Moving On Together – The Difference a Group Makes

Transcription

Peer Visiting
When ‘been there,
done that’ is a job
description
• On the High Road with Gary Hyink
• How To Beat a Stroke
• Moving On Together — the
Difference a Group Makes
contents
nts
January/February 2007
Feature Story
Been There, Done That
— Sharing Your Wealth 18
Peer visitors may be a reliable guide
when you’re navigating the unknown.
On the High Road with Gary Hyink 16
Gary Hyink’s life journey has been all over the map, but
along the way he’s made God his tour guide.
How To Beat a Stroke 24
Survivor Laura Wisner shares a few simple rules that
have made a difference in her emotional recovery.
Moving On Together — the Difference
a Group Makes 28
A post-stroke exercise group in Connecticut
helps enhance ongoing recovery.
18
16
24
Departments
Letters to the Editor 4
Stroke Notes 6
Readers Room 12
Life at the Curb 27
Everyday Survival 30
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
Staff and Consultants:
Jon Caswell, Lead Editor
Copyright 2007 American Heart Association ISSN 1047-014X
Dennis Milne, Vice President,
American Stroke Association
Jim Batts, Writer
Wendy Segrest, Director, American
Stroke Association Operations
Pierce Goetz, Art Director
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.
Debi McGill, Editor-in-Chief
1-888-4STROKE (1-888-478-7653)
Mike Mills, Writer
Michelle Neighbors,
Advertising Sales
StrokeAssociation.org
YOU DON’T
WANT ANOTHER
HEART ATTACK
OR ANOTHER
STROKE
TO SNEAK UP
ON YOU.
WITHOUT PLAVIX
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.
WITH PLAVIX
TALK TO YOUR DOCTOR ABOUT PLAVIX.
For more information, visit www.plavix.com or call
1-888-355-1152
PROVEN TO HELP PROTECT FROM
ANOTHER HEART ATTACK OR STROKE
© 2006 Bristol-Myers Squibb/Sanofi Pharmaceuticals Partnership.
US.CLO.06.12.002/December 2006 B1-K0263-12-06
sanofi-aventis U.S. LLC
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'(
L E T T E R S
C o n n e c t i n g Yo u t o U s
I am caregiver
to my wife, a three-year
ischemic stroke survivor.
Pam has right-side paralysis,
including drop foot and
aphasia. She manages to walk
on her own with the aid of a
leg brace and cane, although
she’s somewhat unstable.
Her right arm and hand are
completely non-functional.
I regularly search the Internet for new rehab
methodologies or treatments. As such I read “Winds
of Change” (July/August 2006) with a great deal of
interest, especially the references to clinical trials and
the positive results. I have found several Web sites
listing ongoing or upcoming trials, but there is virtually
no contact information and little detail. In many cases
subjects have been selected before the information is
made available.
Is there a place, organization or Web site where she
can be listed as a volunteer for any applicable trials so
that a researcher could get in touch with us?
Walter James, Caregiver • Tallulah, Louisiana
Editor’s Note: We have been unable to find a central
listing for people who want to volunteer for trials.
However, www.stroketrials.org carries a comprehensive
listing of most of the trials involving stroke patients.
In the left-hand column, click “Recovery Trials.”
On a recent visit to the site we found several trials
that were recruiting participants. Trials can also be
found on the National Institutes of Health site, www.
clinicaltrials.gov. Click on “focused search,” then enter
“stroke” in the “disease or condition” line, and enter
“rehabilitation” in the “experimental treatment” line.
You can find more letters to the editor at
strokeassociation.org/strokeconnection.
WE WANT TO HEAR FROM YOU
mail:
c/o Editor-in-Chief
Stroke Connection Magazine
7272 Greenville Ave.
Dallas, TX 75231
Regarding Nancy Phillips’ question
about shoes in the July/August issue: Try buying
shoes for the sport of curling. A pair of curling shoes
includes one slippery shoe, and you can request which
shoe you want slippery. We used to make our own
curling shoes by gluing a piece of thin linoleum onto
the bottom of the shoe. Good luck, hope this helps, I
have the same problem.
Rodger Sparks, Survivor • Canada
My husband Johnny’s severe stroke
three years ago left him with limited use of his right
leg, no use of his right arm, basically speechless and
unable to write or remember his ABCs.
Many times I thought of stopping delivery of
Stroke Connection because all the stories seemed to
contain magical recoveries, then the August issue
finally had realistic letters.
A. Culbertson is right-on about money making
a difference. I’m sure there are many people who
simply can’t afford treatments that would help. I also
believe that where you live makes a difference: We
live in a small, rural community with no close rehab.
He is 58 and I am 56 and must work for insurance
because Medicare is not accepted by many doctors. I
leave him alone a lot, which is scary because he has
a seizure disorder, but caregivers are expensive and
adult day care is 30 minutes away.
I think your magazine should concentrate more on
the reality of most stroke families. If you don’t have
a computer, information is hard to get as most places
you call are closed when I get home from work.
Nancy Phillips should try Dexter or Eastland
shoes. They are made in the U.S. and usually have
leather soles. Jan Neels should really investigate
before having Botox. It didn’t help Johnny and cost
$4,000 a shot.
If anyone can tell me where to get an ankle brace
that doesn’t encompass the whole foot in plastic, I
would love to know about it.
Maxine Bryant, Caregiver • Huntsville, Arkansas
fax: 214-706-5231
e-mail: [email protected]
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.
4
This is a response
to Jan Neels’ question
in the July/August issue about using Botox. My
husband had a stroke nine years ago. It affected his
left side, and he is unable to lower his arm, and his
fingers and toes draw up from spasms. When this
happens, it’s very painful to walk or touch his toes
or fingers. He has been taking Botox injections for
five years; every three months they use five vials
throughout his left side. They say it will take up to
two weeks to see results, but my husband can tell
a difference in only three days on his fingers and a
week on his toes. The bigger muscles take longer. We
seem to get the best results with a neurologist. The
benefit seems to last longer if you exercise during the
three months. This is truly a godsend.
Linda Adkins, Caregiver • Chandler, Arizona
I have had chronic pain for eight
years and have tried every medication I can think of.
Recently my pulmonary specialist thought that taking
Xanax might help.
Well, this medication has been a blessing for me.
It has caused this constant numb tingly feeling to be
almost bearable.
Please keep the magazines coming. It is so
comforting to hear other people’s stories. They seem
to make mine so insignificant. I was never paralyzed
or struck mute, and I can get around using a cane,
mostly because my dear husband does so much for
me. God bless him and all the other caregivers for all
their love and unselfish care.
Mary Elliott, Survivor • Chattanooga, Tennessee
I had a stroke
in May 2004 at age 52.
Fortunately, I was not
paralyzed but I had aphasia
and short-term memory
loss. I have done my best to
overcome these disabilities
and have been successful for
the most part.
In June 2005 I walked
a marathon in Hawaii
to benefit the American Stroke Association. That
accomplishment was the thrill of a lifetime.
Although I continued to exercise and watch my
blood pressure, I started having chest pains while
exercising and walking long distances. I ignored the
pain in the hope it would go away.
I was reading the May/June issue of Stroke
Connection Magazine when I came upon this
headline, “Know the Warning Signs of a Heart Attack”
[reprinted below]. It was a cold dose of reality for me.
I could no longer deny that I was having classic heart
attack symptoms.
I went directly to the emergency room, where they
told me I wasn’t having a heart attack but that I did
need to see a cardiologist. While doing a stress test
in the doctor’s office, I survived atrial fibrillation and
ventricular tachycardia at the same time. Fortunately, I
was in the right place.
Tests showed I had 90 percent blockage in my
right coronary artery and 50 percent blockage in my
left. The doctor recommended emergency quadruple
bypass surgery. At the last minute he put a stent in
one of the arteries so that only three were replaced.
After all that, I am very happy to be alive and grateful
for your magazine.
Larry Miles, Survivor • Salem, Oregon
T h e Wa r n i n g S i g n s o f H e a r t A t t a c k :
• Chest discomfort. Most heart attacks involve
discomfort in the center of the chest that lasts
more than a few minutes, or that goes away and
comes back. It can feel like uncomfortable pressure,
squeezing, fullness or pain.
• Discomfort in other areas of the upper body.
Symptoms can include pain or discomfort in one or
both arms, the back, neck, jaw or stomach.
• Shortness of breath. May occur with or without
chest discomfort.
• Other signs: These may include breaking out in a
cold sweat, nausea or lightheadedness.
If you or someone you’re with has chest discomfort,
especially with one or more of the other signs, don’t wait
longer than a few minutes (no more than 5) before calling
for help. Call 9-1-1 ... Get to a hospital right away.
5
S T R O K E
C o n n e c t i n g Yo u t o t h e Wo r l d
Severe
Sleep
Apnea
Raises
Risk of
Stroke
‘Snoring is the
most important
warning sign for
sleep apnea.’
