Dystonia Dialogue - Dystonia Medical Research Foundation

MAGAZINE OF THE DYSTONIA MEDICAL RESEARCH FOUNDATION | SUMMER 2015 | VOL. 38 • NO. 2
Dystonia Dialogue
& Cure Dystonia
5 DMRF
Now Investigate New
Treatment
the Dystonia
8 Join
Moves Me Campaign
Military at
17 US
Increased Risk of
Dystonia Following TBI
SUMM ER 201 5
2
Inside This Issue
5
DMRF & Cure Dystonia Now Collaborate to Investigate
Possible Treatment
Medication May Lessen Dystonia with Fewer Side Effects
7
Clinical Fellowships Announced for 2015
DMRF Program Provides Physicians with Special Training
14
Flexing Our Muscles
Dystonia Advocates Urge Action from Congressional Leaders
20
Employees with Dystonia: Accommodation & Compliance
Guidelines for Employers from the Job Accommodation Network
22
Personal Profiles
Meet Wayne Erickson & Johnny McCoy
What is Dystonia?
Dystonia is a disorder that affects the nervous system. Improper
signaling from the brain causes muscles to contract and twist involuntarily.
Dystonia can affect a single body area or multiple muscle groups. There
are several forms of dystonia, and dozens of diseases and conditions
include dystonia as a significant symptom. For more information visit:
www.dystonia-foundation.org
On the Cover:
The Dystonia Dialogue is the magazine of
the Dystonia Medical Research Foundation
(DMRF). It is published three times a year to
provide information to individuals affected by
dystonia, family members, and supporters of
the DMRF.
The Dystonia Medical Research Foundation
(DMRF) is a non-profit, 501c(3) organization
founded in 1976. The mission is to advance
research for more effective treatments and
a cure, to promote awareness and education,
and to support the well being of affected
individuals and families.
Dystonia Medical Research Foundation
One East Wacker Drive • Suite 2810
Chicago, Illinois 60601-1905
Phone: 312 755 0198 • 800 377 3978
Email: [email protected]
Web: www.dystonia-foundation.org
The Dystonia Dialogue reports on developments
in dystonia research and treatments but does
not endorse or recommend any of the therapies
discussed. Individuals are urged to consult a
physician with questions and concerns about
their symptoms and care.
Staff
Janet L. Hieshetter
Executive Director
Debbie Durrer
Director of Development
Veronica Diaz
Information Coordinator
Jessica Feeley
Editor and Special Projects
Jennifer McNabola
Director of Finance
Martha Murphy
Brain Bank Liaison
Emma Pinto
Development Associate
Jody Roosevelt
Science and Technology Manager
Jan Teller, MA, PhD
Chief Scientific Officer
The DMRF is more than an organization—
we are a community working tirelessly to better
the lives of people and families living with dystonia
today and in the future.
Partial support of the Dystonia Dialogue is provided by educational grants from Allergan.
Printed in the USA.
© Dystonia Medical Research Foundation
DY STON IA DIA LOGU E
3
Foundation Update
Dear Friends,
ART KESSLER
As an organization, the DMRF owes its strength to the dedication of our supporters; as individuals
impacted by dystonia, we find strength in each other. Together we have built a community that works
tirelessly to better the lives of people and families living with dystonia today and in the future.
PRESIDENT
Although the dystonia experience can feel isolating at times, we hope each of you feels confident that
the DMRF is fighting every day on your behalf.
JANET L.HIESHETTER
EXECUTIVE DIRECTOR
In this issue of the Dystonia Dialogue we share how our community is continuing to make a
difference with a special focus on legislative advocacy and the work of the Dystonia Advocacy
Network (DAN). The DAN is the dystonia community’s voice on Capitol Hill, educating legislators
and policy makers about dystonia and the needs of affected individuals and families. The DAN
mobilizes volunteer advocates to take action when needed, and the results are inspiring. See page 14
to read about how advocates have significantly increased federal research funding opportunities for
dystonia investigators. For years advocates have highlighted the increased risk of dystonia among
US military service people and veterans due to traumatic brain injury. Read more about this
important subject on page 17.
You are a vital member of the DMRF family. There is no substitute for connecting with others
who understand the realities of dystonia, and your experiences can help others. We encourage you
to reach out to the nearest DMRF support group and/or online support groups. Support groups
also offer opportunities to get involved in efforts to promote dystonia awareness and raise funds
for medical research toward better therapies and a cure.
We never lose sight of how much we appreciate and depend on our community. We welcome
everyone who wishes to join us and be part of our efforts to make a difference. Thank you for
your ongoing support.
Art Kessler
President
Janet L. Hieshetter
Executive Director
Join the DMRF’s 2015 Awareness Campaign!
See page 8 for details.
SUMM ER 201 5
4
More Than a Day at the Zoo
Zoo Walks Raise Awareness & Funds to Benefit DMRF
Dystance4Dystonia Zoo Walks are happening throughout the US to raise dystonia
awareness and research funds. Teams of participants gather for a day at the zoo in
support of a local family that has been impacted by the disease.
“It was awesome to see everyone get together, whatever kind of dystonia they have. I
was able to meet families we connected with online,” explains Becky Shaughnessy who
traveled from New Hampshire to attend the Providence Zoo Walk in June. “It’s amazing
the bonds you make. I can’t wait for next year. I want to do whatever I can to raise
awareness and funds for research so hopefully one day we’ll find a cure.” Becky’s son,
daughter, and husband have dystonia.
Maria Jeffries of Arizona traveled to Providence to attend
the Zoo Walk. Her extended family in the area formed a team
in her honor: “My family was happy to support me and they
enjoyed being there with me, even though I couldn’t walk with
them. We had a great time. My family grew that day: I have my
blood family and my dystonia family.” Maria was diagnosed
with cervical dystonia and focal torsion dystonia in 2009.
Upcoming Zoo Walks scheduled for 2015 include:
• August 30: St. Louis Zoo
• September 12: Cincinnati Zoo
• September 19: Cleveland Zoo
• September 19: Binghamton Zoo, New York
• September 27: Pittsburgh Zoo
• October 4: Bronx Zoo
Proceeds benefit the DMRF. Cost to attend is typically $25
per adult and $15 for children under 11. Fee includes all day
admission to the zoo, t-shirt, and refreshments.
Additional upcoming DMRF events include the Minnesota Dystonia
Golf Classic (August 15), the Toss4Dystonia Cornhole Tournament
(September 26), the Putnam, CT Dystance4Dystonia Walk
(October 17), Team DMRF at the TCS New York City Marathon
(November 1), and others.
For more information and to register for scheduled DMRF events,
visit www.dystonia-foundation.org/events.
Zoo Walks bring the dystonia community
together and support the work of the DMRF.
DY STON IA DIA LOGU E
5
DMRF & Cure Dystonia Now Announce Collaboration
to Investigate Possible New Treatment
Medication May Lessen Dystonia with Fewer Side Effects than Existing Drugs
The DMRF and Cure Dystonia Now (CDN) are collaborating to co-support a research investigation that may one
day lead to a new dystonia drug. The medications most frequently prescribed to treat this debilitating disorder are
ironically those with some of the highest incidence of intolerable side effects, which limit their use. A team of American
and European investigators is exploring whether a drug called AZD1446, a.k.a. TC-6683, could potentially provide
relief for dystonia patients without the unintended effects frequently caused by existing pharmacological therapies.
ARTICLE AT A GLANCE
• DMRF and Cure Dystonia Now
are collaborating to co-support
a research investigation that
may lead to a new dystonia
drug.
