stroke smart revista
TRANSCRIPT
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SPRING 2011FESTYLE | RECOVERY | RESEARCH | PREVENTION
StrokeSmartStrokeSmart
National
STROKEAssociation
GET CONNECTED
WITH ONLINE
ADVOCACY TOOLKIT
GOLF TOURNAMENTBRINGS ABOVE PAR
AWARENESS
INCREASE ENDURANCE: SLOW AND STEADY WINS THE RACE p10
NEED HELP PAYING
FOR HEALTHCARE?p15
p16
p6
STROKEADVOCACYNETWORK
Stroke PolicyGets Boost from
p12
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2 Spring 2011 StrokeSmart
Expressing emotions shouldnt beleft 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 arethought to have symptoms of PBA
More than a million Americans suffer from PBA, including peoplewith other underlying neurologic conditions such as Lou Gehrigsdisease (ALS), multiple sclerosis (MS), and traumatic brain injury
2010 Avanir Pharmaceuticals, Inc. All Rights Reserved. PBA-0070-ADV-0911
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
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2 Spring 2011 StrokeSmart
StrokeSmartStrokeSmartSPRING 2011 - VOLUME 10 | ISSUE 2
FEATURE
12 STROKE ADVOCACYNETWORK
New steering committee refines
policy agenda and plans to hit
Washington D.C.
DEPARTMENTS
6 CHAMPION OF HOPEDeanna Coopersmith creates a
family-friendly golf tournament to
raise funds and awareness.
9 PREVENTIONChanges in lifestyle choices can
reduce stroke risk. Be sure youre
taking these steps.
10 REHABILITATION & RECOVERYThe greatest successes happen over
time, not overnight, when increasing
endurance during rehabilitation.
15 CAREGIVERS CORNERFollow these steps to help find and
pay for the right care after a stroke.
16 TECHNOLOGYThe online Advocacy Toolkit
provides several action items to get
connected with key policy makers.
TM
ofTable Contents
7 GET INVOLVED
8 GEAR & GADGETS
17MARKETPLACE
IN EVERY ISSUE
ADT Companion Services . . . . . . . . . .1A g g r e n o x . . . . . . . . . . . . . . . . . . . . 3 , 4 , 5A l le rgan. . . . . . . . . . . . . . . .Back CoverAMS Vans . . . . . . . . . . . . . . . . . . . . . .11Avanir Pharmaceuticals . . Inside CoverCommunication Partners. . . . . . . . . .17D o r s i - S t r a p . . . . . . . . . . . . . . . . . . . . . 1 7D o r s i - L i t e . . . . . . . . . . . . . . . . . . . . . . . 1 7Dynamic Arm Sling. . . . . . . . . . . . . . .17Life Alert . . . . . . . . . . . . . . . . . . . . . . .17Myomo . . . . . . . . . . . . . . . . . . . . . . . .11Power Access . . . . . . . . . . . . . . . . . . .17Rebuild Fitness . . . . . . . . . . . . . . . . . .14
Sleep Safe Beds . . . . . . . . . . . . . . . . .11T h e r a c y c l e . . . . . . . . . . . . . . . . . . . . . . 1 7W a l k A i d e . . . . . . . . . . . . . . . . . . . . . . . . 1
INDEX OF
ADVERTISERS
StrokeSmartStrokeSmart
SPRING2011LIFESTYLE| RECOVERY|RESEARCH |PREVENTIONStrokeSmartStrokeSmart
National
STROKEAssociation
GET CONNECTED
WITH ONLINE
ADVOCACY TOOLKIT
GOLFTOURNA MENT
BRINGSABOVEPAR
AWARENESS
INCREASEENDURANCE:S LOWAND STEADYWINSTHERACEp10
NEED HELP PAYINGFOR HEALTHCARE?p15
p16
p6
STROKEADVOCACYNETWORK
Stroke PolicyGets Boost from
p12
9
TM
National
STROKEAssociation
10 15
Chief Executive Officer |Jim Baranski
Publisher |Amy McCraken
Managing Editor |Pam Peters
Copy Editor |Dana Lang
Art Director | Amelia DuRocher
Contributing Writers
Lori Ann Bravi | Joan ChristensenAnnalise de Zoete | Paul Gada
Irene Middleman Thomas
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
[email protected] 303-816-7368
ADVERTISING POLICY STATEMENTThe 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.
