StrokeSmart

Increase endurance: slow and steady wIns the race p10

lifeStyle | recovery | reSearch | prevention

Spring 2011

Stroke Policy
Gets Boost from

stroke
advocacy
network

p12

Get connected
with online
advocacy toolkit p16
GOLF TOURNAMENT
BRINGS ABOVE PAR
AWARENESS p6
need help payinG
for healthcare?p15
National

STROKE

Association

Expressing emotions shouldnt be

left to chance

Many people who have had a stroke also suffer from a neurologic
condition called pseudobulbar affect (PBA), which causes sudden,
involuntary outbursts of crying or laughing
An estimated 10% to 20% of people who have suffered a stroke are
thought to have symptoms of PBA
More than a million Americans suffer from PBA, including people
with other underlying neurologic conditions such as Lou Gehrigs
disease (ALS), multiple sclerosis (MS), and traumatic brain injury

If you or someone you care for shows signs of having PBA, talk to your doctor or visit
PBAinfo.org. You can also share your PBA experiences at facebook.com/PBAinfo

2010 Avanir Pharmaceuticals, Inc. All Rights Reserved. PBA-0070-ADV-0911

Spring 2011

StrokeSmart

StrokeSmart

www.stroke.org

Table

ofContents

Chief Executive Officer | Jim Baranski

StrokeSmart

Tm

12 stroke advocacy

network
New steering committee refines
policy agenda and plans to hit
Washington D.C.

IN EVERY IssUE
7
8
17

get involved
gear & gadgets
marketplace

INDEX OF
ADVERTIsERs
ADT Companion services . . . . . . . . . .1
Aggrenox . . . . . . . . . . . . . . . . . . . .3,4,5
Allergan . . . . . . . . . . . . . . . . Back Cover
Ams Vans . . . . . . . . . . . . . . . . . . . . . .11
Avanir pharmaceuticals . .Inside Cover
Communication partners. . . . . . . . . .17
Dorsi-strap . . . . . . . . . . . . . . . . . . . . .17
Dorsi-Lite. . . . . . . . . . . . . . . . . . . . . . .17
Dynamic Arm sling. . . . . . . . . . . . . . .17
Life Alert . . . . . . . . . . . . . . . . . . . . . . .17
myomo . . . . . . . . . . . . . . . . . . . . . . . .11
power Access . . . . . . . . . . . . . . . . . . .17
Rebuild Fitness . . . . . . . . . . . . . . . . . .14
sleep safe Beds . . . . . . . . . . . . . . . . .11
Theracycle . . . . . . . . . . . . . . . . . . . . . .17
WalkAide. . . . . . . . . . . . . . . . . . . . . . . .1
2

Spring 2011

Managing Editor | Pam Peters

Copy Editor | Dana Lang
Art Director | Amelia DuRocher

10

Contributing Writers
Lori Ann Bravi | Joan Christensen
Annalise de Zoete | Paul Gada
Irene Middleman Thomas

15

DEpARTmENTs
6 champion of hope

Deanna Coopersmith creates a

family-friendly golf tournament to
raise funds and awareness.

9 prevention

Changes in lifestyle choices can

reduce stroke risk. Be sure youre
taking these steps.

National Stroke Association Board Members

Valerie Ireland Co-Chair
Michael Walker, M.D. Co-Chair
George Davis Jr. Vice Chair
Sue Anschutz-Rodgers | Mollye Block, M.S. Ed.
Howard M. Brenner | Anastasia Coleman
Edward F. Cox Esq. | Patricia Nixon Cox
Philip Gorelick, M.D., M.P.H.
Daniel F. Hanley, M.D. | Robert Shapiro
Hon. Samuel K. Lessey Jr. Chairman Emeritus
Subscriptions | 800-787-6537
Advertising or Editorial | Amy McCraken
amccraken@stroke.org 303-816-7368
ADVERTISING POLICY STATEMENT
The acceptance of advertising in this publication does not
constitute or imply endorsement by National Stroke Association
of any advertised product or service. National Stroke
Association strongly recommends that people ask their doctors
before using any medicine or therapy.
National Stroke Association accepts no responsibility for any
claims made in any advertisement in this publication.

StrokeSmart is published quarterly by National Stroke

Association, 9707 E. Easter Lane, Suite B, Centennial, CO 80112,

10 rehabilitation & recovery

The greatest successes happen over
time, not overnight, when increasing
endurance during rehabilitation.

and is available by subscription free to qualified individuals

and organizations. Material in this publication may not be
reprinted without written permission from the editorial offices in
Centennial. Printed in the USA.
POSTMASTER: Send address changes to National Stroke
Association, 9707 E. Easter Lane, Suite B, Centennial, CO 80112.

15 caregivers corner

Follow these steps to help find and

pay for the right care after a stroke.

16 technology

The online Advocacy Toolkit

provides several action items to get
connected with key policy makers.

StrokeSmart
Increase endurance: slow and steady wIns the race p10

lifeStyle | recovery | reSearch | prevention

Spring 2011

Stroke Policy
Gets Boost from

stroke
advocacy
network

p12

Get connected
with online
advocacy toolkit p16
GOLF TOURNAMENT
BRINGS ABOVE PAR
AWARENESS p6
need help payinG
for healthcare?p15
National

STROKE

Association

Image by DHuss

FEATURE

Publisher | Amy McCraken

Spring 2011 - volume 10 | iSSue 2

Galina Barskaya

StrokeSmart

Tm

National

STROKE

Association
member
CorporaTe allianCe board

Chairman Level
Allergan, Inc.
Boehringer Ingelheim Pharmaceuticals, Inc.
Genentech, Inc.
Executive Level
Bristol-Myers Squibb Pharmaceuticals/
Sanofi Pharmaceuticals Partnership
Medtronic, Inc
Director Level
Allsup, Inc.
AstraZeneca
Avanir Pharmaceuticals
GE Healthcare
Medtronic, Inc.
Penumbra, Inc.