• Investigators are exploring
whether AZD1446 could potentially provide relief for dystonia
with fewer side effects than
existing medications.
• The drug has been examined
for treating attention deficit/
hyperactivity disorder and
Alzheimer’s disease.
The investigation is led by David Standaert, MD, PhD, Professor and
Neurology Chair at University of Alabama and includes Antonio Pisani, MD,
PhD, Associate Professor of Neurology at University of Rome Tor Vergata
and DMRF Stanley Fahn Awardee.
Art Kessler, President of the DMRF, explains: “This project addresses
two important issues for the dystonia community: We need additional
treatment options and we need to find new ways to offer treatment with
minimal side effects. This project provides an important opportunity to
investigate a possible new medication for dystonia while pursuing a better
quality of life for patients.” Kessler developed an especially debilitating
childhood onset form of dystonia at age eight and knows firsthand the
challenges inherent in treatment.
Marc Miller, Director and Co-President of CDN states, “Our priority
is to work with the brightest and most motivated doctors and scientists,
and our goal is to discover new treatments. This project is an exciting
opportunity to do both.” Two generations of the Miller family are
affected by dystonia.
Dystonia treatment typically requires a combination of approaches including oral medications, botulinum neurotoxin
injections, surgical interventions, and supportive therapies such as physical therapy. In some people, a class of drugs
called anticholinergics (for example, Artane/trihexyphenidyl) may replace or compound the physical symptoms with
equally disabling cognitive effects such as drowsiness, hallucinations, and memory difficulties. Striking a balance
between controlling the dystonia and preserving the ability to function in daily life is a challenge for physicians
and patients alike.
Dystonia results from improper signals in the nervous system that instruct muscles to contract excessively. Experts do
not yet fully understand the neurological mechanism that causes the abnormal muscle contractions, but the origins
appear to stem from an imbalance of neurotransmitters in the brain and changes in brain cell synapses. Standaert and
team are using a genetically engineered mouse with abnormal neuronal signaling to examine whether AZD1446 can
correct the abnormal signaling and restore the balance of neurotransmitters. In separate studies, the drug has been
examined for use in treating attention deficit/hyperactivity disorder and Alzheimer’s disease.
SUMM ER 201 5
6
Stanley Fahn Honored for Life’s Work
in Dystonia & Movement Disorders
The DMRF joined Columbia University
Medical Center and the Parkinson’s
Disease Foundation to honor movement
disorder pioneer Stanley Fahn, MD at
the Stanley Fahn Symposium on April
18 at Columbia University in New York
City. Dr. Fahn is the H. Houston
Merritt Professor of Neurology and
Director Emeritus of the Center for
Parkinson’s Disease and Other
Movement Disorders at Columbia.
Goetz, Director of the Parkinson Disease
and Movement Disorders Center at Rush
University Medical Center; Mark Hallett,
Chief of the Human Motor Control
Section of the National Institute of
Neurological Disorders & Stroke; Joseph
Jankovic, Professor of Neurology, Distinguished Chair in Movement Disorders,
and Director of Parkinson’s Disease
Center and Movement Disorders Clinic
at Baylor College of Medicine; Anthony
Lang, Jack Clark Chair for Parkinson’s
Disease Research at University of Toronto
and Director of the Movement Disorders
Centre at Toronto Western Hospital,
and many others.
In addition to being a pioneer in
Dr. Stanley Fahn was recognized
movement disorders research and
for being a pioneer in research
patient care, Dr. Fahn’s commitment
and patient care.
to training young physicians nurtured
many—if not most—of the most influential names in
Meeting support was provided by the Allergan
movement disorders today. The symposium paid tribute to
Foundation with additional support from Lundbeck
Dr. Fahn for his contributions to the field and provided
and US WorldMeds.
a forum in which established and up-and-coming movement disorder experts discussed the latest in research and
patient care for dystonia and other movement disorders.
The Stanley Fahn Symposium was chaired by
Drs. Mahlon Delong, William Timmie Professor of
Neurology, Emory University School of Medicine;
William Dauer, Associate Professor of Neurology,
University of Michigan; and Un Kang, H. Houston
Merritt Professor of Neurology and Chief of Movement
Disorders Division, Columbia University. Additional
speakers included prominent movement disorder experts
Drs. Susan Bressman, Chair of the Alan and Barbara
Mirken Department of Neurology at Mount Sinai Beth
Israel and Interim Chair in the Department of Neurology
at Mount Sinai St. Luke’s Roosevelt; David Eidelberg,
Investigator and Head at the Susan and Leonard Feinstein
Center for Neurosciences and Director of the NIH Morris
K. Udall Center of Excellence for Parkinson’s Disease
Research; Steven Frucht, Professor of Neurology and
Director of Movement Disorders in the Robert and
John M. Bendheim Parkinson and Movement Disorders
Center at Mount Sinai Medical Center; Christopher
Stay in Touch
It's easy to keep informed of the latest DMRF
events and news:
• Renew Your Membership:
www.dystonia-foundation.org/membership
• Sign Up for Monthly Email Updates:
www.dystonia-foundation.org/email
• Text DYSTONIA to 90999 for
Updates to Your Mobile
• Find a Support Group:
www.dystonia-foundation.org/supportgroups
• Join an Online Group:
www.dystonia-foundation.org/online
• Find the DMRF on Facebook, Twitter,
and Instagram
DY STON IA DIA LOGU E
7
Mahlon DeLong Earns
2015 Taubman Prize for
Excellence in Translational
Medical Science
The DMRF congratulates Scientific Director
Dr. Mahlon R. DeLong
for earning the 2015
Taubman Prize for
Excellence in Translational Medical Science
from the University of
Michigan’s A. Alfred
Taubman Medical
Research Institute.
Dr. Mahlon DeLong was
honored for contributions
to the treatment of
Parkinson’s disease.
He is being honored
for his contributions
to the treatment of
Parkinson’s disease.
Dr. DeLong will present the keynote address at
the Taubman Institute’s annual symposium on
October 16, 2015 at the Kahn Auditorium on
the University of Michigan medical campus.
The Taubman Prize was established to recognize
outstanding translational medical research. It
includes a $100,000 award and is presented each
year to a clinician-scientist who has transformed
laboratory discoveries into clinical applications
for patients suffering from disease.
Dr. DeLong is William Timmie Professor of
Neurology at Emory University School of
Medicine. Among his numerous awards, he
earned the 2014 Breakthrough Prize in Life
Sciences and the 2014 Lasker-DeBakey Clinical
Medical Research Award.
Clinical Fellowships
Announced for 2015
Few things are more important to living well with dystonia
than a knowledgeable doctor who is trained in the diagnosis
and treatment of movement disorders. The DMRF is fostering
the next generation of dystonia leaders by offering one-year
fellowships to support clinical training of physicians in
preparation for a clinical and/or research career in movement
disorders with a special focus on dystonia. The training is
patient-oriented and includes hands on experience in clinics
as well as participation in professional meetings and workshops. The Clinical Fellowship Training Program is made
possible by grants from Merz Pharmaceuticals and the
Allergan Foundation.
Congratulations to our 2015 Clinical Fellows and
their mentors:
Leonardo Almeida, MD
University of Florida
Mentor: Mike Okun, MD
Jeffrey Ratliff, MD
Mount Sinai
Mentor: Rachel SaundersPullman, MD, MPH
Kelly Andrzejewski, DO, PhD
Laura Scorr, MD
University of Rochester
Emory University
Mentor:
Mentors: H. A. Jinnah, MD,
Richard Barbano, MD, PhD
PhD and Stewart Factor, DO
Sophie Cho, MD
National Institute of Neurological Disorders & Stroke
Mentor: Mark Hallett, MD
The impact of the Clinical Fellowship Training Program
is reaching communities across the country. Past Clinical
Fellows have earned positions in the movement disorder
programs at prestigious institutions such as University of
Pennsylvania, Brown University, and University of Texas
Southwestern. Others are filling gaps in communities
previously without movement disorder experts with special
experience in dystonia such as Bakersfield, California.
