August 2013 - Essential Tremor

TREMOR
For Members of the International Essential
Tremor Foundation
TALK
Is s u e 1 2
Au g u s t 2 0 1 3
Picture Perfect Partners
IETF Ambassadors
Sharon and Joe
team-up for ET
Meet Maxie Haddox
Head Tremor explained
IETF Awards Research Grants
Essential Tremor of the Voice
vs. Spasmodic Dysphonia
©2007 IETF
letter
Thoughts from the
Executive Director
In this issue of Tremor Talk there are
many people who reveal their passion,
support and commitment to increase
awareness, raise funds for research and
educate about ET. I am tremendously
heartened by their activities and we
should give them a huge thanks for all they do for all of us!
As you read through their stories, think about ways we can all
increase awareness and bring about greater understanding of ET
among healthcare professionals, the public, and those people yet to be
diagnosed. We want to partner with you; to get more people involved at
the local level.
So I ask you for your help and your ideas. How do we get more people
involved as support group leader volunteers, so there is a “go-to” person
in every community? How do we raise more donations to fund research,
awareness, and education? How do we get our families and friends
involved with the cause? How do we attract a larger audience to ensure
our voices are heard? How do we begin a national walk, in order to
generate greater awareness across the U.S.? How do we reach the global
community and extend our influence internationally?
These are big questions. I can’t wait to hear from you and get your
feedback. Please email your ideas to [email protected] or, for
those that don’t have email, please feel free to send a letter! I would love
to hear from you.
Last year, we received donations from 6,945 people. But that is only 1%
of the people we asked. I know we can do better. I know there are many
more people out there waiting, wanting to help but they may just not
know how to get involved. So let’s all put our heads together and work
as a team to make big things happen this year. We still have plenty of
time and I know there is plenty of will!
I hope you and yours have a grand finish to your summer and a
wonderful fall season.
Sincerely,
Catherine Rice
Executive Director, IETF
PS - Watch for the latest ET news on the IETF’s social media:
Facebook, Twitter, TremorTalk.org and TremorGram. Keep up with us as
we share your story with people around the world!
T REMOR TALK A ugus t 2013
President’s Club
The IETF recognizes and thanks the
members of The President’s Club for their
valuable support and leadership. For more
information about The President’s Club,
call IETF Executive Director Catherine
Rice at 888-387-3667.
Membership April 1 - July 1, 2013
Mr. & Mrs.Joseph Atkinson
Mr. & Mrs.David Berryhill Jr
Peter Biasella
Paul Broyhill
Neil Burmeister
Mr. & Mrs.John Cakebread
Lillian Courtheoux
Mary Couzens
Patricia Dupree
Carmen Eanni
Shari & Stan Finsilver
Mr. & Mrs. Richard Frinier
Juanita Froelich
Margaret Gorman
Glen Greeley
BenjaminHampton
Frank Hanna, Jr.
Mr. & Mrs. Martin Holford
Iglewski Family Foundation
Susan Kahn
Jeanne Kaskey
Martin Kern
Jeanette Koppelman
Charles Leachman
Michele Leber
Terry Lee
Stephen Lescher
Kelly Lyons
John Mancino
John Marth
Paul McGrady
Stephanie Mendel
Mike Mullen
Beverly Myers
Rosemary Nothwanger
Robert Oster
Mr. & Mrs. Randal Peterson
Mr. & Mrs Roland Pohlman
Mr. & Mrs. Joseph Robinson
Florence Slater
John Smith, Jr.
Judy Smith
Mr. & Mrs. Lee Smith
Frank Soroka
Mr. & Mrs. Alan Spoon
Mr. & Mrs.Walter Stearns
Allene Stevens
Mr. & Mrs. Gerald Swanson
The Alvin and Fern Davis
Foundation
James Thomas
Nancy Uppal
John Watterson III
Dr. & Mrs. Elmer Werner
Mr. & Mrs. Leo Wilz
Fred Young, Jr.
©2007 IETF
Issue 12
Au gu s t 2 0 1 3
IETF Board of Directors
Kelly E. Lyons, PhD
President
Peter LeWitt, MD
Vice President
Shari Finsilver
Past President
Edward M. Block, PhD
Secretary
Russ Rosen, MSW
Secretary Treasurer
Editorial Board
Rodger Elble, MD, PhD
Joseph Jankovic, MD, PhD
Kelly E. Lyons, PhD
Medical Advisory Board
Mark Hallett, MD, Chair
Roy A. E. Bakay, MD
Julian Benito-Leon, MD, PhD
Kelvin Chou, MD
Arif Dalvi, MD
Rodger Elble, MD, PhD
W. Jeffrey Elias, MD
Leslie J. Findley, TD, MD, FRCP
Cole Giller, MD
Adrian Handforth, MD
Dietrich Haubenberger, MD
Peter Hedera, MD
Arif Dawood Herekar, MD
Joseph Jankovic, MD
Michael M. Johns III, MD
Amos D. Korczyn, MD, MSc
Anthony E. Lang, MD, FRCPC
Peter LeWitt, MD
Elan D. Louis, MD, MSc
Fatta Nahab, MD
William Ondo, MD
Jill L. Ostrem, MD
Michael Pranzatelli, MD, FAAN
Alexander Rajput, MD, FRCPC
Ali H. Rajput, MD, FRCP
Arshia Sadreddin, MD
Sara Salles, DO
Ludy Shih, MD
Holly Shill, MD
Mark Stacy, MD
Claudia Testa, MD, PhD
Jay Van Gerpen, MD
Theresa Zesiewicz, MD, FAAN
Departments
2 My Story
Sharon Ritt, forever the educator
4 Community Lynda Dome - IETF support group leader, and the Allen Family
10 News
NIH BRAIN Initiative, ET Patient Registry
12 Research
IETF awards research grants
13 Technology Liftspoon
18 Support Recognizing four outstanding students
20 Honoraria and Memorials
21 Education Glossary of common terms used by healthcare professionals
26 Support Groups
Features
6 Health
Head tremor and Voice tremor vs. Spasmodic Dysphonia
14 Picture Perfect Partners IETF Ambassadors hard at work
25 Power of One
Meet Maxie Haddox
IETF Ambassadors, Joe and
Sharon, raise awareness
14
Staff
Catherine Rice, MNM
Executive Director
Cover Photo: Joe Bremhorst (left) and Sharon Alexander (right)
Rebecca Dye
Communications
Carol Rucker
Membership Coordinator
Tremor Talk is published three
times a year by the International
Essential Tremor Foundation.
IETF © 2013.
All rights reserved.
Confidentiality Statement: The IETF does not sell or
share any member or non-member personal information,
including physical addresses, email addresses and
phone numbers.
Please send comments, questions, and story ideas
to: IETF Tremor Talk Editor, PO Box 14005, Lenexa,
Kansas 66285-4005 USA or call toll free 888-387-3667
or email [email protected]
This publication is not intended to provide medical advice
or be a substitute for qualified medical care. Appropriate
treatment for your condition should be obtained from
your physician. The content of this publication offers
information to those with essential tremor. The IETF does
not endorse any product advertised in this publication
unless otherwise stated.
e s s e n t i a l t r e m o r.o r g
1
my story
GQ GQ. Where are you? A dream come true.
