hn Kawie - American Stroke Association

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StrokeAssociation.org
Changing Destiny
Singer Michelle Williams on
heredity and stroke risk
My Angel Zoey
Not all angels have wings
Understanding
Foot Drop
What it is and
how to treat it
Life at the Curb
Jive Talkin’
Let’s Go
Camping!
A weekend of recreation and
relaxation equals transformation
Survivor John Nunley with wife
and stroke camp director Marylee
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STAFF AN D C ON S ULTAN T S :
Laura Sol
Vice President
American Stroke Association
Debi McGill
Editor-in-Chief
Jon Caswell
Lead Editor
Pierce Goetz
Art Director
Lyanne Dupra
Advertising Sales
[email protected]
Contents
6
10
Cover Story
Cover photo courtesy of Monica Vest Wheeler
10Stroke Camps: Recreation,
Relaxation & Transformation
Most of us have fond memories of
summer camps, and now thanks to
groups in Illinois and California, stroke
families are able to make new memories.
“Stroke camp” is a weekend of rest,
recreation and the opportunity for
survivors to push their limits.
Features
Departments
6
Changing Destiny
Copyright 2012 American Heart Association
ISSN 1047-014X
Stroke Connection is ­published quarterly by the
American Stroke Association, a division of the
American Heart Association. Material may be
reproduced only with ­appropriate acknowledgment of the source and written ­per­mission from
the American Heart Association. Please address
inquiries to the Editor-in-Chief.
The information contained in this publication is
provided by the American Stroke Association
as a resource. The services or products listed
are not owned or provided by the American
Stroke Association. Additionally, the products
or services have not been evaluated and their
listing or advertising should not be construed
as a recommendation or endorsement of these
products or services.
StrokeAssociation.org
14
Gospel recording artist Michelle Williams
knows heredity is a double-edged sword:
she was born with huge talent and
significant stroke risk. A spokesperson
for Power To End Stroke, she shares her
family history of stroke and what she is
doing to reduce her risk.
2 Stroke Notes
4 Readers Room
18Everyday Survival
14
My Angel Zoey
21Life at the Curb
Survivor Jon Leavitt of Sykesville, Md.
rescued a young German shepherd
several years after his stroke. He did not
imagine that she, in turn, would rescue
him from post-stroke depression, fatigue
and TV marathons.
1 - 8 8 8 - 4 S T R O K E
Foot drop may make
walking awkward or even
dangerous, but there are
effective treatments.
John Kawie and the art of
post-stroke repartee
( 1 - 8 8 8 - 4 7 8 - 7 6 5 3 )
Researched
Reformulated
Redesigned
Always Respected
The American Heart Association proudly introduces a fresh, new look
to our nationally recognized nutrition icon — the Heart-Check mark. The
enhanced new look is just one of the improvements to our food-certification
program. Now we’re certifying even more heart-healthy foods — including
fish and nuts — to help meet our goal of dramatically improving the nation’s
cardiovascular health. And it’s easier than ever to spot this trusted
American Heart Association symbol in the grocery store.
heartcheckmark.org
©2011, American Heart Association 10/11DS5262
S T R O K E N OT E S | Connecting You to the World
Stroke &
Depression
A recent study
shows that
depression has
a big impact on
stroke and TIA
survivors.
Researchers, analyzing 1,450 adults with
blockage stroke and 397 with TIA, found:
• Three months after hospitalization,
depression affected 17.9 percent of stroke
patients and 14.4 percent of TIA patients.
• At 12 months, depression affected 16.4
percent of stroke patients and 12.8 percent
of TIA patients.
epression is more prevalent among stroke
and transient ischemic attack (TIA) survivors
than in the general population, researchers
reported in the American Heart Association
journal Stroke.
Most patients with stroke in the study had
only mild disability. Only a fraction of those with TIAs had severe
disability. Yet, depression rates were similar for each group.
“The similar rates of depression following stroke and
TIA could be due to similarities in the rates of other medical
conditions or to the direct effects of brain injury on the risk
of depression, but more studies are needed,” said Nada El
Husseini, M.D., M.H.S., an author of the study and a Stroke
Fellow in the Department of Medicine, Division of Neurology,
at Duke University Medical Center in Durham, N.C.
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STROKECONNECTION
SUMMER 2012
• Nearly 70 percent of stroke and TIA
patients with persistent depression still
weren’t treated with antidepressant therapy
at either the three or 12 month intervals.
“Patients need to be open about their
symptoms of depression and discuss them with
their physicians so that they can work together
to improve outcomes,” El Husseini said. “It is
important for physicians to screen for depression
on follow-up after both stroke and TIA.”
Patients with stroke who had persistent
depression tended to be younger, have greater
stroke-related disability and couldn’t work at
three months follow-up.
“Physicians may need to be more vigilant in
screening these patients because of their higher
risk for long-term and persistent depression,”
El Husseini said.
Reduce Your Risk!
Stroke survivors have poorly
controlled high blood pressure
alf of stroke survivors have poorly
controlled hypertension and poor rates
of blood pressure therapy, researchers
reported in a study presented at
the American Stroke Association’s
International Stroke Conference 2012.
According to the American Heart Association, people with
high blood pressure have twice the risk of stroke as those with
normal blood pressure. Treating hypertension or reducing
blood pressure is associated with reduced stroke risk.
The researchers reviewed the prevalence and control
of hypertension among 490 adult stroke survivors
who participated in the National Health and Nutrition
Examination Survey from 1999 to 2004. In addition,
researchers did a mortality follow-up through 2006. The
researchers determined predictors of poorly controlled
blood pressure and non-treatment and found:
• Participants who had a previous heart attack, drank
alcohol or were overweight were more likely to
have controlled blood pressure.
Among those with poorly controlled blood pressure,
high cholesterol levels and male sex were predictors
of non-treatment, and current smoking or being
overweight was linked to treatment.
• 72 percent had known hypertension, 47 percent had
poorly controlled high blood pressure and 8 percent
had undiagnosed hypertension.
• Those who were on blood pressure medications had
lower rates of death from all causes, but this did not
reach statistical significance.