6
E
lderly people with severe sleep
apnea have more than twice the
risk of ischemic stroke than elderly
people with no or mild apnea,
according to research reported in
Stroke: Journal of the American
Heart Association.
“This study provides more evidence that
severe sleep apnea represents an independent risk
factor for stroke in the elderly population,” said
Roberto Muñoz, M.D., lead author of the study
and a neurologist at the Hospital de Navarra in
Pamplona, Spain.
Sleep apnea is characterized by episodes of
breathing stoppages during sleep. Severe sleep
apnea is emerging as an important risk marker for
ischemic stroke.
Researchers used data from 394 people
(57 percent male, average age 77) who participated
in the Vitoria Sleep Project in Vitoria, a small town
in northern Spain. Researchers monitored patients’
breathing patterns overnight in a sleep study, then
tracked medical events in the patients for six years,
registering 20 ischemic strokes.
People who suffered a stroke were more likely to
be male and have more severe sleep apnea. Those
with severe sleep apnea had a two-and-a-half times
greater risk of suffering a stroke than patients with
no apnea, mild apnea or moderate apnea.
“Sleep apnea is two to three times more common
in the elderly compared to middle-aged people.
However, typical symptoms of sleep apnea, such as
loud snoring or excessive daytime sleepiness, are
less prevalent in the elderly compared to middleaged people,” Dr. Muñoz said.
Researchers suggest apnea treatment be started
if doctors find a high rate of episodes of decreased
breathing or breathing interruption, particularly in
patients with other cardiovascular risk factors.
“Snoring is the most important warning sign for
sleep apnea,” Dr. Muñoz said. “People who live
alone, which is common in the elderly, should be
aware that excessive daytime sleepiness is another
key risk factor.”
S T R O K E
Stroke May Cost
U.S. $2.2 Trillion
by 2050
U
nless Americans do more to lower their risk of
stroke and improve stroke care, the nation will
pay $2.2 trillion over the next 45 years to care
for people who suffer the most common form
of stroke, a new University of Michigan study predicts.
A disproportionate share of the costs will fall upon
African Americans and Latinos/Hispanics because of their
tendency to suffer strokes at younger ages and get lessadequate preventive care than others. In fact, stroke-related
costs among people under age 65 account for about half of
the predicted total, which includes lost wages.
The study, published in the journal Neurology and
funded by the National Institutes of Health, highlights the
importance of efforts to prevent future strokes in all ethnic
groups, but especially in young and middle-aged African
Americans and Latinos/Hispanics.
The study’s authors say the $2.2 trillion estimate is
extremely conservative because it is based on current rates
of the conditions that increase the risk of stroke – such
as diabetes, cardiovascular disease and obesity. Such
conditions are projected to become even more common in
the future.
The $2.2 trillion estimate includes the cost of
ambulances and hospital stays, medications, nursing home
care, at-home care, doctor’s visits and lost earnings for
stroke survivors under age 65 (based on current median
salaries for each ethnic group). Earnings of those over 65
weren’t included.
In all, the study found that the total direct and indirect
costs of stroke in the next 45 years will be $1.52 trillion
for non-Hispanic whites, $313 billion for Latinos/
Hispanics and $379 billion for African Americans. On a
per-capita basis across the whole population, a white
stroke patient’s costs will average just under $16,000,
while the cost for each Latino/Hispanic patient will be just
over $17,000 and the cost for each African-American
patient will be nearly $26,000.
Lipitor Reduces Risk of Recurrent Stroke
atients taking Lipitor® (atorvastatin calcium) who
had a prior stroke reduced their chances of having
another stroke and major coronary event, such
as heart attack, according to a report in The New
England Journal of Medicine. The Stroke Prevention by
Aggressive Reduction in Cholesterol Levels (SPARCL) trial
was the first major study designed to examine the benefits
of lipid-lowering in stroke patients. Up to one in five stroke
survivors has another stroke within five years.
In SPARCL, 4,731 patients who had no history of heart
disease and had experienced a stroke or TIA within six
months before enrolling in the trial were followed for an
average of about five years. Patients had mildly elevated
cholesterol levels, and were treated with either the statin
drug Lipitor (80 mg) or placebo. In the trial, Lipitor was
shown to reduce the risk of an additional stroke by 16
percent and major coronary events, such as heart attack,
cardiac death or resuscitated cardiac arrest, by 35 percent
compared to placebo.
P
8
“This is important information for physicians because
patients who have had a stroke are at much greater risk for
suffering another one, yet treatment options to reduce their
risk are limited,” said Dr. Michael Welch, SPARCL investigator,
neurologist and president of Rosalind Franklin University of
Medicine & Science. “Patients taking Lipitor in this trial showed
a significant reduction in stroke and coronary events. This is
impressive when you consider that a majority of patients in
the trial were already being treated with medications such as
blood-thinning and blood pressure-lowering medications that
are often given to reduce stroke risk.”
“Stroke is a fatal or debilitating condition that has significant
impact on patients and their families, and reducing that risk is a
key priority in cardiovascular medicine,” said Dr. John LaRosa,
president and professor of medicine, SUNY Downstate Medical
Center. “These results underscore the potential benefit of
intensive Lipitor therapy for stroke patients who may be at high
risk for an additional stroke even in the absence of previous
heart disease.”
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S T R O K E
You’re the Cure for Secondhand Smoke
U.S. Surgeon General Dr. Richard Carmona issued a report this past summer
entitled “The Health Consequences of Involuntary Exposure to Tobacco Smoke.”
As he unveiled the research, he declared: “The debate is over. The science is
clear. Secondhand smoke is not a mere annoyance but a serious health hazard.”
Smoking has long been known to nearly double a person’s risk for the most
common type of stroke. The Surgeon General’s report has now established that
there is also no safe amount of secondhand smoke exposure. For the first time,
the report addressed cardiovascular diseases and found that secondhand smoke
may increase someone’s risk of stroke.
The American Heart Association and its division, the American Stroke
Association, have been urging elected leaders to enact smoke-free policies in all
communities to eliminate secondhand smoke from the workplace, restaurants,
bars and other public places. Everyone has the right to breathe clean air, but
more than 126 million non-smokers in the U.S. continue to be exposed to
secondhand smoke. This includes hospitality workers who are currently forced
to inhale secondhand smoke while trying to earn a living. To take action at the
local, state or federal level, join You’re the Cure and advocate for policy change.
Visit www.americanheart.org/yourethecure.
For more information, visit www.americanheart.org/secondhandsmoke.
10
Putting your house in order
means more than cleaning it.
Please send to:
American Stroke Association
Planned Giving Department
7272 Greenville Avenue
Dallas, TX 75231-4596
My sister would always leave
her house spic-and-span
whenever she went away on
a trip – “just in case”
something happened.
When she died, the house
was spotless, but her estate
was a mess.
We couldn’t even find her will,
to find out what her wishes were.
Estate planning is critical to your own and
your family’s future. We urge you to send
for our free brochure Planning for Women.
The American Stroke Association hopes
you will find this information helpful in
formulating ideas for your estate plan.
You can also call toll-free 888-227-5242,
visit us at americanheart.org/plannedgiving
or e-mail us at [email protected].
c
Please send me the free booklet Planning for
Women. (CDA)
c
Please put me in touch with an American Stroke
Association Representative. (CDD)
c
I am considering a gift to the American Stroke
Association through my estate plan. (CDC)
c
I have already included the American Stroke
Association in my will/estate plan. (CDB)
Name
Address
City
State
ZIP
Phone
Birthdate
E-mail
07GPGDA
IAD SC 01/07
©2006, American Heart Association.
10/06 KC0080
PARROT
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The 1st to offer
In our 3rd Year!
Thank you,
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Aphasia
70 different computer treatment programs designed to help recover
Speech, Reasoning, Memory, Vocabulary and Grammar
after stroke.
Our Aphasia Internet Subscription is our most comprehensive and
economical solution.
$24.95 per month
No long-term commitment
Call 800-727-7681 for a FREE TRIAL
www.parrotsoftware.com
11
READERS
C o n n e c t i n g Yo u t o O t h e r s
Learning Lessons
I
t will be a major feat if I complete
this. It’s as if there’s a committee
in my head, and each member
is telling me what to write! And
typing is another matter entirely: I
used to type 90 words/minute, but
since my stroke I have to search for each
letter. My brother Richard does all my
typing. But no one else can tell my story,
so here goes.
PRE-STROKE
Jan Cleveland
‘The things I’m
learning are
life’s important
mysteries, and
I’ve got a lot
more to learn!’
12
Before my stroke I enjoyed
rollerblading with my three dogs regularly,
playing tennis, snow skiing, scuba
diving, running, riding motorcycles and
participating in church.
For 12 years I did Web design for an oil
company. Feeling the need for a change, I
enrolled in barber college. When I finished
school a year later, I was waiting to take
my State Board exams when I got my next
assignment, an opportunity to get to know
God more intimately. You might say it was
a medical altar call.
STROKE
I had an ischemic stroke in March 2003.