Sharon Ritt has been telling stories
and singing songs since she was a child
growing up in Chicago, Ill. She inherited
her love of music from her father, Erwin,
who especially enjoyed singing silly songs
to Sharon and her sisters while on road
trips. Her mother also joined in the
silliness but couldn’t carry a tune very
welll. It made for a fun and interesting
childhood, full of laughter and love.
around those who understand and have
compassion.
Along with their love of music and
merriment, Sharon’s parents passed
on something else to their youngest
daughter--something a bit less fun. They
passed on essential tremor.
She has spent her entire career as an
educator, using music and storytelling
to inspire a life-long love of reading in
children.
“My dad liked to draw cartoons,”
explained Sharon, “that’s how I
discovered he had essential tremor.” She
watched his hand shake with each stroke
of the pencil, but it didn’t stop him from
drawing. His tremor had stayed in his
hands. Her mother’s tremor was most
noticeable in her head. They made the
best of things and learned ways to cope:
holding the “bad” hand with the “good”
to try and keep things steady, allowing
extra time to get ready, and refusing to
take themselves too seriously.
As time passed and Sharon and her sisters
grew up, several additional members of
the family were diagnosed—her middle
sister, a few nieces, and yes, Sharon too.
She has a head and hand tremor and it
is beginning to affect her singing voice
as well.
With the long family history of ET,
Sharon is able to offer support and
be supported by those around her.
A lot of comfort comes from being
Sharon Ritt with her Gambel’s
Quail puppet, Gq Gq.
2
T REMOR TALK A ugus t 2013
Sharon embraced her personal challenges
and pursued her love of language and
learning; earning her doctoral degree in
curriculum K-12 and post-doctoral work
in English as a Second Language (ESL)
and Collaborative Literacy Intervention
Project (CLIP).
“I always taught the children in my
classes that we are all different and
differences are good. Some of us have
brown eyes. Some have blue. But we are
all special.” She had taught them not
to judge a book by its cover, a valuable
lesson that she hopes has followed them
throughout their lives.
After retiring from teaching, she
continued on as an educator, happily
volunteering at her local library. It gave
Sharon the opportunity to stay engaged
with children and allowed her own
creative spirit and inner child to be
inspired.
Retirement offered her time to rekindle
her love of music and share it with
others. She released two children’s singa-long CDs. The first “Sing Softly with
Sharon: Lullabies from Around the
World” contains 13 songs and classic
children’s poems all sung and read by
Sharon herself. Her second CD harkens
back to the silly songs from her father.
With “Sing Silly with Sharon”, she pulled
out her memories and guitar and sang
“silly songs” that would have made her
father proud.
Moving to the Sonoran desert region of
Arizona inspired Sharon to look
for a new way to engage children. She
looked around the beautiful desert
landscape for inspiration and wrote
the story GQ GQ. Where are you?
Adventures of a Gambel’s Quail. It is
a beautifully illustrated children’s book
about a very curious Gambel’s quail, a
common sight in Sharon’s own back yard.
Published in June, the book follows the
little quail’s journey through the desert
as he searches for new playmates. It’s a
delightful story that explores the concepts
of friendship, as well as the diversity of life
present in the local plants and animals.
Today, Sharon has the opportunity to
work with children around the United
States and help them learn about the
Gambel’s Quail and the unique Sonoran
desert. “I will also be able to raise
awareness that essential tremor is a real
neurological problem that affects more
than 10 million people in the United
States.”
Like her mother, Sharon’s most obvious
tremor is in her head, and now her
voice. “I think I’m going to work with
a voice coach,” Sharon says, “to see if
that improves things.” Sharon has never
allowed her tremor to interrupt her plans,
and she surely does not intend to start
now. Her warm heart and compassionate
character still draw people to her, children
and grown-ups alike, and she has made
many new friends during her travels.
And now they are ALL aware of essential
tremor.
Although life can be a difficult journey
and there are especially unique challenges
along the way for those affected by
essential tremor, with passion, dedication
and maybe even some silly songs to make
you smile, you can reach your goals.
Sharon’s story is proof that “All things are
possible…even with ET.”
A symbol of
To find more information about Sharon
and her work, visit her website at www.
sharittproductions.com and www.
GambelsQuailBook.com. Sharon and
her publisher (Five Start Publications)
will donate $1 to the IETF for each book
sold, when the IETF is mentioned in
the order.
hope.
By supporting Tulips for Tremor, you sustain critical ET research that will
lead to better medications, treatment, and diagnostic tools. Your research
support underwrites the scientists who ultimately will identify the causes of
essential tremor, develop better treatments, and cure.
Together, we have sponsored $85,000 in research last year…
Together, we have distributed more than $685,000 in research funding
overall…
But there is so much more work to be done…
Please help us fund more research. Every donation matters!
To donate, visit us online at www.EssentialTremor.org/TulipsForTremor,
call us toll-free at 888.387.3667, or complete the donation form at the
back of this magazine and mail in your donation.
e s s e n t i a l t r e m o r.o r g
3
community
Making a Difference
By Lynda Dome
“Act as if what you do makes a
difference. It does.” This quote by
William James, American philosopher
and psychologist, really is a metaphor
for life. The reality is that everything
we do makes a difference in one way or
another.
I was diagnosed with essential tremor
May 5, 2011, and it certainly made a
difference in my life. To begin with,
despite having spent many years
working with doctors (I was employed
in the pharmaceutical industry) I had
never heard of essential tremor (ET). I
was ignorant.
I soon found out that I was not the
only one in the dark about ET. Some
doctors that I came into contact with
thought it inconsequential to live with
ET. One doctor even tried to make a
joke out of it. I watched him jiggle his
body and shake his arms and hands in
his impersonation of essential tremor.
I sat in his office bewildered. Maybe
it was his idea of cheering me up, but
from where I sat, it wasn’t funny. I
asked him about his humor and his
answer was, “Well, it won’t kill you.” I
will leave it to the reader’s imagination
as to what I was thinking.
I decided I would start a support
group.
After a lot of research, I came across
the International Essential Tremor
Foundation’s website. It was as if I
had discovered the pot of gold at the
end of the rainbow! I learned that
the Foundation was hosting a patient
seminar in Foster City, Calif. It was
133 miles round trip for me. I have
to say it was worth every minute and
every mile! I was so impressed with the
presentation and information offered
that, after attending, I contacted the
Foundation about starting a support
group in my hometown of Gilroy. They
were very supportive.
I was in the dark and on my own,
looking for answers. Knowing that I
could not be the only one in the world
affected by this condition, I hoped
there was a support group not far from
home that I might join.
One year exactly to the date of my
diagnosis, May 5, 2012, I held my first
support group meeting. The group was
small at first. But as the year has gone
on, we have grown into a larger family
that shares and supports each other. I
think we have all gained a bit of selfconfidence from the encouragement
and motivation we receive from each
other during our time together once a
month. I know I have.
