R E A D E R S Connecting You to Others

As I lay in the emergency room with my left side

paralyzed, the first thing I thought was how

would I ever play “itsy-bitsy spider” again with

my 3-year-old son Kyle? We played it together

every day, and I enjoyed adding in my own words at the end

for him to learn.

1

Itsy-Bitsy Spider

“The itsy-bitsy spider climbed up the waterspout.

Down came the rain and washed the spider out!!

Out came the sun, which dried out the rain,

And the itsy-bitsy spider climbed up the spout again!”

And I always added, “Hurray for that spider, he never

gives up!” A big smile always came across Kyle’s sweet

face as we did the movements together. It was such a

sweet memory.

Just as I was thinking about this memory, a wonderful

man, who was waiting by his wife’s bedside in the next

curtained area, came over to tell me he had just prayed an

entire rosary for me. He had overheard my conversation

with the priest, who had administered the sacrament of the

sick to me. I had told him how glad I was that there were

sacraments other than the last rites. The priest said I had

a good sense of humor, and I said I wouldn’t want to live

— or die — without it. We both had had a good laugh.

My immediate concern as a mom was for the welfare

of my two sons. Little did I know what a help my older

son Keith, then 18 and a senior in high school, would be

with Kyle, who at 3 had been diagnosed with pervasive

developmental delays.

After 14-hour workdays, my husband Ed did not quite

know what to make of it all. I kept telling him that I knew I

Beth Peterson

Before my stroke I was a little afraid of death.

How could I not be? If I got too worked up

on the subject, I would just have to change

my thinking and push the thought of death out of my

mind. I always thought it would be something to deal

with in the future.

Sometime after my stroke, I realized that I didn’t

have that same fear anymore. Maybe it was because

I had gone to the edge and come back. Maybe God

intended to do something with my life that He hadn’t

done yet. Even though I had been a teacher, librarian

and lawyer, maybe there was something else I

needed to do. Even though I was a wife and mother,

September/October 2006

had a lot to live for at

age 45. Like that spider,

I was not ready to give

up! In fact, I’ve found

that every time I go out

of the house, I feel like

I’m “climbing up the

waterspout” because

it’s not easy to walk.

My left arm

and hand are still

improving, and Kyle,

now 8, still enjoys

nursery rhymes. What

seemed like a tragedy

at first has turned into

an interesting journey. Kyle’s development slowed just

enough for me to “catch up,” and we still love saying the

itsy-bitsy spider rhyme together. He can now sing the whole

thing by himself.

As occupational therapy for me, we both attempt the

finger/arm movements together and share a big smile when

it’s over. Does life get any better than that?

Due to our mutual illnesses, I have a keener sense of

Kyle’s limitation, and he of mine. Our family has overcome

many challenges, but turning 50 years young in August

2005 was a joy because all stroke survivors aren’t granted

such a stunning recovery.

This past August Ed and I had our 10th Sue Bernard and son Kyle

wedding

anniversary. We move forward knowing that our vows have

been thoroughly tested. It is truly a gift to know what you

are made of — this spider didn’t give up!

Sue Bernard, Survivor • Cedar Grove, New Jersey

T H E J O Y O F B E I N G A L I V E

maybe there was another role for me to play.

Although there are so many things I can’t do

anymore — like use my right side or sing alto and

sometimes I lose my thoughts — I am still alive. I can

bear witness to my God and to my life, and I can

take time to listen to other people and hear what

they have to say.

I always thought that I broke my arm three times

in order to learn patience. Maybe I had a stroke in

order to slow down and smell the roses. Maybe I

had a stroke to learn to say, “God is good and life is

precious and beautiful.”

Beth Peterson, Survivor • Edina, Minnesota


A451_Nova Vision.indd 1 8/3/06 3:01:50 PM

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September/October 2006 15

A484_Planned Giving.indd 1 7/31/06 9:31:06 AM

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1

Communication Advice from Experts:

Individuals with Aphasia

by Gary Milner

TIPS FOR INDEPENDENT COMMUNICATION

1. Interact with family. A family’s interaction

with a person with aphasia is critical. Anytime a

person with aphasia is frustrated with their inability to

communicate, the stage is set for the frustration to escalate

unless there is knowledgeable intervention. The interaction

with a family member or close friend or relative is

important for them to understand the situation.

2. Inform conversational partners.

A person with aphasia should reveal their condition to

anyone they intend to have an in-depth discussion with. It

should be a rehearsed message that concisely explains the

aphasia. It should not be too technical or “high-brow.” The

terms should be common words or words with definitions.

. Provide feedback. Many clients in our

Aphasia Treatment Program have stated that it is helpful

to give feedback to communication partners. For example,

when Dorene was ordering a sandwich, the person

behind the counter was talking too fast. Dorene simply

asked her to please slow down. From that point on their

communication was a success story instead of an example

of frustration.

. Use visuals. For the ladies, when ordering

cosmetics or lipstick, bring in the empty tube of the color

or style last used. When grocery shopping, bring in the

empty can or product wrapper and show the employee the

wrapper, and a successful experience will follow. When

September/October 2006

ordering food in a restaurant, try pointing to a

menu item if you cannot say it. Don’t be afraid

to ask for help!

5. Be polite. Remember, you are the one

with the physical challenge, not them! Always

be polite! It is not their fault that you had a

stroke! Your spouse or significant other may

remind you of the situation — for example,

when it is appropriate to say “Thank you”

or “Please.”

. Pay attention. This will help you

make sure that what you say is what you mean.

It is a common symptom of aphasia to respond

with a “yes” when what you really are trying

to say is “no.” To avoid embarrassment, be sure

of what you say or you can end up with some

strange things!

7. Use communication aids. There are some

very good communication aids: a piece of paper with the

alphabet on it; pictures of some common activities like

mowing the lawn or ordering a cup of coffee. However, the

most effective of these is a business card handout

(see below) developed by Dr. Wilson Talley, who was once

a client at the Aphasia Treatment Program. Depending

on the amount of speech loss, the card can help a person

communicate when speech fails. It gives the cardholder’s

name, emergency contacts, physician’s name and telephone

number, and this message:

“Aphasia is

an impairment

of the ability to

sometimes use or

comprehend words,

usually acquired as

a result of a stroke.

Depending on where

and to what extent

the brain is injured, each person with aphasia has a unique

set of language disabilities. I am not drunk, retarded or

mentally unstable! It is NOT a loss of intelligence!”

This card is very helpful if you get pulled over while

driving. If you show them this card, the police will not

think you are retarded or drunk.


Stroke survivors with aphasia often

struggle to be understood. Some

simple, clever strategies can help them

communicate effectively.

MANAGING INTERACTIONS WITH

STRANGERS

A good start for communicating with strangers is to

make them aware of your disability. After this, they may

overreact and become too slow. This is easier to handle

than being too fast. Try to maintain your dignity.

Other ideas include:

• Use an answering machine to answer the phone,

then don’t reply to the message until you’ve had

time to decide what you will say.

• People may think you are “mentally challenged.”

If they do, show them your aphasia business card

so they will learn about aphasia.

• When handling rude people while shopping,

disengage — it’s their problem.

Alert a store manager about your problem and

speak up for aphasia.

LIFE WITH APHASIA

Rudy, a stroke survivor since May 2003, notices that

he is reading slower. His family tells him that he is more

impatient. Friends from prior to the stroke left because of

his changed personal habits not matching theirs.