StrokeSmartis published quarterly by National Stroke
Association, 9707 E. Easter Lane, Suite B, Centennial, CO 80112,
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.
StrokeSmartis printed on 20 percent recycled(10 percent Post-consumer waste) paper using onlysoy-based inks. Our printer meets or exceeds all Fed-eral Resource Recovery Act (RCRA) standards.
WWW.STROKE.ORG800-STROKES
(800-787-6537)
MEMBER
CORPORATE ALLIANCE BOARD
Chairman LevelAllergan, Inc.
Boehringer Ingelheim Pharmaceuticals, Inc.Genentech, Inc.
Executive LevelBristol-Myers Squibb Pharmaceuticals/
Sanofi Pharmaceuticals PartnershipMedtronic, Inc
Director LevelAllsup, Inc.
AstraZenecaAvanir Pharmaceuticals
GE HealthcareMedtronic, Inc.Penumbra, Inc.
GalinaBarskaya
ImagebyDHuss
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25% of people whorecover from their firststroke will have another
stroke within 5 years.Ask your doctor about AGGRENOX an FDA-approvedprescription medication to lower the risk of stroke following atransient ischemic attack (TIA) or stroke due to a blood clot.
In a 2-year clinical study, AGGRENOX given twice dailywas proven more effective than low-dose aspirin (25 mg) forlowering the risk of stroke following a TIA or stroke due to ablood clot.
To learn more and get a valuable savings coupon,visit www.aggrenoxAd.com and join the Taking SmartStepsprogram.
DOCTOR PORTRAYAL
Important Safety InformationAGGRENOX 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 anti-inflammatory drugs (NSAIDS), or who have the combination of asthma, runny nose and nasal polyps. AGGRENOXshould 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 bleedingmay 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 allmedications 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 liveror 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/medwatchor 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
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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 rell. 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 AGGRENOXif you:
are allergic to any of the ingredients in AGGRENOX.
See the end of this leaet for a list of ingredients in
AGGRENOX.
are allergic to non-steroidal anti-inammatory drugs
(NSAIDS)
have asthma in combination with runny nose and nasal
polyps
Do not give AGGRENOX to a child or teenager witha 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 rst 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-infammatory
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 rst 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 theusual 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 ushing
sweating
restlessness
weakness or dizziness
a fast heart rate
ringing in the ears
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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 functiontests 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
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 aboutside effects. You may report side effects to FDA at
1-800-FDA-1088.
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 healthprofessionals. 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.
Ridgeeld, 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
AG79505CONS
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6 Spring 2011 StrokeSmart
Champion Hope
One minute I had ahealthy husband, thenext I was planning a
funeral, said Deanna Coopersmith.Her husband Scott was a healthy32-year-old banker when he diedfrom stroke. He was the father of anactive two-year-old son and showedno warning signs of stroke. His deathshocked everyone.
Scott was too young to passaway. Never in a million years did Ithink he would die of stroke, saidCoopersmith. Losing her husband just weeks beforeher sons third birthday, the summer and fall of 2009
were challenging for her. On Thanksgiving, Scottsfavorite holiday, Coopersmith spent the day in bed.
However, that was not her
same course of action just oneyear later. In 2010, Coopersmithbegan proactively fulfilling herpromise to make somethingpositive out of something nega-tive. She organized a strokeawareness and fundraising golf tournament, begana masters degree in Group Therapy and provided aThanksgiving meal to the neurological intensive careunit (ICU) that had treated Scott.
Together with Scotts brother Craig, Coopersmithorganized the first annual Scott Cory CoopersmithStroke Awareness Golf Tournament held on the one-
year anniversary of Scotts passing. The two workedhard to make the event successful by soliciting spon-sors, coordinating a silent auction, running a raffleand creating t-shirts. Because they wanted to includefamilies, they also engaged a clown and a bouncyhouse so people could bring their kids to the tourna-ment. Dozens of people attended and the event raised
approximately $10,000 for National Stroke Association.Because she basically lived in the hospital waitingroom for a week after Scott had his stroke, this
November Coopersmith and her in-laws broughtThanksgiving dinner to the families and staff inthe ICU of Florida Hospital South. Some of thenurses working that day were the same people
who had helped care for Scott.