No. No support groups. “What now?”
I asked myself.
At this point, I’ve lost count of how
many people I have spoken to about
And yes, I now have a different doctor.
4
Well, as with many things in life,
especially those unforeseen events that
happen to all of us, we have a choice:
we can curse the darkness or we can
light a candle. I have never been one
to sit in the dark and I refused to
accept that this was the end of my
quest. There was obviously a need
for information and support in my
community.
T REMOR TALK A ugus t 2013
Lynda Dome
ET. I like to think that each person left
our conversation more knowledgeable
about what essential tremor is and
how it can affect daily life. Including
one president of a local city Chamber
of Commerce who was convinced
that “essential tremor” was all about
earthquakes! (Did I mention I live
in California?) Being a support group
leader has given me an amazing chance
to reach a variety of people, from all
walks of life.
During this year of promoting the
support group and educating the
public, I have found that people really
are inherently good and want to help.
Perhaps they have just never heard of
ET before meeting me. But once the
conversation starts, I have found that
the majority of people really do want
to know more and are very willing to
help when needed. By reaching out,
not only have I (in my own, small
way) created a greater awareness of ET,
but I also came away with a greater
awareness of the kindness of strangers.
Each one of us can make a difference.
Who better to educate and create
awareness than those who have firsthand experience of essential tremor? If
not you, who?
I say, like William James, “Act as if
what you do makes a difference. It
does.”
New Video Educates the Educators
When Vicky Allen had her first meeting with her son’s high
school counselor she was prepared. She went to the meeting
with flyers, handouts and brochures all about essential
tremor. Her son, Julian, was entering his freshman year and
had qualified for advanced, college-level classes—which
meant extensive note taking, and timed and written exams.
As an educator herself, she knew it was important that
certain accommodations be made in order for Julian to be
successful.
The counselor was not sure
what to think. In all her years
at the school she had never seen
a student affected by essential
tremor. She was completely in
the dark on how to help Julian.
They decided to schedule another
meeting, to give the counselor
time to review the educational
materials Vicky had provided.
the fourth or fifth time, I was able to focus in and really
hear what the video was saying—that people with essential
tremor are not weak, they are not scared, they are no
different than anyone else … they just shake.”
The video made such an impression that Julian’s counselor
hand-selected each of his teachers to ensure he was placed
with those who would be sensitive to Julian’s unique needs.
Each of his teachers is required to
watch the video. “It was easier to
explain things after watching the
video,” explained Julian, “I didn’t
have to go into a lot of detail about
it. They know I will need extra time
on writing assignments. I even have
a scribe to help me make sure my
writing is clear.”
Julian now has an educational plan in
place so that he can receive additional
assistance, if needed. Although the
At their second meeting, with
video was produced with the intent
everyone in the room armed with
of educating healthcare professionals
Julian and Vicky Allen
a basic understanding of ET, Vicky
and the general public about the
suggested that the counselor watch a video that the IETF
emotional and psychosocial aspects of ET, Vicky and Julian
had recently developed and published, Essential Tremor is
saw the potential of the video to educate themselves and
More than a Tremor. The video goes beyond what essential
their school.
tremor is to reveal how ET makes people feel. It was just the
eye-opener Vicky had hoped for.
You can find the video, Essential Tremor is More than
a Tremor, on the IETF’s YouTube channel or at www.
“I had to watch it several times before I shared it with the
essentialtremor.org/ETvideo. While on the IETF website,
school,” said Vicky, “because I kept crying. First, I cried for
you may also want to visit the “About ET” page where you
the people in the video, what they had to go through in their can download and print education materials including
lives. Then I cried for my son, knowing that someday he
“Children with Essential Tremor: a Guide for Parents and
may have to go through the same challenges. Then, about
Other Caring Adults.”
Find out if there is a support group operating in your community at www.
essentialtremor.org under the “Support” tab. If there is not a group in your area,
consider becoming a support group leader—light a candle of understanding in
your community. A volunteer position description and support group leader
training guide can be found at www.essentialtremor.org/volunteer.
e s s e n t i a l t r e m o r.o r g
5
health
Head Tremor explained
By Joseph Jankovic, MD
Why do people get head tremor?
There are many reasons why some people shake their heads
besides indicating their agreement or disagreement. Most
patients with head tremor have either essential tremor
(ET), neck (cervical) dystonia, or both. About one third
of all patients with ET in the hands also have tremor of
their head due to the backward and forward movement
of the cervical muscles. When the head tremor is regular
in rhythm, either in a side-to-side (no-no, or negation) or
anterior-posterior (yes-yes, or affirmation) direction, then
the likely cause is ET head tremor, particularly if it occurs
in women and is associated with hand and voice tremor.
Dystonia
Dystonia is a neurological disorder that involves
involuntary, patterned muscle contractions. These cause
twisting and other abnormal movements or postures that
are often initiated or worsened by voluntary action, and
that are relieved by sleep or various “alleviating maneuvers”
(also referred to as sensory tricks or “geste antagoniste”).
When it affects the neck, it is referred to as cervical
dystonia. Cervical dystonia causes an abnormal position
and/or movement of the head due to a combination of
twisting, flexing, and extending movements of the neck.
While some patients with cervical dystonia have a more
sustained (tonic) contraction of the neck muscles, others
have more dynamic (phasic) dystonia associated with
neck/head tremor. When a patient with cervical dystonia
attempts to correct the abnormal posture and bring the
head into primary (or neutral) position, it causes the
oscillatory movement, or tremor, to occur or even get
worse.
It is not known why only some patients with ET have
head/neck tremor. ET-associated head tremor appears to
be more common in women with ET, and in those patients
who have a more aggressive growth of ET, often with a less
favorable prognosis than those without such head tremors.
Head tremor by itself is very rare in patients with ET.
Some clinicians have suggested that head tremor in patients
with ET is almost always due to them also having cervical
dystonia.
Dystonic tremor
Some head tremors, however, are quite irregular in rhythm
and may be associated with subjective “pulling,” “spasm,”
or “pain” in the neck. This type of tremor would suggest
the possibility of dystonic tremor. This typically subsides,
or even completely disappears, when the patient stops
resisting the pulling and allows the head to move into the
position of maximum pull (called the “null point”).
Other causes of head tremor
Head tremor is almost never seen in patients with
Parkinson’s disease unless they have an associated ET.
High amplitude head oscillation, also called titubation,
may be seen in patients with damage to the part of the
Dr. Jankovic is a Professor of Neurology,
Distinguished Chair in Movement Disorders; Director
of the Parkinson’s Disease Center and Movement
Disorders Clinic, Department of Neurology, at Baylor
College of Medicine in Houston, Texas; and member
of the IETF Medical Advisory Board.