As future Clinical Fellows complete the program, additional
communities throughout the country will benefit from these
outstanding movement disorder clinicians.
SUMM ER 201 5
8
Dystonia Moves Me:
Show Me Your Moves
DMRF Launches 2015 Awareness Campaign
Dystonia Moves Me is the DMRF’s awareness
campaign to take place throughout September.
This year’s challenge is to promote dystonia
awareness by ‘showing your moves’ and
encouraging others to do the same.
The Challenge
Use photos, video, or live events to promote
dystonia awareness by showing off your
moves—whether through dance, sports, demonstrating a sensory trick,
playing a musical instrument, or any favorite skill or hobby. Or simply
share how dystonia, a movement disorder, impacts your life. Encourage
family, friends, school mates, dance studios, fitness clubs, etc. to take part
and challenge one another. The more people who participate, the greater
the awareness.
Get Started Today
Download your free Dystonia Moves Me: Show Me Your Moves awareness
kit, including an optional media kit, at: www.dystonia-foundation.org/
DMMkit. A supply of awareness materials including stickers and walletsized dystonia information cards will be mailed to you. To request an
awareness kit by mail, contact the DMRF at 800-377-3978 or
[email protected].
Stay in Touch
Be sure to keep the DMRF informed of your awareness activities. Submit
your photos and images to the DMRF at www.dystonia-foundation.org/moves.
Visit www.dystonia-foundation.org/dystoniamovesme and follow the
DMRF on Facebook, Twitter, and Instagram for news and updates about
the campaign. Look for a full report on Dystonia Moves Me in the next
Dystonia Dialogue.
Special Edition DMM T-Shirt Available While Supplies Last
Promote dystonia awareness wherever you go with a
limited edition Dystonia Moves Me t-shirt with stylish
royal blue ringer detail for just $18. For details, go to:
www.dystonia-foundation.org/DMMshirt.
Help Researchers
Find a Cure: Register
as a Brain Donor
Registering as a brain donor is
a powerful way to contribute to
dystonia research without cost
to the donor or family. Important
neuropathological studies are
not possible without volunteers
who chose in advance to donate
their brains to research.
Brain recovery does not alter
the outward appearance of the
donor or interfere with memorial
services or remembrance
practices. The DMRF partners
with the Harvard Brain Tissue
Resource Center (HBTRC) at
McLean Hospital in Belmont,
Massachusetts. The HBTRC
accepts donations from the
48 states in the contiguous
USA. (Contact the DMRF for
more information if you live
outside of those areas and
wish to donate.) Individuals
have the right to withdraw
from the program at any time.
Learn more about the program
and begin the simple registration process at www.dystoniafoundation.org/brain. Or request
information by mail by contacting
Martha Murphy, Brain Bank
Liaison, at [email protected] or calling
800-377-3978.
DY STON IA DIA LOGU E
9
Return of the Fly
Research Reality Check with Chief Scientific Officer Jan Teller
It is not easy to catch a fruit fly. Scientists recently discovered that
fruit flies react to threats as if they were fighter jets, elegantly using
aerodynamic forces to perfection. So when you find one hovering
around your kitchen, do not chase; it is pointless! Other scientists,
probably less impressed with their flying abilities but captivated
by their genetics and short life cycle, use fruit flies to study dystonia. Two recent scientific
papers, published virtually simultaneously, provide unusually detailed insights into
torsinA and the inner workings of the fly brain.
In the first paper, a research team from South Korea, led
by Dr. Young Ho Koh and helped by Canadian and US
scientists, explored the role of abnormal torsinA in how
neurons respond to stress. The researchers show that mutant
The cellular
torsinA is essentially toxic to the fly brain cells and induces a
protein TorsinA
stress response that causes excessive accumulation of cell proteins
causes dystonia when
that are misshaped, damaged, and not fully functional. Abnormal torsinA
it becomes abnormal
causes an increase in another protein identified by the team, which helps the
due to a mutation
neurons compensate for the harmful effects. As a result, flies that carry the
in the DYT1 gene.
human mutant torsinA have a shorter lifespan and accumulate different proteins
in their brains. Here, a little fly has become a tiny model of dystonia that can be
studied at the brain level to help researchers reconcile the conflicting results obtained
in other cell and animal models.
The second paper comes from a group well-known to our readers. In fact, this work was supported in part by DMRF.
A team of investigators from Harvard and the University of Alabama led by Dr. Naoto Ito capitalized on the fact that
fruit flies, unlike humans, have only one torsin-related gene. If this gene is removed, the insects cannot move normally.
There is also a substantial drop in brain dopamine levels and reduction in the activity of a key enzyme in the dopamine
pathway. The fly’s movement problems can be rescued by feeding the larvae dopamine. In the current study, the team
showed that if you insert the human DYT1 mutant of torsinA into the fly, this also inhibits locomotion in larvae and
adult flies as well as decreases levels of the enzyme. Furthermore, when both normal and mutated torsinA were
present, there was a similar reduction in the movement and enzyme activities. This seems to support the hypothesis
that mutated torsinA interferes with the activity of normal, ‘healthy’ torsinA.
These studies are remarkable because they are clarifying the role of a known dystonia-causing protein and providing
a superb model system to test molecular and cellular hypotheses. This is critical for developing new treatment strategies.
The studies reinforce the value of the fly as a dystonia model while rodents and other models have recently attracted a
great deal of attention. So, please, think twice before trying to swat a fruit fly—his cousins in the lab are busy helping
us solve the mysteries of dystonia.
Dr. Naoto Ito received funding for his work through the Department of Defense Peer Reviewed Medical Research Program.
Learn more on page 14.
SUM MER 2 015
10
PEOPLE ON THE MOVE
The DMRF is deeply grateful for our grassroots volunteers who work year round to promote dystonia
awareness and fundraise for medical research. Every effort and every volunteer makes a difference!
For 15 years, DMRF supporters and support group
leaders Janice and Len Nachbar of New Jersey have
obtained annual dystonia awareness proclamations
from the Township Committee of Freehold and Monmouth
County. Governor Chris Christie has also acknowledged
the need for increased dystonia awareness due to their
efforts. Congratulations and thanks to Janice and Len
for their tremendous contributions to improving dystonia
awareness in New Jersey and beyond. Pictured from
L to R: Freehold Township Mayor Tom Cook, Committeewoman Barbara McMorrow, Len Nachbar, Janice Nachbar,
Committeeman David Salkin, Committeeman Anthony
Ammiano, and Committeeman Lester Preston Jr.
The 2nd Annual Multiple Sclerosis Meets Dystonia
Golf Tournament took place June 14 at Sand Springs
Golf Course in Drums. Pat Brogan and Dave Latoff
teamed up to raise awareness and funds for two debilitating disorders: dystonia and multiple sclerosis. Pat is a
former college basketball coach who developed dystonia after a hit-and-run collision while training for a
triathlon.
DMRF Past President Claire Centrella hosted an online
Pampered Chef fundraiser. A second Pampered Chef
fundraiser in honor of Crystal McCarthy also supported
the DMRF.