The doctors didn’t give my family much
hope for my recovery. They also said I had
a mass on my heart.
I know this stroke didn’t catch God by
surprise. Knowing He allowed the stroke
gave me something to work through.
Was He mad at me? I knew that wasn’t
His nature! I took time in the hospital to
grieve what I had lost, but since that time I
haven’t looked back.
When the doctors did surgery, they
didn’t find a mass. I have no doubt Dr. God
had already operated on me.
I can’t say enough about my family
or the unsung heroes in my church who
faithfully cleaned my room, the bathroom
and took time to minister to me. I could not
have made it without their help.
My right arm and leg are on extended
vacations. They served me so well for 58
years. We sure had some good times! I
wear a brace on my right leg.
POST-STROKE
At first I was wheelchair-bound, then
walker-bound, and now I’m getting around
pretty well. I have discovered time after time
that God gave His angels charge over me.
I drive, grocery shop, shop-shop, cook
and feed my dogs twice a day. I live with
my 93-year-old mother. We are quite a
team! She lends an extra arm when I need
one. We are both stubborn and that gets
a little hairy sometimes. It’s been a lifechanging experience for both of us.
About a year ago I was helping my
brother bathe one of my dogs. She got
startled, and because I was holding her by
her collar, my hip was broken. That was
a setback! I’m glad to say that my hip is
doing fine.
For a year I’ve attended a weekly
aphasia support group. Being there reminds
me I have so much to be thankful for.
Many folks have trouble speaking at all.
I’d like for people to know my intellect
is still intact, but expressing myself creates
a short circuit. We sure take things like
speaking for granted. I never knew it took
so much effort to construct a sentence.
I also attend a stroke support group
every month. It is so neat being around
people who you can learn from, like how
to clean your nails with one hand using a
toothpick.
My new life is full of challenges and
obstacles. The occasional curb still trips me
up, and my wig goes flying, but if I had the
opportunity to go back to my rollerblades, I
wouldn’t. The things I’m learning are life’s
important mysteries, and I’ve got a lot
more to learn!
Jan Cleveland, Survivor
Dallas, Texas
New Directions
M
y love for music started at age 5
when I began playing the violin. At
age 12, I started playing the trumpet.
My dream was to play professionally
in a band. By age 19 I was doing
that. Playing in a dance band was
fun, but I didn’t like the hours.
When my son Jimmy was killed in an automobile
accident at age 17, I vowed to teach music to kids. With
my wife Marcia’s help, I went back to college at age 39
and four years later earned a teaching credential in music
education. I taught music in junior high and high school
in San Jose, Calif., for several years. I also taught in
Texas for a short time before I burned out.
After that, Marcia and I bought two retail businesses,
and a few years later I had a heart attack. We sold the
businesses, and about a year later I joined the staff of
Family Life Ministries, a division of Campus Crusade for
Christ, in Little Rock, Ark. I worked in the development
Richard Goodrich
department. One of my responsibilities was to develop
relationships with the ministry’s donors. For seven years
I was at home there, praying with people all over the
country by telephone.
In fact, I was at my desk there when I had a massive
stroke six years ago. For eight days I remained in a
coma in the ICU, where I was given a 50/50 chance
of survival. With God and Marcia at my side, and the
many prayers of my co-workers and contacts across the
country, I began to heal. The stroke left me blind in my
‘I thank God for my ability to
sketch and paint. You can do
anything with God’s help and an
encouraging wife like mine.’
left eye and with little use of my right hand and arm – I
was right-handed for 69 years. The stroke’s most painful
effect was not being able to speak. Because of my
aphasia, I can no longer tell Marcia that I love her in my
own voice. Fortunately, I am able to hear and understand
just fine. I was once an avid reader, but now I’m only
able to read newspaper headlines and short paragraphs.
My biggest blessing is that I have a new “voice.” It is
an electronic communication aid called “Pathfinder.” It
speaks what I program it to say on the keyboard made of
icons, the alphabet and punctuation. It also has the ability
to predict words I’m trying to spell based on words I use
often. Marcia says it’s a lifesaver.
I always had a desire to have a model train layout, so
I built one – even with sight in only one eye and a right
arm and hand that don’t work so well. The owner of a
hobby shop built the 4'x8' table and laid the HO scale
track and wiring for me. Then I designed and built the
landscaping, including mountains and a tunnel. Using
kits, I made all the buildings. There’s also a cattle ranch.
The town was just like where I grew up in California.
I have always had a desire to develop my artistic
ability to draw and paint. Two years ago, I started
sketching with chalk and later with pencil. Now I sketch
with colored pens. My favorite subjects are old barns and
lighthouses. I entered my first show this year and sold
two of my artworks. I thank God for my ability to sketch
and paint.
You can do anything with God’s help and an
encouraging wife like mine.
Richard Goodrich, Survivor
Little Rock, Arkansas
13
READERS
C o n n e c t i n g Yo u t o O t h e r s
Rock of
Gibraltar
‘Would I
like my old
life back?
Certainly, but
I am thankful
for what I
have regained,
mainly with
the help and
support of my
husband.’
I
am a four-year
stroke survivor.
We have a 33-foot
motor home that
we take to Yuma,
Ariz., each winter,
and the first week of March
2002 I was organizing it for
Joan and Joe Goss
our return home. I awoke
early one morning with an excruciating headache and woke my husband Joe because I
could not find the aspirin. He realized that something was seriously wrong because I was
so confused. He took me to the emergency room, and a female neurologist immediately
ordered a CT scan and shortly afterwards told me, “You have a brain tumor. Would you
like to see?” I said, “Absolutely!”
As we walked to the imaging unit, she said she felt sure it was a meningioma (a
benign, slow-growing tumor that grows on the membranes that cover and protect
the brain and spinal cord). After further tests, she referred me to the Mayo Clinics in
Scottsdale and Phoenix.
The tumor was removed the following week, and when I was finally aware of my
surroundings, I found that I had had a stroke instead. I was told I had spent several days
in intensive care and had received two units of blood. The most upsetting thing was that
I had double vision and no control of my left side. After two weeks I was allowed to fly
home to Utah, where I spent two more weeks in the hospital. The worst advice I received
was not to do anything about the double vision or change my glasses for at least six
months because “you’ll get used to it.”
I have always been a voracious reader, and I was trying to read with one eye, so I gave
them a rather explicit answer: “Bull….! In six months I’ll be insane!” So as soon as I was
released from the hospital, we went to our eye doctor, who put prisms on my lenses. Now
I’m reading two books a week again.
Now, let me tell you the good things in my life: My tumor was benign, my face does
not sag, and my speech has not been affected. Joe says the only problem with my speech
is that I never stop talking. I talk to everyone I meet wherever I go. I feel that my brain
function is as sharp as ever, and I can walk with a cane or walker – when I feel brave I
can walk without either. I can bathe and dress myself, and I can drive my car.
Would I like my old life back? Certainly, but I am thankful for what I have regained,
mainly with the help and support of my husband, who still takes me to therapy three days
a week. Without him I might have quit several times. He is my Rock of Gibraltar.
Joan Goss, Survivor
Ogden, Utah
14
The Kitchen Sink
I
’ll admit it’s scary. We once had our sink back up so badly that
garbage was coming up in our bathtub – bad stuff, nasty stuff.
My wife Pearl and I always run hot water after using the garbage
disposal, and we never put lettuce or bones down the disposal. Once
in a while we’ll put crushed ice or lemon peels in the disposal to keep
it from getting too smelly. We do everything we can to keep the sink
from clogging up, but it still happens. It’s a real bother. We put all the
precautions in place, and it still happens.
The clogging of the kitchen sink is a lot like a stroke. No one would
think of spending their time sitting around the sink listening for signs of
trouble, or bringing the TV into the kitchen along with the entertainment
center. We don’t put the sink in the center of our lives and forget the real
life we’re supposed to be living. And yet, after a stroke, either our own or
one a loved one experiences, we want to rally around the stroke, make it
the center of our life and put the life we should be living on hold.
Pearl had to teach me to replace fear with caution, to put all the
precautions in place and then just live our lives. Pearl has had two strokes,
so she can say that. So I did as she said. Now stroke is only a part of our
lives and not the center. Yes, it can still be scary. But only if I let it.
Dan Rodriguez, Caregiver
Dallas, Texas
Pearl and Dan Rodriguez
Heroes
O
n December 1, 1998, I was a unit clerk at the
Oklahoma University Hospital. I was working
16-hour shifts, 40 hours in a weekend. About
7 p.m. I started having terrible pain in the right
side of my head. I knew something was wrong and asked
the charge nurse if I could go to the ER. Unfortunately we
had a code blue right then, and I was told to stay at my desk.
During that time I could not think, remember, talk
or swallow. James, my husband, showed up and knew
something was wrong, but it seemed to have passed after 20
minutes. The next day I woke up unable to talk, walk or see
out of my right eye. My husband said the right side of my
face drooped, and called the doctor. At the hospital, I had
all kinds of tests, including a CT scan and an MRI, which
showed nothing. Fortunately, the swallowing test proved that
I had had a stroke, and I was sent home… without rehab. I
was 37 years old.