6
T REMOR TALK A ugus t 2013
brain involved with coordination of movement, called
the cerebellum. Cerebellar titubation is typically seen in
patients with multiple sclerosis or stroke involving the
cerebellum, brainstem, or both. In addition to the ETrelated head tremor, other generic disorders such as Wilson’s
disease and fragile X–associated tremor/ataxia syndrome
(FXTAS) should also be considered in patients with head
tremor.
Another head oscillatory movement referred to as
bobble-headed syndrome, can be seen in patients with
cysts or tumors in or around the third ventricle. Rarely,
head oscillation can be seen in patients with aortic valve
insufficiency.
Treatment options
Medications conventionally used in the treatment of ET,
such as propranolol, primidone, and topiramate, may be
helpful in patients with ET-related head tremor. In one
study, zonisamide was found to be more effective than
propranolol in the treatment of head tremor.
If medications are not effective, or cause intolerable
side effects, then injection of botulinum toxin into the
affected neck muscles may be the most effective and safest
treatment, particularly if there is associated cervical dystonia.
When used by an experienced clinician, botulinum toxin
treatment is generally well tolerated although some patients
may experience transient neck weakness and swallowing
difficulties.
As a last resort, when medications and botulinum toxin
fail to adequately control the head tremor, deep brain
stimulation targeting the thalamus or adjacent brain
nuclei may be considered. This procedure has been used
successfully in the treatment of ET, Parkinson’s disease,
dystonia, and other movement disorders.
Coping tips for head tremor
Dental and vision appointments
• Ask for adrenaline-free anesthesia.
• Notify your physician of all medications you are taking.
• Request that your doctor stop periodically so you can massage and rest your jaw
and head.
• Ask your dentist whether a bite block will help steady your jaw during long dental
procedures.
• Speak with your dentist or opthamologist about having an additional person help
with your procedure. The extra person can gently hold your head to help control
the tremor.
When applying make-up
• If you have head tremor, place your chin on an upended facial tissue box to help
steady your head.
e s s e n t i a l t r e m o r.o r g
7
health
Essential Tremor of the Voice
vs. Spasmodic Dysphonia
By Michael M. Johns, MD (pictured below)- Director at Emory Voice Center, Emory
University, Atlanta, GA and member of the IETF Medical Advisory Board, and Madeleine
Pethan, MS, CCC-SLP - Speech Pathologist at Emory Voice Center
Introduction
Certain neurologic conditions can
cause people to have problems with
their voice. These voice problems
can often lead to more difficulty
communicating throughout daily
life. It is important that patients
with neurological voice disorders are
evaluated by an otolaryngologist,
or ENT doctor, in addition to their
neurologist to determine the diagnosis
and discuss treatment options. Many
patients with essential tremor also
experience essential tremor of the
voice. Essential tremor of the voice
can often be confused with another
neurologic voice disorder known as
spasmodic dysphonia.
What is Essential Tremor?
Essential tremor is a disorder of the
central nervous system that may result
8
T R EMOR TAL K Augus t 2013
in tremulousness of the head, limbs,
tongue, palate, and/or larynx. The
tremor may occur while a structure
is at rest or in action. For example,
someone’s hand may be tremulous
while resting in their lap, or it may not
become tremulous until they reach for
a cup of coffee on the table. Action
tremor can occur while someone is
purposefully moving the affected
structure, or while postural muscles
are contracting to hold the structure
in the appropriate position. Essential
tremor is characterized by rhythmic,
involuntary movements of muscles
during purposeful movements.
Typically, essential tremor is absent
at rest and maximal during the
maintenance or termination of a
movement. This is similar to essential
tremor of the voice in that the voice
box or larynx will only become
tremulous when activated for voicing
during speech.
What is Essential Tremor of
the Voice?
Essential tremor may present as a
generalized neurological disorder,
affecting many structures of the body,
or as an isolated symptom of the
voice. Patients with essential tremor
of the voice may not necessarily have
generalized tremor in the limbs, trunk,
or other major postural muscles. In
other words, the voice tremor may be
the only primary characteristic. The
larynx, or voice box, is not the only
structure which can cause essential
tremor of the voice. Tremor of the
voice can be caused when any of
the structures in the speech system
is affected. Essential tremor of the
voice may be caused by tremor in the
soft palate, tongue, pharynx, or even
muscles of respiration. Extralaryngeal
tremor (i.e., outside the voice box) has
been reported in up to as many as 93%
of patients with diagnosed essential
tremor of the voice. Similarly, most
patients with essential tremor of the
voice also have tremor affecting their
hands, leg, chin, or trunk.
Essential tremor seems to be associated
with aging, although the reasons are
still inconclusive. Most studies report
average age of onset from the late 40s
to early 50s. The highest prevalence
of essential tremor of the voice is in
the seventh decade of life. Heredity
may affect the likelihood of developing
tremor. The frequency (speed) of
tremor is typically between 3 and 7
times per second. Medications that
often reduce generalized or extremity
tremor, typically are not as effective for
the voice symptoms.
The most prominent voice symptom
and diagnostic indicator for essential
tremor of the voice is a periodic
or rhythmic modulation of either
frequency (i.e., pitch) or intensity
(i.e., loudness) in the voice. This
modulation is most noticeable during
prolongation of a vowel. For this
reason, tremor will be most apparent
when someone is speaking vowel laden
sentences (i.e., you were away all year).
Tremor may become so severe that a
stoppage of voice occurs. This is one of
the reasons that essential tremor of the
voice is often confused with spasmodic
dysphonia. Both diseases, in certain
speech contexts, will cause voice
breaks, or stoppages during speech.
Spasmodic dysphonia and essential
tremor of the voice are also known to
occur at the same time.
What is Spasmodic
Dysphonia?
Spasmodic dysphonia (SD) is classified
within a family of neurological
conditions called focal dystonias.
A focal dystonia is a condition in
which movement is abnormal in an
isolated part of the body. SD causes
abnormal movement of the vocal
folds similar to the way a condition
called blepharospasm causes abnormal
contraction of the eyelid. SD is
different from blepharospasm, however,
in that its effects are only noticed
during meaningful tasks (i.e., speech).
Interestingly, vegetative functions of
the larynx, such as coughing, laughing,
whispering, and even singing, may be
normal.
Two types of SD are well described in
the medical literature: abductor and
adductor type. The two are clinically
distinguishable by the way the voice
sounds.
• In the case of adductor type SD,
adductor muscles—or “closing”
muscles of the vocal folds—can
spasm during connected speech.
The voice sounds strained or
strangled with intermittent
stoppages of the voice. The
severity can range from mild, or
barely noticeable, to so severe that
any attempt at producing a word
brings great effort to the patient.
• Abductor type SD is caused
by spasms of the muscles of
abduction, or “opening,” which
cause sudden and intermittent
escapes of air during speech. These
spasms occur during the transition
from voiceless consonants (i.e., t,
k, s) to vowels (i.e., i, u, a).
People with either type can often
describe certain words which are harder
for them to produce. For example, a
patient with abductor type SD may
report it is very hard for him or her to
shout “nice shot!” at a sporting event
due to the transition from the “sh”
sound to the voiced vowel “o” in the
word “shot.”