800-STROKES
(800-787-6537)
StrokeSmart is printed on 20 percent recycled
(10 percent Post-consumer waste) paper using only
soy-based inks. Our printer meets or exceeds all Federal Resource Recovery Act (RCRA) standards.

WWW.STROKE.ORG

StrokeSmart

25% of people who

recover from their first
stroke will have another
stroke within 5 years.
Ask your doctor about AGGRENOX an FDA-approved
prescription medication to lower the risk of stroke following a
transient ischemic attack (TIA) or stroke due to a blood clot.
In a 2-year clinical study, AGGRENOX given twice daily
was proven more effective than low-dose aspirin (25 mg) for
lowering the risk of stroke following a TIA or stroke due to a
blood clot.
To learn more and get a valuable savings coupon,
visit www.aggrenoxAd.com and join the Taking Smart
Steps program.

DOCTOR PORTRAYAL

Important Safety Information

AGGRENOX is a prescription medication used to lower the risk of stroke in people who have had a mini-stroke
(transient ischemia attack or TIA) or stroke due to a blood clot.
AGGRENOX should be avoided in patients allergic to any ingredient in AGGRENOX, allergic to non-steroidal antiinflammatory drugs (NSAIDS), or who have the combination of asthma, runny nose and nasal polyps. AGGRENOX
should not be given to a child or teenager due to the risk of Reyes syndrome.
AGGRENOX may cause an increased bleeding risk, including into the brain, stomach or intestines and any bleeding
may take longer to stop. AGGRENOX should be avoided in patients with a history of stomach ulcers or those who
drink three or more alcoholic drinks a day due to the risk of bleeding. Patients should inform their doctor of all
medications they are currently taking including NSAIDS or blood thinners.
AGGRENOX should be avoided during pregnancy, especially in the third trimester, or in patients with severe liver
or kidney problems. The most common side effects of AGGRENOX are headache, upset stomach and diarrhea.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch
or call 1-800-FDA-1088.
See Important Patient Information on the next pages.

Copyright 2010 Boehringer Ingelheim Pharmaceuticals, Inc.

All rights reserved. (11/10)
AG80402CONS

Patient Information
Aggrenox (AG-reh-nox)
(aspirin/extended-release dipyridamole) Capsules
Read this Patient Information before you start taking
AGGRENOX and each time you get a refill. There may
be new information. This information does not take the
place of talking to your healthcare provider about your
medical condition or your treatment.
What is AGGRENOX?
AGGRENOX is a prescription medicine that contains
aspirin and a medicine that is slowly released in your
body, called dipyridamole. AGGRENOX is used to lower
the risk of stroke in people who have had a mini-stroke
(transient ischemia attack or TIA) or stroke due to a
blood clot.
It is not known if AGGRENOX is safe and effective in
children. See Who should not take AGGRENOX?
Who should not take AGGRENOX?
Do not take AGGRENOX if you:
are allergic to any of the ingredients in AGGRENOX.
See the end of this leaflet for a list of ingredients in
AGGRENOX.
are allergic to non-steroidal anti-inflammatory drugs
(NSAIDS)
have asthma in combination with runny nose and nasal
polyps
Do not give AGGRENOX to a child or teenager with
a viral illness. Reyes syndrome, a life-threatening
condition, can happen when aspirin (an ingredient in
AGGRENOX) is used in children and teenagers who
have certain viral illnesses.
What should I tell my doctor before using AGGRENOX?
Before taking AGGRENOX, tell your healthcare
provider if you:
have stomach ulcers
have a history of bleeding problems
have heart problems
have kidney or liver problems
have low blood pressure
have myasthenia gravis
have any other medical conditions
are pregnant or plan to become pregnant.
AGGRENOX can harm your unborn baby, especially
if you take it in the last (third) trimester of pregnancy.
You should not take AGGRENOX during pregnancy
without first talking to your healthcare provider. Tell
your healthcare provider right away if you become
pregnant while taking AGGRENOX.
are breast-feeding or plan to breast-feed.
AGGRENOX can pass into your milk and may harm
your baby. Talk to your healthcare provider about the
best way to feed your baby if you take AGGRENOX.