Kerry, a stroke survivor for 10 years, is still severely

affected as a result of the stroke. She, too, has lost friends

for the same reasons as Rudy. Her speech is still difficult,

and she has a difficult time walking and needs help

showering. She cannot read or write without assistance.

There has been improvement, but only slight. When Kerry

goes to Taco Bell, she uses a combination of aids and

either points or says, “Two taco specials.”

Members of the ATP include Latif, Bob, Larry and Dorene.

Aphasia Treatment Program

California State University, East Bay, Hayward, California

Dorene had a subarachnoid hemorrhage that resulted in

a total loss of speech five years ago. She also needed

help showering. Her short-term memory loss is gradually

improving. She is unable to drive. Her family notices a

change in her personality. She is improving, gradually.

John owns a bed-and-breakfast in Point Reyes, Calif.,

and is able to take reservations on the phone, including

how many rooms and dates. His speech is not perfect, but

it is effective. When in restaurants he points to the item on

the menu. He can also say that he wants eggs over easy,

hash browns and wheat toast. John asked for two tickets for

a movie without aphasia interfering. It is hard to construct

a full sentence, but communication is successful when

three words or less are required.

It is important to remember that the person you are

talking to is not a mind reader! Very often we fall into

that trap.

For more information on aphasia, or to find a certified

speech-language pathologist in your area, call ASHA’s

HELPLINE at 1-800-638-8255, e-mail ASHA at

stroke@asha.org or visit ASHA on the Web at

www.asha.org

Editor’s Note: Gary Milner participates in the Aphasia Treatment Program

(ATP) at California State University, East Bay. He wrote this article for

an assignment in that program. The other ATP participants helped in its

development. Gary’s aphasia is the result of a brain tumor.

September/October 2006 17


1

F E A T U R E

Dimensions of

September/October 2006

Dementia

by Jon Caswell

Dementia is not a nice word.

“In the beginning, when the doctors told me that my mother would have dementia, I got

angry,” Sybil Ingram-Campbell said. “That bothered me for years. I hated associating that

clinical title with her. She’s a nice person, she’s not ‘demented.’ I’ve learned to live with it

over these 11 years since her stroke, but we need other words.”

Sybil, 47, and her mother, Louise Ingram, 75, both live in Atlanta, Ga.

Dr. Marsel Mesulam is a neurologist who directs the Cognitive Neurology and

Alzheimer’s Center at Northwestern University in Evanston, Ill. He defines dementia as

“progressive brain disease that interferes with a person’s ability to carry out daily living

activities because of cognitive and behavioral abnormalities.”

Dementia may be one condition, but it has multiple causes: Alzheimer’s, primary

progressive aphasia, development of Lewys bodies, vascular disease. Dementia is thought

to affect as many as 50 percent of people over 85. Alzheimer’s is the primary cause, and

this kind of dementia is always progressive, though some medications may slow the

cognitive decline.

Vascular dementia can be caused by a single stroke, though it is more commonly the

result of multiple strokes (multiple infarct dementia) or TIAs. Stroke dementia is not

always progressive, particularly if the underlying cause of the strokes or TIAs can be

identified and treated.

Grace Mitchell had vascular dementia as a result of three strokes. Her son Kip took

care of her at his home in Myrtle Beach, S.C., for 13 years until her death in 2004.

“My mother had three strokes, maybe four,” said Kip, 46, who is the operations

manager for a medical alarm company. He is also a trained EMT. “She had two

hemorrhagic strokes and one ischemic stroke. The first one was in 1991 when she was

62. Her short-term memory got worse with each one. Aricept stabilized her, but she didn’t

improve. After the third one she was alone in the bathroom for six hours. After that she

was diagnosed with dementia.

“She could hold her own on the memory tests, but she still had episodes of odd

behavior. For instance, right after Christmas one year she threw away all the clothes

we’d given her.”

Louise Ingram had a hemorrhagic stroke when she was 64; the doctors gave her a

3 percent chance of living, and that would only be on a ventilator, in a vegetative state.

“They said she wouldn’t live 96 hours, but now she can carry on a conversation,” Sybil

said. “Of course, she can’t remember it. And she can walk now and no one expected that.”

In addition to caring for her mother, Dr. Sybil Ingram-Campbell is a health scientist

with the Centers for Disease Control and Prevention, and she understands the medical


“This experience

has deepened me

spiritually. I’m a

trained scientist, but

if I had any doubts

about the Creative

Spirit, this experience

has put them to rest.”

Sybil Ingram-Campbell and her mother Louise Ingram; photo by Greg Mooney, Atlanta Photographers, Inc.

September/October 2006 19


20

F E A T U R E

“Looking back, if I had the choice to do it over again,

I would do it again without any hesitation.”

issues involved. “If you looked at her chart, you’d say

‘why isn’t this person dead?’ But when the doctors meet

her, they are always surprised, and they want her to do

‘tricks’ on command.”

Dementia encompasses an array of symptoms. “The

spectrum is very large,” Dr. Mesulam said. “In some

people, it’s a loss of memory; in others an impairment of

word finding. Some have visual disorientation, while others

have impaired judgment and insight. They can’t tell right

from wrong.”

“My mother’s first symptom was short-term memory

loss,” Kip said. “She moved in with me six months poststroke,

and she didn’t have any functional impairments.

She could walk and fix her own meals. She had left-side

weakness after the second stroke two years later. The

memory problems got worse, and she developed this

obsessive/compulsive thing where she’d start trying to call

my sister, and if she wasn’t there, she’d call every two to

three minutes for hours. There would be hundreds of calls.”

For Sybil Ingram-Campbell the change in her mother’s

condition was overnight. When Louise came out of a twoweek

coma after the stroke, she was different. Over the

years, brain images have shown a buildup of “white matter

plaque.” Healthy brain tissue is called “gray matter.” White

matter is an indication of cellular or tissue death, and when

it accumulates into plaque — sticky, opaque stuff — it

inhibits normal neuron firing.

Because Louise can’t be left alone, she stays in a nursing

home during the work week and comes home with Sybil

every weekend. “Mother’s dementia has not developed in

the stereotypical way,” Sybil said. “I have her in a locked-

September/October 2006

Grace Mitchell always enjoyed spending

time with her grandchildren.

down area because there are supposed to be structured

activities there, but she has escaped twice by talking people

into opening the locked door. I don’t know how she gets

away because she doesn’t walk fast. She uses a walker. She

wants to go back to Chicago.

“And that’s what’s interesting to me. The textbooks say

people with dementia don’t have desires they can act on.

So when Louise doesn’t act like the textbook says, they

don’t know what to do with her. She has a sense of humor.

She reads. I wish I could put her somewhere they would

encourage her to do the things she can do as opposed to

always trying to ‘manage’ her.

“I was told to expect a 180-degree change in Mother’s

personality,” says Sybil, “to learn to deal with a new person.

In Louise’s case, she’s a lot more pleasant and flexible. Now

anybody can work with her. I see a side of her that I wish

had been there when I was growing up. She was stern, not

very affectionate.”


“My mom became more reclusive

after the second stroke,” Kip said. “After

the third one, she wouldn’t even go to the

grocery store. I would literally have to

drag her to get her out of the house. It just

got to where it wasn’t worth fighting with

her. She was headstrong, and it took a lot

to change her mind. Then she developed

congestive heart failure and aortic stenosis.