• Age, female sex, Hispanic ethnicity and diabetes were
associated with poorly controlled blood pressure.
To learn more about how to take control of your
blood pressure, visit heart.org/hbp.
Virtual Therapy Produces Real Improvements
new study found that Wii-based Movement
Therapy involving active-play sports games
improves cardiovascular and upper body
fitness in stroke patients.
The study included 15 men and
three women. Their average age was 61 and their
average time post-stroke was 22 months. All patients
completed a two-week program of formal therapy on
10 consecutive days with additional home practice
using standard Wii Sports™ games such as baseball,
bowling, boxing, golf and tennis. Heart rate was
recorded during the formal sessions throughout the
study. The number of steps during tennis and boxing
were counted from video recordings. Functional ability
was assessed before and after therapy.
Peak heart rates in the stroke patients were 38 percent
higher than resting rates at the end of daily one-hour
formal therapy with additional Wii gaming. Exercise
tolerance also improved.
Functional ability
improved by 23 percent,
which when applied to
everyday tasks resulted in a
127 percent improvement.
“The results suggest
that Wii-based Movement
Therapy not only improves
upper limb function
but also improves
cardiovascular fitness,
mitigating the marked reduction in fitness commonly
reported post-stroke,” said Penelope A. McNulty, Ph.D., of
Neuroscience Research Australia in Randwick, Australia.
She is the study’s lead author. “The differential effect on
heart rate of the basic sports games provides a further
avenue to tailor therapy for individual patients.”
STROKECONNECTION
SUMMER 2012
3
R E A D E R S R O O M | Connecting You to Others
A Bump
in the
Road
Survivor and cyclist Kristen Powers; below: with husband Jason; right: with niece Mirabella
t was sunny Sunday, July 24, 2011. That morning my husband,
Jason, and I had met my friend, Jeffrey Bullock, for a 60-mile
bike ride in preparation for a half-Ironman triathlon. The ride
was going well, with St. Petersburg, Fla., providing a backdrop
in the 95-degree heat. As we approached a bridge around the
30-mile mark, I increased my speed to get up the incline.
However, Jeffrey was not going as fast, and I clipped his back wheel
with my front wheel. I lost control of the bike and went down hard.
My husband heard the commotion, turned around and saw me on the
pavement. My head was bloody, and my right shoulder was torn up. An
ambulance was called.
I remember the ride to the hospital — no sirens or speeding. After all,
I was going to live. I remember all the doctors and nurses in the E.R. It
was a quiet day at the hospital. I joked with the doctor as she stitched up
my head and cleaned the wound on my shoulder. I was discharged about
two hours later. Jason kidded me that the bike accident could derail my
triathlon training. Little did he know!
As we walked out of the E.R.,
I called my mother to tell her I was
okay. As I was getting in the car,
I dropped the phone and couldn’t
pick it up. In fact, I couldn’t move
my right side. I started mumbling
incoherently. Jason thought I
was having an allergic reaction
to something used to numb my
forehead. He rushed me back inside
4
STROKECONNECTION
SUMMER 2012
the E.R. In about five minutes, I was gone.
I woke up two days later in the ICU of a
hospital 20 miles away. I was told I had had
a stroke. I had been transported to a different
hospital because it had the personnel to
use a MERCI retriever. They threaded this
device into my brain to remove the clot that
was blocking blood flow. I had a stroke
due to a “cardiac papillary fibroelastoma,”
a kind of heart tumor. I spent a week in the
ICU and celebrated my 34th birthday there.
During the next three weeks, I learned to
shuffle my feet and speak small sentences.
I then spent three months with speech,
occupational and physical therapists in an
out-patient rehab facility, where I regained
most of the use
of my right side.
Several months
later, my heart
was scanned
and the tumor
was nowhere to
be found. With
what I have
been through
and where I am
now, everyone
tells me I’m a
miracle. But I’m just me.
I returned to work full-time this past
January. I ran a half-marathon in February.
I’ve started biking again, albeit slowly. I’ve
even ventured into the pool a couple times.
Recovery is a slow process. But I know that
with every swim, bike ride and run, I’m closer
to where I was before this little bump in the
road knocked me off my bike.
Kristen Powers, Survivor
St. Petersburg, Fla.
The Day
I Learned
To Laugh
Again
Survivor Denice DeAntonio at home with daughter Andrea
f my children knew I was sharing this story, they
would roll their eyes and say, “Mom, TMI (Too Much
Information).” They might be correct, but this incident
was a turning point for me.
I suffered a near-fatal stroke in December 2008. At first
I did not know what had happened. I asked my mother if I
had been in an accident, and she said, “No, honey, you had a stroke.” I
replied, “How can that be? I am too young!” I was only 42.
I spent a month on life support, and they did surgery to relieve
the pressure in my brain. After that, I went to a rehabilitation hospital
where I received physical therapy, occupational therapy and speech
therapy. Although I made gains, I was sad and grieved my stroke
losses. I was determined that when I came home I would do as much as
I could for myself, and I became independent in many tasks. It wasn’t
always easy, but each day I could do more. Of course, my family
had to make some adjustments, and I continued to grieve the loss of
my independence, job and ability to do activities easily. I knew I was
fortunate to be alive, but I had little to smile about.
One day I became determined to take a bath on my own. I prepared
everything I needed for the task: soap, lotion, towel, washcloth and
clean clothing. Everything was going well until I started to dress. At the
time, I was wearing sports bras because they were easier to manipulate.
I started with the bra, aligned everything and proceeded to put it on.
Sports bras are like tank tops: They have openings for your arms and
head. I was able to get both arms in the bra, no problem, but I could
not find the opening for my head. In fact, there seemed to be too much
material. I readjusted and wrestled with that bra for about 20 minutes.
There were always two holes for my arms, but no matter, there was
always extra material around my neck. Who would think putting on a
bra would be an exercise routine?
Finally, I surrendered and decided to put on my underpants. I took
one more close look at the bra before I put it
down, and to my surprise, I was holding my
underpants. The bra was still in the pile of my
clothing. I suddenly realized how silly I must
have looked, and I laughed. It was funny. I told
my family, and they laughed, too.