Coopersmith and Scotts familyhope to continue both the golftournament and their newThanksgiving tradition each year.
Coppersmiths stroke-champi-oning actions and hopeful atti-
tude illustrate what she has said about her husbandsstrokethat she refused to let it take [her] life too.Coopersmith is passionate about talking about youngpeople and stroke. My husbands death was such
an eye-opening event for so many people, she said.Coopersmith herself hadnt known that stroke couldbe fatal. Even after discovering Scott had suffered astroke, she assumed that he would face rehabilitationchallenges but would survive.
Frustrated with the lack of stroke publicity and vis-ibility, Coopersmith works hard to tell others aboutthis deadly disease. People dont even know whatthe symptoms [of stroke] are, she said. For thatreason, and to honor her husband, this young widow
and single mother has turned her devastating lossinto meaningful action, diligently raising awarenessabout the reality of stroke at any age.
Golf Event Raises Awarenessof Stroke at Any AgeCoopersmiths Event Honors Husband and Educates Others
of
BY ANNALISE DE ZOETE
Never in a millionyears did I think he
would die of stroke.
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www.stroke.org 7StrokeSmart
Name
Address
City State ZIP
Telephone Email
Support National Stroke Association today. Together we can save lives.
Enclosed is my gift of $25 _____ $50 _____ $75 _____ $100 _____ $250 _____ $500 _____ Other $ __________
Form of Payment: Check MasterCard Visa AMEX DiscoverPlease make checks payable to National Stroke Association.
Card Number Expiration Date
Get Involved
SS
1102ASK
Visit National Stroke Associations new onlineStroke Awareness Resource Center (stroke.org/awareness) for all you need to get
educated about stroke. Find event-hosting toolsincluding an event calendar, resources for presentingstroke information to communities and groups,ideas for social media outreach, E-cards, a strokehistorical retrospective and more. Join us in May.
Faces of Stroke Awareness CampaignRaise stroke awareness in a personal way by partici-
pating as a Face of Stroke through National StrokeAssociations new stroke awareness campaign. Stroke
champions canupload a per-sonal story andphoto to thecampaigns gal-lery and/or sendE-cards to lovedones. Watch forspecial dailyFaces profiles on stroke.org. Join thousands of othersin educating about stroke in a personal and inspiring
way at stroke.org/awareness.
May 23: Live iHOPE Ask the Experts withDr. Steve Page
National Stroke Associations iHOPEprogram offerson-demand webinars and live Ask the Experts ses-sions. 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 toview other opportunities, visit stroke.org/ihope.
May Is National StrokeAwareness Month
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.
SupportStroke Awareness and Education
Stroke Awareness Resource Center Launches
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8 Spring 2011 StrokeSmart
&
The product descriptions included in Gear & Gadgetsare for informational purposes only. A products inclusion in StrokeSmartdoes not imply endorsement by National Stroke Association nor does it guarantee the reliability or safety of the products listed.
Mobile Phone TriggersEmergency Response; Exerciser
Improves Strength
Hands-Free Control SystemUses Head Movements
The AccuPoint System movementtracking system from InvoTek letsstroke survivors control their com-puters with a wide range of move-
ments while discerning tremorsfrom intentional movements. Most
AccuPoint users control the mouseand type letters with head move-mentsbut any movement canbe used. The system mounts easilyon the back of a computer dis-play and plugs into the computer
with a USB cord. The small plasticreflector that works with the unit
attaches to the users foreheadcomfortably using double-sidedtape.Price: $1,495Phone: 479-632-4166Website: invotek.org
Device PerformsEmergency ResponseA Just5 phone is more than
simply a phone. This smart mobiledevice has: Emergency-response (ER)
function Large buttons for ease of dialing Speaking keypad that confirmswhich buttons are pressed
FlashlightThe ER function lets users preset
five phone numbers. When userspress the SOS button, the phonessiren attracts others nearby. It thentexts an urgent message to the five
preset numbers and dials them inprioritized order. Once someoneanswers a call, the phone auto-matically switches to loud-speakermode for easier communication.Price: $89.99Phone: 800-709-0509Website: just5.com
Hand Exerciser BuildsStrength in Hands, Arms,Fingers, Forearm and Ankles
Powerweb Ultimate is a versatilelimb exerciser that can strengthenthe fingers, thumb, wrist, forearm
and even the ankle. Available in sixdifficulty levels it can accommo-date almost any user. The 8-ounceexerciser includes an instructionbooklet with 39 different exercises.