She got real weak and had to have oxygen

24 hours a day.”

Kip was able to keep his mother at his

home. Grace was ambulatory and could

take care of her needs for a long time.

Even after she was on oxygen, Kip got a

tube that was long enough that she could

move around the house. He also worked

as an EMT, and that allowed him to check

on Grace several different times during his

12-hour shifts.

“I didn’t have to do much to my house,”

he said. “It’s one story. We did put a sliding

door in her bathroom after her third stroke,

so we wouldn’t have to spend 20 minutes

taking the doors off the hinges. I also

added grab bars, a tub-transfer bench and a

hand-held shower. These few changes were

enough to let her continue to be here. If she

had been paralyzed, that’s a different story,

but Mom wasn’t. If she hadn’t been able to

take care of toileting and bathing, I would

have had to have some sort of paid help to

take care of those things.”

After Grace’s third stroke, Kip bought

a medical alarm that Grace wore around

her neck and allowed her to have two-way

radio contact with a dispatcher at any time.

“The medical alarm allowed me to get out

of the house and not worry,” Kip said.

Learning from the Experience of Others

When Rosemary Horan developed dementia after several

strokes, her daughter Patricia Latham, an attorney in

Washington, D.C., discovered that many of her friends were

in similar situations with their parents. Determined that others could

learn from their experiences, Patricia worked with neuropsychiatrist

Jean Posner of Baltimore to develop “Caring for Persons with

Dementia,” an eight-page pamphlet of practical advice on issues

like communication, legal competence and coexisting physical

disabilities. An excerpt follows:

Q: Are people with dementia competent to make decisions for

themselves?

A: Some are. Some are not. A neurologist or psychiatrist can evaluate

and advise regarding competency.

EXAMPLE: A person with short-term memory loss alone may be quite

capable of making financial and personal decisions. On the other hand,

a person with severe impairments in broad areas of mental functioning

may not be competent to understand relevant facts and make rational

decisions.

Q: Can a person with dementia execute a valid Medical or General Power

of Attorney, Living Will, or Will?

A: The answer depends upon the type and severity of the mental

impairment. If the person is not able to know what he or she is doing by

signing the document, then there is a lack of the necessary capacity. If

the person does know, then there may be requisite capacity even though

the person may be confused about time and place. Some courts have

found certain individuals with dementia, caused by stroke or Alzheimer’s

disease, to have the necessary capacity and to be competent to execute

such documents. Witness testimony as to what the person understood,

at the time of signing, is often important. The opinion of the treating

physician may also be helpful.

EXAMPLE: In one case, a woman with Alzheimer’s was found to have

sufficient capacity to execute a valid will because she knew the value

and contents of her estate and to whom she desired to leave that estate,

even though she was confused about her current living arrangements.

Q. What should you do if you have expressed your frustration or anger to

the person with dementia?

A: Caregivers are often horrified at the anger and frustration they feel at

times. Such feelings are a common experience for caregivers. Express

your feelings, not to the person with dementia, but to a trusted confidant.

Realize that it can be difficult to care for a person with dementia and that

even a good person may become impatient at times. No one is perfect.

If you have said something in frustration or anger to the person, catch

yourself as quickly as possible and say that you are sorry. Try not to feel

guilty or to reproach yourself. Turn the conversation in a positive direction.

Let the person know that you enjoy visiting, so that the person does not

come to feel that he or she is a burden. You might also praise the person

and express your pride in the person’s accomplishments and efforts.

To download a free copy of the entire pamphlet, visit

www.strokeassociation.org/strokeconnection.

September/October 2006 21


Because of her work schedule, Sybil can’t leave Louise

at home.

“At first there was enough insurance money for a privateduty

nurse. When that ran out I had to enlist care because

I couldn’t leave her at home. I put her in a nursing home,

and she stays there from Sunday night till Friday afternoon.

I visit her almost every night after work, usually for two

to three hours. Then I pick her up and keep her at my

home Friday night through Sunday evening. This is quite a

financial commitment. I don’t have any retirement savings.

If she’d had long-term care insurance it would have made

it a lot easier. I recommend everyone get long-term care

insurance for their parents.”

Sybil has made a number of changes to her two-story

home, which she shares with her new husband, Robert

Campbell. “We put a lift in because I wanted her bedroom

on the same level as the master bedroom because she

wanders at night. I put baby speakers in her room so I can

be aware of what she’s doing. In the bathroom we added a

booster seat and grab bars in the shower so I can bathe her

while she supports herself.”

Sybil thinks that her mother’s memory loss works to her

advantage in many ways. “Mother doesn’t acknowledge

her stroke in any way,” she said. “She doesn’t remember

anything — no doctor, no hospital, nothing about being ill.

She thinks she is going to the nursing home to do therapy,

and because she knows I’m coming back to get her on

Friday, she’s okay.

“She thinks of my home as her home, but she

understands that I have to work. Sometimes on Sunday she

doesn’t want to go back. I have to start talking to her about

two hours before we have to leave. When she asks why she

has to leave, it just tears me apart.

22

F E A T U R E

September/October 2006

Sybil, Louise and Sybil’s husband Robert

“She still wants to have a purpose wherever she is. When

I put going to the care facility in the context of someone

waiting on her because they’re going to do therapy, she

calms down.”

“After Mom’s savings were depleted,” Kip said, “she

qualified for a long-term care program here in South

Carolina. It provided a nurse’s aid or home assistant, but

it had a long waiting list. Our application was finally

approved, but I wasn’t there the day they came for the

evaluation, and Grace told them she didn’t need it. She did

get Meals on Wheels, and that turned out to be the highlight

of her day because they always brought dessert. We’re both

diabetic so there weren’t many sweets around the house.”

Medications are another concern.

In Sybil’s case, they have only recently

discovered a combination of drugs that

allows Louise to have more awake hours than

asleep hours.

Kip had a different medication challenge

with Grace: “One day I found about 30 pills

under her placemat that she wasn’t taking and

telling me she was. After that I started giving

her her pills and watching her take them.”

As many challenges as there are in taking

care of a patient with dementia, both Kip

and Sybil believe that it’s been worth it.

In many cases financial issues have to be

worked out. As Sybil pointed out, long-term

care insurance is a good thing for parents to

have. Kip acknowledges that working parttime

cost him quite a bit of money, but “the

money is inconsequential. We had a lot of fun

together, particularly before the third stroke. It was a mental,

emotional and financial strain, but as an EMT I do things

for people that I don’t even know, so I would have done

anything in my power to keep her at home.

“It wasn’t easy, and we did butt heads occasionally, like

over doing her therapy exercises. Of course, I wish I hadn’t

yelled at her over this or that, but at the time, it was the best

I could do.”

“Looking back, if I had the choice to do it over again,

I would do it again without any hesitation. The one thing

that I would change is probably ask my brother and sister

to help out a little more. I think they have regrets now that

they didn’t see her that much in the last few years of her

life. They were always busy or something came up. At least

those are regrets that I don’t have.”

“This has been quite a learning and character-building

experience for me,” Sybil said. “I wish I could keep Mother

home all the time, but it just isn’t possible because of

my job and because that wouldn’t be best for her. This

experience has deepened me spiritually. I’m a trained


scientist, but if I had any doubts about the Creative Spirit,

this experience has put them to rest. I don’t think it’s good

for us to separate science from religion. They coexist

well and complement each other. That’s another lesson

I’ve learned.”