It felt good to laugh again. Laughter is good
for recovery. I did some silly things before the
stroke, and I am sure I will do more, and I know
it’s okay to laugh. Laughter makes it easier to
cope. The day I put my underwear on my head, I
gave myself permission to laugh again, and I’ve
been laughing ever since.
Denice DeAntonio, Survivor
Fleetwood, Pa
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STROKECONNECTION
SUMMER 2012
5
Heredity is a double-edged sword —
we get good things from our parents
and some not-so-good things. For
instance, when Michelle Williams was
born in 1980, she got good looks and
massive singing talent. Like many
African-Americans, she also inherited
stroke risk from her ancestors.
6
STROKECONNECTION
SUMMER 2012
ichelle found out about her inheritance as a
freshman in high school when her father had a
stroke in his 40s. “He knew something was wrong
and drove himself to the emergency room,” she
recalled. He was comparatively young and made a complete
recovery, but he didn’t change his lifestyle and continued
smoking. And he had diabetes and high blood pressure.
After high school, Michelle started college but soon found
that she wanted to pursue a singing career. So she moved to
New York. After a couple of years singing backup vocals, she
became part of Destiny’s Child with Beyonce Knowles and
Kelly Rowland in 2000. The R&B trio has sold more than
40 million albums. In 2002, Michelle released her debut solo
album, Heart to Yours, which topped the U.S. gospel charts and
became the bestselling gospel album of that year. She released
a second album in 2004.
While on tour in September 2005, she got a call from her
family that her father had had another stroke at age 53. She
had just seen him a few days before at her grandmother’s
85th birthday party, and he had looked just fine. “My family
didn’t tell me how serious it was because I was on the
road,” she recalled. “They didn’t want to upset me. They
just said he was in ICU.”
But the upset was inevitable. His second stroke was
much more serious than his first. He was on life support,
and the doctors had counseled her mother that she might
have to pull the plug. “I was absolutely devastated
when I got to the hospital,” Michelle said. “I wasn’t
prepared to see my father that way – he had always
been my super-hero.”
There wasn’t time to be sad about what had
happened, however. “We had too much to do to get
Dad well,” she said. “We had to find rehab and make
changes to their home to make it accessible. There
is just so much a family goes through.” Michelle
canceled her engagements for the rest of that year
so she could stay home and help with her father’s
care. “It was hard, but I wanted to be with my family
during those first few months of aggressive therapy.”
Going into rehab, her father had significant
disabilities – right side paralysis, aphasia and
periodic seizures. His pride was bruised when
Michelle and other family members had to help him
Do you know
your family’s
health history?
By Jon Caswell
change a diaper or go to the toilet. “I said,
‘Dad, don’t cry. You changed my diapers once,
just enjoy the pampering,’” she recalled, but
she knew it hurt him a lot.
After six months of rehab, he still had
aphasia and couldn’t walk without assistance.
He could not be left alone, especially because
of the seizures. The family uses a daily care
nurse and a therapist who works him out every
other day, a routine they established when he
went home from rehab.
In 2007, stroke hit Michelle’s family again
when her paternal grandmother experienced
one at age 87. It happened when she was taken
off her blood thinning medication to have
surgery. “It was devastating because she had
always been so independent, and she lost that,”
Michelle recalled. She remembered how her
grandmother used to send them pickled okra
and attend Destiny’s Child concerts. “I think
she slipped into depression after she was moved
into a nursing home, and I don’t think she ever
The Power To End Stroke
website has a great Family Tree
tool to help you understand
more about the influence of
your heredity on your health.
Visit powertoendstroke.org/
tools-family-tree.html to record
and keep track of your family’s
health history today.
recovered. The stroke just took
too much.” She died in 2009.
Michelle has chosen not
to ignore her family history
and has made lifestyle changes that help
her reduce her stroke risk. She does cardio
workouts three times a week and watches her
diet and salt intake. She eats more fruits and
vegetables and substitutes turkey for pork.
“The truth is that slight changes can really
decrease your risk,” she said.
Michelle also got involved in Power To End
Stroke, an education and awareness program to
alert African-Americans to their increased stroke
risk. Using her own heritage as an example, she
emphasizes how important it is to know your
family history. “At family gatherings I talk to my
aunts and uncles to find out what happened to
my grandmother’s sisters and brothers,”
Michelle said. “You can’t change your heredity,
so you should know about it and make healthy
lifestyle choices that help reduce your risk.”
Most Powerful Voices
For the past three years, the
American Heart Association/American Stroke Association, GMC TV
and Roland Corporation have presented “Most Powerful Voices,” an
online gospel music competition. This year, joined by Light Records, the
contest attracted a record 514 contestants and 15,033 fans for a total of
15,547 people registered to receive monthly stroke information from the
American Heart Association/American Stroke
Association’s Power To End Stroke cause campaign.
Judged by Michelle Williams, Christian Hip Hop Artist
Flame and representatives from each of the partner
organizations, this year’s winner is P. Lo Jetson
(pictured at left), a 22-year-old gospel rapper from
Clinton, Miss. His winning song was titled “Cry Out.”
Jetson (real name Dale Sellers) has been performing
since age 7. The Fan Favorite Award went to
Headstone 118, a Christian rock band from Reading,
Pa. Jeremy Rohrbach, the bass player, is a nurse
practitioner who works with many stroke patients.
STROKECONNECTION
SUMMER 2012
7
I’m Real. I’m Strong. I’m Proud.
But I’m at risk for stroke.
I am honored to help the American Heart
Association/American Stroke Association to shine
a light on stroke. This is very important to me
because my father had a stroke.The very next
year, my grandmother suffered from a stroke and
I’m sad to say that she is no longer with us.
I want people to know that stroke is
the No. 4 killer and a leading cause of
disability in the United States, and
African-Americans are especially
vulnerable because they have higher
rates of risk factors such as family
history, diabetes and high blood
pressure. It can happen to anyone, at
any time. My father was in his 40s
when he first suffered a stroke.
Let’s reduce these statistics. Stroke
is largely preventable. We have to
take care of ourselves… the first
step is knowledge.