Both hands can be exercised atonce, or a single finger isolated andexercised. Resistance can be modi-fied for specific needs by adjustinghand position and/or depth of
finger insertion. The PowerwebUltimate accommodates all handsizes and strength levels.Price: $45Phone: 888-570-8836Website: improvelife.com
Gear Gadgets
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www.stroke.org 9StrokeSmart
Weve all heard how important it is to exerciseand keep a healthy weight for countlesshealth reasons. Reducing the risk of a first
or second stroke is probably one of the most impor-tant. Although stroke is one of the leading causes ofdisability in the U.S., it is also possible to reduce onesstroke risk with lifestyle changes.
Lifestyle ChoicesPeople with high risk conditions (hypertension, dia-
betes, hyperlipidemia and atrial fibrillation) as well asthose with low risks should adopt the following life-style changes to reduce their risk of having a stroke.
Stop Smoking: Smoking greatly increases the riskof stroke and quitting is a major way you can reducestroke risk. As soon as someone stops smoking,stroke risk decreases. Get support from a smokingcessation program and drop the habit for good.
Get Moving: Exercise is another important way toreduce the risks of a stroke. With exercise equaling30 minutes of brisk walking, five times per week,
stroke risk can be reduced by as much as 24 percentaccording to stroke.org. Many activities count towardexercise including walking, swimming, dancing, gar-dening and house cleaning. For those new to exer-cise, check with a doctor first and work on making amanageable exercise plan.
Eat Healthier: Eating a diet high in fruits, vegeta-bles and whole grain foods can actually reduce onesrisk of stroke significantly. People who averaged eight
or moreservings offruits and
vegetablesper day aresignificantly lesslikely to have a stroke.
Although eight serv-ings a day sounds likea lot, even five can havean impact. Try citrus fruitsand vegetables high infolic acid, fiber and potas-sium, such as broccoli,kale and cauliflower. Inaddition to eating moreproduce, cut back on sodium (salt) and saturated as
well as hydrogenated fats. It is also important to beaware of food content, even in restaurantsto knowthe amounts of sodium and fats in each serving.
Consume Alcohol Wisely: While studies have
shown that one alcoholic beverage daily may lowerstroke risk, drinking more than two per day canincrease stroke risk. If you drink, do so moderatelyand remember that it can negatively interact withother drugs you might be taking. If you drink toomuch, cut back. If you dont drink alcohol, dont start.
Medical Issues
Be sure to visit your doctor regularly so he or shecan detect any silent factors that might lead to a
stroke. Medical issues such as the ones listed belowcan be controlled through medication, surgery andlifestyle changes. If you already are addressing theseissues, youre already lowering your stroke risk.Discuss any side effects youre experiencing from yourmedication with your doctor. Medical conditions thatgreatly increase the risk of stroke include: High blood pressure Atrial fibrillation Carotid artery disease
High cholesterol Diabetes Atherosclerosis
Control Your Stroke RiskExercise, Stop Smoking and Eat Healthier
Prevention
BY PAM PETERS, MANAGING EDITOR
GO FOR THE RAINBOWExperts recommend eating as many as eightservings of produce daily in every color of therainbow to receive enough of the beneficial vitaminsand nutrients for stroke risk reduction. Easy ways toincrease your fruit and vegetable intake include:
Drinking a glass of vegetable juice.
Pre-cutting vegetables and fruits for easysnacking and cooking.
Using herbs and spices (not salt) on vegetablesfor added flavor.
Adding grated vegetables to enrich soups, meatpatties, casseroles and sauces.
EmiliaStasiak
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10 Spring 2011 StrokeSmart
As an Ironman triathlete and occupational
therapist, I often tell my clients that theirrehabilitation after stroke is similar to my
training for a triathlon. It takes persistence, disciplineand desire to make progress as an athlete, just as itdoes to meet the short- and long-term goals in rehab.