For almost two years my family was my rehab. My
oldest son, Bryan, taught me to write and read; my second
son, Jeffery, taught me to speak and count; and my daughter,
Alisha, taught me to eat. James did my therapy and
everything else.
In July 2000, I had another stroke, and this time I was
sent to rehab for a month. It was hell, but we made it
through. My husband James is my hero, and I tell him so.
Most people would have quit, but not him.
The last five years have not been easy: Most of my
friends are gone; I have memory problems – people see me
and call me by name, but I don’t even know them. I have to
be careful what I eat because of my swallowing problem. I
am on disability because I can’t work, and I miss that. I do
a lot of sewing, embroidery, cross-stitch and crochet. My
grandbabies keep me going. We have seven and another one
on the way. And I do a lot of praying.
I am writing because I saw Dick Clark on his New Year’s
Eve show, ringing in 2006. I was so moved by his strength
and endurance to get in front of the whole world and show
his stuff. I have watched him my whole life, and I have
never been more proud of someone. He showed people
everywhere that just because you’ve been knocked down
doesn’t mean you have to stay down. I would like to tell him
that he is my second hero!
Teresa Switzer, Survivor
Oklahoma City, Oklahoma
15
the
High Road with
Gary Hyink
Gary Hyink’s life journey
has been all over the
map, ranging from the
proverbial “nine miles
of bad road” to his
more recent “highway
to heaven.” Along the
way he’s made God his
tour guide and traveling
companion and has taken
biblical scriptures as his
roadmap.
Deborah and Gary Hyink
He has needed the
help to negotiate some serious road blocks and detours
along the way.
“My stroke tossed me into poverty like an uncaring
lover who rejects you and totally devastates your
emotional world,” Gary wrote recently. “Not only was I
impoverished by $42,000 in medical bills, but I became
handicapped. I lost the use of my left arm and had brain
damage that left me confused and epileptic.
“I became homeless. I was forced to sell my blood
for money, eat from food lines to survive, sleep at the
Salvation Army and seek medical care from the poor
people’s hospital.”
“I would call myself brain-damaged but intelligent,”
he says. Several “A” grades he earned in college courses
he has taken for credit confirm his self-evaluation.
However, the stress of trying to take more than one
course at a time triggered more seizures and ended his
work toward a degree.
16
by Jim Batts
Gary, an Air Force veteran, was 26 when he had the
stroke. He’s 45 now. His journey has led him from tiny
Ashford, Alabama, to Birmingham, where he met his
future wife at a church. Deborah calls him her “trophy
husband,” a title he proudly has embossed on one of his
credit cards.
They live in New York City, where she is an
assistant professor of nephrology at Mount Sinai School
of Medicine.
“I’ve had many positive and negative experiences,
because of my stroke,” Gary says. In his walk by faith he
has chosen to emphasize the positive by writing poems
to encourage others in difficult circumstances.
“The Bible says in the book of Proverbs that ‘poverty
will come upon you like a bandit and scarcity like an
armed man,’” he said. “Well, that’s what happened to me
and led me to write a poem called ‘Homeless.’”
Homeless
My world fell apart the other day.
A personal tragedy tore my world away.
I was once so comfortable and secure.
My life is now a constant blur.
Family times and days well spent
Are now replaced by cold, hard cement.
I never meant for it to be this way,
A personal tragedy tore my world away.
It’s kind of you to help me when you do.
Maybe you realize it could happen to you.
“Being homeless was a painful
blessing,” Gary said. “I met many
wonderful, caring people I never
would have met otherwise. That’s how
I met my wife. We met in a singles’
class at Briarwood Presbyterian Church
in Birmingham. We celebrated our
11th-year wedding anniversary
March 11, 2006.
“I see people every day on the street
in the same situation I was in – homeless
and trying to survive as best as they can.
I read that, ‘The Lord sends poverty and
wealth; He humbles and He exalts. He
raises the poor from the dust and lifts the
needy from the ash heap.’ It was worth
all I went through to meet all the friends
I made along the way.”
Gary says the poor and needy often
aren’t a priority in our society. “The
shame of it is that the homeless and poor
are people just like you and me,” he said.
“In today’s fast-paced world, it could happen to you tomorrow.
Please think about this when you see someone in need. He or she
probably didn’t choose to be that way.”
Gary wrote another poem in 1980 (Mankind’s Prayer, at right)
when he was in the Air Force and stationed in the Philippines. “A
friend, Sharon, wrote me and touched my heart when she shared
some personal struggles she was going through,” he said. He saw
her struggles on a larger scale.
People often tell Gary this poem is well-crafted, but depressing.
“I think they miss the point,” Gary says. “One of the desires of our
heart is to love and be loved. Naturally we look to other people to
fulfill this desire. They often fail to meet our needs, and this has led
to countless personal tragedies.
“I believe that only God can perfectly fulfill this desire he has
placed in us. I found from personal experience that he is always
available to us in prayer. He’ll listen and answer them. He answered
mine in mighty ways and continues to do so.” Gratitude is the
appropriate response, Gary said, which led him to the third poem in
his trilogy (Thank You Lord, at right).
‘Life is hard,’
Gary says.‘Hang in
there and
have faith.’
Mankind’s Prayer
So close in thought I wish to be
With someone who can hear
My heart’s sad cry, its silent weep,
Caused from despair, I fear.
For life is often so hard to take,
It deals such a painful blow,
Then no one is there with whom to share,
No one who wants to know.
For everyone has their problems too,
Enough gloom and despair of their own.
They have no time for me to share
My thoughts I so want known.
I pray the day will quickly come,
The day when I will see
The person who will always listen,
And with all their heart love me.
Thank You Lord
Thank you, Lord, for your grace to me.
Please help me in all that I do.
Help me be who you would have me be,
so on my life’s purpose I may start.
I need your guidance every day.
Life is often so hard for me.
I often stumble or go the wrong way.
Sometimes I’m blind and do not see, or
speak the words you would have me say.
Thank you Lord for your grace to me.
Please help me in all that I do.
Help me be who you would have me be,
so I may praise you for all eternity.
17
F E AT U R E
Been
There,
Done
That.
Sharing Your Wealth
by J o n C a s we l l
ealing with the unknown is
never easy, but when you’ve
lost the use of some part of
your body or your speech or
your brain, the unknown can
get large and scary. That’s
when you’d like to meet
somebody who’s “been there and done that.”
Of course, that’s the whole idea behind stroke support
groups, but joining a support group often happens
months after rehab. Given the opportunity, survivors
can benefit significantly from support a lot earlier in the
recovery process.
18
That was physiatrist Dr. Cynthia Bennett’s thinking
when she put together the Rehab Buddies program
at Penrose-St. Francis Rehabilitation Center (PSF) in
Colorado Springs, Colo. “During my training at another
hospital, I noticed that there was a support group for
spinal cord injury outpatients, but there was nothing for
inpatients, and I thought patients needed that kind of
support during the acute phase, too,” she said. “When I
came to PSF, that concept was in the back of my mind.
We have quite a few people here who have had lifechanging illnesses or accidents.
“I started asking patients who had successfully
recovered to visit those patients. I asked former stroke
patients to visit current stroke patients, and former spinal
cord patients to visit current spinal cord patients. The
Rehab Buddies help current patients know that someone
understands what they are going through and survived it
and made a new life.”
Parker Finch, a stroke patient at the San Diego
Rehabilitation Institute (SDRI) at Alvarado Hospital in
California, had had a similar impulse during his recovery.
While he was still in rehab, he told his therapists that
one day he was going to come back and talk to patients
himself because he thought it would have been valuable
for him.
A phone call to the local chapter of the American
Stroke Association led to contact with a survivor in
Las Vegas who had developed a survivor-to-survivor
visiting program that had gone dormant. Working with
Parker, Mary Williams, a recreational therapist and Laura
Nelson, an occupational therapist, put together a 30-hour
training program.
“We had different professionals come in and
present,” Mary Williams said. “A neurologist talked
about the medical part. A speech therapist talked about
the cognitive aspects, a social worker provided training
on listening skills. Another social worker discussed
depression and suicide. This was in addition to the
regular training in HIPAA and hospital rules that all our
volunteers receive.
“After they went through all that,” she said, “we did a
lot of role-playing exercises about what the visit should
look like.”
After all the training was over, some of the survivors
decided that they weren’t comfortable doing it and
dropped out. Unlike PSF’s Rehab Buddies, SDRI’s peer
visitor program is only for stroke patients.
“I think the most important part of the training
was the listening skills,” said Finch, a retired Navy
“The Rehab Buddies help
current patients know that
someone understands
what they are going
through and survived it and
made a new life.”
— Dr. Cynthia Bennett
commander. “It was good for me because I tend to be
impulsive and talkative, but the key is learning to listen
and get the patients to tell their stories.”