The onset of spasmodic dysphonia is
generally believed to be during middle
age, somewhere between the late 40s
and early 50s. Researchers have yet
to establish an exact gender ratio;
however, most clinicians agree that the
majority of cases they see are women.
The onset of spasmodic dysphonia is
typically more gradual, but there are
some reports of rapidly worsening
symptoms.
What treatments are
available?
Medical therapy is generally not
effective for patients with SD, while
medical therapy for ET of the voice
is significantly less effective than for
treatments for extremity tremor. Voice
therapy is also not typically effective
at improving voice problems caused
by SD and has a limited role in
essential tremor. Currently, the main
treatment for both ET of the voice
and SD involves the injection of very
small amounts of botulinum toxin,
otherwise known as botox™ into the
vocal folds or other muscles in the
larynx. Botox injections to treat voice
disorders are typically administered
by otolarynglogists who specialize in
voice disorders. Some neurologists also
treat neurologic voice disorders with
botox. These injections can be done
awake in the office directly through the
skin of the neck, just under the thyroid
notch or “adam’s apple.” The physician
will often use some form of numbing
medicine to numb the skin around the
injection site prior to administering the
botox.
With these injections, muscle
contraction is temporarily blocked by
the nerve endings and the vocal folds
are temporarily weakened. When the
muscles are weakened from botox,
tremor and spasms are reduced. This
leads to a more stable and effortless
voice for many patients, allowing for
more effective communication. In
the case of ET of the voice and SD,
what we find is that the spasms and/
or tremor do not return for a period of
3-5 months.
Summary
SD and essential tremor of the voice
can significantly impair people’s
ability to speak and communicate
effectively. Although the disorders are
distinct, some overlap of symptoms
can occur. Severity of voice changes
can range from barely noticeable, to
patients being unable to effectively
communicate. Treatment is available
for both conditions. If you are
experiencing voice changes relating
to your tremor, or suspect you may
have SD in addition to your tremor,
ask your neurologist about treatment
and potentially a referral to an
otolaryngologist.
e s s e n t i a l tr e m o r.o r g
9
news
Healthcare
Provider
Conferences
The IETF attends numerous
healthcare provider
conferences throughout
the year in order to raise
awareness in the medical
community about essential
tremor, provide educational
materials and patient
resources.
This year, the IETF will attend
the following healthcare
provider conference:
American Association of
Nurse Practitioners Annual Conference
American Academy of Family
Physicians Residents and
Medical Students National
Conference
Association of Family
Practice Physician Assistants
- Fall Conference
American Academy of
Family Physicians Scientific
Assembly
American Osteopathic
Association - Osteopathic
Medical Conference
& Exposition
St. Lukes Neuroscience
Institutes 2013 Symposium
in Kansas City
NIH BRAIN Initiative
Despite advances in science and technology, the cause of many neurological
conditions, including essential tremor, remains unknown. In order to
unlock the mysteries of the brain and its billions of connections, we
need to understand how and why it works the way it does. The National
Institutes of Health (NIH) Brain Research through Advancing Innovative
Neurotechnologies (BRAIN) Initiative has been tasked with figuring that out.
The BRAIN initiative is launching with approximately $100 million in
funding. NIH is working in close collaboration with other government
agencies, including the Defense Advanced Research Projects Agency (DARPA)
and the National Science Foundation (NSF), to bring the brightest minds
in nanoscience, neurology, research and engineering together to work on the
project. Several private foundations and industries have also committed to
participating in this groundbreaking research.
The NIH will spend this summer gathering feedback from the scientific
community, patients affected by neurological conditions, and the general
public in order to develop specific scientific goals for the Initiative. The final
report of these goals is due to be published mid-2014.
Five years ago a project like this would have been considered impossible. The
technology just didn’t exist. Advances in our ability to build microscopic
machinery (nanotechnology) and the ever increasing speed which computers
can process information, serve to inspire today’s modern scientists. These
scientists will be tomorrow’s pioneers as they attempt to solve one of
humanity’s greatest mysteries: to understand exactly how the brain works and
discover what causes neurological disease.
If the brain can be mapped and its pathways understood, the cause of ET and
other neurodegenerative diseases could be found. Understanding the cause will
allow for a more accurate diagnosis process, tailored treatment options and
maybe even preventative measures and a cure.
The IETF is actively participating in BRAIN Initiative meetings and will
continue to follow this project closely. We will keep you posted on how you
can help show your support for the BRAIN Initiative in the IETF’s monthly
electronic newsletter, Tremor Gram.
Don’t get Tremor Gram? Visit www.essentialtremor.org and sign-up today!
10
T REMOR TALK A ugus t 2013
Essential Tremor
Patient Registry
The IETF is pleased to announce the ET disease registry!
This important program will help unite patients, families, clinicians,
researchers, and the global community to improve its understanding of
essential tremor and to advance research activity. Help researchers help you:
Join our patient registry! www.connect.patientcrossroads.org/?org=ietf or
visit the IETF website to learn more: www.essentialtremor.org/EssentialTremor-Registry.
Something for the ladies
The IETF was recently contacted by a
bright and enthusiastic industrial design
student from Carnegie Mellon University
who is requesting your help to design a
very special device for women affected
by ET. Ms. Shirley Wang was inspired
by the way a simple assistive device could
“improve quality of life and independence”
for those with chronic disease and would
like to develop something for use by those
with essential tremor.
Women affected by essential tremor know that simple, everyday tasks often
become a test of will and endurance. Mascara and lipstick can quickly become
projectiles rather than beauty aids.
Ms. Wang is collecting stories about women who are living with ET, to gain a
better understanding of the condition and how it affects those who live with it
every day. She would particularly like to speak with women about their unique
challenges, and would like to measure tremor during the application of different
kinds of makeup. Her goal is to design a tool that will work throughout the
process, giving women back their ability to choose for themselves if they want
to put on makeup or go without.
If you are interested in helping Ms. Wang with this project, you can contact her
at [email protected].
Patient
Education
Join the IETF and local movement
disorders specialists for a free
seminar about the diagnosis
process and treatment options for
essential tremor.
Ann Arbor, MI
August 24, 2013
Provo, UT
September 12, 2013
Greensboro, NC
September 19, 2013
Philadelphia, PA
September 21, 2013
Boise, ID
September 26, 2013
Loma Linda, CA
September 27, 2013
Hoag - Irvine, CA
September 28, 2013
Fargo, ND
October 1, 2013
Palo Alto/Sunnyvale, CA
October 5, 2013
Suffern, NY
October 12, 2013
Des Moines, IA
October 17, 2013
Wilkes-Barre/Scranton, PA
October 19, 2013
Lexington, KY
October 22, 2013
Fresno, CA
November 2, 2013
Los Angeles, CA
November 9, 2013
San Antonio, TX
November 12, 2013
Austin, TX
November 13, 2013
e s s e n t i a l t r e m o r.o r g
11
research
The IETF Funds $85,000 in ET Research
Thanks to our members’ generous donations to research, the IETF staff and Board of Directors are
pleased to announce that three more research grants have been awarded to scientists working in
the field of essential tremor. Today’s research is critical. If the cause of essential tremor can be fully
understood, then better and more effective treatment options can be developed; treatments that
could help the millions of people around the world lead easier, tremor-free lives. Today’s research
may lead to tomorrow’s cure.