There are many days when I wake up tired and donot feel like going to swim practice before work. ButI go because I know the importance of steadily andslowly building strength. There are also times when Ido not feel up for the 3-hour bike rides. It crosses my
mind that skipping a workout will not matter in thelong run. But once I get going, I always feel better andstronger. By mid-season, I find that climbing hills onmy bike for long stretches is actually easier and moreenjoyable because I did the prep work for my endur-ance in the off-season.
Endurance is a key factor in rehab after stroke. It isactually a very complex part of rehab because it mustbe built slowly, yet steadily, in order to positivelyimpact 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 thestrength that was lost. Stroke survivors must start
slowly and accept that building endurance again will
and shouldtake time if approached correctly. Keepingthis in mind, a survivor should work together with atherapist 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, oftenmistaking this for not making any progress at all. Asurvivor may feel ready to stand in the shower againrather than sit on a tub bench. But in reality the bodyis building the endurance needed to tolerate such a
complex activity. If someone is able to handle twominutes of standing at the start, consistency in rehab
will steadily increase those minutes to three, four,five and even more over time. The greatest successeshappen over time, not overnight.
Discipline is also very important when buildingendurance. It takes the guesswork out of deciding
whether or not to do the exercises or go to therapyevery day. Following a basic routine in order to stayactive will most likely directly increase endurance.
Committing to a program is committing to oneself.Survivors owe it to themselves to do those additionalrepetitions of each exercise every day, or add one new
Increase Your Endurance
BY LORI ANN BRAVI
Train Like a Triathlete with Discipline and Persistence
&Rehabilitation Recovery
BirgitteMagnus
MathiasWilson
Amriphoto
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www.stroke.org 11StrokeSmart
exercise to the routine weekly to increase strengthand endurance. Caregivers can help this processby giving the person encouragement and supportduring the rehab process.
Desire is one of the most important componentsof building endurance. I can encourage clients to
perform activities or exercises during a therapy ses-sion. However, I cannot make them do the programsat home. In order to see long-term changes that
will move them ahead, the survivor has to want toimprove. That is how they will notice six monthslater that they are now able to stand in the showeragain. With persistence, discipline and desire sur-
vivors can slowly, yet steadily, build endurance andpositively impact their daily routines. Again, care-givers can help give motivation and feed a survivorsdesire to make progress.
Lori Ann Bravi, MS, OTR/L is a Level IV Occupational Therapist
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y life is consumed with two passionsnumber one, raising my three childrenand number two, doing anything andeverything I can to help others who have
survived a stroke, says Lenice Hogan, a member ofNational Stroke Associations steering committee forthe Stroke Advocacy Network, which launched in2010. I will work as long and as hard as I can untilthe day comes that not one more person suffers astroke, she declares.
Hogan, a three-time stroke survivor (the last andstrongest was five years ago at age 39) is just oneexample of the enthusiasm and energy encompassedby the Stroke Advocacy Networksseven-membersteering committee that supports stroke policy issues.
The purpose of the Stroke Advocacy Networkis to speak out on issues that will make a posi-tive impact on the care and quality of life for strokesurvivors and their families. Through survivor andcaregiver surveys and expert-led strategic plan-ning sessions, National Stroke Associations Stroke
Advocacy Network has created a policy agenda toframe all of its activities. The agenda, refined by thesteering committee, works to enlist the support ofgovernmental decision makers to:
Improve access to stroke care. Enhance standards of care delivery and coverage. Expand the support available to stroke survivorswho return to work and school.
The steering committee is made up of people ofvarious ages, professions and stroke experiences fromthroughout the U.S. Their experiences with strokehave empowered them to donate their time, effort and
empathy to help others learn more about stroke andto make a difference through political advocacy. Thenetwork is designed to engage decision makers at alllevels of government to improve access to and deliveryof stroke care and to improve the overall quality of life ofstroke survivors as well as their caregivers and families.
The formation of the Stroke Advocacy Network isthe most recent example in a long history of organi-zational commitment to supporting the seven millionstroke 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 currentcongressional agenda, the time is perfect for ourorganization to engage in a strategic advocacy effort.
Research shows that individuals have a powerfulvoice when speaking to legislatorseven more influ-ential than lobbyists. We want to do everything wecan to keep the diverse array of stroke survivor issuesbright on legislators radar screens, says Baranski.