Both Kip and Sybil have advice for new caregivers.

“Make sure that you can get time for yourself — get

a friend or neighbor to come over for a little while so

you can have time to do things you want or need to do,”

Kip said. “If you don’t take some time for yourself, you

build up a lot of resentment. I used to walk on the beach

whenever I could.”

Sybil said, “Between taking care of Louise and

spending time with my husband, I don’t have a lot of

time for me. My goal next month is to go to the spa for a

few hours.

“Nobody expects this to happen, and there wasn’t

a lot of guidance out there for me. That’s one reason

I have connected with the National Family Caregivers

Association. That has allowed me to learn from others or

to teach others what I have learned.”

“Assistance really depends on what kinds of symptoms

the patients shows,” Dr. Mesulam said. “So everything

starts with the clinical evaluation — how does the patient

interact with his or her environment and the family? Then

you can begin to develop a plan for how to respond.”

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September/October 2006 2


2

September/October 2006

The

of Dementia

by Elizabeth Cockey


Fifteen years ago my mother

suffered a series of strokes that affected her speech and

motor coordination. After Mom came back from the

hospital, my father became her primary caregiver, a

complete reversal of their roles. He managed to keep her

at home with him for five more years, but eventually she

became so confused and disoriented that he was afraid to

leave her by herself.

One day while he was out grocery shopping she fell in

the bathroom. When he came home, he found her wedged

between the toilet and the wall. Their dog was with her,

licking her face. My father couldn’t lift her off the floor

and had to call 9-1-1.

My mother’s disability was the reason I gave

up a lucrative career in marketing and sales.

At the time she was being housed in a nursing

facility a great distance from me. She was

depressed and preferred to sit in her room

watching TV.

Mom would cry and cling to anyone who

came to see her, otherwise she spoke very

little. When I came to visit, she only had one

thing on her mind — going home. It was

devastating to visit and witness her decline. I

felt helpless not knowing what could be done

to relieve her suffering.

Because of my mother’s condition I felt

compelled to work with others like her. I didn’t

know for certain whether art would make a

difference, but I wanted to try. I talked with

the director of therapeutic recreation at a local

retirement community about doing art with

some of the residents who lived there. She gave

me a chance to paint with the residents who

were housed in a special care unit. Most were suffering

with dementia resulting from stroke or Alzheimer’s disease.

“They’re not going to be very responsive,” the director

warned me.

“Just give me a month, and if nothing happens you can

rescind my art program,” I said. I remember she looked

straight at me before she laughed good naturedly.

“Personally I think you’re a little crazy,” she said, “but

they do need something to do. Okay, you’ve got a month.”

We shook hands, and as I left that day I just knew that I

was going to make a difference, somehow.

My First Class

The first class was a complete disaster. To begin with it

took quite a while to round up all eight residents and then

get them to sit at the table together. One lady in particular

complicated things by picking up all the newspapers I had

spread over the table. She folded them into squares while I

guided the others into their seats.

I handed out white construction paper and squirted

non-toxic tempera paint into plastic drinking cups and set

the cups in front of the residents. Immediately they tried

to drink the paint. After that, most of them realized that

the paint wasn’t juice, and they got up from the table and

wandered away. The director of the therapeutic recreation

department met me on my way out of the building that day.

“How did it go?” she asked.

I put down the box of paint I’d been carrying and gave a

sigh. “Not very well,” I confessed. “They drank the paint.”

She smiled. “Did they have a good time?” she asked. I

shrugged my shoulders.

“I like your idea,” she said suddenly. “I think you’re on

to something here. Why don’t you keep coming back and

we’ll see how it goes?”

Above: Mary Davis (l) and Elizabeth Cockey (r) discuss how to finish a painting, while

James Evans (foreground) works on his landscape; Opposite page: paintings by three of

Elizabeth’s dementia patients; Photo courtesy Accent Interactive

Quite frankly, if she hadn’t encouraged me I might not

have gone back at all. I could have stayed in marketing

for the rest of my life and never known what was about to

happen. I was standing at the beginning of a new career

beyond my wildest dreams: Finding a recovery therapy that

would open people’s minds and give them a quality of life

never thought possible. Through the course of my work,

I have not only learned how to relate on a personal level

with these same people, but also to lead them back to an

experience of life one brushstroke at a time.

Everybody Loves Art!

Whether done in a community setting or at home, art

provides an environment that can excite the imagination,

even in the most severely impaired. Creating art stimulates

regions in the brain that affect memory and coordination

that have become inactive due to cognitive impairment

disorders. Painting and sculpting are activities that most

individuals with dementia can accomplish. Those in mid-

September/October 2006 25


2

to-late stage dementia often respond best to bright colors

and organic materials such as live plants, fabric and

homemade clay.

Painting is something that everyone can do. No

elaborate equipment is required. All you need is a flat

surface like the kitchen table to paint on. Start out by

outlining a simple picture onto a sheet of construction

paper. (If you don’t have paper handy, you can cut up a

brown paper bag and smooth it out.) For instance, draw a

flower. Then, using one color at a time, outline the petals

first and let your loved one fill it in. Next, outline the stem

in green and ask them to paint it in.

Mrs. Nan Cockey paints in the kitchen with her young neighbor,

Benjamin Kinard; Photo courtesy Accent Interactive

If they have forgotten how to hold a brush, just wrap

your hand around theirs and show them how it feels to

paint, moving the brush in a back and forth motion. It

won’t take long before they will get the idea and be able to

paint on their own.

Painting relieves boredom, and it helps your survivor

practice small motor skills, even if they only have the

use of one arm. Simply tape the paper to the painting

surface so it won’t slip. When stroke or Alzheimer’s

disease has stripped an individual of verbal skills,

recreational painting provides an alternative way to

express themselves in a non-threatening and comfortable

way. This is because what remains intact is the ability to

appreciate beauty, to know what’s good and what’s not

so good, especially in the visual.

Results & Recipes

Are you wondering what happened with that first

group? Over the course of six months the participants were

able to sit together and focus long enough to paint with me.

Eventually these same people completed murals that were

10 feet long, made holiday decorations — and recognized

each other and their loved ones when they came to visit.

After a year with no communication at all one man spoke

with his wife again. What he said was: “I love you.”

September/October 2006

It’s not the final product you

should be interested in; it’s the

process of painting and the interaction

it stimulates that counts.

For families, art can bring family members together

via a new channel of expression, especially when verbal

communication has failed. If going to an art store for

supplies is daunting, don’t worry. It’s possible to cook up

some paint in the kitchen. Here’s a simple recipe that is

easy and inexpensive:

Dissolve 1 cup of cornstarch into 2 cups of water in a

sauce pan. Stir over medium heat until it thickens. Remove

from the stove and add 1 small container of food coloring

(about 3 tablespoons). Stir until it reaches a smooth

consistency. I like to add ¼ cup of dish detergent at this

point which gives the paint a creamy texture – but it’s not

necessary. You can store the paint in empty plastic ketchup

bottles or Tupperware containers in the refrigerator for up

to a month.

Remember, it’s not the final product you should be

interested in; it’s the process of painting and the interaction

it stimulates that counts. Use your knowledge about past

hobbies and family events to stimulate your loved one’s

memory. A painting of flowers could lead to a discussion

about gardening.