On May 10, Patrician Bergeron and the Verville family
held the 10th Hands for Movement Freedom benefit
piano recital in Vermont. Alexandre Verville, who
has dystonia, inspired this annual concert and played
piano along with 19 pianists—all students of Patricia.
The event raised $450.
In May, Denise Gibson completed the Lilac Bloomsday
Run held in Spokane, Washington on behalf of the
DMRF. Denise walked 7.46 miles and raised $1,200—
all this despite multi-focal dystonia, ongoing deep brain
stimulation programming, a weak neck, and a broken rib.
The Baron family of Rhode Island organized the
first-ever Providence Dystance4Dystonia Zoo Walk at
Roger Williams Park on June 27. Approximately 400
people attended to support dystonia research and
bring visibility to the disorder. Twenty-year-old Bryan
Baron was diagnosed with dystonia as a teenager in
2007. Special thanks to Leadership Chair Paula
Schneider for her role in supporting and organizing
the Zoo Walk.
DY STON IA DIA LOGU E
11
Members of the Phoenix
and Prescott Dystonia
Support Groups in Arizona,
led by Bob and Virginia
Spencer, represented the
DMRF at the “Celebrate
Life! Health Expo 2015”
offered by Yavapai Regional
Medical Center. Bob Spencer
is affected by cervical dystonia and underwent deep brain
stimulation surgery last
year. Pictured support group
members: Bob Sturdevant,
Joelle Katan, Bob Spencer,
Noreen Passmore, Jim
Stobbs, Virginia Spencer,
and Miyoshi McMurray.
Sandra Aresta and Michael Katz threw a joint party
to celebrate milestone birthdays. In lieu of gifts, they
invited guests to make donations to the DMRF. Their
daughter is affected by early-onset generalized dystonia.
The Bono family of Connecticut generously shared their
story with the TV series Diagnose Me on Discovery LIFE.
The episode “Ballerina Interrupted” chronicles the
process by which daughter Sullivan was diagnosed
with dystonia after a serious misdiagnosis and
unnecessary medical procedures. Sullivan Bono
was also named an Everyday MVP by News 8 WTNH
and Frontier Communications.
Ashlyn Lacey, a 12-year-old from Missouri with dystonia,
was presented with a new iPad by Matina KoronisKoester, president and CEO of St. Louis- based Digital
Partners Incorporated (dpi), which recently created
Move for Dystonia, a campaign to benefit the DMRF.
Representatives from the Dystonia Support & Advocacy
Group of San Diego, Paul Fowler and Martha Murphy,
were once again interviewed on the UT Community
Spotlight internet radio program to discuss dystonia
and the upcoming, sold-out Dystonia Benefit Concert
with recording artist Juice Newton in October. Leader
Martha Murphy and Susi Pensel helped represent the
DMRF at the 19th International Congress of Parkinson’s
Disease and Movement Disorders in San Diego in June.
Stay in Touch!
Sign up for the DMRF's monthly e-newsletter for the latest updates
and announcements: www.dystonia-foundation.org/email
SUM MER 2 015
12
St. Philomena School in
Portsmouth, Rhode Island
hosted a bake sale for the
DMRF in honor of Maddie
Paolero and raised over
$600. The funds were
added to the total raised
for Team Reno at the
Dystance4Dystonia
Providence Zoo Walk.
Special thanks to teacher
Karen Turner.
Eagle Rare Kentucky Straight Bourbon Whiskey has
named Melissa Phelps the winner of the 2015 Rare
Life Survival Award. Eagle Rare donated $5,000 to her
charity of choice, the DMRF. Many congratulations and
thanks to Melissa—and to everyone who voted for her
story. She is in the running again this year. Show your
support by voting daily at http://www.eaglerarelife.com/
content/melissa-phelps.
Long time DMRF supporters Linda and Roger Yerkey
of Illinois raised $1,700 in support of the DMRF and a
second charity by hosting a trivia fundraiser. Proceeds
were split between the two organizations.
Debbie Harris, Second Grade Teacher in the North
Hills School District, Pittsburgh, hosted a District
Denim Day for Dystonia fundraiser in honor of her
sister. The first-time event raised over $560.
The Westminster Choir of The First Presbyterian
Church at Caldwell in New Jersey held a special
collection for the DMRF in honor of Lydia Nathans
at the Maundy Thursday service. The Nathans family
hosted their 3rd Nathans Family Yard Sale in May,
and raised over $2,200.
The students of Katie Rosa-Martin’s Family Consumer
Science I and II classes at Sullivan County High School
in Laporte, Pennsylvania organized a sewing kit
fundraiser in support of the DMRF.
The DMRF extends our condolences and gratefully acknowledges
the generous gifts received in memory of the following:
Emanuel Batista
Albert Foley
Shirley Krusheski
Phillip Schevetto
Yvonne Berard
Tommy Ford
Jamie Lafferty
Marvin Scobee
Frances Borowsky
Yvonne Marie Fross
David Lewis
Diane Shaw
Willie Brown
Frances Geraci
Stevie Melamed
Matthew Simmons
Joyce Campbell
Joseph Geraci
Enid June Meltzer
Anita Simon
Rev. Ronald Channel
Linda Geraci
Chad Orison
Selma Marie Skiba
Janene Ann Conte
Mario Geraci
Doris Oster
Bruce Slepian
David Cullinane
John Phillip Gunther
Muriel Ostroff
Martin Sloate
Dorothy Dale
Sara Harris
Aleksandra Passarello
Carol Stallions
Michael DeCrescente
Richard Ingebretsen
Jyoti Patel
Sophia Stanich
Frankie Depanfilo
Toby Iverson
Richard Pollack
Vincent Tabbachino
Martha Ann Dufault
Ara Johnston
Morty Pomerantz
Mike Underwood
Teressa Duffey
Don Kahn
Terry Rafferty
Elaine Weinberg
Robert Easter
James C. Kilik
Bebe Rose
James Wiles
Bertha Eichler
Mary Kolls
Iris Salter
Frank Wyeth
DY STON IA DIA LOGU E
13
Not Just Any Body: Living Well with Dystonia
Dystonia is a movement disorder that impacts the physical body, and it can also affect emotional and
psychological health. Living well with dystonia includes treating the physical symptoms, protecting emotional
and psychological well-being, and accommodating your unique treatment needs as an individual.
There is no single strategy for living
well with dystonia that works for
everyone. The following suggestions
have been compiled from individuals
with dystonia, support leaders, and
healthcare professionals.
;
Seek Out Expert
Healthcare Providers.
It often takes a team
of experienced professionals to
diagnose and treat dystonia. This
may include a movement disorder
neurologist, physical therapist,
psychiatrist, psychotherapist/
counselor, and others.
Actively Participate in Your
Treatment. Learn about dystonia.
Make informed choices about
your care with the input of your
medical team.
wqwq
Develop a
Multi-Layered
Support System.
Seek out supportive family and
friends, local dystonia support
groups, online support groups,
community events, and self-help
resources. Enlist the help of a psychotherapist or counselor to help
navigate concerns and vulnerabilities.
i
Listen to Your Body.
Respect and honor your
individual need for sleep,
rest, nutrition, exercise, relaxation,
and time/scheduling.
v
Cautiously Explore
Complementary Therapies.
Talk to your doctor about
non-traditional therapies that interest
you. Different complementary
approaches may work for different
people, but keep in mind that
numerous practitioners and outfits
falsely claim to have a unique
ability to treat dystonia.
Exercise. The benefits of
exercise can be profound.
Consider working with a physical
therapist to develop an exercise plan
that works for you.
Seek Help When You Need It.