“As stroke survivors we feel imminently qualified
to talk to stroke patients,” said Jacqueline Henkel, age
72 and a visitor at SDRI. “I always advise the patients
I see that strict adherence to therapy sessions is key to
recovery. I also tell them that a positive attitude and
a sense of humor is equally important. I have often
thought, ‘Survival is easy, recovery is another matter.’”
Burley Vandergriff, age 75 and a retired fighter pilot,
was one of the original rehab buddies at PSF. Burley had
a stroke after his second quadruple bypass surgery three
years ago. He, too, received hospital training regarding
privacy and hospital rules.
Stroke survivor Parker Finch sharing with survivor Gertrude McMarion
“I’ve had 16 or 17 buddies,” he said. “I start with
them while they’re still in rehab, and then I keep track
of them when they go home or to another facility. I still
have contact with all of them. In fact, I’ve recruited four
of them to be rehab buddies themselves.”
Like Burley, Cathy Mundy, age 62, has been part
of the Rehab Buddies program since it was started in
November 2004. After her stroke she was in the hospital
for over two months and has been in therapy ever since.
She has regained use of her right side, though she had to
give up her job as a research librarian.
(continued)
19
F E AT U R E
“Our visits aren’t scripted; we simply
relate our stroke experience and talk
about the importance of physical,
occupational and speech therapy
as well as the impact of a positive
attitude in recovery.”
— Dick Goranson
Peer visitor Dick Goranson visits with Hazel Erdmann
“All the training for Rehab Buddies takes about three
months,” Cathy said. “There’s hospital training – HIPAA
and patient safety and fire safety – which we’re tested
on. There’s also a tuberculosis test. Then we learned
active listening and did role playing, and new buddies
shadow experienced buddies.
“We learn good ways to say things and things never
to say. For example, you never say, ‘I know you’ll get
better’ because you don’t know that. One of my buddies
has had a very hard time of it and won’t ever go home.
You learn to focus on them, and when we talk, we only
talk about our experience. And we never talk about
religion. If the patient wants to talk about it, that’s
fine, but I never talk about it. We also make ourselves
available to the families.”
Dick Goranson, age 69, of Kennewick, Washington,
also wanted to help stroke survivors after his stroke
four years ago. He started
his own peer visiting team
and called it the After the
Stroke Advocacy (ATSA)
team at Kaldec Hospital
in Richmond, Wash. “Our
ATSA team functions
differently than a traditional
stroke support group,”
Dick said. “We work with
patients while they’re in
intermediate care or in rehab
in the hospital. Our visits
Rehab buddy Burley Vandergriff
20
aren’t scripted; we simply relate our stroke experience
and talk about the importance of physical, occupational
and speech therapy, as well as the impact of a positive
attitude in recovery. We never say ‘stroke victim.’
Victims are deceased; we use the term ‘stroke survivor.’”
The ATSA team consists of four visitors who went
through hospital volunteer training.
Each member of the three groups has hospital
identification that allows them to visit the hospital at
other than visiting hours. And in each case the hospitals
are quite supportive of the programs. “I didn’t have to do
much selling,” Dick said. “I went to the hospital board and
the rehab nurses, and they welcomed it with open arms.”
At PSF, the response was much the same when
Dr. Bennett proposed Rehab Buddies. “The board
was enthusiastic. They understood how extensive our
training was.”
Talking to someone who has been through what they
are going through helps stroke patients in a couple of
ways. Not only do they get to see someone who has
recovered, but they get to vent their feelings to someone
who really understands and isn’t “blowing sunshine in
their face,” as Burley Vandergriff put it.
Peer visits also
provide another avenue
for communication
between patients and
the healthcare team.
“Patients say things to
their buddies that they
won’t say to any of
us,” said Dr. Bennett.
“For example, they
may tell the buddy that
they wish they had not
survived. A regular
volunteer or even a
family member, might
start to offer advice or
say, ‘Oh, it’s not that
bad, don’t worry, you’ll
walk out of here.’
Peer visitor Jacqueline Henkel
ShareGivers™ – Making a Contribution
ecause a stroke can be
devastating, survivors and
family caregivers have a need
for someone to understand
their feelings of loss. They also have
a great need for someone to give
them answers to practical daily living
questions such as these:
B
• Why am I so sad and emotional?
• When will I stop feeling like a
burden to my family?
• Will I ever get over the grief and
anger I feel?
• And what about the emptiness?
The clumsiness? The forgetfulness?
ShareGivers can help meet that need.
The purpose of the ShareGivers peer
visitor program is to provide hope and
encouragement to stroke families while
educating stroke families about what has
happened to them. ShareGivers makes
it possible for the American Stroke
Association and its community partners
to help families answer those questions
and overcome the many challenges
brought on by a stroke.
A peer visitor who has personally
experienced stroke and completed the
ShareGivers training course is uniquely
qualified to understand a new survivor’s
concerns, frustrations and fears. The
program teaches special listening skills
and trains visitors to offer encouragement
based on their perspective as a fellow
survivor or caregiver.
After mastering the use of these
skills and others taught in training,
peer visitors are prepared
to visit at community
hospitals, rehabilitation
centers, nursing homes and
other facilities. Receiving
information from others who
have experienced a stroke
holds special value for new
stroke families.
ShareGivers is really two
programs in one.
The first eight classes
of the 12-week course
address the needs of
stroke families in general.
ATSA volunteer Russ Wodehouse visits with
They are a stand-alone
survivor Earlene Johnson
stroke education course
that includes information about the
visits made by volunteer peer visitors.
causes and consequences of a stroke,
Completion of all 12 classes prepares
resulting disabilities and the effect of
visitors to become ambassadors for
these disabilities on a person’s physical
stroke family education and support and
and mental health, as well as lifestyle and
provides a unique and extremely valuable
self-esteem. The material is intended to
service to others.
increase knowledge about stroke and,
With the tools provided in the
at the same time, decrease anxiety,
ShareGivers kit, local program sponsors
loneliness and isolation. The psychosocial can help survivors gain a better
aspects of a stroke are also covered.
understanding about stroke, self-care
Issues such as stress, emotional upheaval, strategies they can use to help in their
self-esteem and intimacy are addressed.
rehabilitation and how to help prevent
The last four ShareGivers classes
another stroke. The ShareGivers training
prepare stroke survivors and caregivers
course is a structured group education
to serve as volunteer peer visitors in
program for survivors, caregivers, family
their community. This part of the training
members and peer-visitor candidates.
course focuses on teaching peer visitors
The course is facilitated by volunteers
to listen, share and learn together with
who are healthcare professionals.
the survivors and caregivers they visit.
For further information or to
Active listening skills are at the center
order a ShareGivers training course,
of all four classes, since listening is the
call 1-888-478-7653 or visit www.
primary ingredient in all the successful
StrokeAssociation.org/sharegivers.
“Buddies are trained not to give false hope or medical
advice. We train them to share information with the
physician or case manager if they are concerned. They
tell us if someone is depressed, for instance. Patients
don’t always feel they can talk to doctors; they’re more
comfortable sharing things with a buddy.”
Cathy Mundy agreed. “My buddies and I can talk
about very personal things, like bladder control. They
want to know what I’ve tried that worked. I think this is
a really valuable role for us to play.”
Both the SDRI peer visitors and the PSF Rehab
Buddies have monthly meetings where they discuss
the patients they worked with the previous month. Of
course, no names or medical information are shared.
Said Parker Finch from SDRI, “At the monthly meetings
we recap our visits from that month, and that is really
helpful because it’s a lessons-learned session: Here are
the mistakes, and here’s what we did right. It’s a valuable
learning tool. The meetings also encourage a kind of
team spirit.”
“We review the cases, and anything that other visitors
can learn from is shared,” said Mary Williams, who
coordinates the program at SDRI and leads the recap
meetings. “For instance, communicating with a patient
who has aphasia. It’s important for peer visitors to learn
how to do that. The visitors also continue to develop
(continued)
21
F E AT U R E
“We learn good ways to say things
and things never to say. For example,
you never say, ‘I know you’ll get better’
because you don’t know that.”
— Cathy Mundy
Rehab buddy Cathy Mundy, left, sharing with Betty Puckett
their stroke expertise, and the meetings help them deliver
their information better and better.”
“We meet every month and talk on the phone
regularly,” said Cathy Mundy from PSF, “but we don’t
really socialize, though we’re all pretty good friends. We
like each other and we share a lot.”
“Parker takes the tough-love approach with the
patients he visits,” Mary Williams said. “When he talks
to them about doing therapy, they listen. I can say the
same things, but the patients don’t take it as well.”
“I tell them to do things for themselves,” Parker said.
“Dependency is a dangerous trend. People don’t gain
anything by having things done for them that they can do
themselves.”
Patients receiving these visits seem very
appreciative. “Burley Vandergriff is my man,” said
Mike Crimble, who had a stroke in November 2005.
“He visited me in about the second week of rehab, and
we matched lies for about an hour, swapped sea stories.
