GArDenS - National Stroke Association

l i f e st yl e | r e c o v e ry | r e s e a r c h | p r e v e nti o n
Easy-to-Ride
Cruiser Bikes
Social Media
Support Groups
Why You Need to
Know About PFOs
Caregivers’
Concerns: Ask
the Doctor
The Song and
Spirit of
Angela Bofill
Therapeutic
Gardens
How you can benefit from
the healing power of plants
i s su e 3 | 2012
w w w. s troke .org
Uncontrollable
crying?
Uncontrollable
laughing?
For people with dementia, stroke, traumatic brain injury or MS,
it could be a sign of PseudoBulbar Affect – PBA.
If you or someone you care for suddenly bursts out crying or
laughing for no apparent reason, it may be due to a neurologic
condition doctors call PBA. Though frequently mistaken for
depression, PBA is actually the result of a short circuit in the
areas of the brain that control emotional expression. This
causes episodes of crying or laughing that are often sudden and
exaggerated or do not match what the person is feeling inside.
Today, there’s NUEDEXTA® – a prescription medication
specifically approved to treat PBA. In a clinical trial, many
patients experienced fewer PBA episodes within the 1st
week of taking NUEDEXTA. What’s more, many patients
were completely free from PBA episodes at the end of
the study. Your results may vary. To learn more, visit
NUEDEXTA.com or call 1-855-4NUEDEX (468-3339).
Important Safety Information for patients
NUEDEXTA® (dextromethorphan hydrobromide and quinidine sulfate)
20mg/10mg capsules are approved for the treatment of pseudobulbar
affect (PBA). PBA is a medical condition that causes sudden, frequent
and involuntary bouts of crying and/or laughing in people living with
certain neurologic conditions or brain injuries. NUEDEXTA is not
approved to treat emotional symptoms other than involuntary crying
and/or laughing that may occur with certain neurologic conditions.
NUEDEXTA and certain other medicines can interact causing serious
side effects. People taking MAOIs (within the preceding or following
14 days), quinidine, or quinidine-related drugs, and certain other
medications should not take NUEDEXTA. Tell your doctor about all
medicines, herbs, and vitamins you are taking before you start or
while you are taking NUEDEXTA.
Some people can have an allergic reaction to NUEDEXTA. Call your
doctor right away if you experience lightheadedness, chills, fever,
nausea, or vomiting while taking NUEDEXTA.
NUEDEXTA may cause serious side effects, including changes in
heart rhythm (QTc prolongation). Tell your doctor if you or a family
member has or ever had any heart disease or problems. If you have
certain heart problems, NUEDEXTA may not be right for you. Your
doctor may test your heart rhythm (heartbeats) before you start
NUEDEXTA. If you feel faint or lose consciousness, call your doctor
right away.
© 2012 Avanir Pharmaceuticals, Inc. All Rights Reserved. NUE-0371-ADV-0213
NUEDEXTA may make you dizzy. Be extra careful not to fall, especially
if you have a hard time walking or a problem with falling.
The most common side effects of NUEDEXTA are diarrhea, dizziness,
cough, vomiting, weakness, swelling of feet and ankles, urinary tract
infection, feeling like you have the flu, abnormal liver tests, and gas. These
side effects were seen in 13% or less of patients taking NUEDEXTA.
Those are not all the possible side effects of NUEDEXTA. Tell your doctor
about any side effect that bothers you or does not go away.
For more information, please refer to the Brief Summary on
the following page. This important safety information is not meant
to replace discussions with your doctor.
You are encouraged to report negative side effects of prescription
drugs to the FDA. Visit www.fda.gov/medwatch or call 800-FDA-1088.
Ask your doctor if NUEDEXTA could help you
take back control.
Visit NUEDEXTA.com
Consumer Brief Summary Information
NUEDEXTA® (new-DEX-tuh)
(generic name = dextromethorphan hydrobromide and
quinidine sulfate) Capsules
Read this patient information carefully before you start taking NUEDEXTA.
This sheet does not replace talking with your doctor. If you have any
questions, ask your doctor or pharmacist.
What is NUEDEXTA?
• NUEDEXTA is a prescription medicine approved to treat pseudobulbar
affect (PBA).
• PBA is a medical condition that can occur in patients with certain nervous
system diseases or brain injuries, and causes sudden, frequent, and
involuntary episodes of crying and/or laughing.
• NUEDEXTA can help to reduce involuntary episodes of crying and/or
laughing.
You should not take NUEDEXTA if you…
• Are taking other drugs that contain quinidine, quinine, or mefloquine.
• Have a history of hypersensitivity reactions to quinidine, quinine, or
mefloquine.
• Are taking drugs that interact with NUEDEXTA and cause changes in heart
rhythm (such as thioridazine or pimozide).
• Are taking, or have taken, drugs called monoamine oxidase inhibitors
(MAOIs) in the past 14 days. Wait at least 14 days after stopping
NUEDEXTA before you start taking an MAOI.
• Have ever had low white blood cell counts, hepatitis, or a disease
called lupus.
• Have ever been allergic to dextromethorphan (commonly found in some
cough medicines).
• Or your family have certain heart problems including heart failure, an
abnormal heart rhythm (such as QTc prolongation), history of arrhythmia,
or complete AV (heart) block without a pacemaker.