If you need assistance, reach out
and be specific about what you are
having trouble with. Accept help
when offered—and without guilt.
Treat Depression & Anxiety.
Depression and anxiety can
dramatically impact quality of life
and the severity of motor symptoms.
Consider being evaluated for
depression and/or anxiety and,
if symptoms are present, seek
treatment.
Be Mindful of Stress.
Regular stress reduction
and relaxation practices can have a
positive impact on symptoms and
overall well-being.
Take Care of Your
Relationships. Resist the
temptation to isolate from other
people. If family or love relationships
are strained, consider enlisting the
help of a therapist to bring you
closer to those you care about.
Remain as Active and
Social as Possible.
It may be physically and/or
mentally demanding to go
certain places or complete specific
tasks. Plan ahead, pace yourself,
and rest when needed.
Embrace Awkward Social
Situations. Your symptoms may
flare at extremely inopportune
times. Strangers may occasionally
misinterpret your body language.
Be forgiving with yourself in these
moments.
V
Do Things You Enjoy.
It can be easy to let
pleasurable activities
and fun fall by the way side. Create
space in your routine for activities
and experiences that invigorate you
and keep you going.
Contact the DMRF for Assistance.
We can be reached at dystonia@
dystonia-foundation.org or
800-377-3978. Look for the
DMRF on Facebook and Twitter.
Special thanks to Steven Frucht, MD and Pichet Termsarasab, MD for reviewing the content of this article.
SUM MER 2 015
14
Flexing Our Muscles: Strength through Advocacy
On April 14–15, nearly 100
DOD Research Program
Awards Millions in Funding
for Dystonia Investigators
volunteers representing the
Dystonia Advocacy Network (DAN)
gathered in Washington, DC on
behalf of the greater dystonia
Thanks to the tireless work of dystonia
community. Following a day of
advocates, in 2010 Congress began
legislative training, advocates met
to include dystonia in the Department
with Members of Congress and
of Defense (DOD) Peer Reviewed
their staff on Capitol Hill to share
Medical Research Program (PRMRP).
their stories and educate Senators
And each year, advocates must push
and Representatives on the needs
of affected constituents. DAN Chair
Emma Mattes presented Congressman David Jolly of Florida with the
Distinguished Public Service Award.
Two of the most important requests
dystonia advocates made to their
legislators focused on federal funding
of dystonia research:
Advocates asked legislators to
support a funding level of $32 billion
for the National Institutes of Health
(NIH) in the Labor-HHS-Education
Appropriations Bill for Fiscal Year
2016. This level of funding will
support the progress NIH has made
on medical research. Right now,
only 1 of 11 highly-scored research
proposals are funded by the NIH.
This means 10 out of 11 good
studies are not funded. If this trend
continues, researchers will likely be
forced to look elsewhere for funding,
including institutions in other
countries, risking an evacuation
of researchers from the US.
Advocates also asked legislators to
keep dystonia as a condition eligible
for study through the Department
to keep dystonia on the exclusive list
of Defense (DOD) Peer-Reviewed
Medical Research Program. As
Congress drafted the Defense
Appropriations Bill for Fiscal Year
2016, advocates urged them to
include dystonia in this program
so that investigators can apply for
research funding—and they were
successful.
of conditions eligible for study. The
US military personnel are at
increased risk of traumatic brain
injury and developing dystonia,
especially those in combat operations.
To date the DOD has funded over
$3 million in dystonia research, and
this work represents studies by top
dystonia experts. Read more about
dystonia and TBI among military
personnel on page 17.
2014
A Novel Animal Model for
Investigating the Neural Basis
of Focal Dystonia
Craig Evinger, PhD
Stony Brook University
School of Medicine
$753,634
The DAN is comprised of five
dystonia patient groups working
collaboratively on behalf of the
greater community: Dystonia
Medical Research Foundation,
Benign Essential Blepharospasm
Research Foundation, National
Spasmodic Dysphonia Association,
National Spasmodic Torticollis Association (NSTA), ST/Dystonia, Inc.
results have been game-changing;
now both the National Institutes of
Health (NIH) and the DOD invite
dystonia researchers to apply for
funding. The DOD PRMRP has funded
the following dystonia investigations
since 2010:
Pathomechanisms of Dopamine
Dysregulation in DYT1 Dystonia:
Targets for Therapeutics
Ellen Hess, PhD
Emory University School of Medicine
$1,200,000 (pending)
DY STON IA DIA LOGU E
15
High School Students Organize
“Stomp Out Dystonia 5K”
2013
Identifying Molecular Regulators
of Neuronal Functions Affected
in the Movement Disorder
Dystonia
Nobutoshi Harata, PhD
University of Iowa
$1,132,500
Developing Gene Silencing
for the Study and Treatment
of Dystonia
Pedro Gonzalez-Alegre, MD, PhD
Philadelphia Children’s Hospital
$1,132,500
2012
Dopamine Dysfunction
in DYT1 Dystonia
Nutan Sharma, MD, PhD
Massachusetts General Hospital
$176,800
2011
Gene Expression-Based
High-Throughput Screening
(GE-HTS) To Identify Novel
Therapeutics for Dystonia
D. Cristopher Bragg, PhD
Massachusetts General Hospital
$131,126
2010
Creation of a Mouse with
Stress-Induced Dystonia:
Control of an ATPase
Chaperone
Kathleen J. Sweadner, PhD
Massachusetts General Hospital
$118,843
First-time Event Raises Awareness & Research Funds
Seventeen-year-old high school seniors
Caitlyn Connelly and Melanie Edwards
organized the first-ever Stomp Out
Dystonia 5K Walk in Bensalem,
Pennsylvania on May 16. A crowd of
400 people attended, and the event
raised $16,000 for urgently needed
medical research toward a cure.
Caitlyn Connelly and Melanie
Edwards raised $16,000 in
support of the DMRF.
“It was a truly amazing day, and we
are blown away by the amount of
support we received,” says Caitlyn,
who was diagnosed with dystonia
approximately five years ago.
At the event, Caitlyn and Melanie were presented with Certificates of
Appreciation by Janice and Len Nachbar, area support group leaders and
representatives of the DMRF. “Caitlyn and Melanie accomplished much
more than many adults would be able to, and they did it while attending
high school honors classes! Two unbelievable young women,” remarked Len.
Caitlyn was born with cerebral palsy and developed generalized dystonia
at age 12. “Imagine your muscles painfully contracting so severely that you
can’t use your hands,” she explains. “Imagine being awake for days because
excruciating spasms relentlessly grip your body. Imagine being unable to
walk, swallow, speak, or brush your teeth because you can’t control your
movements. This is the reality of dystonia for me and for many others.”
Caitlyn has endured a number of treatments to try to reduce the powerful
dystonic movements such as oral medications, botulinum toxin injections,
and multiple surgeries. The surgical procedures include an implanted device
that delivers medication directly into her spinal column and deep brain
stimulation, which involves electrodes placed deep in her brain and powered
by a pacemaker-like stimulator in her chest wall. She has undergone orthopedic
surgeries to correct spinal curvatures caused by the dystonic muscle spasms
and has a feeding tube for nutrition. Caitlyn uses a power wheelchair for
mobility and augmentative communication.
Caitlyn and Melanie celebrated graduation in June.
SUM MER 2 015
16
Douglas Kramer Advocacy
Award Recipients Recognized
at Advocacy Day
Rebecca Sharp advocates on behalf of her
father who recently learned he had been
The Douglas Kramer
misdiagnosed with dystonia in 2008.