Encouragement goes a long way, too. Saying things

like “that’s great” and “good job” can help keep them

focused long enough to complete a painting. Hang it up

when they are finished, whether it’s on the refrigerator

at home or in the hallway of a long-term care facility.

Being able to see the artwork stimulates the memory.

Your survivor might remember “I painted that,” which can

provide the opportunity for reminiscence and conversation.

Keep it simple when you sit down to paint with your

loved one. I have seen incredible things happen, one

brushstroke at a time. And you, too, might lose some of

the fear surrounding dementia and memory loss. This will

make it easier to live with and relate to your loved one,

and it might mean keeping them at home or within the

community as long as possible.

Elizabeth Cockey is an art

therapist and consultant to healthcare

facilities about the use of art therapy.

Her new book, Drawn from Memory:

A Personal Story of Healing Through

Art, will be available in bookstores

January 2007. For more information

about Elizabeth and her training

programs, contact her at

www.elizabethcockey.com


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September/October 2006 27

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Over the years, we have heard

from countless survivors about

the importance of support

groups in their recovery. Whether

you are years post-stroke or

only months away from your

stroke, the support of others

who have been there helps the

emotional healing all stroke

families go through. These

stories demonstrate that support

groups come in many flavors.

If you would like help finding

a support group in your area,

you can call the Warmline at

1-800-478-7653 or visit our Web

site at www.StrokeAssociation.

org/strokegroup to search for a

group based on your ZIP code.

New York’s Stroke Kings by Jon Caswell

When Ted and Irma King married, they had a lot

in common: Each already had children, and

then they had another one together. Little did

they know then that they would share a stroke

diagnosis — Ted in 1986 at age 64 and Irma in 1988 at age 58.

Ted’s stroke cost him the full use of his right side. Irma had

problems with her left side but was able to return to work.

During Ted’s

recovery he started

meeting with other

survivors in the hospital.

“In a sense, this group

became a ‘band of

brothers,’” said Ted,

who is a veteran

of World War II. He

survived the Battle

Ted and Irma King

of the Bulge with a

shrapnel wound and frostbite on both feet.

Before being discharged from rehab, Ted and several

other survivors agreed to see each other outside the hospital.

“We met at a local McDonald’s,” Ted said. “We just drank

coffee or soda and talked about what was going on in each

other’s lives. We talked about progress and problems we had

because of our handicaps. The most important thing was the

emotional support we gave each other.”

2

September/October 2006

The Healing Power of

The meetings soon became a monthly event.

After Irma’s stroke in 1988, she became involved and

the mission expanded. “We started going to the hospital

and talking to survivors in the first week after their strokes.

The doctors would set up meetings for us,” said Irma, now

76. “That’s how we started having weekly meetings at the

restaurant here in Penfield, which is near Rochester in western

New York.”

Not long after that a second support group spun off in

Greece, on the other side of Rochester, and then a third group

started in Farmington, then a fourth group in Canandaigua,

N.Y. Then a fifth group started in Geneseo, N.Y. All are still

meeting in area McDonald’s restaurants once a week from 9

to 11. Ted and Irma formed Stroke Support Self-Help Clubs of

Western New York, a not-for-profit organization.

Ted started visiting rehab units, nursing homes and even

personal residences in a three-county area, providing support

and counsel for other survivors. “I always invited them to

come to the meetings,” Ted said. Today there are more than

450 members involved in the five groups.

In 2000 Ted had another stroke, which further weakened

his right side and left him in a wheelchair. He also had

aphasia. He and Irma continued to be active until recently.

For almost 40 years between them, Ted and Irma King

have lived a simple message, which has now been shared

with many stroke families — there is life after stroke.


Connection

Aphasia Support Groups

by Janet O’Connor, Speech/Language Pathologist • Aphasia and Neurolinguistics Research Lab

Northwestern University • Evanston, Illinois

While stroke support groups fill a great need in the

stroke community, survivors with aphasia benefit

from groups that address the many unique

problems that result from disrupted language.

Many general stroke groups are led by survivors or caregivers.

Aphasia support groups are typically facilitated by speech

therapy professionals.

Some survivors with aphasia leave the hospital without ever

meeting another person who has aphasia.

“I had never heard of aphasia before my husband’s stroke

so I had no idea what to expect,” said Paulette Westney, who

was an early member of our support group at Northwestern’s

Aphasia and Neurolinguistics Research Lab in Evanston, Ill.

“Because of his inability to find the right words and be able

to express them, I didn’t know what he was trying to say or

needing. It was very frustrating and a difficult time for both of

us. His intellect wasn’t affected; he knew what he wanted to

say but couldn’t.

“We needed to find people who were going through what

we were going through. I was shocked at how large the

aphasia community is! From a caregiver’s perspective, it was

helpful to learn that others were dealing with and experiencing

the same things I did. I was especially grateful and inspired to

see people who were still improving, even after 10 or 20 years.

That gave us both hope. Because of the support group, we

have both learned how to live our lives in spite of the aphasia

and are motivated to reach out and help others.”

Our group, which I facilitate,

meets on the second Saturday

of every month on the Evanston

campus of Northwestern

University. At some meetings

we have educational programs

and bring in speakers who are

specialists in topics like computerassisted

technology or other topics

related to aphasia.

About half the meetings are

less structured. In these, the group

members just talk about what’s

going on in their lives or discuss

specific topics that concern them.

“Because of the

support group,

we have both

learned how

to live our lives

in spite of the

aphasia and are

motivated to

reach out and

help others.”

The chance to practice speaking in an unstructured environment

is one of the benefits of the programs; members never have to

worry about someone trying to finish their sentences!

Whether it’s in a hospital or a local church, getting a group

up and running can be a challenge. For instance, it can be

difficult to spread the word because people with aphasia

often wind up so isolated. Here at Northwestern, we have an

aphasia clinic as well as the lab, so we had a built-in group of

people who wanted to get involved. The survivors wanted to

get the support of other survivors as well as give support to

others with aphasia.

After we had developed our core group, we spread the

word through other stroke groups and to speech therapists in

the Chicago area. Today we have 60 members. We average

about 25 at monthly meetings.

After two years together, our members are ready to reach out

to others with aphasia. Following the lead of Living with Aphasia,

a Madison, Wis., support group that sponsored the Midwest

Regional Aphasia Conference in 2004, our Northwestern group

is sponsoring a second conference this Sept. 15–17, 2006,

in Northbrook, Ill. This is a great opportunity for survivors with

aphasia to help other survivors with aphasia, and the planning

is well under way. We expect about 200 survivors, caregivers

and speech therapy professionals to attend. For more on this

conference, go to www.midwestaphasiaconference.org or

www.communication.northwestern.edu/csd/clinics/aphasia/

or call 847-467-7591.

September/October 2006 29


Hi-Tech and High Touch by Jon Caswell

many people can say they have two

families,” said survivor Cindi Twickler of

her online stroke support group, the AOL

“Not

Strokechatters. Cindi, 47, was speaking

at their annual get-together held in Fort Worth, Texas, this

past May. “We are lucky. We honor each other, we support

each other, we guide each other, but most of all, we relate

to each other, and that makes our personal tragedies easier

to cope with.”

The AOL Strokechatters

is the Internet child

of survivor Don Aitro,

72, of Fort Worth. The

Strokechatters is a private

chat room, and membership

is required. Membership

provides access to the

chat room, message board

and e-mail. “I started my

first chat room on AOL

in 1998,” says Don, who

uses a wheelchair. “It was

a public chat room, and

people came in who weren’t

survivors or caregivers. I

don’t know why they want

to do that. You learn to spot

them right away, but still it

created problems, so I started a private chat room last year

so we can control it better.”