Michelle Williams
musical artist
The Power is
in your hands
to prevent and
overcome stroke.
www.powertoendstroke.org
Like us on our facebook page at:
www.powertoendstroke.org/facebook
You are the Power To End Stroke.
Speech affected
by a stroke?
Our picture-based speech-generating devices,
created specifically for adults who have difficulty
speaking, can help you to:
n communicate more easily
n express your needs
n regain your independence
Both the AllTalk™ and the TouchTalk™ are fullfeatured communication devices.
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L173 R1
STROKECONNECTION
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9
C OV E R S TO R Y
By Jon Caswell
Recreation,
Relaxation &
Transformation
Photos this spread (clockwise from
above): survivor John Nunley with
wife and R&R Stroke Camp Director
Marylee; survivor Zeke Lewis and
Sacramento Stroke Camp Director
Tess Carter; Sheryl Courch and
Maryann Pavlick; survivors Zeke
Lewis and Kevin O’Neal
Photos next spread (clockwise from
upper left): survivor Pat Dach and
volunteer Debbie Miller; survivor
Anita Smith and husband Eugene;
survivor Joe Smith and wife Christy;
survivor Pat Dach; survivor Bob
Sharpe; Sacramento Stroke Campers
10 S T R O K E C O N N E C T I O N SUMMER 2012
or most of us, “summer camp” brings up pleasant
memories of hikes and campfires, sing-alongs and
bunk beds. But as sweet as those memories are, most
adults haven’t been back to camp in years. And the
idea of stroke survivors negotiating rustic trails,
canoes and bunk beds may be a little daunting due to
disability, travel hassles and expense.
Tess Carter, a nurse in the Sutter Health System in California,
considered all that when she presented the idea for camp to the stroke
support group she was leading in 2001. After watching a video of an
aphasia camp in Oregon, she proposed the idea of a camping experience
to her group. They were game. To fund it, Tess got a grant from a
company she was doing research for, and contracted with a camp in the
Sierra Nevada Mountains east of Sacramento. Fifty survivors, caregivers
and volunteers made the trek.
That first year they had a good time, but the second year tested their
mettle: The camp was at 6,500 feet. It can get pretty cold at that elevation
in September, and the temperature dropped into the 30s during the night.
“I see people make new
friendships, believe
in themselves again,
challenge themselves,
expand their horizons.”
“I woke up freezing and feared that my stroke patients would
be freezing, too,” Tess remembered. So at 5 a.m. she started
waking everyone up, and “They all told me to go back to bed
and leave them alone. So that was our second year. We moved
to Silver Spur Christian Conference Center after that. It’s at a
lower altitude with flatter terrain.”
“And indoor plumbing,” added Arleen Ellis, Spencer’s wife
and a stroke survivor of 13 years. “That’s a big plus.” Arleen
and Spencer have attended every camp since the first one. In the
years since, the Sacramento camp has grown from 50 campers
to 150, two-thirds of whom are survivors.
Retreat & Refresh
Halfway across the country, in Peoria, Ill., caregiver
Marylee Nunley read an article in Stroke Connection
(January/February 2003) about the same Oregon aphasia
camp. Her husband, John, was two years post-stroke
and struggled with aphasia, so the article hit home. She
also recognized a need to better support all survivors and
caregivers, beyond stroke group meetings.
“I had had lots of church camping experience, so I spoke
with family members about helping me do a camp for survivors
and caregivers,” she recalled, but she didn’t want to limit the
camp to people with aphasia. She had helped her sister put on
camps for people with cerebral palsy and wasn’t daunted by
disabilities. She held the first Retreat & Refresh Stroke Camp™
in September 2004 outside Peoria. Her plan was to do one or
two weekend camps each year locally, and in 2005 and 2006
she did two camps, then four in 2007. “In 2008 we became a
nonprofit and expanded the camps to other communities,” she
said. “We completed six in 2008, eight in 2009, 11 in 2010 and
17 in 2011, covering cities in nine states.” This year Retreat
& Refresh will sponsor 21 camps in 13 states. Marylee is the
executive director of the nonprofit.
Both Sacramento and Retreat & Refresh (R&R) are a good
mix of emotional support, stretching limits, therapy and having
a lot of fun. Each camp is well-staffed by volunteers, many of
whom are therapists and healthcare professionals who make
sure everyone is safe and well cared for.
How They’re Organized
Both organizations offer similar activities at their weekend
(Friday night to Monday morning) camps. There’s plenty of
time for rest and recuperation, but there are also a number of
activities — from crafts and group art projects to hikes and
hay rides and dances, drum circles and break-out groups for
both survivors and caregivers. The Sacramento camp turns
the conference center gym into a big therapy room where
survivors book 30-minutes sessions with various therapists
throughout the weekend. At both camps, stroke families hear
presentations by healthcare providers. “Last year we had a
neurologist come and spend a couple of hours answering
everybody’s questions,” Tess said. “Other years, rehab
facilities have come and explained what is new in their fields.”
(R&R camps don’t offer this therapy component, though they
have presentations throughout the weekend by professionals
who work with and care for survivors.)
R&R camps focus on stroke families relaxing and having
fun. Their weekend activities fall into four main categories:
education, socialization, support and relaxation. Marylee
elaborated: “We accomplish this through activities such as
campfires, hay rides, swimming, fishing, boating, rock wall
climbing, crafts, music, drumming, educational seminars
by stroke professionals, a traveling stroke resource library,
discussion groups, entertainment, games, great meals,
time to relax, pampering such as manicures, massages and
STROKECONNECTION
SUMMER 2012
11
facials, and friendships galore!” All activities are modified so
survivors can participate, no matter their disability.
What Happens at Stroke Camp
In a word, “transformation.”
Both the survivors and caregivers described how they were
changed by their experiences. One woman who was afraid
of heights made it to the top of a climbing wall. Tess Carter
spoke of a survivor who came in a wheelchair her first year and
started using a walker, came back the next year with the walker
and transitioned to a cane while at camp, and came back the
next year walking on her own.