Tell your doctor about all the medicines you take

including, prescription and non-prescription medicines,
vitamins and herbal supplements. AGGRENOX and
other medicines may affect each other causing side
effects. AGGRENOX may affect the way other medicines
work, and other medicines may affect how AGGRENOX
works.
Especially tell your healthcare provider if you take:
a medicine for high blood pressure, irregular heart
beat, or heart failure
acetazolamide [Diamox]
the blood thinner medicine warfarin sodium
[Coumadin, Jantoven] or a heparin medicine
a seizure medicine
a medicine for Alzheimers disease
a water pill
methotrexate sodium [Trexall]
aspirin or a non-steroidal anti-inflammatory
drug (NSAIDS). You should not take NSAIDS
during treatment with AGGRENOX. Using these
medicines with AGGRENOX can increase your
risk of bleeding.
a medicine for diabetes
probenecid [Probalan, Col-Probenecid]
Ask your healthcare provider or pharmacist if you are not
sure if your medicine is one that is listed above.
Know the medicines you take. Keep a list of them and
show your healthcare provider and pharmacist when you
get a new medicine.
How should I take AGGRENOX?
Take AGGRENOX exactly as prescribed. Your
healthcare provider will tell you how many
AGGRENOX to take and when to take them.
Headaches are not uncommon when you first start
taking AGGRENOX, but often lessen as treatment
continues. Tell your healthcare provider if you have
a severe headache. Your healthcare provider may
change the instructions for taking AGGRENOX.
Swallow AGGRENOX whole. Do not crush or chew
the capsules.
You can take AGGRENOX with or without food.
If you miss a dose, take your next dose at the
usual time. Do not take two doses at one time.
If you take more AGGRENOX (overdose) than
prescribed, call your healthcare provider or Poison
Control Center, or get emergency help right away.
Symptoms of an overdose of AGGRENOX include:
a warm feeling or flushing
sweating
restlessness
weakness or dizziness
a fast heart rate
ringing in the ears

What should I avoid while using AGGRENOX?

heavy alcohol use. People who drink three or
more alcoholic drinks every day have a higher risk
of bleeding during treatment with AGGRENOX,
because it contains aspirin.
What are the possible side effects of AGGRENOX?
AGGRENOX may cause serious side effects,
including:
increased risk of bleeding. You may bleed more
easily during AGGRENOX treatment, and it may take
longer than usual for bleeding to stop. This
can include:
bleeding into your brain (intracranial
hemorrhage). This can be a medical emergency.
Get medical help right away if you have any of
these symptoms while taking AGGRENOX:
severe headache with drowsiness
confusion or memory change
pass out (become unconscious)
bleeding in your stomach or intestine.
stomach pain
heartburn or nausea
vomiting blood or vomit looks like coffee
grounds
red or bloody stools
black stools that look like tar
new or worsening chest pain in some people
with heart disease. Tell your healthcare provider if
you have new chest pain or have any change in your
chest pain during treatment with AGGRENOX.
liver problems, including increased liver function
tests and liver failure. Tell your healthcare provider if
you have any of these symptoms of a liver problem
while taking AGGRENOX:
loss of appetite
pale colored stool
stomach area (abdomen) pain
yellowing of your skin or whites of your eyes
dark urine
itching
Call your healthcare provider right away if you have any
of the symptoms listed above.
The most common side effects of AGGRENOX
include:
headache
upset stomach
diarrhea

How should I store AGGRENOX?

Store AGGRENOX at 59F to 86F (15C to 30C).
Keep AGGRENOX capsules dry.
Safely throw away medicine that is out of date or no
longer needed.
Keep AGGRENOX and all medicines out of the reach
of children.
General information about AGGRENOX
Medicines are sometimes prescribed for purposes
other than those listed in the Patient Information. Do
not use AGGRENOX for a condition for which it was not
prescribed. Do not give AGGRENOX to other people,
even if they have the same symptoms that you have. It
may harm them.
This Patient Information summarizes the most important
information about AGGRENOX. If you would like more
information, talk with your healthcare provider. You
can ask your pharmacist or healthcare provider for
information about AGGRENOX that is written for health
professionals. For more information, call Boehringer
Ingelheim Pharmaceuticals, Inc. at 1-800-542-6257 or
(TTY) 1-800-459-9906.
What are the ingredients in AGGRENOX?
Active Ingredients: dipyridamole in an extended-release
form and aspirin
Inactive Ingredients: acacia, aluminum stearate, colloidal
silicon dioxide, corn starch, dimethicone, hypromellose,
hypromellose phthalate, lactose monohydrate,
methacrylic acid copolymer, microcrystalline cellulose,
povidone, stearic acid, sucrose, talc, tartaric acid,
titanium dioxide and triacetin. Each capsule shell
contains gelatin, red iron oxide and yellow iron oxide,
titanium dioxide, and water.
Distributed by:
Boehringer Ingelheim Pharmaceuticals, Inc.
Ridgefield, CT 06877 USA
Licensed from:
Boehringer Ingelheim International GmbH
Copyright 2009 Boehringer Ingelheim International GmbH
ALL RIGHTS RESERVED
Patent No. 6,015,577
Rev: October 2009
OT1000FJ0709
42633/US/8

These are not all the possible side effects of AGGRENOX.

Tell your healthcare provider or pharmacist if you have
any side effect that bothers you or that does not go away.
Call your healthcare provider for medical advice about
side effects. You may report side effects to FDA at
1-800-FDA-1088.