Donna Ricci, 52, of Ft. Lauderdale had her stroke 27

years ago. Although she is in a wheelchair and has aphasia,

she has raised two daughters and lives independently. “I was

a member of a support group in Ft. Lauderdale,” she says,

“but it only meets once a month, but with this group, we

meet every day. We talk about personal stuff and stroke stuff.

Because of them I have another family who’s interested in my

life. They are there for me, day or night. We don’t just talk on

the computer, we talk on the phone. Many of us visit in each

other’s homes.”

Many of the AOL group have known each other from

other chat rooms, but they have only begun having annual

gatherings recently. The Fort Worth weekend was their third,

and they had it there so Don could attend. Donna hosts next

year’s in Orlando.

Stroke leaves many people with unusable parts or a

different look,” Cindi Twickler said. “We just don’t seem to

fit the same anymore. It’s like putting together a puzzle for

months, and when you get to the last piece, it’s missing! All of

us are those last pieces, but when we go to our group, we all

0

September/October 2006

fit fine. No one notices that foot we drag or that arm we prop

up on the table or that crooked smile. We all just fit. We’ve

found a special place that allows us not only to receive help,

but it allows us to focus on issues that others are facing and

help them.”

The AOL Strokechatters has about 40 members. If you

are interested in joining this group, you can contact Don Aitro

at Don349@aol.com. You must subscribe to AOL in order to

participate in Don’s group.

“Once you have a stroke, a lot of your friends disappear,

so you’re left on your own,” says Don. “We survivors have our

emotions right under the skin, and they come out easily when

we come together. When we get in that chat room, we’re all

the same, the disabilities disappear.”

For information on other online support groups, visit our

Web site at www.StrokeAssociation.org. Type “stroke support

groups” in the Search window.

What’s in It for You

The stroke support group at Mercy Hospital in Iowa

City, Iowa, will celebrate its 20th anniversary in 2007.

Like many groups, it was started by a stroke family

who wanted the counsel and support of people who

were on the same journey to recovery. Maintaining a

support group for so many years takes a lot of dedication

and energy from stroke families and the allied health

professionals who serve them.

Recently the members of the Mercy Hospital group

shared their top 10 reasons for attending the group:

• Learning to think as a survivor, not a victim

• Sharing and learning with other people

• Keeping hope in your heart for the future

• Realizing that stroke affects people differently

• Being with people who understand your situation

helps you heal

• Helping overcome depression

• Learning what to expect

• Gaining inspiration from others

• Discussing meaningful topics and being with others

• Celebrating the little and big successes that

survivors have

— Submitted by Mary McCarthy, Patient Education

Coordinator, Mercy Hospital, Iowa City, Iowa


Hunting

with One

Hand

by Knute Wallin, Survivor

Greenwood, Wisconsin

i love deer hunting, but after my

stroke in October 2002, I doubted I could ever do it again. I am

right handed, and the stroke affected my right side, so shooting

a deer rifle would mean not just learning to shoot one-handed,

I’d have to do it with my left hand.

In August 2004, I was considering selling my rifle and

other equipment when John Waters, a teacher and dear

friend who I had worked with during my 40 years as an

educator, said we should go hunting. I didn’t think he was

serious but he offered to take me out to practice shooting

my .30-06 one-handed.

‘‘i marvel at how

much work my wife

korky and friends

will do just so i can

do what i love.’’

He and his son Nathan took me to a shooting range, and I

shot at targets at 25 and 100 yards. They were very helpful, and

I passed the test to go deer hunting. I got a license, the orange

clothing and ammunition and registered to participate in the

West Central Clark County Hunt for Hunters with Disabilities.

Central Wisconsin has plenty of deer, and each year

disabled hunters go out a week (Saturday through Sunday)

before the regular hunting season. Dale Petkovsek heads the

organization that puts on the hunt near Willard, Wis. Each

year, he enrolls more landowners in the program, and

there are an increasing number of volunteers to help the

hunters. Others donate money for the after-hunt “feeds”

and door prizes.

There’s even a CD with pictures of each hunter and the deer

he got. Each hunter buys his own license, but all other expenses

are covered. The spirit is really great.

With my wife Korky’s help, I was ready at 5:15 that first

Saturday morning. I had my orange clothes, tag, gun, ammo

and, of course, my wheelchair, though I typically walk with

a cane. Another teacher friend, Bob Lenz, and John took

care of the tent, lunch and the horsepower to get me to

the stand where I would hunt from. It was a great October

day, and we enjoyed a full day of hunting, but the deer

population didn’t cooperate.

September/October 2006 1


That evening, the three of us attended a big “feed”

sponsored by the Hunt for Hunters with Disabilities

organization. Disabled hunters, guides, landowners and

sponsors gathered for good food, refreshments and door

prizes. It was a great atmosphere of frivolity and tales

of the day’s adventures.

On Sunday we rested

from the previous day’s

activities and watched the

Packers football game.

John and Bob reset the

tent in a place they thought

was sure to have deer. And

one did pass by, but out

of range. I saw a flock of

geese, some crows and

counted 27 turkeys, but the

whitetail failed to cooperate

again. I missed the next

three days because John

and Bob couldn’t take me,

but on Thursday I went

Nathan and John Waters (standing);

Knute Wallin (seated)

2

back out with John and his

14-year old son Nathan.

John repositioned the

tent yet again, and I marveled at what he — and all the

other volunteers — were willing to do so I could hunt.

Again the whitetail did not come in range, but then

near the close of hunting hours, Nathan, who had the

binoculars, said, “There’s one.”

Without another word, I brought my gun up to the

shooting bar, and John put my ear protection on. I

spotted the deer in my scope; at that distance it looked

like a small mouse. Nathan said, “It’s a buck.”

I fired, and the deer vanished. “What happened?”

I asked.

Searching with the binoculars, Nathan said, “I think

it’s down.”

When we reached the deer, the distance was over

200 yards — a very long shot. I was extremely happy;

I had a 6-point buck! John and a neighbor fielddressed

the deer, and afterward we registered it, had a

hamburger and shared a lot of camaraderie, which is

another thing I love about deer hunting.

That buck was just the first of three deer I harvested

in 2004. I got another buck in the regular hunting

season and a doe during crossbow season. In 2005, I

also participated in the same three hunts and harvested

two more bucks and another doe.

As you can tell, I still love to hunt, and I still marvel

at how much work my wife Korky and friends John,

Bob and Nathan — not to mention all the people who

help Dale Petkovsek put on the hunt — will do just so I

can do what I love.

September/October 2006

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Life

at the

curb

Comedian and stroke

survivor John Kawie’s

unique perspective

on stroke survival

The décor at the “Dashing

Diva” is pink, and black

…very pink, and black. I felt

like I was standing in a box

of Good & Plenty candy.

Only the Lonely

“May I help you sir?” the receptionist asked. I’m sure she

sensed my apprehension. I was, you see, standing in the middle of a nail

salon called “Dashing Diva.” I wasn’t there meeting my wife. I was there as a

customer. “Dashing Diva” is in our neighborhood.