Sharing in support groups brings survivors out of their
protective shells. Frank Janisch, who survived a double stroke
in 2008 at age 48, was withdrawn and fearful before attending
an R&R camp in Oakbrook, Ill., in 2009: “I wanted to break
out of the shell that the stroke left me in,” he recalled. Meeting
with other survivors changed him. “I loved getting together
with other survivors in groups. Those were powerful sessions,”
he said. “Very little was talked about, and some people couldn’t
even speak, but you could understand what they were trying
to say because you had that pain inside of yourself.” Frank has
attended four camps and loves being one of the official greeters.
Spencer and Arleen Ellis are enthusiastic volunteers at the
Sacramento camp. Said Spencer: “Perhaps it’s the love that is
put out, but everybody seems to understand everybody else’s
situation, and they want to help. You see someone who can’t
use their left hand helping somebody who can’t use their
right hand. You see people who haven’t walked without their
therapist up there walking on their own. Camp is somewhere
people see that things can be done. It seems like when they go,
they leave all their disabilities at home.”
Caregiver Eugene Smith of Odessa, Texas, attended an R&R
camp with his wife, Anita, in Merkel, Texas, in October 2011.
He got tremendous value from sharing with other caregivers.
“We listened to each other and talked about the problems we
had gone through and the different ways we had handled those
situations. That was a big help. Plus it was very uplifting to
watch Anita being involved in the activities and her excitement
while we were there.”
12 S T R O K E C O N N E C T I O N SUMMER 2012
Rosey Ramsey survived a stroke 11 years
ago and has been part of the Sacramento stroke
support group since it started. She has attended
every stroke camp since the first one. “The more our group
invests in camp, the more we are vested in camp,” she said.
“At camp, everyone helps out. Maybe Joe felt sad and unable
to walk before, but he got spurred on by Bud, his 90-year-old
roommate; now he’s jogging again. Sandra could hardly speak,
but she and Frank were able to communicate just fine and got
married after last year’s camp.”
Rosey thinks camp makes the survivors better people. “We
share our talents and teach others. We start each day with
meditation and a stretch class — which I lead. Tess leads a
vigorous march up the hill, while Joe walks a more sedate
group around the lodge.”
Other camp staffers help participants make greeting cards,
craft jewelry, play the ukulele and sing. There’s sometimes a
makeshift choir around the campfire.
“Mildred’s Bingo is fast-paced and enormous fun,” Rosey
said. “Susan snaps pictures. We all make tie-dye shirts. Late
into the night, we play games or chat in pajama-party pairs, or
listen to guitars gently weep.”
Joe and Christy Smith, both 68, of Kansas City, attended
their first stroke camp in September 2011. That was three years
after Joe’s ischemic stroke had caused left hemiparesis, left
neglect and a visual field cut. Neither of them were campers,
and they were concerned
that they wouldn’t
be able to participate
in all the activities.
“Stroke camp is a
great mix of activities,
information sessions
and much needed rest
time,” Christy said. “Everyone was made
to feel special and
involved. Marylee
and her staff know
firsthand what works,
and they meet the
How to Start a Stroke Camp
special needs for survivors and caregivers and they create a fun,
very moving and caring camp experience.”
“I especially liked the survivor-only breakout sessions,”
husband Joe said. “I learned I was not so different and could
talk with them about their challenges and solutions.”
Survivor Maryann Pavlick, 79, attended an R&R camp in
Cadiz, Ky., last September with her husband, Ed, 81. Initially
she was concerned that she would be in lectures all day and
forced to hear horror stories of other strokes. “I was also
worried that I might not be able to keep up with everyone,” she
said. “I was pleasantly surprised at the kind of treatment we
received, especially all the pampering and crafts. We learned
a lot of neurology and how it applied to each of us. The camp
has helped me stay motivated to keep up with daily routines.
I thank God for blessing us through this camp. It is one of the
best medicines!”
Debbie Miller, a nurse who volunteers at a R&R camp
in Rockford, Ill., said, “I see people make new friendships,
believe in themselves again, challenge themselves, expand
their horizons.” She has seen people at camp who are getting
out of the house for the first time in years. “They find common
ground, find acceptance, realize that they are not as bad off as
they believed when they see others hurting more than they are.
What do I do at camp? I witness miracles.”
SOME DETAILS
Sacramento Stroke Camp
Sept. 28-Oct. 1; cost: $161
Registration deadline: Sept. 21
For more information:
sacstrokesupport.org
Retreat & Refresh Stroke Camp™
R&R sponsors camps throughout the
nation’s midsection, from Illinois to Texas.
They start in April and continue into
mid-November. Camps cost $100-$150,
depending on location. For a complete
list and to register, go to strokecamp.org.
Creating your own stroke camp will take a bit of
effort. Tess Carter recommends forming a committee
to see if there’s interest from stroke families, healthcare
staff and community volunteers. Next, decide what
you want the stroke families, particularly the survivors,
to get out of stroke camp. “Our goal is to help our
survivors get back to some sort of meaningful life,
where they can function in their day-to-day activities
and not feel like a burden,” Tess said. “Decide what you
want your stroke camp to be, and it will grow into that.
I can’t say exactly how that will happen, but it will. The
things that come out of it, you can’t imagine until you
have it.” The Sacramento volunteer committee
meets once a month until a month to six weeks
before camp, when it meets weekly to finalize
planning and implementation.
In addition to planning, the Sacramento
support group raises money all year through a
variety of fundraisers that include boutiques,
restaurant nights and silent auctions. Their goal
is to raise enough money that they can keep
the price down to $100 per camper and offer
scholarships to anyone who can’t afford that.
R&R camps are held in communities where
a hospital, rehab or stroke center is willing
to sponsor the event. That organization then
partners with Retreat & Refresh Stroke Camp™
to put on the camp. (Often several healthcare
institutions collaborate to bring a camp to
their area.)
It’s pretty much a turnkey operation
from there: R&R provides all the
decorations, supplies, adaptive equipment,
entertainment, camp shirts, drums and
musical equipment, camp director
and staff, crafts, games, movies and
karaoke equipment. “We supply
whatever is needed throughout the
weekend,” Marylee said. “We also
handle registration, provide posters,
consultation for recruiting campers
and volunteers, and acquiring a facility
that can accommodate the needs
of survivors and caregivers. We also
provide liability insurance.”