From L to R: This year’s Douglas Kramer
Young Advocate Award
“Oddly enough,” she explains, “my
Young Advocate Award recipients are
heart and passion for the dystonia
is
presented
to
individuals
Miyoshi McMurry, Joseph Buffa,
community has only increased through
Rebecca Sharp, Devin McClernan,
committed to making a
and Ginny Bryan.
my father’s revised diagnosis. If more
difference through
had
been known about dystonia, things
legislative advocacy
would be so different for him.” Rebecca
At Dystonia Advocacy Day (April 14–15,
worked with her parents to start a dystonia
2015), the DMRF was extremely proud to
support group, authored a dystonia awareness
announce the 2015 Douglas Kramer Young
blog, and has been integral in recruiting runners for
Advocate Award recipients: Virginia Bryan, Joseph
the DMRF’s New York City Marathon team.
Buffa, Devin McClernan, Miyoshi McMurry, and
Rebecca Sharp. These exceptional volunteers are
Before Devin McClernan’s film, Dystonia Devin, won
working with the DMRF throughout the year on
the American Academy of Neurology’s prestigious Neuro
various initiatives at federal and state levels.
Film Fest in 2014, he participated in legislative advocacy
and presented at DMRF events. “Without the progress
Joseph Buffa is a university student whose 11-year-old
made through advocacy, I might have not been able to
sister was diagnosed with dystonia at age three. Joseph’s
undergo deep brain stimulation surgery, which alleviated
first experience getting involved in the dystonia commuof almost all my pain, straightened my posture, and
nity was attending last year’s Detroit Dystance4Dystonia
considerably increased my speech intelligibility,” says
Zoo Walk. This inspired him to create opportunities to
Devin. “The behind-the-scenes advocacy for the dystonia
promote dystonia awareness. “My sister does not let
community has enhanced the lives of those afflicted by
dystonia define her,” he explains. “Her fight makes
the condition and turned my life around.”
me want to fight with her.”
Virginia (Ginny) Bryan has lived with dystonia as long
as she can remember but was misdiagnosed for 26 years.
Since being properly diagnosed with myoclonus-dystonia,
Ginny has supported DMRF events such as the
Toss4Dystonia Cornhole Tournament, contributed to
the Dystonia Dialogue, and serves as a co-admin of the
20/30 Dystonia Group on Facebook. She says, “The
dystonia community is at a turning point where it has
all the necessary tools to be as advanced as the cystic
fibrosis community or breast cancer, if we continue to
fight this beast of a disorder.”
Miyoshi McMurry is a US Air Force Veteran and
aspiring counselor whose career was derailed by the
onset of dystonia in 2012 coupled with additional
service-related health conditions. She explains, “When
I speak up and advocate for dystonia, it not only helps
me cope with the stigma, but I hope it empowers those
whose are self-conscious or struggling with acceptance—
which I believe we all cycle through. I hid dystonia as
best I could for as long as possible but last year I began to
speak up.” Miyoshi created an online dystonia awareness
campaign and partnered with local businesses to organize
an awareness event. She also worked with her children’s
schools to educate students.
DY STON IA DIA LOGU E
17
US Service Members at Increased Risk
of Dystonia Following TBI
Dystonia is a chronic neurological movement disorder that can result from genetic mutations,
exposure to certain medications, and brain injury. The frequency of traumatic brain injury (TBI)
among US military service members puts them at increased risk for dystonia. Investing in medical
research is needed to improve treatment and outcomes for US troops, veterans, and civilians.
What is the Connection between
Dystonia and TBI?
Traumatic brain injury (TBI) occurs when a bump,
blow, or jolt to the head or a penetrating head injury
disrupts the normal function of the brain. TBI is a
serious health issue for which military service members
are at increased risk, whether on active duty or reserve
status. The Department of Defense (DOD) describes
TBI as one of the signature injuries of troops wounded
in the Afghanistan and Iraq wars. US forces suffered
320,344 instances of TBI from 2000–2014.
The link between brain trauma and movement disorders
such as tremor and dystonia is well-established; studies
date back to the late 1800s. The most well-known
post-traumatic movement disorder is “punch drunk
syndrome,” (i.e. chronic traumatic encephalopathy)
marked by parkinsonism and other motor symptoms
in professional boxers.
Estimates to the frequency
of movement disorders
resulting from severe head
injury vary from 13-66%.
Dystonia is second only to
tremor as the most common
movement disorder to result
from injury to the central nervous
system. While a service member
may recover from the original
injury, the dystonia can leave
him/her permanently disabled.
Dystonia results not only from injury to the brain but
also peripheral injury to a limb or body part. Based on
the data available, dystonia is the most common movement disorder to occur from peripheral trauma.
What Treatment is Available?
Post-traumatic dystonia, whether due to central nervous
system or peripheral injury, is often challenging to treat
effectively. Available therapeutic approaches include oral
medications, botulinum neurotoxin injections, intrathecal
baclofen, and deep brain stimulation. These therapies
attempt to alleviate pain and disability by suppressing
symptoms, but do not correct the underlying disorder.
Need for Research
While researchers have long acknowledged the link between
dystonia and trauma, much remains to be learned about
the underlying pathological mechanisms. Further study
is needed to improve therapies and outcomes for US
troops experiencing dystonia resulting from TBI.
Dystonia investigators have been funded every year
dystonia has been included in the DOD CongressionallyDirected Peer Reviewed Medical Research Program
(PRMRP) list of conditions eligible for study, demonstrating the strength of dystonia applications received.
Dystonia studies funded by the PRMRP have been led
by top dystonia experts whose work represents research
on movement disorders and the fundamentals of human
motor control.
See page 23 for an interview with a veteran who developed
dystonia from a service-related injury.
SUM MER 2 015
18
Research Studies on
Focal & Generalized
Dystonia Need Volunteers
The following clinical studies on dystonia at major
movement disorder centers are recruiting volunteers.
Sensorimotor Integration in Focal Hand Dystonia
Researchers at the University of Rochester in New York
are looking for adults with dystonia to participate in a
research study on focal hand dystonia.
You may qualify for this study if you:
1. Are a musician and have been diagnosed with focal
hand dystonia.
2. Are not a musician and have been diagnosed with
generalized or segmental dystonia affecting your hands.
3. Are over 18 years of age.
You may not qualify for this study if you:
1. Have the inability to use your arms or hands
for any reason.
2. Have had botulinum toxin injections within the
past six months.
3. A history of neurological disease or disorders other
than dystonia.
This is a research study conducted at the University of
Rochester Medical Center. You will be asked to perform
finger-tapping tasks and complete some questionnaires.
There are no blood draws or study medications. Compensation for time and travel will be provided.
For more information:
Visit http://goo.gl/a0VTYV or contact
Molly Jaynes at 585-273-1005 or
molly_jaynes@@umc.rochester.edu.
Reproductive Factors & Cervical Dystonia
Researchers at the University of Tennessee Health
Science Center (UTHSC ) are conducting an online
research study related to the correlation between various
reproductive, hormonal, and environmental factors
with cervical dystonia. Your participation will take
approximately 30 minutes and will require the
completion of an online questionnaire.
To participate:
• You must have been diagnosed with cervical dystonia.
• You must be at least 18 years of age.
• You must have access to the internet.
• You must ask at least two biologically-unrelated
individuals (such as friends or co-workers) of the
same gender and approximate age as you to also
complete the questionnaire as control subjects.
Participation is entirely voluntary. Submissions are
anonymous. No identifying information will be
requested linking you to the information you provide.