NUEDEXTA may cause the following serious side effects:
• Allergic reactions with lightheadedness, chills, fever, nausea, or vomiting.
Discontinue NUEDEXTA if these occur.
• Hepatitis has been seen in patients taking quinidine, an ingredient in
NUEDEXTA. Discontinue if this occurs.
• Fast or irregular heartbeats. If you have certain heart conditions or
are taking certain medicines, your doctor may test your heart rhythm
(heartbeats) before you start NUEDEXTA. Stop NUEDEXTA and tell your
doctor immediately if you feel faint or pass out.
• If you take antidepressants known as SSRIs or tricyclics, you may have
confusion, high blood pressure, fever, restlessness, sweating, and
shivering. Tell your doctor if you experience any of these side effects.
• Tell your doctor if you have ever been diagnosed with myasthenia gravis.
Taking NUEDEXTA along with other medicines.
NUEDEXTA and certain other medicines can interact, causing serious side
effects, and may affect the way NUEDEXTA or these other medicines work:
• SSRIs and tricyclic antidepressants. Your doctor may adjust the dose of
these medicines if used together with NUEDEXTA.
• If you are taking certain medicines, your doctor may test your heart
rhythm (heartbeats) before you start NUEDEXTA.
• Digoxin.
• Alcohol. Limit alcohol intake while taking NUEDEXTA.
These are not the only medicines that may cause problems when you take
NUEDEXTA. Be sure to tell your doctor about all medicines, supplements,
and vitamins that you take before starting NUEDEXTA. Before starting a
new medicine, remind your doctor if you are taking NUEDEXTA.
What are the most common side effects of NUEDEXTA?
Thirteen percent (13%) or less of patients reported:
• Dizziness. If you are unsteady on your feet or if you have fallen before,
be careful while taking NUEDEXTA to avoid falling.
• Diarrhea
• Cough
• Vomiting
• Weakness
• Swelling of feet and ankles
• Infection in kidneys or bladder
• Symptoms of the flu
• Abnormal blood tests of how your liver is working
• Passing gas
These are not all of the possible side effects of NUEDEXTA. Tell your
doctor if you have any side effect that bothers you or does not go away.
How should I take NUEDEXTA?
• Take NUEDEXTA exactly as your doctor prescribes it.
• For the first 7 days, take one (1) capsule at the same time every 24 hours
(a total of 1 capsule each day).
• On day 8 and every day thereafter, take one (1) capsule every 12 hours
(a total of 2 capsules each day).
• Do not take more than 2 capsules in a 24-hour period.
• If you miss a dose of NUEDEXTA, do not take a double dose the next time.
Just take the single capsule at the next usual time.
• NUEDEXTA may be taken with or without food.
If your PBA symptoms do not improve or if they get worse, contact your
healthcare provider.
Do not give NUEDEXTA to other people, even if they have the same
symptoms that you have. It may harm them. In addition, the need for
treatment should be periodically reassessed as PBA symptoms may
spontaneously improve in some patients.
Store NUEDEXTA at room temperature.
Keep NUEDEXTA and all medicines out of reach of children and pets.
What are the ingredients in NUEDEXTA?
Active ingredients: Each brick red gelatin capsule has 20 milligrams of
dextromethorphan hydrobromide and 10 milligrams of quinidine sulfate.
Inactive ingredients: Croscarmellose sodium, microcrystalline cellulose,
colloidal silicon dioxide, lactose monohydrate, and magnesium stearate.
This page gives you the most important but not all information about
NUEDEXTA.
• If you would like to know more, talk with your doctor or healthcare
provider.
• You can ask your doctor or pharmacist for more information about
NUEDEXTA that is written for healthcare providers.
• If you want more information, go to www.NUEDEXTA.com or call
1-855-4NUEDEX (1-855-468-3339).
You are encouraged to report negative side effects of prescription drugs
to the FDA. Visit www.fda.gov/medwatch or call 800-FDA-1088.
Marketed by Avanir ® Pharmaceuticals, Inc., Aliso Viejo, CA 92656
1-855-4NUEDEX (468-3339)
www.NUEDEXTA.com
NUEDEXTA and AVANIR are trademarks
of Avanir Pharmaceuticals, Inc.
© 2011 Avanir Pharmaceuticals, Inc.
Rev. Date December 2011
NUE-0315-ADV-1112
10
Chief Executive Officer | Jim Baranski
Publisher | Amy McCraken
Editor | Cara McDonald
Copy Editor | Dana Lang
Art Director | Lindsay Burke
Contributing Writers
Joan Christensen | Sara Palmer
Lisa Pogue
National Stroke Association Board Members
Michael D. Walker, M.D. – Chairman
George Davis Jr. – Vice Chairman
contents
volume 11 | issue 3
feature
Jazz singer’s show goes on after a stroke takes her voice
departments
index of advertisers
4 support
Social Media for Younger Stroke
Survivors—a Caring Community 24/7
AMS Vans. . . . . . . . . . . . . . . . . . . . . . . . . . . . . .13
7prevention
Communication
Partner. . . . . . . . . . . . . . . . . . . .Back Cover
Understanding the Connection between
PFOs and Stroke
8rehabilitation & Recovery
The Ronnie Gardiner Rhythm
Music Method
Avanir Pharmaceuticals
. . . . . . . . . . . . . . . . . . . . . . . . . . . Inside Cover,1
Dorsi-Lite. . . . . . . . . . . . . . . Back Cover
Innovative Neurotronics. . . . . . . . . .3
Caring for Your Adult Child after
a Stroke: Parents Ask the Expert
Power Access. . . . . . . . Back Cover
Sleep Safe Beds. . . . . . . . . . . . . . . . . . . 13
Tibion. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .3
Theracycle. . . . . . . . . . . . . .Back Cover
in every issue
5 Get involved
2
strokesmart maga zine
ADVERTISING POLICY STATEMENT
The acceptance of advertising in this publication does not constitute or imply endorsement by National Stroke Association of
any advertised product or service. National Stroke Association
strongly recommends that people ask their doctors before
using any medicine or therapy. National Stroke Association
accepts no responsibility for any claims made in any advertisement in this publication.