The décor is pink, and black … very pink, and black. Even the staff’s Tshirts

are pink and black. I felt like I was standing in a box of Good & Plenty

candy. I gazed down at the receptionist’s polished nails. They looked like a

bad acid trip I had in college. Now I began to search for an escape route.

In any case this was week three of Marilyn’s five-week business trip to

Auckland, New Zealand. According to the map I googled, New Zealand is on

the other side of the world in an area of the South Pacific called Oceania. It

sounded like a make-believe land where Aquaman comes from. It looked like

it would take three weeks just to get there.

Marilyn has been on business trips before, so being left alone after the

stroke to fend for myself was nothing new. What was new was the length of

time she’d be gone.

My meal preparation problem was solved with one word — “takeout.”

Two words also helped me get through the laundry — “clean underwear.”

Housekeeping? I even managed to change the Swiffer pad one-handed.

Everything was going fine, but of course there’s always that one thing that

drives you crazy. For me it was cutting my nails. I tried to ignore it, but I was

starting to look like a vampire with a couple of broken nails. I was a disgrace

even to the undead. I put the nail clipper between my knees like Susanne

Sommers and the Thighmaster. I didn’t cut my nails. But I did manage to

launch the nail clipper across the room. This called for drastic measures.

So, on my way to the drugstore, I passed the pink awning that said

“Dashing Diva.” To me men getting manicures was an urban myth. But I was

desperate. With a combination of determination and fear, I spontaneously

ducked in, and tried to act as nonchalant as possible. While I was planning my

escape a gaggle of manicurists surrounded me. I was like a pet. I explained

the stroke, New Zealand and that I didn’t want my nails to look like the

Bedazzler. I was hoping they’d shove me in some dark corner, and it would be

over quickly. Instead, one of them led me to where no

man has gone before — to a table right in front next to

the picture window overlooking 8th Street. Only a spot

on the evening news would have given me more

exposure. The table was laid out with more

tools than Home Depot. “What’s that for?”

I nervously asked, as she grabbed a pink

polka dot bottle. She told me to relax, it

was only lotion, and she wanted to

massage my affected hand before

she started. “Oooo, that feels good!” I moaned.

Suddenly, I was cast under some kind of voodoo

spell, because I immediately made another

appointment for more of this “Dashing Diva

Therapy.”

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.

September/October 2006


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

Playing

Around

With Recovery

September/October 2006

ard games, board games and puzzles

may seem like child’s play, but they are

valuable tools in the hands of people

who experience the cognitive and

physical deficits frequently associated

with stroke.

Therapists and psychologists target deficits by using

games to strengthen their patients’ weaknesses. Matching the

game to the specific deficit is a key to rebuilding lost skills.

“You can use about any game,” said Brenda Wilson,

Ph.D., associate professor of communication disorders and

sciences at Eastern Illinois University in Charleston. “You

just have to understand what kind of cognitive demands

and skills are involved with whatever you are using.”

H o n i n g t H e S k i l l S

Inability to pay attention is common for stroke survivors.

“Everyone who has any kind of brain injury, including

by Mike Mills

stroke, has trouble with attention in the first phases of

recovery,” Dr. Wilson said.

To learn how to pay better attention, stroke patients

can play games that require attention — for example, a card game called War. “It’s a fairly

simple game; the important thing is that you have to pay attention,” said Ann V. Deaton, Ph.D.,

who has worked in rehab psychology and neuropsychology at Sheltering Arms Hospital and

Children’s Hospital, both in Richmond, Va. (See the next page for descriptions of games

mentioned in this article.)

Attention is only one of the skills targeted in games. Others include speech, concentration,

memory, word-finding and motor skills. In aphasia, damage to the language center of the brain

can impair several of these skills. Other deficits may include comprehension, reading and

writing. “For a lot of stroke survivors, it’s more an issue of concentration. Can they really

persist and stay focused?” Dr. Deaton said. That’s when the card game called Concentration

comes in handy. It requires finding matching cards and helps develop memory, as well.

“For stroke patients, many times I’ve used word-find puzzles because they can’t do

crossword puzzles,” Dr. Wilson said. “And we have workbooks with simplified crossword

puzzles that list word choices. It helps with the word-finding problem, which is typical of

people with aphasia.”

For speech and word-retrieval problems, Dr. Deaton likes the game Battleship. Players

must practice speech by telling each other whether the opponent’s shot was a hit or a miss.

Scattergories (junior version), which requires choosing words that start with a specific letter,

also helps with language skills. She also suggests the card game Slapjack for helping improve

motor skills. Players must use their arms and hands to slap cards, good therapy for those with

weakness on one side of the body when they are asked to slap only with that hand.


Following are descriptions of

games and the skills they develop.

C a r d g a m e S

War

How to Play: A card game for two to six players.

Players take opponents’ cards by playing a higher card

until someone wins all the cards.

Skills: Attention. Constant attention is necessary to keep

track of each card’s rank.

Concentration

Slapjack

How to Play: A card game

for three to eight players in

which players try to win all

the cards by being the first

to slap each jack as it is

played.

Skills: Attention and motor

skills. Attention is required

to identify a jack, and

motor skills are needed to

slap the card with the hand

using only the affected side.

How to Play: A card game for two to six players. Cards

are laid out face down in four rows of 13 cards. Players

take turns turning over two cards at a time looking for a

match. The player with the most matches wins.

Skills: Memory and concentration. Not only is memory

essential to match the cards, but players also must

concentrate to stay focused.

Complete rules for these three games and many others

can be found at www.partygamecentral.com.

B o a r d g a m e S

Connect Four

How to Play: A connecting game for two players. During

each turn, a plastic disk is dropped into a slotted, upright

grid of 49 spaces. The first player to stack four connecting

disks — vertically or horizontally or diagonally — wins.

Skills: Attention and motor skills. Players must pay

attention to two things at once, building their own line of

four connecting disks and blocking their opponents.

Battleship

How to Play: A board game for two players. Each

player has a 100-block grid on which 10 ships of varying

lengths are arranged. Another grid is used for guessing

and tracking the location of the ships on the opponent’s

grid. Each player takes turns “shooting” at the opponent’s

ships by naming blocks on the grid until a player sinks all

the opponent’s ships.

Skills: Language, planning, reasoning and fine motor

skills. Players tell each other where shots are taken and

which ships are hit and sunk and must insert pegs into the

board and ships.

Scattergories (Junior)

How to Play: A board game for two to six players in

which players try to list as many words as they can

that start with a specific letter and fall within a list of

categories. For instance, foods, states, animals, cars and

flowers that start with the letter S.

Skills: Language, cognitive flexibility.

W o r d P u z z l e S

Crossword Puzzles

Puzzles of various skill

levels are found in

newspapers and books.

Skills: Word-finding.

Seek and Find

Booklets available in grocery

and other stores contain

horizontal, vertical and

diagonal rows of letters

on one page and words to

search for on the facing

page.

Skills: Word-finding and

attention.

J i g S aW P u z z l e S

Choose a puzzle that’s a challenge but not too

challenging. A 500-piece jigsaw puzzle may be too

complicated and frustrating, yet the person may feel

insulted by a simple puzzle that says on the box that it’s

for ages 3 to 5.

Skills: Concentration and motor skills.

September/October 2006 5


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

o t H e r a C t i v i t i e S

Extracting words: Generate as many words as

possible from a given word. Example: how many words

can you form from “rehabilitation”? tab, habit, rent,

battle, hear, etc.