Erika Augustine, MD, University of Rochester, Rochester NY was awarded $25,000 for her
proposal entitled, “Clinical characteristics of essential tremor and enhanced physiological tremor in
childhood.” Dr. Augustine will work with children between the ages of 5 and 18, focusing on the
similarities and differences between ET and Enhanced Physiological Tremor (ePT), another common
form of tremor in children.
Carlo Menon, PhD, Simon Fraser University, Burnaby, BC, CANADA was awarded a $24,992
grant for his proposal entitled, “An innovative damping exoskeleton approach to essential tremor
treatment.” This project explores a new assistive device for ET that utilizes state-of-the-art wearable
robotics to suppress tremor symptoms.
Finally, a grant award in the amount of $35,000, for the second year in support of the project
“Essential Tremor Brain Bank at the Arizona Study of Aging and Neurodegenerative Disorders” was
awarded to Holly Shill, MD, Director, Christopher Center for Parkinson Research, Cleo Roberts
Center for Clinical Research, and to Charles H. Adler, MD, Co-PI and Clinical Core Director
of the Arizona Parkinson’s Disease Consortium (APDC) and Professor of Neurology, Mayo Clinic
College of Medicine in Scottsdale, AZ. The researchers expect to find that those with ET have no
greater risk of developing dementia or have cognitive impairment than the general public. They will
also compare the clinical findings of early onset ET and ET beginning after age 65. The team will
continue to examine the brain tissue of those with ET and other neurological disorders after death,
searching for a greater understanding of how ET changes the features of the brain, and hopefully
leading to more effective diagnostic tools.
The IETF has distributed more than $685,000 in
research grants to support 27 promising studies,
in the search to find the cause, better treatments,
and a cure for ET.
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T REMOR TALK A ugus t 2013
Assistive Spoon Now Available
Many of our members have shown great interest
in the tremor cancelling spoon featured in our last
issue of Tremor Talk. We are happy to announce that
manufacturing is underway! In the coming months,
LiftLabs, the maker of the Liftware spoon, will do a full
launch of the spoon to the public.
In the meantime, they’ve put together a quick survey for
those interested in their product. They are looking for
input on other attachments you feel would be the most
useful for your life. As an added incentive, they will select
one survey respondent to receive a free Liftware spoon.
Visit their website to order your very own spoon, sign-up
for their newsletter and to take the survey.
www.liftlabsdesign.com.
Lift Labs has also developed a cell phone app that records
tremor amplitude and allows you to monitor and measure
it at home. The latest version even allows you to save your
records. “Lift Pulse” is available for download through
iTunes and Google Play.
Focused Ultrasound Study - Official Listing
In mid-February of 2013, the Food and Drug
Administration (FDA) granted approval for
InSightec Ltd. to begin pivotal Phase III
testing for treatment of essential tremor using
ExAblate® Transcranial—a focused ultrasound
therapy that uses high-intensity ultrasound
waves to destroy target tissue in the brain.
If proven safe and effective, ExAblate®
Transcranial could become a non-invasive,
outpatient treatment possibility for ET patients
for whom currently available medications do
not work and surgery is not an option.
Phase III is a randomized, double-blind, multicenter clinical study to evaluate the safety
and efficacy of Transcranial ExAblate MR
guided focused ultrasound (MRgFUS) for the
treatment of essential tremor in subjects in
whom medications do not reduce their tremor.
InSightec is the sponsor of the study which has
been approved for conduct by the FDA (IDE#
G120246).
Seventy-two (72) subjects will be recruited
from eight (8) centers for study participation.
As centers are opened for subject recruitment,
they will be listed at www.clinicaltrials.gov/ct2/
show/NCT01827904. Each subject will need
to be followed for up to one (1) year, and all
of these subjects will be followed for up to five
(5) years. If you are interested in participation,
please check the ClinicalTrials.gov listing for
the full list of participating centers.
e s s e n t i a l t r e m o r.o r g
13
feature
t
c
i
P
P
a
r
t
t
c
n
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f
e
r
r
e
s
P
e
r
u
Ask anyone who is affected by essential tremor (ET) and they’ll tell you it doesn’t
feel like a “benign” condition. It’s a condition that requires a complete rethinking of how to live life and how to go about things that used to be routine.
It’s a condition that affects what you can eat. It decides how you can drink. It can
even influences how you communicate.
For some, those “limitations” are anything but. Instead, they’re actually
motivation to live life on their terms and, in some cases, limitations actually
encourage people to act…to do more. They understand the power that one
dedicated person can have and are willing to harness that power. And when two
such people get together, they can do some truly amazing things!
National
The proof: IETF Ambassadors and support group leaders Sharon
Alexander and Joe Bremhorst from the East Bay ET support group
in San Ramon, Calif. These two know all about the power of joining
forces to raise ET awareness among the general public, educate their
local and state officials on how this condition affects so many of their
constituents and offer support and compassion to people who live
and cope with essential tremor every day. With similar goals and a
passion for educating, Sharon and Joe are the perfect team. They are
so perfectly matched they both say that “what one of us doesn’t think
of, the other one does.”
Joe Bremhorst
Joe first noticed his ET when he was in his late teens, but never saw
it as a problem. “Basically, I could ignore it or cope with it through
my twenties and thirties.” In fact, he had no
choice but to cope given that he was a naval
aviator. “My tremor during these years was
mild enough that it didn’t impede my flying
ability,” he says, “but it certainly made the
pre- and post-flight paperwork difficult!”
He made his first neurologist appointment
when he was in his mid-thirties, when the
tremor could no longer be ignored. When the
diagnosis came back he wasn’t at all surprised.
“My mother had been diagnosed with ET
in her later years, and my own tremor was
identical to hers,” he notes. “I knew I must
have the same condition, especially when I
learned it was often hereditary.”
Sharon at th
e local marke
t
Joe sporting his cool shirt!
14
T REMOR TALK A ugus t 2013
As is typical with ET, the condition
worsened as he aged. Joe was in his
mid-50s when the condition became
too bad to simply ignore any longer.
It became impossible to just cope.
“My inability to drink from a glass or
cup, or put food in my mouth, had
become intolerable. Frustration and
embarrassment ruled my emotions
with every cup of coffee and every
meal. I became reluctant to eat out at
restaurants, especially with others.”
“I didn’t control my ET symptoms,”
he says. “They controlled me.”
No amount or combination of
medications seemed to help, so in
August of 2008, Joe underwent Deep
Brain Stimulation (DBS) surgery.
Now, five years after the procedure
he still finds it to be a great help. “I’m
amazed every time I turn it on…I call
it my morning miracle.”