He visited about every two weeks.
“I know there are guys this stroke thing really tears
up, especially the ones who can’t talk. It just devastates
them. But I know someone like Burley just showing up
22
makes you feel better. There are just things you can’t
tell the staff people because you just can’t explain it to
someone who hasn’t been there.”
“My rehab buddy was Cathy Mundy and she was
wonderful,” said Betty Puckett, who had a stroke last
June at age 73. “It was always encouraging to me
because she’d been there. She had suffered with slow
return of function, too. So many times you think you’re
the only one.
“I thought I held the record for days in rehab, but then
I realized she’d been in longer than me. It was refreshing
to talk to someone who understood. They can support
you in a way that nobody else can.”
Birdie Royal, age 62, is caregiver to her mother,
Mickey Bohnet, age 83. She had a stroke almost 10 years
ago. As her mother became increasingly difficult to deal
with, SDRI put her in touch with Richard and Carol
Hoyt, a husband and wife, stroke survivor and caregiver
peer visiting team. “Their counseling has been invaluable
to me,” Birdie said. “They advised me to step back and
not take it personally.
“Carol has been a nurse for 30 years, and she helped
me see that Mother is beginning to have dementia and
that she most likely won’t get better. They said it was a
role reversal, that I have to treat Mom like you’d treat a
stubborn child, firm but compassionate.
“When I was really down recently, Richard shared
a great analogy with me: What does the stewardess say
when she’s giving instructions about the oxygen masks?
She says put it on yourself first before helping someone
else, even your child. I know it’s true, if I don’t take care
Survivor Mickey Bohnet, left, with daughter and caregiver Birdie Royal
of myself, then I can’t take
care of Mom. Their counsel
has really helped.”
“Most of our patients are
overwhelmed by how their
lives have changed,” said Dr.
Bennett of PSF. “Their rehab
buddies allow them to look
into the future. They begin
to realize, ‘Yes, my life has
changed, but lives change. It
may be different than what
I expected, but it’s still my
life and I’ll get through it.’
“It’s also incredibly
Cathy Mundy
beneficial for the buddy
because it gives them a new purpose, a purpose that
would not have occurred without their life-changing
event. That allows them to make the most of it. I don’t
know who benefits more; getting and receiving are so
intertwined. It’s very exciting to watch.
“I have a photograph of our first buddy visit. The
buddy is sitting on the window sill, and the patient,
who’d had a severe, life-altering stroke, is riveted on
him. They were just two guys sitting around talking. That
is what it is all about, people talking. I can’t connect like
that no matter how much time I spend with my patients.”
“If you do not have a peer visitor program at your
hospital,” survivor Dick Goranson said, “I urge you to
contact the hospital’s volunteer coordinator and start
one. You have experienced stroke recovery, which
means you have a wealth of knowledge. Consider
sharing your wealth with others who could really
benefit from what you have learned.”
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If so, you may be eligible to participate in this interesting
clinical research trial! Researchers at the Mayo Clinic are
looking for additional families to participate in the Siblings
With Ischemic Stroke Study (SWISS). SWISS is a National
Institutes of Health funded clinical study to discover inherited
risk factors for stroke. There are nearly 50 centers enrolling participants across North America. To learn more about
SWISS or to find a center near you to participate...
Please contact Alexa Richie
[email protected]
More information is also
available on the NIH site
XXXDMJOJDBMUSJBMTHPW
keywords ‘Sibling and Stroke’.
23
How To Beat
a Stroke
by Laura Wisner, Survivor
Conyers, Georgia
Laura Wisner, left, with her sister and caregiver Jane
hen I awoke on the first Friday in May 2001,
I felt something was wrong. I sat on the side of
my bed and gave serious thought to what was up
and what was down. As I stood and started toward
the bathroom, I was so dizzy I wasn’t sure whether
I was standing erect or not. I didn’t turn loose of one
wall until my hand was touching another wall.
Slowly I made my way to my bathroom and there held onto the vanity
for dear life. When I reached the mirror I looked at my reflection and saw
the right side of my mouth drooping. With a distinct slur I said, “Oh my
God, I’ve had a stroke.”
Things that happen at times like these are not funny at the time, but
they can seem hilarious in retrospect. I usually splash water on my face to
wake up, but that morning it went over my shoulder and onto the floor.
I don’t know how I fixed my daily medicine, but I did. The very
fact that I’m still living is proof I did it correctly. Somehow I got my
housecoat on and shuffled to the kitchen where my sister Jane was fixing
breakfast.
“Hello, kiddo, how are you …” That’s as far as she got before she saw
my face. I told her I was so dizzy I couldn’t tell up from down and asked
24
her to please snap my housecoat because I couldn’t. She
healthcare aide came and bathed me thoroughly, so
snapped me up and told me to rest in my chair while she between pan and tub I was squeaky clean. Dressing took
finished getting breakfast.
stamina. Tying my shoes was very slow.
“Maybe your head will be clearer,” she said, but we
Two weeks after the stroke, therapists started coming
both knew it wouldn’t. When everything was ready she
to our home. For 10 weeks, three times a week, I had a
asked if I was feeling better, and I told her I thought
physical therapist helping me regain control of my right
I’d had a stroke. She agreed and said she would call the
side. She designed a program for me that wasn’t too
doctor as soon as her office opened.
severe but worked all my muscles. I even used weights.
During breakfast I had difficulty swallowing. I
At the same time, my speech therapist started to
couldn’t handle my spoon and gagged on my coffee. I
loosen my tongue. She was a jewel. She also had writing
was slurring so badly that Jane couldn’t understand me
for me to do since it’s all tied together. I quickly realized
unless I spoke slowly. After breakfast I sat in my recliner that I would have to relearn how to write. I’m sure I
and rested.
looked like a second grader, tongue sticking out and all.
That’s when I discovered that I couldn’t raise my foot My printing is almost back to normal, but my cursive is
and Jane had to help me. By that point I was panicking.
still terrible, though I keep working.
I started crying and couldn’t stop: My mother had a
You need to use a lot of different things fighting for
massive stroke on a Saturday evening and died by 9
your recovery – and it is a fight. Here’s what worked
o’clock Sunday morning. I had stayed with her at the
for me:
hospital and watched as she slipped away.
1. It has to come from within. YOU have to WANT
Twice that May morning I slipped a little and it
to make the effort. No one can do it for you. YOU
frightened me so. I thought I would be like Mother
have to do it.
and continually slip. Thank God those little slips were
2. You need a sense of humor because you are going
all I had.
to do things that make no sense at all. The first
Jane took me to the emergency room per doctor’s
reaction of most people to these little “gems” is
instructions. After a thorough exam, they sent me home.
to laugh, and if you don’t laugh first, you’ll get
That was Friday, and I was to see my doctor on Monday,
your feelings hurt. The quicker you can laugh at
so I just rested over the weekend.
yourself, the better off you’ll be.
On Monday, my physician, Dr. Satterfield, examined
me and sent me to a neurologist. He tested me and
3. Don’t be afraid to ask your doctor for help in your
checked my reports and told me I’d had a stroke. I just
fight. I had a genuine problem with depression.
looked at him, so he asked me if I understood what he’d
My doctor gave me Sarafem to keep me from
said. I nodded yes and in my very slurred speech told
sliding down, and it helped tremendously.
him I was coming back, that I wouldn’t let it defeat me.
4. Pray. You’re not in this alone. You haven’t been
“That’s the attitude to have,” he said.
forgotten. Fear of the unknown is real, so call on
From day one I insisted on trying to do things for
the Lord to strengthen you. Even if there are a lot
myself. If I couldn’t do something, I would be the first to
of people praying for you, pray for yourself.
admit it and let someone else do it. I was keenly aware
(continued)
of my limitations.
Baths took forever, but at least I was clean. I
had recently been in a cast for 10 weeks, so I was
Laura outside the care facility
accustomed to pan baths. Twice a week a home
where she now lives
You need a sense of humor because you are going
to do things that make no sense at all. The quicker
you can laugh at yourself, the better off you’ll be.11
11
25
For quite a long time, I stayed focused on
strengthening my body and mind. People were very
kind and did all they could to make me as cheerful as
possible. I didn’t want to hear that I’d had a stroke. Call
it anything you want, but don’t call it a stroke. I called it
“my little problem.”
I learned not to make sudden turns. I learned to
move slowly, and that it’s best for me to have one hand
anchored. I made the mistake of making a quick turn
three weeks after my stroke and I fell. When I realized I
was going down, I relaxed and let it happen, thinking it
would do less harm that way. Wrong! I was too close to
my recliner and hit my head and hurt my neck.
Let’s consider my list of things to do after a stroke:
4. Pray! Pray! Pray! Remember the hymn, “Be not
dismayed whate’er befall, God will take care of
you.” He will be with you and hold you in His
arms. Talk to Him, invite His healing power into
your life. And remember this above all else: He
loves you!