One steering committee member is Eric Sarno, 39,who suffered a stroke at 36 years old. A veteran ofover one hundred triathlons (including three Ironmanraces) Sarno didnt know much about strokes whenhe had his. I definitely did not think I was at risk for
having a stroke, but now I know that anyone can beat risk, he says.
Sarno, a senior sales representative for an interna-tional biotech company that makes oncology medi-cine, speaks publicly in his home state of Wisconsinabout strokes. I was at a point in my recovery to beable to articulate some of what I have been throughand I wanted to help others. So I offered to help
M
The First-of-Its-KindNetwork Supports
Stroke Policy AgendaSTORY BY
IRENE MIDDLEMAN THOMAS
The First-of-Its-KindNetwork Supports
Stroke Policy Agenda
M
StrokeSmart12 Spring 2011
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
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
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National Stroke Association and they asked me to siton the steering committee.Although he does have some residual cognitive and
visual/spatial aftereffects from his 2007 stroke, Sarnois fortunate to be back in his career. He participatesin the steering committees monthly conference callsand plans to attend the legislative Lobby Day meetingin Washington D.C. scheduled for summer 2011. Theevent gives the opportunity for key advocates to par-ticipate 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 strokeadvocates to receive training on advocacy and toapply that training on Capitol Hill, says Baranski.
He continues, Lobby Day will be a great oppor-tunity to empower advocates to share their personalstories in a way that can make a big difference forall stroke survivors and their families. Most people,including our elected leaders, know what a stroke is.However, they may not realize that stroke will touchas many as 795,000 individuals and their families inthe U.S. this year alone, and that it can affect anyoneregardless of age, gender or race. They also may
not know that there is hope after stroke. We wantour advocates to give a hopeful face to stroke andto effectively discuss issues that will be hot on theCongressional agenda at the time of the Lobby Day.
Legislative change is needed to provide appro-priate care to individuals who have survived a stroke,explains another steering committee member, LorettaM. McLaughlin, past CEO of Magee Rehabilitation.McLaughlin has been involved in stroke and dis-ability 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 strokecenter. Most EMT protocols require that patients notdefined as trauma patients be taken to the closest hos-pital, regardless of that hospitals capability to treat thepatient. This needs to change, McLaughlin adds.
McLaughlin is excited about the steering commit-tees goals and direction. She says the most importanttasks so far are to set up priorities to make systemic
changes and to create a cohesive message spanningacute care, post-acute care and community integra-tion, particularly job reentry.
After being featured in a StrokeSmartarticle,Hogan was contacted by others from around thenation. She explains how she got involved withstroke advocacy. As I spoke with more and morepeople, it became clear to me that the youngersurvivors were really not being served well withregard to getting their lives back, dealing with
depression and the anxiety of having anotherstrokeall while trying to raise a family andreturn to work.
The Stroke Advocacy NetworkAction Center
at stroke.org/actioncenter provides access to theAdvocacy Toolkit and other resources to help youbecome an informed and influential advocate.Visit the Action Center today to help you getstarted on the following five steps to effectiveadvocacy:
1.Join theStroke Advocacy Network
Sign up for the Stroke Advocacy Networkatstroke.org/actioncenter. Youll receive emailadvocacy tips, invitations to participate inadvocacy training webinars, policy updates andtimely prompts to reach out to legislators.
2.Learn About Your Government
Understanding how government works and whichlegislators are working on the issues that areimportant to you is a critical piece to becomingan informed and effective advocate.
3.Share Your Views with LegislatorsWrite,Call or Visit
Reach out and build relationships with yourlegislators. Keeping their fingers on the pulseof the people is a top priority for legislators andtheir staffs. The communications that matter most
are from their own constituents.4.Vote
The U.S. was built on the premise that selfgovernment is a natural right of every citizen.Exercise your right to vote in all local andfederal elections.
5.Speak up
Talk to your peers, colleagues, family, friends,strangers and the media about stroke and howit has specifically affected you. Share why youare passionate about working with the Stroke
Advocacy Networkand ask directly for supportof your cause.