DBS works incredibly well at
controlling his ET symptoms, and Joe’s
work with the support group and as
an IETF ambassador helps him give
back to those still going through ET’s
day-to-day challenges. “I’m privileged
to help with the support group. To
see the camaraderie develop among
the members as they support each
other, sharing their ET experiences, is
incredibly rewarding.”
Sharon Alexander
Sharon’s life with ET began at age 15,
when it “seemed to appear overnight.”
She can even remember the exact
moment she noticed. “I was standing
in line to purchase my favorite drink: a
steaming hot chocolate,” she says. “As
I left the window and began the short
walk to the table, my hands began to
shake and the beverage sloshed all over
“I didn’t
control my
ET symptoms
. . they
controlled me.”
my hand! My best friend made light of
it, but we were both worried.”
Having ET made it difficult for her as
she got older, especially always being
asked if she was cold or nervous. So
for her 30th birthday, she gave herself
a gift: she made an appointment with
a movement disorders neurologist.
When she was diagnosed, she had
already been married for some time
and had two adorable children. In her
spare time, she ran a successful homebased business. But yet she wanted to
do more. And neither a busy life nor
having ET was going to stop her.
She decided to go back to school,
which opened up a whole new world
of possibilities—and quite a few
challenges. Going back to school as an
adult was intimidating enough, but
speaking in front of the class was a
nightmare.
“My worst memory is from an oral
report I had to give in front of the
class,” she notes. “The shaking in my
hands and head made holding and
reading my notes nearly impossible. I
held on and finished, to my great relief.
I felt so proud of my effort.”
When she got back to her desk a fellow
student made a comment about her
shaking, just like everyone with ET
has probably heard at one point or
another. “Why do you let this stuff
throw you so much?! Look—even your
head is shaking!” She didn’t say or do
anything, despite wanting to. Instead,
she cried all the way home.
But (as she so often had done back
then and still does today) she turned
that difficult experience into something
positive, something to learn from. In
this case, the topic of essential tremor
would serve as her thesis. “If only to
educate that one classmate!”
The Partnership
Begins
Joe joined The East Bay support group
in 2004. “I found the group thanks to
the IETF website,” he says. “I thought
it would be worthwhile to see what an
ET support group was all about.”
After attending a few monthly
meetings, Joe was impressed beyond
measure with the support group
leader’s knowledge of ET, and
“Sharon’s extraordinary ability to share
her knowledge in easily understood
bits and pieces and, most of all, I was
impressed with her empathy toward
each and every member of the group.”
Sharon was equally impressed with
Joe. He listened carefully to the guest
speakers and group members and
always commented thoughtfully.
After retiring from the Navy, Joe had
worked in the information technology
continued on page 17
e s s e n t i a l t r e m o r.o r g
15
feature
Special Mention
The IETF recently reached out to a select group of longtime supporters, asking them to consider an additional
contribution to help underwrite some of our most vital
programs: the IETF Scholarship Fund, ET Research
Grants, 2014 Awareness Month activities, free education
seminars or whatever area the foundation feels needs the
most support.
Several generous individuals have come forward and
pledged their addition support.
Although lower donation amounts continue to test
the resolve of many nonprofits, the IETF is confident
that our members value the work being done and will
continue to support the only international foundation
focused strictly on this one condition. We are your voice
for essential tremor.
We will continue to work toward the fulfillment of
our mission and bring education, awareness, research
and support to the millions affected by essential
tremor, healthcare professionals, and the general public
throughout the world.
Ricki Bell
Thomas Hartzog
Bart Pitzer
Florence Slater
Paul Broyhill
Martin Holford
Roland Pohlman
James Thomas
Edward Chuhna
Terry Lee
Byron Scott
Richard Updegraff
Milicent Wewerka
Tulips for Tremor Memorials & Honoriums
The IETF reached out to those individuals who had made contributions on someone else’s behalf, asking them
to consider another gift. Making a financial contribution in honor/memory of a loved one is a wonderful way to
acknowledge their perseverance and resolve in the face of the daily challenges caused by ET and to honor their
memory.
Below you will find our tribute to these wonderful people, who know their support of research will one day find the
cause and a cure for this life-altering condition.
HONOR OF FELLOW ET SUFFERERS
Thomas Hogan
HONOR OF SHARI FINSILVER
Lenore Deutch-Singer
Daniel & Betty Mitz
Suzanne Shawn
David & Yolanda Tisdale
HONOR OF CHARMAINE &
TOM GIRRBACK
Carol & Ron Jerome
HONOR OF HARVEY GLASSER
Jeffrey & Rosalie Meropol
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T REMOR TALK A ugus t 2013
HONOR OF NATALIE KUSILEK
Jerome & Marilyn Maier
Steven & Mary Trebus
HONOR OF MARK G. O’CONNOR
Edward & Janet O’Connor
HONOR OF BEN SHULER
Kimberly Shuler
HONOR OF JEFFREY WALACH
Joe & Lucy Walach
MEMORY OF ANN HILL
Sharon Tredway
MEMORY OF LUCILLE PATTEN
Ruth Rock
MEMORY OF EMILY SCHOLLMEYER
Beverly Schmerse
MEMORY OF RICHARD G. WALTERS
Lynne Maus
MEMORY OF JACK ZAJACZKOWSKI
Emily Zajaczkowski
continued from page 15
field. “Joe’s skills are very different from my own,” Sharon notes, “including his
understanding of the business world and modern technology.”
Sharon knew she would need help running the group. She became the leader in
2003 after the previous one had moved on. At the time, “I also needed to maintain
my counseling practice,” she says, “so I asked IETF
Executive Director Catherine Rice if I could bring Joe on
as my Co-Ambassador and Co-support group leader, to
split some of the duties. The rest is history!”
The two have spent a lot of time working with
other support group leaders in their area. As IETF
Ambassadors, they ensure that IETF support group
leaders are well educated and prepared for their
leadership role. They offer suggestions and
support to new support group leader volunteers,
turning what could be an intimidating process
into a simple, well-planned routine. They attend
most meetings in their area and are always
willing to step-up and fill-in when needed.
Because of their efforts, they have increased the
number of active California support groups to
eight (8).
Picture Perfect
Another Ambassador duty is to spread the word about
the need for more ET research to those who can influence
research funding opportunities, including their local
Congressional Representative, Eric Swalwell (CA-15). They
met with him on two seperate occasions, to discuss what
essential tremor is and how it affects thousands of people in
his state each and every day. They shared their own personal
stories of embarrassment and frustration. They opened his
eyes to the ugly reality of essential tremor and made him
realize that a significant number of his constituents are most
likely affected. It was a very emotional and enlightening
meeting.
Near the end of their visit, they presented Rep. Swalwell
with a Shaking up Awareness about ET bracelet. “As he
slipped it on his wrist right away,” says Joe, “I suggested he
hang a National Essential Tremor Awareness poster in his
D.C. office, and he promised he would!”
One of their best ideas for spreading awareness is setting up
booths at local farmer’s markets. “We only had to fill out
a simple application form, speak briefly with the market’s
manager, and provide a table and chair for the booth.