Access the survey at
https://www.surveymonkey.com/s/7KY7FCF
This study is being conducted under the guidance of
Dr. Mark LeDoux, Professor of Neurology at UTHSC,
and member of the Dystonia Coalition.
DY STON IA DIA LOGU E
19
Dystonia 101
Dystonia can be a confusing disorder to understand.
It never hurts to brush up on the basics:
Efficacy of Levetiracetam in
Oromandibular & Cranial Dystonia
Researchers at the National Institute of Neurological
Disorders and Stroke are looking for people with
oromandibular (oral) or cranial dystonia to participate
in a study exploring the effect of the drug levetiracetam in volunteers with these focal dystonias.
You may qualify if you:
• Are 18-80 years of age.
• Are diagnosed with primary oromandibular
or cranial dystonia.
• Have never taken levetiracetam.
• Are able to remain on your current doses of
dystonia medications for four weeks prior
to the study.
• Have not had botulinum toxin injections
within 12 weeks of starting this study.
You may not qualify if you:
• Know the cause of your dystonia.
• Have balance problems, frequent falling,
or severe dizziness.
• Are unable to take medications by mouth.
• Have abnormal kidney function.
• Are pregnant, nursing, or planning to become
pregnant in six months.
• Have mental health problems.
This outpatient study involves six visits, each of
which may last up to two hours. All study-related
tests and medications are provided without cost.
Travel assistance will be provided.
For more information:
Contact Dr. Jung E. Park at 301-443-3475
or [email protected].
• Dystonia is a neurological movement disorder.
It affects the ability to control voluntary muscle
movements.
• Dystonia does not affect smooth muscles, such
as the heart.
• There are many forms of dystonia. It can affect
a single body area or multiple muscle groups.
• In cases of isolated (primary) dystonia, dystonia
is the only movement symptom present, with the
exception of tremor.
• Dystonia may also occur in combination with
other movement symptoms such as myoclonus
or parkinsonism.
• Inherited dystonias are those with a proven
genetic origin, for example mutations in the DYTdesignated genes such as DYT1, DYT5, or DYT11.
• Dystonia may be acquired (secondary) due
to a specific life event or series of events,
for example birth injury, drug exposure, brain
injury, or infection, and other factors.
• People with acquired dystonia often have other
neurological symptoms, some of which may
affect more than just muscle movement.
• Treatment options include oral medications,
botulinum neurotoxin injections, surgery, and
less invasive methods such as physical or
occupational therapy and relaxation practices.
• Stress does not cause dystonia, but symptoms
may worsen in stressful situations.
For more information, visit
www.dystonia-foundation.org
SUMMER 2015
20
Employees with Dystonia:
Accommodation & Compliance
By Eddie Whidden, MA, Senior Consultant, Motor Team, Job Accommodation Network
Employers are required, in certain circumstances,
to provide reasonable accommodations for qualified
employees and job applicants with disabilities. The
Job Accommodation Network (JAN)’s Accommodation
and Compliance Series is designed to help employers
determine effective accommodations and comply with
Title I of the Americans with Disabilities Act (ADA).
This article addresses ADA information, accommodation
ideas, and resources for additional information
relevant to dystonia.
Accommodations should be made on a case by case basis, considering each employee’s individual limitations and
accommodation needs. Employers are encouraged to contact JAN to discuss specific situations in more
detail (http://askjan.org/).
Is Dystonia a Disability Under the ADA?
The ADA does not contain a list of medical conditions that constitute disabilities. Instead, the ADA has a general
definition of disability that each person must meet. Therefore, some people with dystonia will have a disability under
the ADA and some will not. A person has a disability if he/she has a physical or mental impairment that substantially
limits one or more major life activities, a record of such an impairment, or is regarded as having an impairment.
Accommodating Employees with Dystonia
People with dystonia may develop limitations in some of the areas discussed on the opposite page, but seldom
develop all of them. Also, the degree of limitation will vary among individuals. Not all people with dystonia will
need accommodations to perform their jobs and many others may only need a few accommodations. The following
is only a sample of the possibilities available. Numerous other accommodation solutions may exist.
Questions to Consider:
1. What limitations is the employee with dystonia experiencing?
2. How do these limitations affect the employee and the employee’s job performance?
3. What specific job tasks are problematic as a result of these limitations?
4. What accommodations are available to reduce or eliminate these problems? Are all possible resources being used
to determine possible accommodations?
5. Has the employee with dystonia been consulted regarding possible accommodations?
6. Once accommodations are in place, would it be useful to meet with the employee to evaluate the effectiveness
of the accommodations and to determine whether additional accommodations are needed?
7. Do supervisory personnel and employees need training regarding dystonia?
DYSTONIA DIALOGUE
21
ACCOMMODATION IDEAS
General Accommodation
Considerations:
• Accessible work-site
• Parking close to the work-site
• Accessible entrance
• Automatic door openers
• Accessible restroom and
break area
• Accessible route of travel to
other work areas used by the
employee
• Accessible workstation
• Materials and equipment
within reach
• Workstation close to
restrooms, break areas, and
other common use areas
• Alternative computer, phone,
writing aids, and other assistive
devices
• Ergonomic workstation design
• Sensitivity training to coworkers
and supervisors
Keyboarding and Using
a Mouse:
• Speech recognition software
• Large-key keyboards and
on-screen keyboard software
used in conjunction with a
mouse
• Alternative mice including
trackballs, touchpads, foot
mice, head pointers, and
programmable mice
• Word prediction and alternative
mouse software
Writing:
• Grip aids
• Weighted pens
• Writing cuffs
• Orthotic devices
• Soft grasp build-ups
• Portable recording products
• Clipboards
• Desk slants
Using the Telephone:
• Speaker-phones
• Telephones with programmable
number storage
• Phone holders
• Telephone headsets
Using Tools:
• Grasping cuffs
• Ergonomically designed tools
and handles
• Vibration dampening wraps
and gloves
• Vises
• Work positioners
• Foot controls
• Pistol grip attachments
• Orthotic devices
Lifting:
• Portable lift equipment
• Hoists
• Tilt-tables
• Tailgate lifts
Carrying:
• Lightweight carts
• Shoulder bags
• Backpacks
• Electrically powered carts
or scooters with baskets
Standing:
• Sit/stand stools
• Standing frames
• Lumbar support stands
• Anti-fatigue matting
• Rest breaks as needed
Climbing:
• Stair-lifts
• Wheelchair platform lifts
• Rolling safety ladders with
handrails
• Work platforms
• Step-stands
• Hydraulic personnel lifts
Walking:
• Canes
• Crutches
• Rolling walkers with seats
• Wheelchairs
• Powered wheelchairs
or scooters
Driving:
• Hand controls
• Steering wheel knobs
• Powered steering
• Automatic transmission
vehicles
• Designated parking
Housekeeping/Cleaning:
• Lightweight vacuum cleaners
• Back-pack vacuums
• Grasping cuffs
Speech:
• Augmentative and alternative
communication devices
• Voice amplifiers
JAN is one of several services provided by the US Department of Labor’s Office of Disability Employment Policy.
The full-length Accommodation and Compliance Series on dystonia is available at http://askjan.org/ media/dystonia.html
Special thanks to volunteer Roberta Senzel for directing the DMRF to JAN resources.
SUMMER 2015
22
PERSONAL PROFILE
Wayne Erickson
Wayne Erickson is a retired bus driver who developed blepharospasm over
10 years ago. This year he is organizing the 7th Annual Dystonia Golf Classic
to benefit the DMRF. His sister, DMRF Board Member Donna Driscoll, is
affected by focal leg dystonia.