STROKECONNECTION
SUMMER 2012
13
By Jonathan Leavitt,
Survivor Sykesville, Md.
n the afternoon of March 4, 2010, I
was sitting in my basement, lights off,
watching recorded Criminal Minds
episodes. The phone rang and the caller
ID showed that it was my sister Cathy.
“Hey, Cathy, what’s up?” Cathy and I
always have really good phone conversations. She responded
by singing, “Happy birthday to you, happy birthday to you,
I found you a puppy, happy birthday to you.” I didn’t know
what to say; my birthday wasn’t until the 27th.
“Um, did you mean to call Dad?” (Our father’s birthday
is the 9th.)
“No,” she answered. “Did you catch the part about
the puppy?”
“Yeah, do you really have a puppy?”
“Yes, and she is so sweet. I found her running alongside
the road. She looks like she hasn’t eaten in a long time. Her
ribs are sticking out.”
“What kind of puppy is she?”
Cathy thought she was a shepherd mix, and explained
that she and her husband, Larry, were unable to keep her. “I
really don’t want to take her to the pound,” she said. “They
are already overloaded with pets from foreclosures, and I
14 S T R O K E C O N N E C T I O N SUMMER 2012
hate the thought of her being put down.”
I thought it over for a minute before I said, “We’ll take
her, but let me call Becky first.”
“Really!?” Cathy yelled, “Do you really think you can
handle it?”
“Yeah, we can watch her while we look for the owner.
I’ve always wanted a big dog to play with.” I knew someone
would probably claim her, but I would have fun in the
meantime. I called my wife, and she agreed to take the puppy.
While I was waiting for Becky to bring the dog home,
I began reflecting on just what I might have gotten myself
into. After two strokes, I have been on disability for four
years. Life on disability had proved challenging. While there
were plenty of things to get done around the house, the
loneliness began to affect me. Everyone is either at work or
too far away to visit.
To make enough money to cover our bills, Becky took a
job an hour’s drive away. Often, she doesn’t get home until
after 10 p.m. Disability became a kind of solitary confinement,
and my desire to go out or see friends evaporated. The more I
was alone, the more I wanted to be alone. My doctor asked if
I were depressed. “I don’t feel depressed,” I told him. “I just
don’t feel like doing anything.”
I enjoy taking Zoey on long walks around
the neighborhood. In two days I met more
neighbors than I had the previous four years.
When I saw Becky’s headlights coming down our street,
I went outside to greet her and could see the puppy was very
eager to get out of the car and meet me. As I opened the
door, she nearly leapt into my arms and began licking my
face. Becky went to the store for dog food, a longer leash
and some toys. The puppy couldn’t wait to explore the yard.
I was a bit nervous because of my balance issues.
Within minutes of Becky leaving, I found myself face
down in a snowdrift. The puppy had found the scent of a
squirrel and pulled me to my weak side. I fell hard, and
pain shot up my wrist as it jammed onto the ice. I managed
to avoid serious injury, but I found it difficult to move. I
considered how I was going to get up. My face and hands
were already freezing, and I was lying on a small hill, with
nothing to hold to steady myself so I could stand up. I pulled
the leash, being careful not to choke the puppy. It was a
short leash, and I was afraid I’d hurt her if I tried to stand
and instead fell again.
I decided the best thing was just to slide out of the snow
and lie in the driveway until Becky returned. The puppy
came and licked my face. She sat right beside me for the
half hour until Becky got home. I thought, “I’m supposed to
be the one looking out for you.”
We named the puppy Zoey. She was well-trained,
although there were hints that she had been trained by being
hit. We looked hard to find her owner but had no luck. There
was no microchip. After a month of looking, we adopted
Zoey into the Leavitt family.
Zoey is incredibly smart. When she wants to go out, she
brings her leash to me. I enjoy taking her on long walks
around the neighborhood. In two days I met more neighbors
than I had the previous four years. Zoey is great with
children. The younger neighborhood kids love gathering
around her, saying, “Sit, Zoey” and “Give me paw.” They
erupt in laughter and awe when she follows their instruction.
Zoey loves the attention, of course.
“Mommy, can she have my chicken nuggets?” a small
girl asked. Zoey is a master of the sad puppy face that
children are particularly vulnerable to. “No, doggies don’t
like chicken nuggets,” her mom said. Zoey begged to
differ, let out a small “woof” and tried the sad puppy face
again, to no avail.
After a particularly long walk one afternoon, we returned
home and I sank into my chair to rest. Zoey grabbed the
leash off the table and put it in my lap. “No, Zoey, we
just came home and I’m tired,” I said. She furrowed her
eyebrows and cocked her head as if to ask, “What don’t you
understand, human? Let’s go.” Being the clever master of
the house, I took the leash and put it out of reach on top of
the bookcase. Zoey disappeared down the hall and returned
with my coat. I laughed. “You win, we’ll go back outside.”
Zoey has breathed new life into me. Her companionship
gets me going, and her friendship is the best antidepressant
there is. Gone are the day-long TV marathons and lack of
direction. Zoey has become my personal trainer and helps
me get up and walk every day. This has translated into more
energy and a big sense of accomplishment. Positive things
build on one another, and I find myself having my best year
in a long time.
Your $25 donation makes
Stroke Connection available
to 8 stroke families. Make a
difference
here.
STROKECONNECTION
SUMMER 2012
15
E V E RY DAY S U R V I VA L | Connecting You to Helpful Ideas
Understanding
Foot Drop
What it is and how it is treated
By Jody Feld, PT, DPT, NCS
Physical Therapist — Duke University Health System;
Assistant Professor — Doctor of Physical Therapy
Division, Department of Family and Community
Medicine, Duke University School of Medicine
Superficial
peroneal nerve
Deep peroneal
nerve
The foot “drops”
downward, affecting
gait and balance
Foot drop among stroke
survivors is usually caused by
paralysis of the muscles controlled
by the deep and superficial branches
of the peroneal nerve. This prevents
the survivor from raising his or her foot.