StrokeSmart™ is published five times a year 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.
Member Corporate Alliance Board
Chairman Level
Allergan, Inc.
Boehringer Ingelheim Pharmaceuticals, Inc.
Genentech, Inc.
Executive Level
Medtronic, Inc.
Bristol-Myers Squibb Company/Pfizer, Inc.
Partnership
Director Level
ACORDA Therapeutics
Avanir Pharmaceuticals
Lundbeck
Patterson Medical
www.stroke.org
800-STROKES (800-787-6537)
6 Gear & Gadgets
issue 3
Subscriptions | 800-787-6537
Dynamic
Arm Sling. . . . . . . . . . . . . . . Back Cover
Myomo. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13
Volunteer in Healing Gardens for
Improved Recovery
Valerie Ireland – Chairman Emeritus
Dorsi-Strap. . . . . . . . . . . . .Back Cover
9caregiver’s corner
12Lifestyle
Hon. Samuel K. Lessey Jr. – Chairman Emeritus
Advertising or Editorial | Amy McCraken
[email protected] · 303-593-1268
10the show goes on
Howard M. Brenner
Edward F. Cox
Michael Darling
Phillip Gorelick, MD, MPH
Daniel F. Hanley, MD
C. Martin Harris, MD
Gen. James B. Peake, MD
Robert Shapiro
Dave Sproat
Carla Smith, CNM
Tim Van Biesen
2 012
back
cover
Marketplace
StrokeSmart™ is printed on 20 percent recycled
(10 percent post-consumer waste) paper using only
soy-based inks. Our printer meets or exceeds all
Federal Resource Recovery Act (RCRA) standards.
Stroke Smart Ad_7x4.75.pdf
1
4/12/12
8:28 AM
Has stroke limited
your mobility?
C
M
Y
CM
MY
Can help you overcome foot drop
CY
CMY
K
The WalkAide system can help lift your
foot with every step, promoting a more
natural walking pattern with less fatigue.
Talk to Debbie
WalkAide User
since 2006
WalkAide.com
Like us at facebook.com/WalkAide
To find a nearby WalkAide clinician or to receive a free information packet,
visit WalkWithStroke.com, or call 800-684-5738.
© 2012, Innovative Neurotronics, Inc. All rights reserved.
L173 R1
Activated by Intent
The Tibion Bionic Leg is the only wearable, robotic trainer
that is activated by the patient’s intent to move. It is used by
clinical therapists on the mobility impaired and is designed to
strengthen stance, improve gait, and enhance overall motor
learning. An added benefit of the device is the significant
protection it provides for both patient and therapist.
Call 877.784.2466 or visit www.tibion.com
©2012 Tibion Corporation
Tibion_1-2Page_Ad.indd 1
5/14/12 4:14 PM
w w w. s t r o k e . o r g
issue 3
2 012
3
S U P P O R T g roups — c h a m p i o n s o f hop e
Social Media for Younger
Stroke Survivors—a Caring
Community 24/7
Yahoo and Facebook pages offer a world of support
By Joan Christensen
risti Jones was only 29 when she had
check in at www.facebook.com/groups/strokeforFBsupport/. According to Jones, some social media groups for surviher brainstem stroke 12 years ago. And with two young
vors can occasionally be unfriendly to members—a situation
children, ages 5 and 10, she had a lot of questions about
that Jones
won’t tolerate. As the administrator, she and a
how to manage her very different life circumstances. So, she got
moderator monitor all the postings on at
online looking for information and advice for stroke survivors in
least a daily basis, and in-fighting or
her age group who were facing similar parenting and social chalnegative personal messages are not
lenges. But she couldn’t find much.
allowed on the group wall.
“I belonged to a couple of groups [at first]
Jones points out other advanbut noticed that all the younger survivors
tages of her online group besides
were scattered around,” Jones explains.
global reach. “I’ve had various
“Since younger survivors have different
forms of aphasia in the past 12
issues than their slightly older counterparts,
years and found that putting my
I thought they should have their own group
thoughts into written words has
of peers to discuss those issues.”
helped me find the right words to
Since the majority of strokes—about 72
express myself verbally,” she says.
percent—occur in those 65 or older, most
And, she has noticed improved
support and information is geared
communication in other group
toward older survivors. But younger
members. “The more I see a sursurvivors may be juggling school,
Social Media Sites
vivor post messages, the more
growing careers, young families, new
for Stroke Survivors
the posts improve as the years go
relationships and other issues that
by,” she observes. make their experience very different.