Editor’s Note: Stroke is a medical emergency. If you or someone
you’re with has had a stroke, or if any of the warning signs start to
occur, get help immediately. Call 9-1-1.
1. Look at yourself in the mirror and say, “I have
had a stroke,” and get on with your recovery. The
quicker you face it, the better you’ll be.
2. If you don’t have a sense of humor, develop
one. You’re going to say and do things you can’t
explain, so get used to it.
3. Ask for help. Your doctor won’t leave you stranded
and will be more than willing to assist you.
Laura at “work”
26
Let’s Get Physical
“Hi John, it’s Sally.” My normally cheery
case manager sounded somber. She was calling
to inform me that the insurance company felt I had
reached my rehab limit. Basically they were ending
my therapy the same way Porky Pig ends a cartoon:
“Th, th, th, th, that’s all folks.” If I wanted to continue
rehab for my left side, I’d have to pick up the tab
myself. Robbing a bank crossed my mind, but I knew
I’d be at a distinct disadvantage during the getaway.
Suddenly I was thrust into a new phase in my recovery. I’m thinking positive
– new faces, new places. I mentioned to a friend in PT that I joined a gym.
“With normal people?” she asked. I winced at the word “normal.” Hey, I live
in the heart of Greenwich Village, where a guy with a spiked orange Mohawk
haircut and covered with tattoos and pierced body parts is considered normal.
He may look like a Visigoth barbarian to me, but what do I know?
In any case I wanted my first day at the gym to go smoothly. I figured the
treadmill would be a safe place to start. All the treadmills were in one large
mirrored room, which gave the impression I was surrounded by thousands of
them. It was like a bad ’50s horror movie, “Invasion of the Treadmills,” scored
by ABBA. I stepped on one and spent 20 minutes staring at the control panel
in bewilderment. Safe maybe, but simple it wasn’t. The thing was demanding.
It kept asking me questions: “Choose your workout. Olympic training?
Marathon? Hill climbing?”
My answers were simple: Olympic training, no thanks. Marathon, not today.
Hill climbing, probably never! All I wanted to do was walk. Finally I found a
button I understood. It said START. I pushed it. The control panel lit up like
fireworks, and the belt slowly started to move. I discovered I had two speeds:
Stop and .001. There I was slowly walking, getting nowhere fast, but the feeling
was amazing. It was truly a Zen experience. Man and machine are one. I was
in that zone Michael Jordan always talks about. That’s when I went from stroke
survivor to “Cool Treadmill Guy.”
Just as I was reaching my peak performance with “Dancing Queen” blaring
in the background, a pair of hot New York University students (think the Hilton
sisters) wearing the latest spandex workout couture
bounced on the treadmills to my left and right. Within
Paris and Nicky glanced over, and
seconds they were jogging so fast they made me feel
I could tell they were wondering
like I was standing still.
what my problem was. My instincts
Paris and Nicky glanced over, and I could tell they
were
wondering what my problem was. My instincts
told me to ignore them, but “Cool
told me to ignore them, but “Cool Treadmill Guy”
Treadmill Guy” wouldn’t listen. wouldn’t listen, so he tried to punch up the speed.
My hand slipped and hit the Olympic training button
instead. I started to lose control. It felt like I was going to be launched to the
other side of the room and splattered on a mirror like a bug on a windshield.
All “Cool Treadmill Guy” cared about was looking bad in front of Paris
and Nicky. I, on the other hand, was hoping I hadn’t thrown away Sally’s
number.
Life
at the
curb
Comedian and stroke
survivor John Kawie’s
unique perspective
on stroke survival
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
[email protected].
27
Moving On Together —
the Difference a Group Makes
by Lucy O’Neil
group dynamics were a powerful catalyst
for energizing bodies, minds and spirits to
re-engage life. The program will soon be
four years old.
Here are a few of the stories of survivors
who are courageously Moving On!
Kathleen would not give her
age, but she had her second
stroke in 2005. She is a wife of 26
years, with two grown children,
and is a retired teacher.
My husband Bill participates in a post-stroke exercise
program designed by therapists at Lawrence & Memorial Hospital
in New London, Conn. They saw the need for a community-based
exercise class for stroke survivors after their discharge from
formal rehabilitation programs.
The therapists were frustrated at not having a good answer for
patients who commonly asked questions like, “Where do I go from
here?” and “How can I continue to exercise and enhance my recovery
in my own community?” The slow pace of recovery experienced by
many survivors can be physically and emotionally draining and can
result in debilitation, depression and disengagement from a valued
life role. The therapists could not find a program designed for stroke
survivors, so they created one. They called it “Moving On” and held
their first class in the spring of 2003.
The group met twice a week for 10 weeks and spent 90 minutes
practicing skills needed for the activities of daily living and
reentry into the community. Their exercises focused on strength,
flexibility, coordination, tone management, communication/
thinking and socialization.
After the first eight-week session, both staff and survivors were
pleased with the results. The members were not following in the
common cycle of decline and debilitation after their release from
rehab. Instead, growth and positive changes were happening. The
28
I had an ischemic stroke in the basal
ganglia in January 2005. I would never
wish this on anyone – not patient nor
caregiver. Even with all the support I’ve
had, there have been some dark “they
would be better off without me” moments.
When I finished outpatient rehab, my
therapist suggested Moving On as a way to
continue therapy. The group environment
is supportive, not condescending, and
reinforces physical, occupational and speech
therapy. No one is “blowing sunshine” at
you. The group reminded me constantly
that I was not a freak and could improve, I
had only to look to the left or right to see
that. Moving On offers opportunities for
continuity of motivation, repetition and
intensity of therapy. It has been such a
worthwhile stepping-stone for me.
Ken Wydler, age 76, had a stroke
in 2002. He is an accomplished
musician who helped the group
sing … in tune, no less!
When I had my stroke in June 2002, I
was encouraged to exercise and was given
a lot of hope by very supportive medical
staff. I grew closer to my wife of 48 years,
and the family was a great support to me.
Participating in Moving On has helped
me do things physically that I could not do
before – plus, it was fun! You have a chance
to make friends and are encouraged by
the progress of others who are in the same
boat. I believe in the plateau theory, but in a
positive way: I’ve progressed from one stage
for a while then to another and another. I
can now go to church every Sunday, visit
with family and friends, eat out often, go to
Bible study, play with an ensemble group
once a month and study painting. I can’t
drive yet but hope to one day.
Fred Serluca, age 84, had a
stroke in 2004. He taught the
group to make pizza and brings his
own upbeat humor to the group
every week.
Before I had my stroke, I enjoyed a
life of occasional cooking for my family,
playing golf, spending time with friends,
traveling and reading. I’ve always been
outgoing and able not to take matters too
seriously.
After my stroke, I was confused and
bitter, but I then settled down and dealt
with the situation. With rehabilitation
and the support of my family, I began the
journey back to recovery. When I joined
Moving On, I just wanted to continue
rehab. The big difference for me has been
participating in group exercise as opposed
to “one-on-one” rehabilitation, which can
become tiresome.
The impact that this program has
made on my life has been positive both
physically and emotionally. Setting goals
and attaining them has been a part of my
healing process, and I’m happy to say that
I’ve had more “ups” than “downs,” and I
hope to continue improving.
Moving On has been very good for me, because I am with other
people who are disabled so I don’t feel so different. And I am now
walking with a cane!
Gary Gidman, age 55, had his stroke in July 2002. He
is an accomplished and multitalented musician who has
worked as a guitarist, bassist, vocalist and composer.
I read about Moving On in a flyer. I don’t recall having any
particular expectations but, generally speaking, the class encouraged
social involvement and taught me many exercises, challenging my
skills in those areas. The program inspired me to give up my walker
in favor of a cane, which improved my independence and mobility.
As of today, I am involved with four different social workers and
have started performing again. I’ve resumed amateur composition,
and a band in the UK has recorded a song I co-wrote with a friend in
2005. It was broadcast on the BBC.
Leslie Clark Demlein, age 60, had a stroke in
January 2004. She was a teacher for 32 years.
After my stroke, I was near death so I don’t remember the first
two weeks. As time passed by, the medical staff gave me so much
hope that I expected to get well in a flash, yet that flash never
happened.
I was introduced to Moving On by my therapist, but I didn’t
know what to expect. However, the whole “gang” made it special
for me. Some could talk, some couldn’t. Some were better off than
others. I remember we all discussed the question, “How are you
dealing with the rest of your life?” The only other female in the
group got up and spoke in sobs. Those kinds of things stay with me.
I don’t believe in the plateau theory because it means my first
year of recovery is all there is. I’m now in the second year of my
“strokedom.” I still have a bum right leg and arm plus I have aphasia
and apraxia. I continue with speech therapy, but I am improving.
(continued on page 32)
The Moving On group at rest
David Bourne, age 79, had a
stroke in 2003. He brings his love
of the sea to the program.
When I retired from my job in 1988,
I enjoyed a life that included sailing,
swimming, playing with my grandchildren
and spending warm winters in Florida. I
was devastated by my stroke. I couldn’t
even sit up straight at first, and even now
life has limitations. My family life has
changed forever.