AG79505CONS

Champion

of Hope

Golf Event Raises Awareness

of Stroke at Any Age
Coopersmiths Event Honors Husband and Educates Others
By AnnAlise de Zoete

ne minute I had a
healthy husband, the
next I was planning a
funeral, said Deanna Coopersmith.
Her husband Scott was a healthy
32-year-old banker when he died
from stroke. He was the father of an
active two-year-old son and showed
no warning signs of stroke. His death
shocked everyone.
Scott was too young to pass
away. Never in a million years did I
think he would die of stroke, said
Coopersmith. Losing her husband just weeks before
her sons third birthday, the summer and fall of 2009
were challenging for her. On Thanksgiving, Scotts
favorite holiday, Coopersmith spent the day in bed.
However, that was not her
same course of action just one
year later. In 2010, Coopersmith
began proactively fulfilling her
promise to make something
positive out of something negative. She organized a stroke
awareness and fundraising golf tournament, began
a masters degree in Group Therapy and provided a
Thanksgiving meal to the neurological intensive care
unit (ICU) that had treated Scott.
Together with Scotts brother Craig, Coopersmith
organized the first annual Scott Cory Coopersmith
Stroke Awareness Golf Tournament held on the oneyear anniversary of Scotts passing. The two worked
hard to make the event successful by soliciting sponsors, coordinating a silent auction, running a raffle
and creating t-shirts. Because they wanted to include
families, they also engaged a clown and a bouncy
house so people could bring their kids to the tournament. Dozens of people attended and the event raised
approximately $10,000 for National Stroke Association.
Because she basically lived in the hospital waiting
room for a week after Scott had his stroke, this

November Coopersmith and her in-laws brought

Thanksgiving dinner to the families and staff in
the ICU of Florida Hospital South. Some of the
nurses working that day were the same people
who had helped care for Scott.
Coopersmith and Scotts family
hope to continue both the golf
tournament and their new
Thanksgiving tradition each year.
Coppersmiths stroke-championing actions and hopeful attitude illustrate what she has said about her husbands
strokethat she refused to let it take [her] life too.
Coopersmith is passionate about talking about young
people and stroke. My husbands death was such
an eye-opening event for so many people, she said.
Coopersmith herself hadnt known that stroke could
be fatal. Even after discovering Scott had suffered a
stroke, she assumed that he would face rehabilitation
challenges but would survive.
Frustrated with the lack of stroke publicity and visibility, Coopersmith works hard to tell others about
this deadly disease. People dont even know what
the symptoms [of stroke] are, she said. For that
reason, and to honor her husband, this young widow
and single mother has turned her devastating loss
into meaningful action, diligently raising awareness
about the reality of stroke at any age.

Never in a million
years did I think he
would die of stroke.

Spring 2011

StrokeSmart

Get Involved

May Is National Stroke

Awareness Month
Stroke Awareness Resource Center Launches

isit National Stroke Associations new online

Stroke Awareness Resource Center (stroke.
org/awareness) for all you need to get
educated about stroke. Find event-hosting tools
including an event calendar, resources for presenting
stroke information to communities and groups,
ideas for social media outreach, E-cards, a stroke
historical retrospective and more. Join us in May.

Faces of Stroke Awareness Campaign

Raise stroke awareness in a personal way by participating as a Face of Stroke through National Stroke
Associations new stroke awareness campaign. Stroke

champions can
upload a personal story and
photo to the
campaigns gallery and/or send
E-cards to loved
ones. Watch for
special daily
Faces profiles on stroke.org. Join thousands of others
in educating about stroke in a personal and inspiring
way at stroke.org/awareness.

May 23: Live iHOPE Ask the Experts with

Dr. Steve Page

National Stroke Associations iHOPE program offers

on-demand webinars and live Ask the Experts sessions. Join Dr. Steve Page on Monday, May 23, 2011 at 12
p.m. central for Mobility Post-Stroke Ask the Experts.
This is a live, 60-minute question and answer session
where you get to ask the questions. To register, and to
view other opportunities, visit stroke.org/ihope.

Support Stroke Awareness and Education

To donate online, please visit stroke.org/donate.

To donate by mail, please fill out and return this portion with your donation to:
National Stroke Association, 9707 E. Easter Lane, Suite B, Centennial, CO 80112.

Enclosed is my gift of $25 _____ $50 _____ $75 _____ $100 _____ $250 _____ $500 _____ Other $ __________
Form of payment:
o Check o MasterCard o Visa o AMEX o Discover
Please make checks payable to National Stroke Association.
Card Number

Expiration Date

Name
City

State

Telephone

Email

SS1102ASK

Address
Zip

Support National Stroke Association today. Together we can save lives.

StrokeSmart

www.stroke.org

Gear

&Gadgets

Mobile Phone Triggers

Emergency Response; Exerciser
Improves Strength

Device Performs
Emergency Response

Hands-Free Control System

Uses Head Movements

A Just5 phone is more than

simply a phone. This smart mobile
device has:
Emergency-response (ER)
function
Large buttons for ease of dialing
Speaking keypad that confirms
which buttons are pressed
Flashlight
The ER function lets users preset
five phone numbers. When users
press the SOS button, the phones
siren attracts others nearby. It then
texts an urgent message to the five
preset numbers and dials them in
prioritized order. Once someone
answers a call, the phone automatically switches to loud-speaker
mode for easier communication.

The AccuPoint System movement

tracking system from InvoTek lets
stroke survivors control their computers with a wide range of movements while discerning tremors
from intentional movements. Most
AccuPoint users control the mouse
and type letters with head movementsbut any movement can
be used. The system mounts easily
on the back of a computer display and plugs into the computer
with a USB cord. The small plastic
reflector that works with the unit
attaches to the users forehead
comfortably using double-sided
tape.