16 S T R O K E C O N N E C T I O N SUMMER 2012
oot drop is one of the most
common walking challenges
caused by stroke. It affects
up to 20 percent of survivors.
A survivor with foot drop
can’t raise the front part of
the foot because of weakness
or paralysis of the muscle(s)
that normally lift the foot. Depending on the
cause and extent of the muscle weakness, foot
drop can be temporary or permanent.
A person with foot drop has difficulty
“clearing” the foot while walking. He or she
will often drag or scuff the foot or toes along the
ground when moving the affected leg forward.
Foot drop can also result in poor positioning
and unsteadiness of the ankle and knee while
standing on the affected leg. Balance problems
are common, such as losing one’s balance on
uneven surfaces. People commonly compensate
by adjusting the way they walk.
“Steppage gait” is a survivor bending his or
her hip and knee excessively to lift the foot higher
than usual to avoid scuffing the foot or toe.
“Circumduction gait” occurs when the leg
remains straight and the survivor swings the leg
to the side in a semicircle in order to move the
affected leg forward.
The challenges presented by foot
drop can affect a person’s quality of
life and their ability to be an active
member of the community.
— Physical Therapist Jody Feld
Impact on a survivor’s life
A change in normal walking pattern affects a person’s
ability to safely and independently make his or her way
around the home and community. Foot drop can result in
slower walking, fatigue at short distances, higher energy
use, pain and a lot of falls. A person with foot drop may
choose to walk less often and require more assistance to
do so safely.
All these challenges affect the person’s quality of life
and ability to be an active member of the community.
When asked to explain how foot drop has affected her life,
Elizabeth, a survivor I worked with, said, “Foot drop has
made the ability to walk and be functional a challenge. I
was falling constantly. I hesitated to go anywhere because
I was so unstable and I was so slow in my walking. I was
constantly left behind in the crowd.”
Treatment alternatives
Recent advances in treating foot drop have provided a
number of alternatives, including:
• strengthening
• stretching
• balance training to decrease risk of falls
• gait training with an assistive device
• use of a brace or orthotic
• electrical stimulation for strengthening and/or walking
• surgery (in rare cases)
The goal of a treatment plan for foot drop is for the
survivor to have a more normal and comfortable walking
pattern while being as safe and independent as possible.
Two of the most common treatments today are bracing
with an ankle foot orthosis (AFO) and functional electrical
stimulation (FES).
Ankle Foot Orthosis (AFO)
Foot drop after stroke has traditionally been treated
with an AFO. This is a device that keeps the ankle and
foot in position to help the foot clear the ground while
walking. An AFO is often the first line of defense and
prescribed early in rehabilitation.
There are different types of AFOs, made with a
variety of materials such as polypropylene or carbonfiber and with varying degrees of stability (rigid or
flexible). The cost of an AFO is often covered at least in
part by insurance. The style and fit are tailored for each
person. A physician, physical therapist and an orthotist (a
professional who works with orthotics) will often work
together to determine whether a brace would be helpful,
select the type of device, and fit and train the user.
An AFO can help increase walking speed. It also
may provide needed stability for the ankle and knee
when standing on the affected leg. This may improve the
survivor’s balance, posture, safety and confidence.
Although advances in bracing materials have
improved the functionality and benefits of AFOs, there
are drawbacks. Rigid materials often limit air circulation,
leading to greater risk of skin breakdown. The stability
provided by the brace may affect normal movement of the
leg, which can result in decreased walking efficiency.
Some AFOs may limit recovery of movement because
the patient uses the muscles around the ankle joint less.
The AFO may also make it harder for a survivor to feel the
walking surface, which is important for balance and the
potential for recovery.
“I started out with an AFO and a cane,” Elizabeth said,
“My gait was awkward, due to swinging my leg out to
clear my foot. I felt that the AFO was confining. I would
often fall just trying to stand up.”
But the benefits provided by an AFO often outweigh
the drawbacks, and the appropriate type and consistent use
of the AFO by survivors with foot drop are important for a
meaningful outcome.
Functional Electrical Stimulation (FES)
FES was first introduced as an alternative treatment
for foot drop in the early 1960s. FES sends small pulses
of electrical stimulation to the nerve that controls the
muscles that lift the foot. This is delivered through surface
electrodes placed on the skin. The stimulation is given in a
specific sequence to help with functional movement such
as walking.
STROKECONNECTION
SUMMER 2012
17
Speech and Language Recovery
Stroke survivors are good candidates for FES
because the injury causing the foot drop is typically
in the brain. In contrast, FES may not be effective for
someone with an injury directly to the nerve, such
as diabetic neuropathy or bulging disc. Survivors
with cardiac pacemakers or defibrillators are not able
to use FES, based on established FDA guidelines.
Additionally, there may be other limitations to use
of FES, such as poor tolerance for the feeling of
stimulation, skin irritation, cost and lack of insurance
reimbursement.
The FDA has approved three commercially available
FES systems for use after stroke – the WalkAide system
from Innovative Neurotronics, the NESS L300 Foot
Drop System from Bioness Inc. and the ODFS Pace
FES System by Odstock Medical Ltd., distributed in the
U.S. by Boston Brace.
The benefits of FES for the treatment of foot drop
include an improvement in walking speed, ability to
walk longer distances without fatigue, lower energy
expenditure, participation in social activities and a
decrease in reported falls. In addition, there is evolving
evidence that over time, walking speed without the FES
system improves. However, that improvement remains
less than that seen with the device still on.
When compared to certain types of AFOs, FES
appears to show a greater progression toward a more
normal walking pattern. Survivors who use FES systems
reported feeling more stable and that their gait felt more
normal compared to using their AFO.
An FES system may benefit an appropriate user at
all stages of recovery. Elizabeth explained, “Six and
a half years post-stroke, I was introduced to an FES
system. This device has been a life changer. My balance
and stability have returned and I am no longer falling. I
no longer say, ’I can’t.’ I now say, ‘We haven’t left yet?’
I have regained my freedom.”
Foot drop presents many challenges for survivors.