For younger stroke survivors and
In reaching out to provide a
So Jones created an online suptheir caregivers, Jones’ original site is:
new resource for other young
port group for younger survivors
survivors, Jones has filled a gap
who post messages and chat at http://
http://health.groups.yahoo.com/group/
that has helped her as much as
health.groups.yahoo.com/group/
stroketalkforyoungpeople/ group members.
stroketalkforyoungpeople/. Her pri“I saw a need for other young
ority is to provide coping strategies,
For survivors of all ages and
survivors like me that needed someinformation, tips and friendship.
their family and caregivers, Jones’
where ‘just for them,’ she says. “I
Jones’ motivation for taking the
consider many of these people dear
support group online was simple.
Facebook page, Stroke Talk, can be
friends even though I’ve never met
“Not everyone can attend an actual
found at: www.facebook.com/groups/
them personally. I would be lost if
physical group for various reasons
strokeforFBsupport/
I could no longer help others like
but with an online group, members
myself,” she admits.
can get on their computers in priA companion site to Stroke Talk
For Jones, the online support
vacy and get support any day, any
has proved invaluable. “My first
time, wherever they are.”
is co-administered by Jones and her
group and its earliest members
The 408 current members are from
friend and fellow four-time survivor
have seen me through so much,
all over the world, including survivors
Donna Wallace. The United Stroke and
including many ups and downs
from the United Kingdom, Ireland,
Total Brain Injury Survivors Facebook
over the years,” she confides. “It
Australia, New Zealand, South Africa,
page is also geared to survivors of all
has made all the difference in not
Africa and the Philippines.
ages and their caregivers, and can be
only my life but in my recovery and
In the past few years, Jones has
I wish to share it with others. If this
expanded her online presence with
found at: www.facebook.com/groups/
group impacts just one person I’ve
Stroke Talk, a Facebook page that
Unitedstrokeandbraininjury/
served my purpose.”
welcomes all ages. Its 273 members
k
4
strokesmart maga zine
issue 3
2 012
GE T IN V O LV E D
Submit a
Nomination
for the
RAISE Awards
D
Virtual
Health Fair
Open through
August
o you know a person or
group working in your community to spread the word
about stroke awareness and prevention?
Nominate them for a RAISE Award.
The Raising Awareness in Stroke
Excellence (RAISE) Awards recognizes
individuals and groups for taking stroke
awareness activities to new heights.
Awards will be given in seven categories,
but hurry—the nomination period closes
July 31.
T
Go to www.stroke.org/RAISE
and honor someone today.
he 2012 Virtual Health Fair is now open at
www.stroke.org/vhf2012 through August. Don’t miss any
of the 10 webinars covering post-stroke issues, including
nutrition, finance, emotional issues and much more. Download free
brochures and fact sheets in the online library, and visit booths in
the exhibit and product halls for information on stroke and strokerelated products.
Get involved with the
National Stroke Association
www.stroke.org.
Support
To donate online, please visit stroke.org/donate.
To donate by mail, please fill out and return this portion with your donation to:
National Stroke Association, 9707 E. Easter Lane, Suite B, Centennial, CO 80112.
Enclosed is my gift of $25 _____ $50 _____ $75 _____ $100 _____ $250 _____ $500 _____ Other $ _________
Form of Payment:
Check
MasterCard
Visa
AMEX
Discover
Please make checks payable to National Stroke Association.
Card Number
Expiration Date
SS1203ASK
Name
Address
City
State
Telephone
Email
ZIP
Support National Stroke Association today. Together we can save lives.
w w w. s t r o k e . o r g
issue 3
2 012
5
GEA R & GA D GE T S
Hands-Free Faucets,
Easy Hair Drying,
Comfy Cruiser Bikes
Schwinn
Meridian Cruiser
This three-wheeled cruiser bike has two
sturdy rear wheels for stability—no tipping, no falls! A lightweight frame makes
the bike easy to get going. The cruiser
seat and swept-back handlebars allow
for a comfortable riding position, and the
basket allows you to stow your helmet
and an extra jacket, or carry groceries.
Price: Starts at $280
To find nearby retailers: www.schwinnbikes.com
(click “where to buy” at top of page)
Foot Pedal Faucet
When hands can’t grip well, a slippery faucet handle can be hard to manage. The
Pedal Works Hands-free Faucet Controller lets you turn water on and off with a
touch of your toe. The pedal can be installed in the sink base cabinet and connected with stainless steel hoses to any regular faucet.
Price: Pedals start at $348.99 for aluminum finish and vary by finish
(800) 377-8033
www.activeforever.com/p-695-pedal-works-hands-free-faucet-controller.aspx
Hair Dryer Stand
For people with limited upper body strength or use of only one arm, the hands-free hair
dryer stand allows you to position your hair dryer on a vanity or countertop while styling.
The dryer stand is flexible and lets you aim the dryer in different directions.