Price: $89.99
Phone: 800-709-0509
Website: just5.com

Price: $1,495
Phone: 479-632-4166
Website: invotek.org

Hand Exerciser Builds

Strength in Hands, Arms,
Fingers, Forearm and Ankles
Powerweb Ultimate is a versatile
limb exerciser that can strengthen
the fingers, thumb, wrist, forearm
and even the ankle. Available in six
difficulty levels it can accommodate almost any user. The 8-ounce
exerciser includes an instruction
booklet with 39 different exercises.
Both hands can be exercised at
once, or a single finger isolated and
exercised. Resistance can be modified for specific needs by adjusting
hand position and/or depth of
finger insertion. The Powerweb
Ultimate accommodates all hand
sizes and strength levels.

Price: $45
Phone: 888-570-8836
Website: improvelife.com

The product descriptions included in Gear & Gadgets are for informational purposes only. A products inclusion in StrokeSmart
does not imply endorsement by National Stroke Association nor does it guarantee the reliability or safety of the products listed.
8

Spring 2011

StrokeSmart

Prevention

Control Your Stroke Risk

Exercise, Stop Smoking and Eat Healthier

By Pam Peters, managing editor

Lifestyle Choices
People with high risk conditions (hypertension, diabetes, hyperlipidemia and atrial fibrillation) as well as
those with low risks should adopt the following lifestyle changes to reduce their risk of having a stroke.
Stop Smoking: Smoking greatly increases the risk
of stroke and quitting is a major way you can reduce
stroke risk. As soon as someone stops smoking,
stroke risk decreases. Get support from a smoking
cessation program and drop the habit for good.
Get Moving: Exercise is another important way to
reduce the risks of a stroke. With exercise equaling
30 minutes of brisk walking, five times per week,
stroke risk can be reduced by as much as 24 percent
according to stroke.org. Many activities count toward
exercise including walking, swimming, dancing, gardening and house cleaning. For those new to exercise, check with a doctor first and work on making a
manageable exercise plan.
Eat Healthier: Eating a diet high in fruits, vegetables and whole grain foods can actually reduce ones
risk of stroke significantly. People who averaged eight

Go for the raInbow

experts recommend eating as many as eight
servings of produce daily in every color of the
rainbow to receive enough of the beneficial vitamins
and nutrients for stroke risk reduction. easy ways to
increase your fruit and vegetable intake include:
drinking a glass of vegetable juice.
Pre-cutting vegetables and fruits for easy
snacking and cooking.
Using herbs and spices (not salt) on vegetables
for added flavor.
adding grated vegetables to enrich soups, meat
patties, casseroles and sauces.
StrokeSmart

or more
servings of
fruits and
vegetables
per day are
significantly less
likely to have a stroke.
Although eight servings a day sounds like
a lot, even five can have
an impact. Try citrus fruits
and vegetables high in
folic acid, fiber and potassium, such as broccoli,
kale and cauliflower. In
addition to eating more
produce, cut back on sodium (salt) and saturated as
well as hydrogenated fats. It is also important to be
aware of food content, even in restaurantsto know
the amounts of sodium and fats in each serving.
Consume Alcohol Wisely: While studies have
shown that one alcoholic beverage daily may lower
stroke risk, drinking more than two per day can
increase stroke risk. If you drink, do so moderately
and remember that it can negatively interact with
other drugs you might be taking. If you drink too
much, cut back. If you dont drink alcohol, dont start.
emilia stasiak

eve all heard how important it is to exercise

and keep a healthy weight for countless
health reasons. Reducing the risk of a first
or second stroke is probably one of the most important. Although stroke is one of the leading causes of
disability in the U.S., it is also possible to reduce ones
stroke risk with lifestyle changes.

Medical Issues
Be sure to visit your doctor regularly so he or she
can detect any silent factors that might lead to a
stroke. Medical issues such as the ones listed below
can be controlled through medication, surgery and
lifestyle changes. If you already are addressing these
issues, youre already lowering your stroke risk.
Discuss any side effects youre experiencing from your
medication with your doctor. Medical conditions that
greatly increase the risk of stroke include:
High blood pressure
Atrial fibrillation
Carotid artery disease
High cholesterol
Diabetes
Atherosclerosis
www.stroke.org

Rehabilitation

& Recovery

Increase Your Endurance

Train Like a Triathlete with Discipline and Persistence

s an Ironman triathlete and occupational

therapist, I often tell my clients that their
rehabilitation after stroke is similar to my
training for a triathlon. It takes persistence, discipline
and desire to make progress as an athlete, just as it
does to meet the short- and long-term goals in rehab.
There are many days when I wake up tired and do
not feel like going to swim practice before work. But
I go because I know the importance of steadily and
slowly building strength. There are also times when I
do not feel up for the 3-hour bike rides. It crosses my
mind that skipping a workout will not matter in the
long run. But once I get going, I always feel better and
stronger. By mid-season, I find that climbing hills on
my bike for long stretches is actually easier and more
enjoyable because I did the prep work for my endurance in the off-season.
Endurance is a key factor in rehab after stroke. It is
actually a very complex part of rehab because it must
be built slowly, yet steadily, in order to positively
impact the daily routine. There is a rule of thumb that
states, for every day spent in bed or in the hospital,
one week of physical activity is required to regain the
strength that was lost. Stroke survivors must start

