Stroke Smart Revista

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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


3/20


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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


7/20

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


8/20


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


10/20


&

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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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


12/20


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


13/20


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

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.Myomo is FDA cleared for use in clinical and home settings.

REACH -LIFT - HOLD

To find out if Myomo can help you,email us [email protected] call us at 877-506-3001,

to schedule a no-cost, no-obligation patient screening.

If you have limiteduse of your arm dueto muscle weaknessfrom a stroke orother neurologicalcondition, Myomomay be able to help.

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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


15/20

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



16/20

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.


17/20


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


18/20


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.

New Stroke Advocacy Network Offers Help

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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?

Am I alone?

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