Price: $26.95
(800) 377-8033
www.activeforever.com/p-147-hair-dryer-stand.aspx
6
strokesmart maga zine
issue 3
2 012
pr e v e n t i o n
Understanding the
Connection between
PFOs and Stroke
By lisa pogue
n estimated one in five Americans has a Patent
Foramen Ovale (PFO) or, in simple terms, a hole in
the heart. Since PFOs often have no symptoms, many
people don’t know they have one until a medical condition
like a stroke or transient ischemic attack (TIA) occurs. When
someone with no obvious risk factors suddenly has a stroke,
doctors will check to see if it was caused by a PFO.
Having a PFO may actually increase your risk for stroke
and TIA by up to 25 percent. Because they are the most
common type of heart defect, it’s important to know about
PFOs and how to treat them.
A
Where Did This “Hole” Come From?
All people are born with flap-like openings in their hearts.
The opening typically closes by itself shortly after birth. But
in some cases an open flap remains between the two upper
chambers of the heart and can eventually allow a blood clot
from one part of the body to travel through the flap and up to
the brain, causing a stroke.
Getting Diagnosed and Finding Treatment
An ultrasound of the heart can show doctors if a PFO is
present. The next step is to ask about treatment options.
Currently, there are two main treatments for PFO: medicines
or PFO closure, which can include open-heart surgery or a
newer procedure that closes the flap without major surgery.
Medications don’t treat the actual PFO, but they can control clotting factors in the blood, making stroke-causing clots
less likely to form. These blood-thinning drugs must be taken
daily to be effective.
Open-heart surgery is another option to close the PFO. But,
as with any major surgery, you should weight the benefits and
risks with your doctor.
New Techniques
A new approach has been developed enabling doctors to seal
the PFO without major surgery. An implanted closure device,
resembling a tiny two-ended umbrella, is delivered to the PFO
using a small tube that is threaded to the heart from a vein in
the thigh.
The implant is inserted through the flap and released
from the tube. It expands and tissue grows in and around
the implant to seal the PFO from both sides. This procedure
requires minimal recovery time. The U.S. Food and Drug
Administration allows this treatment method only for people
who don’t respond to the medicines and have already had a
second stroke.
Research on whether medicine or PFO-closure procedures
are the better option is ongoing. Doctors are working to find
out which is better at helping reduce the risk of recurrent
stroke and, in order to produce meaningful and productive
studies, researchers need clinical trial participants.
For more information about clinical trials, visit the
Clinical Trials Resource Center at www.stroke.org (under the
“Recovery” and then “Stroke Surivors” tabs).
For more information about PFOs as risk factors
for stroke, visit www.stroke.org under the tab
“Prevention” and select “Uncontrollable Risk.”
w w w. s t r o k e . o r g
issue 3
2 012
7
r e h a b i l i tat i o n & r e c ov e r y
The Ronnie Gardiner
Rhythm Music Method
R
onnie Gardiner is a pioneer in his field.
A dancing, smiling and healing pioneer who has been
turning stroke survivors’ lives around for nearly 20 years.
The talented jazz musician enjoyed years of fame in Sweden
before becoming a tourist entertainer in the Canary Islands
near Morocco. Struggling with his own depression, Gardiner
began speaking to doctors and researching how the brain
works. From this research, he developed the Ronnie Gardiner
Rhythm Music (RGRM) Method.
Today, the 78-year-old hosts lectures around the world,
from Stockholm to Tel Aviv, educating facilitators about his
special brand of music therapy. The RGRM Method uses music,
rhythm, sound, and color-code rehabilitation techniques in a
classroom setting to stimulate and improve mobility, reading,
speech, self-esteem, body image, motor skills and more.
The multisensory method is often used to help patients with
brain injuries and central nervous system disorders by combining audio, visual and tactile elements and kinetic energy
with rhythm, music and movement codes.
Music therapy stems from the idea that damaged pathways
in the brain can sometimes be retrained to act how they once did.
It’s the same idea linking playing cards and memory improvement in dementia patients. Stroke survivors have credited the
RGRM Method for helping them move and even walk again.
“A man who had a stroke 20 years ago had been unable
to read a newspaper or book. He was 80 years old when he
started training with me,” nurse and RGRM teacher Carina
Svahn says. “Now he reads the newspaper every day and he
plows through thick books without the least difficulty.”
8
strokesmart maga zine
issue 3
2 012
By lisa pogue
Gardiner’s home base is in Sweden and though the RGRM
Method has been successfully used in Europe for more than
15 years, acknowledgment in the U.S. is slow going, RGRM
coordinator Mike Martin says.
“Likely this is because of how our medical system runs and
the fact that most therapies are insurance-driven,” he says.
Martin arranges speaking engagements and training sessions for facilitators, aiming to further American acceptance of
the therapy and recruit stroke survivors in the U.S.
Sessions run from 60 to 90 minutes and participants attend
RGRM classes two to three times a week. Gardiner has dedicated followers who have been taking the classes for 20 years
and are still making gains, Martin says.
According to Martin, more than 75 percent of all participants show gains in a number of areas—whether it’s socialization, depression, balance or reduced use of medications.
Professionals say the therapy’s rehabilitation benefits
include improved creativity, energy and confidence, and even
helping adults and children overcome learning disabilities.
“The biggest gain that everyone talks about is having a
sense of belonging,” says Martin. “Unlike one-on-one physical or occupational therapy sessions, RGRM maintains an
emphasis on small groups. We feel it’s very necessary for a
stroke survivor to know they are not alone.”