10

Spring 2011

Birgitte Magnus

Mathias Wilson

amriphoto

By Lori an n B rav i

slowly and accept that building endurance again will

and should take time if approached correctly. Keeping
this in mind, a survivor should work together with a
therapist to create measurable and reasonable goals
with slow increases in difficulty.
Persistence is important when building endurance.
We do not always see the small gains we make, often
mistaking this for not making any progress at all. A
survivor may feel ready to stand in the shower again
rather than sit on a tub bench. But in reality the body
is building the endurance needed to tolerate such a
complex activity. If someone is able to handle two
minutes of standing at the start, consistency in rehab
will steadily increase those minutes to three, four,
five and even more over time. The greatest successes
happen over time, not overnight.
Discipline is also very important when building
endurance. It takes the guesswork out of deciding
whether or not to do the exercises or go to therapy
every day. Following a basic routine in order to stay
active will most likely directly increase endurance.
Committing to a program is committing to oneself.
Survivors owe it to themselves to do those additional
repetitions of each exercise every day, or add one new
StrokeSmart

exercise to the routine weekly to increase strength

and endurance. Caregivers can help this process
by giving the person encouragement and support
during the rehab process.
Desire is one of the most important components
of building endurance. I can encourage clients to
perform activities or exercises during a therapy session. However, I cannot make them do the programs
at home. In order to see long-term changes that
will move them ahead, the survivor has to want to
improve. That is how they will notice six months
later that they are now able to stand in the shower
again. With persistence, discipline and desire survivors can slowly, yet steadily, build endurance and
positively impact their daily routines. Again, caregivers can help give motivation and feed a survivors
desire to make progress.
Lori Ann Bravi, MS, OTR/Lis a Level IV Occupational Therapist
at the Rehabilitation Institute of Chicago where she specializes in
Neurorehabilitation and serves as a faculty member with the RIC
Academy. She was awarded the Baskin Award in Research for her
publication in Topics In Stroke and is a two-time recipient of the
Buchanan Fellowship for her research in stroke rehabilitation.

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11

The First-of-Its-Kind
Network Supports
Stroke Policy Agenda

y life is consumed with two passions

number one, raising my three children
and number two, doing anything and
everything I can to help others who have
survived a stroke, says Lenice Hogan, a member of
National Stroke Associations steering committee for
the Stroke Advocacy Network, which launched in
2010. I will work as long and as hard as I can until
the day comes that not one more person suffers a
stroke, she declares.
Hogan, a three-time stroke survivor (the last and
strongest was five years ago at age 39) is just one
example of the enthusiasm and energy encompassed
by the Stroke Advocacy Networks seven-member
steering committee that supports stroke policy issues.
The purpose of the Stroke Advocacy Network
is to speak out on issues that will make a positive impact on the care and quality of life for stroke
survivors and their families. Through survivor and
caregiver surveys and expert-led strategic planning sessions, National Stroke Associations Stroke
Advocacy Network has created a policy agenda to
frame all of its activities. The agenda, refined by the
steering committee, works to enlist the support of
governmental decision makers to:
Improve access to stroke care.
Enhance standards of care delivery and coverage.
Expand the support available to stroke survivors
who return to work and school.
The steering committee is made up of people of
various ages, professions and stroke experiences from
throughout the U.S. Their experiences with stroke
have empowered them to donate their time, effort and

Story By
Irene mIddleman thomaS
empathy to help others learn more about stroke and
to make a difference through political advocacy. The
network is designed to engage decision makers at all
levels of government to improve access to and delivery
of stroke care and to improve the overall quality of life of
stroke survivors as well as their caregivers and families.
The formation of the Stroke Advocacy Network is
the most recent example in a long history of organizational commitment to supporting the seven million
stroke survivors and their caregivers in the U.S., says
Jim Baranski, CEO of National Stroke Association.
With an aging baby boomer population and
healthcare reform at the forefront of the current
congressional agenda, the time is perfect for our
organization to engage in a strategic advocacy effort.
Research shows that individuals have a powerful
voice when speaking to legislatorseven more influential than lobbyists. We want to do everything we
can to keep the diverse array of stroke survivor issues
bright on legislators radar screens, says Baranski.
One steering committee member is Eric Sarno, 39,
who suffered a stroke at 36 years old. A veteran of
over one hundred triathlons (including three Ironman
races) Sarno didnt know much about strokes when
he had his. I definitely did not think I was at risk for
having a stroke, but now I know that anyone can be
at risk, he says.
Sarno, a senior sales representative for an international biotech company that makes oncology medicine, speaks publicly in his home state of Wisconsin
about strokes. I was at a point in my recovery to be
able to articulate some of what I have been through
and I wanted to help others. So I offered to help

I will work as long and as hard as I can until the day

comes that not one more person suffers a stroke.