The appropriate treatment plan needs to be tailored
to the individual’s needs, as not all treatment options
work for everyone. With advances in technology and
an improved understanding of appropriate treatment,
stroke survivors can expect a positive effect on their
independence and quality of life.
Full disclosure: Dr. Feld was employed by Bioness Inc.
from 2006 to 2011.
18 S T R O K E C O N N E C T I O N SUMMER 2012
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WARNING
SIGNS OF STROKE:
KNOW THE
• Sudden numbness or weakness of
the face, arm or leg, especially on
one side of the body
• Sudden confusion, trouble speaking
or trouble understanding
• Sudden trouble seeing in one
or both eyes
• Sudden trouble walking, dizziness,
loss of balance or loss of coordination
• Sudden, severe headache with no
known cause
If you experience some or all of
these warning signs, don’t wait.
Call 9-1-1 right away.
L I F E at the C U R B
A Unique Perspective on Survival
by Stroke Survivor and Comedian John Kawie
Jive Talkin’
round 1223 the Persian poet Rumi wrote,
“There are secrets in the morning breeze.”
This was the time of day the 13th-century
poet came in contact with inspiration.
For this downtrodden 20th-century
stroke survivor, all I came in contact with in the morning
was a nurse brandishing a syringe. Not exactly the
eye-opener the bard had in mind. She materialized out of
thin air alongside my bed vampire-style every morning
at 4 a.m. She punctured my forearm, sucked up a vial of
blood, then melted into the predawn darkness. Spoo-ky.
of accumulated paraphernalia, all topped by a huge
poinsettia. Looking like the Clampetts’ truck in The
Beverly Hillbillies, we rolled past security into the fresh air.
When you’re sprung from the hospital, you’re
like a bird out of the nest. You don’t know whether
you can fly until you try. I looked up at Marilyn and
asked “Wanna grab lunch?” So we hit the apartment,
jettisoned my stuff, and headed to Homers Diner. This
was the first time I’d been in a restaurant in months.
Add a wheelchair with a novice driver, and I felt as
awkward as Granny visiting Mr. Drysdale’s office.
Eventually we got situated and ordered.
That’s when it hit me — I couldn’t carry on
a conversation. Sure, we had spoken during
visiting hours, but hospital banter isn’t really
verbal parley. It was more Q&A. “How was
therapy this morning?” “Tough.” “How about
an Eskimo Pie tomorrow?” “Fine.” And so on.
The last time Marilyn and I had real
repartee was pre-stroke. Now? My timing
was shot. I ended up talking while she was
talking because I couldn’t tell when she was
done. Sometimes she stopped talking, then
would suddenly start up again, and that really screwed
me up. I didn’t know when to start talking and when
to stop talking. I was constantly interrupting, spewing
out a barrage of senseless, choppy, tweet-like phrases.
Eventually, I kept my mouth shut altogether. The only
difference between Harpo Marx and me was that Harpo
had a horn.
That’s when reality kicked in. One minute I was excited
to be in the high-octane energy of the city, and the next I
longed to be back in the safe confines of St. Vincent’s and
that occasional Eskimo Pie.
Yet I knew this was where the real work began and
it was going to take time. At least the next morning I
wouldn’t be awakened by a syringe, but by someone who
just might want to initiate a little chit-chat.
I was constantly interrupting,
spewing out a barrage
of senseless, choppy,
tweet-like phrases.
However, 1998 New Year’s morning was different.
My eyelids snapped open in Charlie McCarthy/
ventriloquist dummy fashion long before Nurse Dracula’s
bloodletting ritual. I was too excited to sleep. Finally,
after 90 days of hospital incarceration, I was being
released. Pre-dawn needles? Hasta la vista, baby!
Institutional chow? Dasvidaniya, dollink! Hospital gowns?
Sayonara, butt-less kimono!
During the mandatory exit meeting, I sat buzzing in
my wheelchair like a cellphone set on vibrate. Marilyn
and I listened while they warned us that the Ativan
they had been feeding me every night for relaxation
was dangerously habit-forming. Brilliant! Goodbye, St.
Vincent’s. Hello, Betty Ford.
Afterwards we headed back to my room to pack. In
no time my lap was teeming with three months’ worth
LOVING
LIFE
AT THE
CURB?
ve John
Now you can ha
ry own
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For every Brain Freeze video sold from 8/1/10 through
7/13/15, and after the recovery of startup costs, Parma
Recordings will donate 17% of the retail sales price to
the American Stroke Association. Brain Freeze contains
adult language and situations that may not be suitable
for all audiences.
Read John’s personal stroke story, “Life is at the Curb,”
from the September/October 2003 issue of Stroke
Connection at StrokeAssociation.org/strokeconnection.
For booking information, contact John at [email protected].
STROKECONNECTION
SUMMER 2012
19
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“PoifGor gentle true-life
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The hilarious live DVD from comedian
and stroke survivor John Kawie
At the age of 47 and on the cusp of the breakthrough that is every
artist’s dream, the comedian John Kawie suffered a devastating
stroke which he thought would derail his career…and life. With
the sardonic wit that landed him gigs as a writer/contributor for
comedians such as Bill Maher, Dennis Miller, and David Brenner,
John focused on his experiences with the stroke and created
BRAIN FREEZE, a hysterical, poignant, and affirmative journey
through the bumpy road to recovery and beyond. Recorded live at
the Gotham Comedy Club in New York City in front of a rollicking
full house, BRAIN FREEZE is sure to delight those who know just
how healthy a laugh can be – and to help teach us all that (to
quote John) life is indeed at the curb!
A portion of the proceeds go to the
American Stroke Association*
John Kawie
Brain
Freeze
www.brainfreezedvd.com
Filmed live at the Gotham
Comedy Club, new York
City on april 24, 2010
* For every Brain Freeze video sold from 8/1/10 through 7/13/15, and after the
recovery of startup costs, Parma recordings will donate 17% of the retail sales price
to the american Stroke association. Brain Freeze contains adult language and
situations that may not be suitable for all audiences.
Big Round Records | 861 Lafayette Road, Suite 6B | Hampton, NH 03842 | 603.758.1718 | bigroundrecords.com