Visit www.rgrminternational.com to learn more
about the RGRM Method and to read testimonials
from stroke survivors.
CA R EGI V E R ’ S C O R NE R
As k t h e E x p e r t:
Caring for Your Adult
Child after a Stroke:
Parents Ask the Expert
Dear Dr. Palmer,
My daughter had a stroke when she was
16. Her moods were up and down, she
couldn’t focus and couldn’t read other
people’s feelings. After months of rehab,
she went back to school. Her mood swings
improved and she made decent grades, but
she began drinking and hanging out with
an older boy who took advantage of her
(she was a good kid before her stroke).
With counseling, she quit drinking, made
new friends and graduated. Now she’s
21, attends a local college and has a nice
boyfriend. She lives at home but wants to
move to the dormitory. Will she make bad
decisions because of her stroke—or has she
outgrown that? How can we help her be
independent, but safe and healthy?
Some strokes cause personality changes
that persist after physical recovery is
complete. These can include impaired
ability to recognize others’ emotions,
assess risks, control impulses or make
rational decisions. Of course, many teenagers experience these problems, even
without a stroke! Your daughter seems
improved, probably due to recovery from
her stroke and normal maturation. But if
you—or she—think her stroke is affecting
her decision making, an evaluation by a
neuropsychologist can help. This would
identify any remaining difficulties, and
provide guidance on how to manage
them. You can help your daughter live
safely and successfully on campus—with
support. Most colleges have an Office
on Disability that helps with academic
issues and adjustment to campus life
and a health center that provides counseling and substance abuse prevention
programs. Your daughter’s primary care
doctor can educate her about safe sex
and birth control, to help her stay healthy.
Most important, when she moves to the
dorms, stay in touch and be ready to
back her up when needed. Your support
will give her security to gradually take on
more adult responsibilities.
Dear Dr. Palmer,
My son is 40 years old and had a massive stroke three years ago. He was paralyzed
on his right side, severely aphasic and unable to swallow. After a short time in rehab,
he went to a nursing home. He was given a bad prognosis and recovery was very
slow. His wife couldn’t handle it and she left him. Eventually he could swallow again
and now walks with a cane. His aphasia is better but he can’t work and needs help
with anything requiring talking or writing. My son moved in with us when he left the
nursing home and he’s now divorced. We are in our late 70s and our biggest worry
is what will happen when we die? Who will take care of our son?
Every caregiver needs a back-up plan. First, find someone who can help your
son if you become ill. If a family member isn’t available, find a local agency
that provides paid caregivers. Next, identify someone who’s able to care for
your son if you die or become disabled. Ideally, this should be someone close
to your son, familiar with his wishes and needs, and able to make decisions in
his best interests—perhaps a sibling or close friend. That person can be legally
designated as power of attorney to pay bills and make financial decisions;
health care agent to make medical care decisions; or trustee to manage funds
you set aside for your son’s care. The documents and procedures for these
designations vary from state to state. An elder care lawyer, estate lawyer,
and/or certified financial planner can help you make the best possible plan.
Dear Dr. Palmer,
My daughter was 35, single and working when she had a sudden stroke. She is
weak on her right side and has aphasia. She’s been with me since discharge from
rehab six months ago and I am devoted to her. I drive her everywhere, dress and
shower her, manage her bills, get her to bed at a reasonable hour, and screen calls
so she doesn’t have to talk if she’s tired. I’m with her 24/7 and help with anything
she needs. I don’t want her to struggle. She should concentrate on getting better
and not worry about making her bed or fixing meals. Even though I am doing so
much for her, she’s been depressed recently and doesn’t seem to be progressing. I
don’t understand what went wrong. Is there something else I should do to help?
You need to do less for your daughter, not more! A common trap for devoted
caregivers is helping too much, unintentionally discouraging the stroke survivor from doing things for herself that help her recover. By practicing bedmaking or cooking, your daughter can use her brain and muscles to increase
strength and coordination. She may struggle with simple tasks, be at a loss for
words or walk at a snail’s pace. But only by using her arms, legs and speech can
she progress. Due to her stroke your daughter lost her ability to work or live
independently. If she’s not given a chance to do anything at home, she may feel
pretty useless—and possibly guilty—leading to depression. Screening her calls
could also contribute to depression by limiting the control she has over her life
and the support she gets from friends (it also reduces her chances to practice
talking). You can help most by doing less for her and encouraging her to do
whatever she can by herself. Let her decide when to go to bed or talk to friends.
She needs some help, but she’s still an adult. If she can’t be left alone, ask one
of her friends to take her out or visit with her while you take a break. Socializing
with friends may improve her mood, and you may enjoy the change of pace.
Dr. Palmer is the co-author of When Your Spouse Has a Stroke: Caring for Your Partner,
Yourself, and Your Relationship (www.hopkinsmedicine.org/rehab/faculty/spalmer.html).
Send your questions to [email protected]
w w w. s t r o k e . o r g
issue 3
2 012
9
The show
goes on
a jazz singer loses her voice,
but not her courage
By Lisa Pogue
A
ngie Bofill has performed on Soul Train and The Tonight Show. She sparkled
when she presented Michael Jackson with his American Music Award for
Thriller in 1984. Then, six years ago at age 52, the beloved Latin jazz singer
from the Bronx suffered two near-fatal strokes that paralyzed her left side and
impaired her famous vocal cords. For the first time in her life, music didn’t flow. »
10
strokesmart maga zine
issue 3
2 012
OPPOSITE: A vibrant Angie relearned
how to walk and talk after two
strokes. LEFT: The Angela Bofill
Experience combines storytelling,
live music and video performances.