29
E V E RY D AY
C o n n e c t i n g Yo u t o H e l p f u l I d e a s
to dress is
success
by Mike Mills
anaging life at home after a stroke can
be a challenge for the survivor. Daily
tasks that were once simple may now
seem difficult or impossible.
But by making adjustments, some
survivors can once again manage those tasks, including
dressing and undressing. Although how much help is required
varies, reclaiming even a small portion of independence in
dressing enhances survivors’ self-esteem.
If you are a caregiver, encourage your survivor to dress every
day instead of wearing pajamas. Being dressed for the day can
promote a positive mood.
Here are several tips to help the survivor learn to dress
and undress:
choosing clothing
• Choose clothing that fastens down the front. Clothing that
must be pulled over the head (undershirts, nightgowns,
sweaters) may be difficult to manage.
• Avoid tight-fitting sleeves, armholes, pant legs and
waistlines.
• Knit fabric wrinkles less than woven fabric, requiring little
or no ironing.
• It is easier to pull slacks up and down over nylon
underwear than over cotton.
• Coats and jackets lined with smooth fabrics such as satin,
silk and nylon are easier to put on than unlined garments.
• Clothing may be easier to handle if it features elastic or
Velcro fasteners, snaps, elastic waistbands and rings
attached to zipper pulls.
30
dressing and undressing
• When getting dressed, lay out
clothes in the order they will be put
on. Those to be put on first go on
top of the pile.
• Putting on clothes is easier when
sitting than when lying down.
• Always put clothing on the affected
side first. When undressing, always
take clothes off the affected side last.
• To put on blouses, jackets and
cardigan sweaters, lay the garment
on a flat surface with the collar
furthest away from you and the
back side of the garment facing
the ceiling. Bend over and put your
arms into the armholes and lift the
garment up and over your head.
• To remove blouses, jackets and
sweaters, unbutton and ease
garment off shoulders. Reach
behind your back and gently tug
the garment off. If your balance is
unsteady, sit on the edge of the
bed or on a chair to put on your
clothing.
• To avoid getting buttons in the
wrong holes, begin with the ones
at the bottom that you can see and
work from there to the top.
• If your arms are weak, rest your
elbows on a table, chest of
drawers or chair armrests while
fastening buttons.
• If you are a woman who doesn’t
have a bra that hooks in front,
consider getting one. (Frontfastening bras are available up
to sizes E and F.) Sleep bras are
normally front-fastening and give
soft support and are useful while
dressed in nightwear. They usually
have a high back with wide straps.
• Crop tops give little support but
usually have wide straps and
no fastenings. They can be put
on over the head or held by the
shoulder straps and pulled on over
feet and legs, like pants.
Getting
dressed every
day promotes
self-esteem
and a positive
attitude.
• Sports bras give different levels
of support with full freedom of
movement, and are often T-back
or racer back. They are often put
on over the head or over the feet
and legs and pulled upwards, but
are also available with front- and
back-fastening.
• Dress in front of a mirror. It will help
you find the sleeves and match up
buttons with buttonholes.
• Allow plenty of time for dressing.
• Ask for help. If necessary, a
caregiver or family member should
be able and willing to help.
• Use a reacher, buttonhook or
dressing stick for putting on clothing
and reaching items in a closet.
putting on pantyhose
• While seated, cross the affected
leg over the unaffected leg. Gather
up the stocking for the affected
leg in the unaffected hand all the
way to the toe. Put the stocking
over the toes and foot. Uncross
the legs and pull the stocking to
the knee. Gather the other stocking
leg to the toes and put it over the
toes of the unaffected leg and start
pulling up the stocking. Stand up
to pull pantyhose completely up or
lie on the bed and roll side-to-side.
(You may want to buy a size larger
than normal. They go on easier. Or
buy thigh-high nylons that use an
elastic band to hold them in place.
Be sure the band is not too tight
– you don’t want it to interfere with
the blood flow to your legs.)
socks and shoes
• Socks can be put on with one
hand, but if you need help putting
on socks, buy a sock stretcher.
Using a larger sock also helps.
• Socks will go on easier if you
sprinkle a little cornstarch on the
bottom of your feet first.
• Wear shoes or slippers that fit
snugly. Don’t walk around in
stocking feet.
• Several products are available
for tying shoes, including elastic
shoelaces.
• Have a shoe repair shop alter the
shoes by installing Velcro closures.
• If using a brace, put the brace in
the shoe first. Pick up the shoe
by the toe and lay it down on the
back of the brace. Step into the
trough of the brace and slide the
foot forward into the shoe. Hold
the tongue out of the way.
• Use a long-handle shoehorn.
belts and pants
• Put the belt on the skirt, slacks or
dress before putting it on.
• Rather than trying to pull pants on
holding the waist in weak fingers,
thrust the affected hand deep into
the side pocket and pull up the
pants. This allows the arm to hold
the weight of the pants rather than
the fingers.
• Use the unaffected hand to tuck in
the shirttails.
• To close the waist, put the affected
thumb through the last belt loop,
then push against that to draw the
waist closer together.
(continued)
31
E V E RY D AY
C o n n e c t i n g Yo u t o H e l p f u l I d e a s
where to find clothing,
assistive devices
Know...
Access Clothing
Life With Ease
1-778-229-4235 (mobile)
1-800-966-5119
www.accessclothing.ca
www.lifewithease.com
THE WARNING SIGNS
OF STROKE:
• Sudden numbness or weakness
of the face, arm or leg, especially
on one side of the body
Adaptive Clothing
ActiveForever.com
1-800-572-2224
1-800-377-8033
www.adaptiveclothing.com
www.activeforever.com
• Sudden confusion, trouble
speaking or understanding
Professional Fit Clothing
Able Medical Aids
1-800-422-2348
1-800-831-9099
• Sudden trouble seeing in one
or both eyes
www.professionalfit.com
http://store.ablemedical.com
Silvert’s
Caregiver Products.com
1-800-387-7088
1-877-750-0376
www.silverts.com
www.caregiverproducts.com
• Sudden trouble walking,
dizziness, loss of balance or
coordination
• Sudden, severe headache with
no known cause
(continued from page 29)
Lucy O’Neil is caregiver for her husband,
William O’Neil, who had a stroke in 2004 at
age 60. Bill was an electrician and a proud
member of International Brotherhood of
Electrical Workers Local 35 for 40 years.
In May 2004 Billy suffered a stroke – and I do mean
suffer. Paralyzed on the right side, experiencing memory
loss and aphasia, he went through rehab with various
therapists who I believe are “walking angels.” His family
came to cheer him on, and hope was in the air.
Like many others coming out of rehab, Billy was
encouraged by his progress, but as days became months,
he began a downward emotional spiral. He withdrew
emotionally and became very antisocial, angry and
depressed. He seemed to lose all hope of further recovery.
When our therapists suggested Moving On, Billy was in no
mood to join, so I had to cajole him to attend in March 2005.
Billy says, “As the session progressed with hard work
and seemingly impossible challenges, I began to see
things more clearly. To my surprise, there were many
32
people far worse off than me, yet everyone seemed to have
reason to smile and laugh.
“Helping hands were extended to me, we laughed at
ourselves, played music and sang crazy songs together.
I listened to others as they shared their grief and anger.
I think the difference with a program like Moving On is
that it isn’t all about me, it’s about us and how we can
contribute to the group while trying to improve ourselves.”
I like that the program encourages caregivers to stay
during the sessions. Indeed, I was greeted by other caregivers
with much understanding and kindness. Caregivers are
encouraged to contribute, and the therapists listen, knowing
that we spend 24/7 with the aftermath of stroke.
Billy has become more social, his speech is improving
and he is – very slowly – gaining much-needed stamina.
By sharing our vision and experiences, we hope that
more communities will develop similar community-based
exercise classes.
Editor’s Note: If you would like information about the Moving On
program, please call the Warmline, 1-888-4-STROKE (478-7653).
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)%.!5
p
YOU DON’T
WANT ANOTHER
HEART ATTACK
OR ANOTHER
STROKE
TO SNEAK UP
ON YOU.
p
WITHOUT PLAVIX
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).
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.
TALK TO YOUR DOCTOR ABOUT PLAVIX.
For more information, visit www.plavix.com or call
1-888-355-1152
PROVEN TO HELP PROTECT FROM
ANOTHER HEART ATTACK OR STROKE
© 2006 Bristol-Myers Squibb/Sanofi Pharmaceuticals Partnership.
US.CLO.06.12.001/December 2006 B1-K0263A-12-06
sanofi-aventis U.S. LLC
NON-PROFIT ORG.
U.S. POSTAGE PAID
PERMIT NO. 4
LONG PRAIRIE, MN
National Center
7272 Greenville Avenue
Dallas, TX 75231-4596
p
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.
WITH PLAVIX

Moving On Together – The Difference a Group Makes

Transcription

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