THINGS YOU CAN DOTODAY TO MAKE ADIFFERENCE5
www.stroke.org 13StrokeSmart
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StrokeSmart14 Spring 2011
Hogan started a local supportgroup that was soon sponsoredby the University of NebraskaMedical Center NeurologyDepartment. Hogan also writes ablog for the Omaha World Heralds
livewellnebraska.com and coordi-nates several media events to helpraise awareness of stroke issues.Hogans story, titled InspirationalStroke Survivor, is presented on
youtube.comSteering committee member
and stroke survivor, KarenDionne, reports about how thegroup has affected her from thefirst conference call meeting.One comment had a hugeimpact on me. A member saidthat this group will be the voicerepresenting the seven millionother stroke survivors aroundthe country. That is so powerful.Im honored to be a part of sucha network helping survivors.Dionne is a stroke activist whoco-founded an online sup-
port group called ReclaimingOurselves, for young adult strokesurvivors and their families.
The steering committee hasbeen busy developing an hour-long webinar and online actioncenter (stroke.org/advocate andstroke.org/actioncenter). Thegroup has come up with a meatylist of program objectives and
components. Its target audiencesare stroke survivors, caregivers,family members, support groupleaders and members, health-care professionals and NationalStroke Association staff andboard members.
Hogan says, One of the big-gest values that this steeringcommittee adds initially is
providing a place where sur-vivors and caregivers can getinformation and begin to educate
themselves on what can be doneto help make the system workbetter. One very important partof helping survivors receiveproper care is to educate thosepolicy decision makers about theissues and problems that we faceto help us remove any and allroadblocks to receiving propercare and rehabilitation. Thisgroup is the first of its kind toconnect, organize and advocatefor better stroke awareness toimprove the policies that sur-round stroke care. I am thrilledto be able to be a part of such a
wonderful grassroots movement.
Other members of the StrokeAdvocacy Networksteering com-mittee include: Victoria Dienst, mother of a
pediatric stroke survivor anda member of National Stroke
Associations Executive Board Judi Johnson, stroke sur-vivor, Nurse Consultant,HealthQuest and a member ofNational Stroke AssociationsRehabilitation and Recovery
Advisory Board Rich Zorowitz, MD, Chief of
Department of Physical Medicineand Rehabilitation, JohnsHopkins Bayview Medical Centerand a member of National Stroke
Associations Rehabilitation andRecovery Advisory Board.
Irene Middleman Thomas is a freelance contrib-
utor to many publications. She writes about health,
travel, lifestyles and business, among other topics.
Lenice Hogan, Karen Dionneand Loretta McLaughlin sit on
the Stroke Advocacy Networksteering committee.
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www.stroke.org 15StrokeSmart
Astroke affects even more than the mind andbody; it can also impact someones finances.
Just as the body needs care and rehabilita-tion, a stroke survivors finances also need tending toadjust to a loss of income and rise in healthcare costs.The following tips can help caregivers manage thesefinancial and healthcare needs for their loved ones.
Apply for Disability from Social SecurityIf a survivor is no longer able to work after a stroke,
and has paid FICA taxes, he or she may qualify forSocial Security Disability Insurance (SSDI). SSDIprovides monthly income and makes it possible to gethealthcare through Medicare. Individuals are eligiblefor Medicare 24 months after the date they qualify forSSDI. Also, they may be able to extend COBRA insur-ance 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 experiencedSSDI representative.
See If High-Risk Insurance is AvailableMost states have high-risk insurance pools that offer
insurance to people with health problems. These planscan be expensive, but they may be the best option ifsomeone does not qualify for other insurance.
The new healthcare law has set up a Pre-existingCondition Insurance Plan (PCIP). Plans may vary fromstate to state, but they should cost less than insurancefrom the high-risk pool. Someone must be uninsuredfor six months to qualify for these plans.
Each state also has a Medicaid program that offershealth 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 PlanPeople who qualify for Medicare face a maze ofoptions. The choices can be confusing, but it is
important that you help the stroke survivor choosethe plan that best meets his or her needs. The wrongplan could mean paying a lot more for care.
Look for a plan that will cover the special servicesneeded for stroke care. For example, some Medigapplans cover more of the costs of skilled nursing care.Depending upon where you live, you may be able toget a Medicare Special Needs Plan (SNP) for strokesurvivors. A plan like this tailors its benefits, doctorsand drug coverage to best meet stroke care needs.