How did your symptoms
begin and how were you
Wayne Erickson is affected diagnosed?
by dystonia of the eye lid
I was driving a bus and one
muscles.
day my eyes started to water
and blink rapidly, and I started to yawn like I hadn’t had
sleep in days. I went to the local eye doctor and he gave
me some drops that didn’t work. After a while I went to
an eye clinic and received botulinum toxin injections in
my eyelids for about 18 months, one shot a month.
That didn’t do any good. My sister Donna, who has
dystonia, arranged for me to see a doctor at the National
Institutes of Health [NIH]. I flew out there and was
diagnosed with blepharospasm. The dystonia affects my
eyelids. The shortest attack is a few minutes, the longest
was about four hours. My eyelids go nuts, I get the deep
yawning and my eyes water ferociously. It’s in both eyes,
mostly the right. Over the past year it has taken a pretty
big effect over my life.
How do you manage the symptoms?
After going to NIH, even though I was improperly
treated with botulinum toxin before getting diagnosed,
they said try it again. Nothing happened. I know it does
help other people. One thing that does help me is that,
when I feel a dystonia attack coming on, I douse my eyes
with hot water. And that seems to stop the dystonia attack.
The other thing I found is, when I feel an attack coming
on, if I can’t get to hot water I get into a dark room and
stay there until the attack goes away. So through trial and
error I came up with those two things that definitely help
me out. I also found that by wearing big heavy sunglasses,
with shields on the sides, that does me a world of good too.
What motivated you to get involved with
the DMRF?
While I was sitting in the waiting room at the NIH, this
mother and her young daughter came into the room.
The daughter had a bandage around her mouth.
The mother took the bandage off and the girl’s jaw
was about 2 ½ inches open. She could never close her
mouth. And she had a big feeding tube stuck in her side.
It was dystonia. I love working with kids, I’ve been doing
that all my life. That’s when I decided that if there was
anything I could do to get the word out about dystonia
and try to find a cure, I was going to do it. And I’ve been
doing it ever since.
What advice do you have for others living
with dystonia?
When I was diagnosed with this thing the doctors told
me it was something I was going to have to adapt to.
That was the best advice I got, right then and there. We
do adapt. Being able to talk to someone who has dystonia,
or who knows about dystonia, is important. My sister
and I have had many conversations about dystonia and
the way it affects us. Talking to someone who can relate
to what you are going through, that’s the best thing in
the world.
The people with dystonia here in Minnesota that I’ve
talked to, almost all of them, have said they feel weird.
They feel out of place and like they shouldn’t be here
because they have dystonia. And I tell them that’s not
even close to being true. You have a disorder, yes, there
is nothing you can do about that. But you’re just as good
as anybody else. Go out and live your life, and give it the
best you can. And try to spread the word about dystonia
and what it does to people so maybe we can stop this
from affecting more people.
For more information about the 7th Annual Dystonia Golf
Classic on August 15 in Cannon Falls, Minnesota, visit
https://www.dystonia-foundation.org/mndystoniagolf.
DYSTONIA DIALOGUE
23
PERSONAL PROFILE
Johnny McCoy
Johnny McCoy is a US Army Veteran who acquired cervical dystonia after
a service-related injury. He has participated in Dystonia Advocacy Day,
participated in the Dystonia Moves Me campaign, and enlisted the help
of his employer, Lowe’s, in promoting awareness.
How did your symptoms
begin and how were you
Johnny McCoy developed diagnosed?
cervical dystonia following
In 1975 I was in the
an injury.
Tennessee National Guard.
I was riding in a personnel carrier, which is like a small
tank. The driver was not watching where he was going
and drove into a 14-foot ditch, straight down. I had a
helmet on which probably saved my life. I got slammed
into the wall, and it knocked the helmet off. My shoulder
took most of the impact but it definitely hurt my neck
quite a bit. I didn’t have any use in my right arm for
some time. Later on, I noticed my head was turning to
the left. I went to the doctor and of course they didn’t
know what it was. Time progressed and it started to get
worse. My head was pulling to the left, which made it
very difficult to drive a car. Sometimes I sat sideways
in the seat to do so. I finally went to some neurologists
locally and they diagnosed it as torticollis [cervical
dystonia]. At that time there wasn’t a lot of botulinum
toxin going around, so to speak, so they sent me to a
center in Nashville. I tried botulinum toxin injections
two or three times and then had a bit of a reaction. And
it didn’t seem to help a whole lot. I was trying to get
some benefits from the VA [Veterans Administration]
to help me out. Of course I was denied for 10 years or
so. People aren’t eager to hire you when you shake and
your head turns to the side— they don’t know what’s
going on with you.
What motivates you to promote dystonia awareness?
The more educated I got on dystonia the more I wanted to
help not only myself but other people. One day someone
at work asked me how long I’d had Parkinson’s [disease],
and I said well I don’t have Parkinson’s. I explained my
situation to them. They gave me a gentleman’s name at
the VA and I started working with him. That’s when
things started to improve—I was on the road to helping
myself. I contacted the DMRF and they helped me
tremendously too. People still say to me, what are you
shaking your head for? How long have you had Parkinson’s?
I don’t care what they say any more. They don’t understand
until you tell them. So why not educate them.
How do your symptoms affect your daily life?
As we’re sitting here, I’m shaking and my head is turning
to the left. The DMRF put me in touch with a movement
disorder doctor in Memphis. He’s a fine guy. He has me
on another kind of botulinum toxin. This stuff has helped
me quite a bit, but it doesn’t solve the problem. It always
comes back. The pain is in the morning or mainly at
night. After a day of your head moving around, it kind
of wears you out.
What was it like to participate in Advocacy Day?
I never imagined doing that. It was great. I was able
to take my wife with me. My wife is very supportive.
We met with the legislators from Tennessee, and I told
my story. The experience of going to Washington for
Dystonia Advocacy Day is something everybody needs
to do at least once—I’d go every year if I could. I want
to help everybody, and my emphasis is the veterans
because there are going to be a lot of folks that have this.
A lot of people don’t think a knock on the head can
cause something like this.
Any advice for people who are newly diagnosed?
Find a good neurologist to start. Contact the DMRF.
The help they offer is really good.
For more information on dystonia and military service
members, see page 17.
Each spring, dystonia advocates travel to Washington, DC
for Advocacy Day. Learn more on page 14.
Dystonia Dialogue
Dystonia Medical Research Foundation
One East Wacker Drive • Suite 2810
Chicago, Illinois 60601-1905
PHONE 312 755 0198 • 800 377 DYST (3978)
WEB www.dystonia-foundation.org
UPCOMING EVENTS
AUGUST 15 – Minnesota Dystonia Golf Classic
AUGUST 30 – St. Louis Dystance4Dystonia Zoo Walk
SEPTEMBER 12 – Cincinnati Dystance4Dystonia Zoo Walk
SEPTEMBER 19 – Cleveland Dystance4Dystonia Zoo Walk
SEPTEMBER 19 – Binghamton Dystance4Dystonia Zoo Walk (NY)
SEPTEMBER 26 – Toss4Dystonia Cornhole Tournament, Buffalo, NY
SEPTEMBER 27 – Pittsburgh Dystance4Dystonia Zoo Walk
OCTOBER 17 – Dystance4Dystonia Walk, Putnam, CT
OCTOBER 4 – Bronx Dystance4Dystonia Zoo (NY)
NOVEMBER 1 – TCS New York City Marathon
NOVEMBER 1 – Chicago Basket Bash
For more information and to register for scheduled DMRF events,
visit www.dystonia-foundation.org/events