lenice hogan

12

Spring 2011

StrokeSmart

National Stroke Association and they asked me to sit

on the steering committee.
Although he does have some residual cognitive and
visual/spatial aftereffects from his 2007 stroke, Sarno
is fortunate to be back in his career. He participates
in the steering committees monthly conference calls
and plans to attend the legislative Lobby Day meeting
in Washington D.C. scheduled for summer 2011. The
event gives the opportunity for key advocates to participate in a face-to-face advocacy boot camp and
visit legislators on Capitol Hill.
National Stroke Association is very excited to bring
together a group of inspired and committed stroke
advocates to receive training on advocacy and to
apply that training on Capitol Hill, says Baranski.
He continues, Lobby Day will be a great opportunity to empower advocates to share their personal
stories in a way that can make a big difference for
all stroke survivors and their families. Most people,
including our elected leaders, know what a stroke is.
However, they may not realize that stroke will touch
as many as 795,000 individuals and their families in
the U.S. this year alone, and that it can affect anyone
regardless of age, gender or race. They also may
not know that there is hope after stroke. We want
our advocates to give a hopeful face to stroke and
to effectively discuss issues that will be hot on the
Congressional agenda at the time of the Lobby Day.
Legislative change is needed to provide appropriate care to individuals who have survived a stroke,
explains another steering committee member, Loretta
M. McLaughlin, past CEO of Magee Rehabilitation.
McLaughlin has been involved in stroke and disability awareness and advocacy programs, specifically
related to barriers to Medicare reimbursement.
On the acute care side, there is no requirement that
someone having a stroke should be taken to a stroke
center. Most EMT protocols require that patients not
defined as trauma patients be taken to the closest hospital, regardless of that hospitals capability to treat the
patient. This needs to change, McLaughlin adds.
McLaughlin is excited about the steering committees goals and direction. She says the most important
tasks so far are to set up priorities to make systemic
changes and to create a cohesive message spanning
acute care, post-acute care and community integration, particularly job reentry.
StrokeSmart

ThinGS You CAn Do

ToDAY To MAke A
DifferenCe

The Stroke Advocacy Network Action Center

at stroke.org/actioncenter provides access to the
Advocacy Toolkit and other resources to help you
become an informed and influential advocate.
Visit the Action Center today to help you get
started on the following five steps to effective
advocacy:
1. Join the Stroke Advocacy Network
Sign up for the Stroke Advocacy Network at
stroke.org/actioncenter. Youll receive email
advocacy tips, invitations to participate in
advocacy training webinars, policy updates and
timely prompts to reach out to legislators.
2. Learn About Your Government
Understanding how government works and which
legislators are working on the issues that are
important to you is a critical piece to becoming
an informed and effective advocate.
3. Share Your Views with LegislatorsWrite,
Call or Visit
Reach out and build relationships with your
legislators. Keeping their fingers on the pulse
of the people is a top priority for legislators and
their staffs. The communications that matter most
are from their own constituents.
4. Vote
The U.S. was built on the premise that self
government is a natural right of every citizen.
Exercise your right to vote in all local and
federal elections.
5. Speak up
Talk to your peers, colleagues, family, friends,
strangers and the media about stroke and how
it has specifically affected you. Share why you
are passionate about working with the Stroke
Advocacy Network and ask directly for support
of your cause.

After being featured in a StrokeSmart article,

Hogan was contacted by others from around the
nation. She explains how she got involved with
stroke advocacy. As I spoke with more and more
people, it became clear to me that the younger
survivors were really not being served well with
regard to getting their lives back, dealing with
depression and the anxiety of having another
strokeall while trying to raise a family and
return to work.
www.stroke.org

13

Hogan started a local support

group that was soon sponsored
by the University of Nebraska
Medical Center Neurology
Department. Hogan also writes a
blog for the Omaha World Heralds
livewellnebraska.com and coordinates several media events to help
raise awareness of stroke issues.
Hogans story, titled Inspirational
Stroke Survivor, is presented on
youtube.com
Steering committee member
and stroke survivor, Karen
Dionne, reports about how the
group has affected her from the
first conference call meeting.
One comment had a huge
impact on me. A member said
that this group will be the voice
representing the seven million
other stroke survivors around
the country. That is so powerful.
Im honored to be a part of such
a network helping survivors.
Dionne is a stroke activist who
co-founded an online support group called Reclaiming
Ourselves, for young adult stroke
survivors and their families.
The steering committee has
been busy developing an hourlong webinar and online action
center (stroke.org/advocate and
stroke.org/actioncenter). The
group has come up with a meaty
list of program objectives and
components. Its target audiences
are stroke survivors, caregivers,
family members, support group
leaders and members, healthcare professionals and National
Stroke Association staff and
board members.
Hogan says, One of the biggest values that this steering
committee adds initially is
providing a place where survivors and caregivers can get
information and begin to educate
14

Spring 2011

Lenice Hogan, Karen Dionne

and Loretta McLaughlin sit on
the Stroke Advocacy Network
steering committee.

Other members of the Stroke

Advocacy Network steering committee include:
Victoria Dienst, mother of a
pediatric stroke survivor and
a member of National Stroke
Associations Executive Board
Judi Johnson, stroke survivor, Nurse Consultant,
HealthQuest and a member of
National Stroke Associations
Rehabilitation and Recovery
Advisory Board
Rich Zorowitz, MD, Chief of
Department of Physical Medicine
and Rehabilitation, Johns
Hopkins Bayview Medical Center
and a member of National Stroke
Associations Rehabilitation and
Recovery Advisory Board.

themselves on what can be done

to help make the system work
better. One very important part
of helping survivors receive
proper care is to educate those
policy decision makers about the
issues and problems that we face
to help us remove any and all
roadblocks to receiving proper
care and rehabilitation. This
group is the first of its kind to
connect, organize and advocate
for better stroke awareness to
improve the policies that surround stroke care. I am thrilled
Irene Middleman Thomas is a freelance contribto be able to be a part of such a
utor to many publications. She writes about health,
wonderful grassroots movement. travel, lifestyles and business, among other topics.

StrokeSmart

Caregivers Corner

Get Help
Paying for Care
Financing Your Loved Ones
Healthcare
By Pa ul G ad a

Apply for Disability from Social Security

If a survivor is no longer able to work after a stroke,
and has paid FICA taxes, he or she may qualify for
Social Security Disability Insurance (SSDI). SSDI
provides monthly income and makes it possible to get
healthcare through Medicare. Individuals are eligible
for Medicare 24 months after the date they qualify for
SSDI. Also, they may be able to extend COBRA insurance coverage for 11 additional months if they receive
SSDI benefits.
Because it can be a long process to apply for SSDI,
consider getting help early on from an experienced
SSDI representative.