Lower the Cost of Care
Another place to save money is on prescriptiondrugs. If a loved one is on Medicare, he or she mayqualify for the Extra Help program. Some states haveState Pharmaceutical Assistance Programs that helppeople pay for prescriptions. Also, the company thatmakes a drug might have a program to help pay forit. Most stroke centers have a financial counselor tohelp find ways to pay for care, so do not be shy aboutasking for help.
Paul Gada is an attorney and personal financial planning directorfor Allsup.
Get HelpPaying for CareFinancing Your Loved OnesHealthcare
Caregivers Corner
BY PAUL GADA
RESOURCESThe following organizations can help caregivers andstroke 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
F
AndriySolovyov
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16 Spring 2011 StrokeSmart
National Stroke Association takes pro-healthadvocacy to the next level with the recentlaunch of the Advocacy Toolkit, part of the
Stroke Advocacy Networka grassroots legisla-tive advocacy program started in 2010. The AdvocacyToolkit is a powerful new resource loaded with infor-mation to help the first-time advocate. It is locatedat stroke.org/sankit and describes a variety of actionitems, both large and small, that can be used to reachand influence legislators. Its designed to help people
who are passionate about preventing and recoveringfrom stroke become more effective stroke preventionand recovery supporters.
Nine different pages, including backgroundinformation about how the legislative process
works and a variety of resources and worksheets,can help you easily get involved. It also offersdifferent strategies and ideas for finding andapproaching lawmakers at the local, regional andnational levels.
The section called 8 Things You Can Do to Make a
Difference, provides several simple suggestions forgetting 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 andmaterials as well as survivor and caregiver support.
To gain confidence when discussing the most up-to-date facts about strokes, the Advocacy Toolkit alsoprovides a variety of fact sheets with information aboutprevention, risk reduction and recovery.
Our goal is to help stroke survivors and theircaregivers become effective and influential advocatesby creating a step-by-step resource to guide themthrough the action steps they can take, explained
Jim Baranski, CEO of National Stroke Association.We spent months working on the content to get thecore pieces into an easy-to-use format. We intend tocontinue enhancing the Advocacy Toolkit with moreadvanced recommendations in the future.
The Advocacy Toolkit helps you connect and beginto take action that can help improve the care andquality of life for stroke survivors throughout the U.S.
Getting involved and lending a helping hand canmake a difference. Participating and contributingto the legislative process allows concerned survi-
vors, caregivers and health-conscious individuals tobecome part of the solution that brings meaningfulchange and better support and services to stroke sur-
vivors 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 alonga 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.
Advocacy Toolkit Goes OnlineBY JOAN CHRISTENSEN
Technology
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 deeplyinvolved 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.
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2010 Allergan, Inc., Irvine, CA 92612 All rights reserved.
www.SpasticityAnswers.com APC41DC10 110214
SpasticityAnswers.com is not intended to be a substitute for professional
medical advice, diagnosis, or treatment. Always seek the advice of your
physician or other qualied healthcare provider with any questions you
may have regarding a medical condition.
If you are living
with spasticity, or
caring for someone
who is, you may
have questions
Spasticity is a neuromuscular
condition in which muscles
contract and spasm, causing
stiffness and pain. It is the result
of a disorder or damage involving the
central nervous systembrain and spinal
cord. Spasticity is common for people
recovering from a stroke because the stroke
can disrupt the brains ability to send
messages properly to the muscles.
Stroke survivors may not be aware
of the link between stroke and spasticity.
Often, the healthcare team is focused solely on
preventing another stroke, while not spending
time on the management of the symptoms
of spasticity caused by the stroke. Spasticity
may or may not be discussed during the initial
recovery period because it does not affect
every stroke survivor, or it may take weeks or
months for symptoms to appear.
If you have suffered from a stroke and
think you have experienced symptoms
associated with spasticity, its important to
talk to your doctor.
Findout more about spasticity
Learnabout treatment options
Readstories from people living with spasticity
Get informationfor caregivers, and more!
Learn more about spasticity atSpasticityAnswers.com.
Why me? What should I do? Who can help me?
Why ask abouttreatment?
How do I tell others?
Can I get support? How do I get help? What are my options?
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