Skills: Word-finding and language.

Auditory, visual analogies: Supplying a missing

piece in a pattern in speech, in a picture or in arranging

words or letters. Here are a couple of examples:

Fill in the blanks — auditory analogy:

Cow is to calf as dog is to ________?

Visual analogy: • • • • • • • • • • • • • • _________?

(How many dots logically follow the sequence of two

dots, four dots and eight dots?)

Skills: Language and visual perception.

H o W o f t e n t o P l ay

Dr. Deaton thinks rehab patients respond better when

they are having fun, so play games as often as possible.

“What I love about games is that where most rehabrelated

homework from a therapist is really a chore,

when you’re able to use games to rehab someone’s

cognitive deficits, there are things available that they

enjoy doing,” she said. “So they practice more because

they are not really working when they are doing it

— they’re really playing.”

R e s o u r c e s

The Together Rx Access Card will allow 36

million uninsured patients — 80 percent of

the uninsured population — to access a

broad range of prescription drugs and products at a

savings of 25–40 percent at the pharmacy counter

on 275 brand-name prescriptions. A wide range of

generic drugs is also included.

September/October 2006

The game may be something enjoyed in the past or

a new discovery. One patient experienced physical and

speech deficits, severely limiting his activities. “We

taught him to play simple card games,” Dr. Wilson said.

“He had played cards earlier in his life, so we built on

skills that he’d already developed, and that turned out to

be a real source of enjoyment because it was a way that

he could interact with his family.”

m o d i f y i n g t H e g a m e

Once a therapist determines the survivor’s

performance level, the game can be made easier or

more difficult and adapted to be played in a group or

with another person.

“The biggest thing is for families to understand that

if they can play one card game, they can’t necessarily

play another card game,” Dr. Wilson said. “Therapists,

especially occupational therapists and speech

therapists, are better at knowing how difficult a task

is for a specific patient, according to what his or her

deficits are.”

That is not to say that games can’t be tried at home.

Outside of rehab sessions, family members and friends

provide a familiar setting that may encourage more

frequent participation. A stroke survivor can enjoy

building skills by playing a simple game with a spouse

or grandchildren without even thinking of it as

therapy.

To be eligible for the card, applicants must:

• Not be eligible for Medicare

• Have no public or private prescription drug coverage

• Have an income below $30,000 (single) or

$60,000 (family)

• Be a legal resident of the U.S. or Puerto Rico

There are 19 companies participating in Together Rx Access,

including Abbott, AstraZeneca, Bristol-Myers Squibb and

Novartis. People enrolling in the program will be automatically

notified if they are eligible for further savings through the

companies’ Patient Assistance Programs.

For more information:

www.TogetherRxAccess.com

1-800-444-4106


PLAVIX® Rx only

clopidogrel bisulfate tablets

INDICATIONS AND USAGE

PLAVIX (clopidogrel bisulfate) is indicated for the reduction of atherothrombotic 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

(25 times that in humans at the recommended daily dose of 75 mg.

Clopidogrel was not genotoxic in four in vitro tests (Ames test, DNA-repair test in rat hepatocytes,

gene mutation assay in Chinese hamster fibroblasts, and metaphase chromosome analysis

of human lymphocytes) and in one in vivo test (micronucleus test by oral route in mice).

Clopidogrel was found to have no effect on fertility of male and female rats at oral doses

up to 400 mg/kg per day (52 times the recommended human dose on a mg/m2 basis).

Pregnancy

Pregnancy Category B. Reproduction studies performed in rats and rabbits at doses up to

500 and 300 mg/kg/day (respectively, 65 and 78 times the recommended daily human dose

on a mg/m2 basis), revealed no evidence of impaired fertility or fetotoxicity due to clopidogrel.

There are, however, no adequate and well-controlled studies in pregnant women.

Because animal reproduction studies are not always predictive of a human response, PLAVIX

should be used during pregnancy only if clearly needed.

Nursing Mothers

Studies in rats have shown that clopidogrel and/or its metabolites are excreted in the milk.

It is not known whether this drug is excreted in human milk. Because many drugs are excreted

in human milk and because of the potential for serious adverse reactions in nursing infants,

a decision should be made whether to discontinue nursing or to discontinue the drug, taking

into account the importance of the drug to the nursing woman.

Pediatric Use

Safety and effectiveness in the pediatric population have not been established.

Geriatric Use

Of the total number of subjects in controlled clinical studies, approximately 50% of patients

treated with PLAVIX were 65 years of age and over. Approximately 16% of patients treated

with PLAVIX were 75 years of age and over.

The observed difference in risk of thrombotic events with clopidogrel plus aspirin versus

placebo plus aspirin by age category is provided in Figure 3 (see CLINICAL STUDIES). The

observed difference in risk of bleeding events with clopidogrel plus aspirin versus placebo

plus aspirin by age category is provided in Table 3 (see ADVERSE REACTIONS).

ADVERSE REACTIONS

PLAVIX has been evaluated for safety in more than 17,500 patients, including over 9,000

patients treated for 1 year or more. The overall tolerability of PLAVIX in CAPRIE was similar

to that of aspirin regardless of age, gender and race, with an approximately equal incidence

(13%) of patients withdrawing from treatment because of adverse reactions. The clinically

important adverse events observed in CAPRIE and CURE are discussed below.

Hemorrhagic: In CAPRIE patients receiving PLAVIX, gastrointestinal hemorrhage occurred

at a rate of 2.0%, and required hospitalization in 0.7%. In patients receiving aspirin, the corresponding

rates were 2.7% and 1.1%, respectively. The incidence of intracranial hemorrhage

was 0.4% for PLAVIX compared to 0.5% for aspirin.

In CURE, PLAVIX use with aspirin was associated with an increase in bleeding compared to

placebo with aspirin (see Table 3). There was an excess in major bleeding in patients receiving

PLAVIX plus aspirin compared with placebo plus aspirin, primarily gastrointestinal and

at puncture sites. The incidence of intracranial hemorrhage (0.1%), and fatal bleeding

(0.2%), were the same in both groups.

The overall incidence of bleeding is described in Table 3 for patients receiving both PLAVIX

and aspirin in CURE,

Table 3: CURE Incidence of bleeding complications (% patients)

Event PLAVIX Placebo P-value

(+ aspirin)* (+ aspirin)*

(n=6259) (n=6303)

Major bleeding † 3.7 ‡ 2.7 § 0.001

Life-threatening bleeding 2.2 1.8 0.13

Fatal 0.2 0.2

5 g/dL hemoglobin drop 0.9 0.9

Requiring surgical intervention 0.7 0.7

Hemorrhagic strokes 0.1 0.1

Requiring inotropes 0.5 0.5

Requiring transfusion (≥4 units) 1.2 1.0

Other major bleeding 1.6 1.0 0.005

Significantly disabling 0.4 0.3

Intraocular bleeding with

significant loss of vision 0.05 0.03

Requiring 2-3 units of blood 1.3 0.9

Minor bleeding 5.1 2.4


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.

© 2006 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

1-800-609-7515

PROVEN TO HELP PROTECT FROM

ANOTHER HEART ATTACK OR STROKE

USA.CLO.06.03.81/March 2006 B1-K0238/03-06

sanofi-aventis U.S. LLC

NON-PROFIT ORG.

U.S. POSTAGE PAID

PERMIT NO. 4

LONG PRAIRIE, MN

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