Today, Bofill’s speech remains a
little jagged, a little start-and-stop, and
the use of her left arm hasn’t returned.
But that doesn’t keep her from taking
the stage and gracing the spotlight she’s
become so accustomed to living under.
The Angela Bofill Experience stage
show began in July 2010 and continues
to captivate audiences nationwide.
“My manager, Rich Engel,
came up with the idea,” Bofill told
BayTimes.com. “My fans really wanted to see me, (but) the
stroke damaged my vocal cords; no more singing.”
During her often sold-out performances, Bofill uses a cane
to walk on stage to her chair where she narrates the moments
and music of her life, sharing ups and downs and successes
and misfortunes. Talented female soul and jazz singers Maysa
and Melba Moore alternate singing Bofill’s hits while a highlight reel of her career plays on a screened backdrop. It’s not
unusual for fans to welcome Bofill with a standing ovation and
to erupt with applause throughout the hour-long show.
The artist typically performs a couple of shows a month
and has an occupational therapist travel with her. Though
traveling across the country can be exhausting, Bofill says she
enjoys performing and listening to the female vocalists share
her music. “They sing beautifully,” she says. “It’s interesting
to hear their interpretations of my songs.”
The Angela Bofill Experience has appeared in New York,
San Francisco, Virginia and Washington, D.C. Audiences and
music reviewers rave about the remarkable show, calling Bofill’s
performance a magical and inspiring rebirth.
Keeping the Faith
Patience and Family
Today, Bofill lives in Northern California with her sister.
Her daughter lives nearby and when she talks about her new
grandson, Christopher, who turned 1 in April, her voice is joyful.
“He is a wonderful reason to stick around,” she says.
Her simple and honest advice to other stroke survivors is
to keep the faith. “Share with people. It helps a lot,” she says.
“You need a lot of patience. Be close with family.” Bofill also
loves her dogs—a 3-year-old pug named Momo and 13-year-old
Max, a Shih Tzu. “They’re great therapy and stress relievers,”
she says.
Bofill goes on daily walks and eats healthy foods. Her
daughter is a professional chef and stops by to make wholesome meals like tofu burgers on pita—one of her mother’s
favorites. Though everything is a little harder to do now, Bofill
says she continues working towards goals, such as walking
with a cane.
“I ditched the wheelchair,” she laughs. “Don’t like it.
Makes me look cripple.”
Bofill’s manager says he hopes to have a movie made
of her life and would ultimately like to take The Angela
Bofill Experience to Broadway.
When the Washington Post asked Bofill if she thought her
singing voice would come back, she said, “God only knows.
Rather not sing than sound bad.”
In 2006, Bofill was riding home from a California restaurant with her brother-in-law when she felt “an explosion”
inside her head. “There was a pop,” she recalls. “My left side
Visit www.angelabofill.com for more information or catch
The Angela Bofill Experience on TVOne’s UnSung on July 2.
Life in the Spotlight
photo by gor megaera
collapsed.” She had experienced a
major stroke.
Both her mother and father suffered strokes, she says, attributing
her own stroke to genetics. After the
stroke, doctors discovered Bofill had
high blood pressure and diabetes.
Bofill was hospitalized and initially required 24-hour care. Doctors said they didn’t think she
would walk or talk again. She powered through three and a
half years of rehabilitation before recapturing her ability to
walk and master motor skills. It took more than a year for her
speech to return.
“They said I wouldn’t walk, I wouldn’t talk. I am walking
and talking,” Bofill shares on her website. “I should be dead,
but I am still here and grateful to be here!”
Bofill battled post-stroke depression. She moved in with her
sister and, with no health insurance, she watched her hospital
bills grow. Supplements, including B-complex, helped her get
through the depression, while celebrity friends held benefit
concerts to raise money and fans, friends and family sent donations to help alleviate healthcare costs.
It has been a long, arduous road to recovery, Bofill says.
“Hard to deal with patience,” she adds. “Too long of a recovery.
But I’m grateful. Very grateful for every second I’m alive.”
Bofill earned her success at a very young age. She began
singing when she was four. At 12, she wrote her first song, and
at age 17, she wrote the hit “I Try.” The Latin jazz and R&B
artist grew up listening to Motown, Aretha Franklin, Tito
Puente and Celia Cruz. She explains on her website: “Growing
up in Harlem, if you didn’t have the latest James Brown or a
Supremes forty-five single, you weren’t hip. We always had
Latin music playing in the house because of my parents’ love
for music. In fact, my father would sit in and sing with the
great Cuban bandleader, Machito.”