See If High-Risk Insurance is Available

Most states have high-risk insurance pools that offer
insurance to people with health problems. These plans
can be expensive, but they may be the best option if
someone does not qualify for other insurance.
The new healthcare law has set up a Pre-existing
Condition Insurance Plan (PCIP). Plans may vary from
state to state, but they should cost less than insurance
from the high-risk pool. Someone must be uninsured
for six months to qualify for these plans.
Each state also has a Medicaid program that offers
health coverage to some people with low incomes,
including people with disabilities. Find out about
your states Medicaid program at healthcare.gov.

Choose the Best Medicare Plan

People who qualify for Medicare face a maze of
options. The choices can be confusing, but it is
StrokeSmart

andriy Solovyov

stroke affects even more than the mind and

body; it can also impact someones finances.
Just as the body needs care and rehabilitation, a stroke survivors finances also need tending to
adjust to a loss of income and rise in healthcare costs.
The following tips can help caregivers manage these
financial and healthcare needs for their loved ones.

important that you help the stroke survivor choose

the plan that best meets his or her needs. The wrong
plan could mean paying a lot more for care.
Look for a plan that will cover the special services
needed for stroke care. For example, some Medigap
plans cover more of the costs of skilled nursing care.
Depending upon where you live, you may be able to
get a Medicare Special Needs Plan (SNP) for stroke
survivors. A plan like this tailors its benefits, doctors
and drug coverage to best meet stroke care needs.

Lower the Cost of Care

Another place to save money is on prescription
drugs. If a loved one is on Medicare, he or she may
qualify for the Extra Help program. Some states have
State Pharmaceutical Assistance Programs that help
people pay for prescriptions. Also, the company that
makes a drug might have a program to help pay for
it. Most stroke centers have a financial counselor to
help find ways to pay for care, so do not be shy about
asking for help.
Paul Gada is an attorney and personal financial planning director
for Allsup.

ReSouRCeS

The following organizations can help caregivers and

stroke survivors with financial issues:
National Stroke association SSdI: stroke.org/ssdi
administration on aging: aoa.gov or 202-619-0724
allsup: NSa.allsup.com or 888-841-2126
HealthCare.Gov: healthcare.gov
Medicare: medicare.gov or 800-633-4227
www.stroke.org

15

Technology

Advocacy Toolkit Goes Online

New Stroke Advocacy Network Offers Help

ational Stroke Association takes pro-health

advocacy to the next level with the recent
launch of the Advocacy Toolkit, part of the
Stroke Advocacy Networka grassroots legislative advocacy program started in 2010. The Advocacy
Toolkit is a powerful new resource loaded with information to help the first-time advocate. It is located
at stroke.org/sankit and describes a variety of action
items, both large and small, that can be used to reach
and influence legislators. Its designed to help people
who are passionate about preventing and recovering
from stroke become more effective stroke prevention
and recovery supporters.
Nine different pages, including background
information about how the legislative process
works and a variety of resources and worksheets,
can help you easily get involved. It also offers
different strategies and ideas for finding and
approaching lawmakers at the local, regional and
national levels.
The section called 8 Things You Can Do to Make a
Difference, provides several simple suggestions for
getting started. For example you can:
Vote for issues and candidates that support
stroke legislation.
Share your story with others to create better
awareness about prevention and recovery.
Participate in or help organize fundraising efforts.
Make a donation to National Stroke Association so
they can keep providing educational programs and
materials as well as survivor and caregiver support.
To gain confidence when discussing the most upto-date facts about strokes, the Advocacy Toolkit also
provides a variety of fact sheets with information about
prevention, risk reduction and recovery.

William howell

by Jo an C hrist en s e n

Our goal is to help stroke survivors and their

caregivers become effective and influential advocates
by creating a step-by-step resource to guide them
through the action steps they can take, explained
Jim Baranski, CEO of National Stroke Association.
We spent months working on the content to get the
core pieces into an easy-to-use format. We intend to
continue enhancing the Advocacy Toolkit with more
advanced recommendations in the future.
The Advocacy Toolkit helps you connect and begin
to take action that can help improve the care and
quality of life for stroke survivors throughout the U.S.
Getting involved and lending a helping hand can
make a difference. Participating and contributing
to the legislative process allows concerned survivors, caregivers and health-conscious individuals to
become part of the solution that brings meaningful
change and better support and services to stroke survivors and the people who help care for them.
In the big picture, actively engaging today in a network
that supports stroke survivors is a vital first step along
a road that will eventually lead to reducing the risk and
consequences of stroke for future generations.
Joan Christensen has an MS in health education from the University of
Utah and is a freelance writer based in Winter Park, Colo.

Make an even Bigger CoMMitMent to Stroke PoliCy advoCaCy

the advocacy toolkit at stroke.org/sankit offers a complete set of documents to help you get more deeply
involved in the legislative process. Learn how to:
Develop and share your personal story with legislators.
Use 10 handy tips for communicating effectively with lawmakers.
Download the step-by-step tactics to use when calling, writing or visiting to a representative.
host a site visit for legislators.
16

Spring 2011

StrokeSmart

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