Bofill’s unique sound dominated airwaves in the 1980s and
’90s. She churned out 10 studio albums and one live album
and sold millions of records worldwide. She was dubbed a
Latin bombshell, and fans swooned over Bofill’s distinct blend
of jazz, pop, R&B and Latin. She sold out stadiums in Europe,
Africa and Asia, performing hits such as “Angel of the Night,”
“I’m on Your Side,” “Tonight I Give In,” and “This Time I’ll
Be Sweeter.”
w w w. s t r o k e . o r g
issue 3
2 012
11
l i f e st y l e
Volunteer in
Healing Gardens
for Improved
Recovery
Stroke survivors unearth the healing power of plants
By lisa pogue
T
he year-round horticultural therapy
program at the Rehabilitation Institute of Oregon at
Legacy is booming, with garden volunteers reaping
health benefits that range from lowered blood pressure to
improved motor skills.
Healing gardens have been around since ancient times and
it’s widely known that gardening is a natural spirit-lifting destressor. But horticultural therapy, or patients seeking treatment through therapist-led gardening, is a fairly new idea, says
Dr. Teresia Hazen, Therapeutic Gardens and Horticultural
Therapy Coordinator at Legacy Health.
Healing gardens are popping up at hospitals and rehabilitation facilities around the country. “There is such universal
appeal and meaningful activity in nature and gardens,” says
Hazen. To benefit from healing gardens, stroke survivors can
volunteer for garden duties or current patients can enroll in
more structured therapeutic programs.
Hazen oversees multiple therapeutic gardens at several medical centers and works with patients recovering from stroke,
brain injuries and motor vehicle accidents, along with those
with Parkinson’s disease and Alzheimer’s. Horticultural therapy
is credited for exercising hands, fingers and arms, building
stamina and coordination and stimulating attention span.
“Everyone has their own personal blend of rewards,” says
Dr. Marie Valleroy of Legacy Health. “Many of us, disabled
or not, are not geared toward working out for fitness. But if
we can improve strength, balance, flexibility, memory, organization and more while we are enjoying ourselves and possibly
yielding homegrown tomatoes as well...gardening is a truly
elegant form of therapy.”
Horticulture therapy can be an indoor activity as well.
Patients gather around tables for gardening activities such as
starting plants from cuttings and researching growth patterns.
“They’re just so amazed they can be sitting in the hospital
doing gardening,” Hazen says.
Gardening supports continued stroke recovery, health
maintenance and quality of life, she adds. Stroke survivors
learn skills they can take home for continued rehab even after
inpatient therapies have ended. It’s all about learning adaptive
strategies, building strength and endurance, improving balance
and memory, and problem solving.
Hazen recommends horticultural therapy patients keep a
three-ring binder with monthly tabs where ideas and notes can
12
strokesmart maga zine
issue 3
2 012
be recorded and pouches can store plant tags. “Write daily or
weekly journal notes for each month to keep a record of your
activities and plans,” she says.
Hazen also recommends checking with your physician
before resuming gardening or beginning new gardening activity
after any health issue.
To find a healing garden near you, call or email the volunteer department at a local hospital, nursing home or assisted
living facility and ask about their volunteer program for garden
care. Be sure to let the volunteer director know if you prefer
to work with another person, a small team or alone. There are
many tasks to be done year-round.
It’s important to learn about the requirements before
making a commitment, Hazen says. Hospitals typically need
volunteers to make a commitment of one year with a weekly
four-hour shift.
healing gardens
at a glance
Here are some techniques you
might see in therapeutic gardens:
Wide, gently graded wheelchairaccessible entrances and paths
Raised beds and containers for ease
of access
Adapting the use of tools to turn a
disability into an ability
Sensory-stimulation environments
with plants selected for fragrance,
texture and color
Utilizing accessible greenhouses that
bring the garden indoors for yearround enjoyment
“My arm has
woken up.”
Virtually Eliminates
Entrapment and Falls
These ultra-safe beds meet or exceed FDA
guidelines on the 7 Zones of Entrapment .
Up to thirty-six inches of rail protection.
40-year-old woman treated 20 years post-stroke
Regain Your
Independence & Mobility
If you have limited use of your arm due to
muscle weakness from a stroke or another
neurological condition, Myomo may be able
to help.
For a listing of our
upcoming trade
shows, please
visit our website.
and options for adults or children.
www.SleepSafeBed.com
(866) 852-2337
Callaway, VA • (540) 334-1600
The Myomo mPower is a comfortable upper
arm brace that uses the body’s own biological
signals to restore arm movement and assist
you with your Activities of Daily Living. It is
used at leading rehabilitation clinics around
the country and has been clinically proven
effective in patients from 2 days to 21 years
post-stroke. Myomo is FDA cleared for use in
clinical and home settings.
To learn if Myomo can
help you, contact us at
(877) 736-9666 or
[email protected]
www.myomo.com
w w w. s t r o k e . o r g
issue 3
2 012
13
m a r k e t p l ac e
Call or email
us for your
free DVD!
Theracycle 100
A stroke made
exercise too hard.
My motorized Theracycle
makes exercise easy!
Let our “smart motor” help you
exercise to improve strength,
endurance, flexibility
and feel better.
Special
$500 discount
for StrokeSmart
subscribers
•30 day money-back guarantee
Theracycle 200
800-367-6712
www.theracycle.com
Open
Your
Door to Independence
• Residential
interior/exterior
doors
• Easy-to-install,
low-cost unit
• Remote controls
including ECU,
sip & puff
The Power to Improve Lives




 
 

 
 

 



 


 


800-344-0088 automaticdoor.biz