Otherwise, the only ‘cost’ is our time.” This efficient and
suppor t grou
p lunch
Beautiful day at the
affordable
way to share
information
about ET
Meeting Rep. Eric Swalwell
has had a real
impact. At
every market,
inevitably,
they meet someone new who either has ET themselves or
knows someone who does. It is a perfect place to make
people aware and offer top-quality education and support.
“Whatever challenges you are facing with ET,” Sharon says,
“it’s a likely bet that someone else has not only faced it, but
overcome it.”
Sharon and Joe have both traveled different roads to get to
this point in their lives. They followed different career paths
and even their personalities are very different. But together
they make a formidable team, whose passion for educating
shows in everything they do.
e s s e n t i a l t r e m or.o r g
17
support
IE T F Scholarship Awards
The International Essential Tremor Foundation (IETF) is pleased to award the following exceptional
students with $500 scholarships: Matt Schafer of Divide, CO; Shriya Soora of Chapel Hill, NC; Jill
Riggs of Hamilton, OH; and Jared Beeson of Oconee, IL.
Matt
Matt Schafer
Matt says that his life has been a bit like “a hurdler in track and field, filled with many health-related
obstacles.” The future freshman at John Brown University in Arkansas adds that while “ET has been very
challenging … we all have obstacles in life. With a little hard work and ingenuity, they can be overcome.”
Overcome he has, and in some very impressive ways: he was a member of the National Honor Society,
treasurer of the student government for two years, member of the senior class student council, and donates
his time at a church that feeds the poor.
A natural leader, Matt says that he doesn’t let essential tremor stop him from doing any of the things he
enjoys. “My ET might occasionally present challenges,” he notes, “but essential tremor will not knock me
down.”
Shriya
Shriya Soora
As a graduate student at the University of North Carolina - Chapel Hill, Shriya understands the myriad
challenges that college can present to someone with ET, especially with hands-on learning. “The laboratory
environment can often be a demoralizing setting,” says Shriya. But that didn’t stop her from following her
dreams with a sunny attitude. “Instead of giving up, I learned to adapt, cope and, above all, have patience.”
Currently pursuing a Masters in Public Health, Shriya has used her ET to motivate her to help others: she’s
served as a teacher for impoverished children in New Delhi, India, and as a peer-educator for a substance
abuse program. She adds that “essential tremor has pushed me farther than I ever thought possible.”
Jill
Jill Riggs
When she was seven Jill was chosen to participate in a brain development study through her local hospital.
During the neurological testing for the study, it was discovered that Jill had essential tremor. “While others
tied shoelaces, poured liquids, and buttoned clothes with ease,” says Jill, “I struggled.” But Jill didn’t give up.
“It taught me humility and showed me that it’s not our differences that make us who we are, but how we
handle them. Hopefully, ET will help me be a better person.”
Serving as president of the local 4-H, participating in student senate and organizing multiple community
service projects, Jill has shown that her obstacles have indeed helped her become an outstanding student and
citizen.
Jill has found some relief with medication and looks forward to studying English at Ohio University. “I
dream of becoming a writer,” she adds, “and my tremor has taught me to never let anything keep me from
pursuing my passion.”
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T REMOR TALK A ugus t 2013
Jared Beeson
Jared
“Everyone faces obstacles during their lifetime,” says Jared, adding that “it is not the challenges we face that
define us, but how we choose to react to them.” If that’s how people are defined, then Jared can be defined
as an inspiration. During high school in Oconee, IL, he was a standout football star on both offense and
defense; ran varsity track; was a D.A.R.E. (Drug Abuse Resistance Education) role model for younger
students; a member of the National Honor Society; and served as a personal aide to a fellow high school
student with cerebral palsy during the summer months.
Studying to become a family physician at St. Louis University will present many more obstacles for Jared,
but he’s the type of person who is looking forward to each and every one of them. “I know my goal will take
a lot of hard work, determination, and perseverance, but I feel prepared to take on the challenge.”
Each Fall and Spring semester, the IETF will award up to four (4) $500 scholarships to qualified posthigh school students of all ages, to lessen the financial burden of obtaining a higher education. The
scholarship can be used for supplies, books, or tuition at licensed, accredited institutions of higher
education (including trade schools) and are paid directly to the educational institution.
If you are interested in applying for an IETF Scholarship, please review our scholarship
materials online at www.essentialtremor.org/scholarships for requirements, criteria and required
documentation.
GET INVOLVED!
The IETF needs additional generous donors to sustain the IETF scholarship program. With your
support, we can help qualified and deserving applicants finance some of their educational expenses.
The IETF will establish specific scholarship awards in the donor’s name, if desired, to be awarded
annually, i.e. the Jane Smith Award. These scholarship awards are a powerful way to honor or
memorialize someone you love.
For further information about setting up a scholarship or donating to the IETF scholarship fund,
please contact Catherine Rice at 888-387-3667 or via email at [email protected].
Where has my button been?
The centerpiece of the IETF logo is the Archimedes Spiral, which - when drawn by
a patient - is used as a diagnostic tool for ET. Help raise awareness of ET in your
community by wearing an Archimedes Spiral button!
Take pictures of where you (and your button) have been, then share them
on the IETF’s Facebook page or email them to us. Let’s see how many
different and exotic places we can increase awareness with these stylish
buttons. Call us or go online to learn how to get your very own
buttons and how to get involved.
e s s e n t i a l t r e m o r.o r g
19
education
Glossary of Common ET Terms
Because knowledge is essential to making informed choices, we’ve developed this glossary to help ET patients,
their loved ones, and caregivers better understand the terms healthcare providers may use in treating ET. You can
find the complete glossary and many other helpful documents at www.essentialtremor.org/About-ET.
Action tremor
Anxiety
Acupuncture
Archimedes Spiral
Alcohol
The patient may be asked to draw the spiral before and after
receiving a drug in order for the physician to evaluate the effect
of the drug on the patient’s tremor and at what dosages the
drug is most effective.
An action tremor is one that occurs during action as when
performing a certain task such as reaching for an object, or
bringing the object towards you. For example, a tremor that
occurs when reaching for a cup or bringing a cup to
the mouth.
Acupuncture is an ancient Chinese therapy in which
needles are inserted into certain points on the body in an
attempt to control disease or pain. Acupuncture is considered
as an alternative (non-traditional) form of treatment for
many disorders.
Consumption of alcohol may reduce tremor in many ET
patients. Response to alcohol may be helpful to the physician
in the diagnosis of ET vs. other causes of tremor. The effect
of alcohol generally lasts only a few hours and excessive
alcohol can actually worsen tremor. Alcohol should be used in
moderation and responsibly to avoid injury or addiction.
Amplitude
Amplitude is the amount or range of movement caused by the
tremor of a body part. Amplitude is most often measured in
centimeters or inches.
Anxiety is a fundamental physiologic response to stress.
Symptoms may include feeling of worry, rapid heart rate,
shortness of breath, brief period of tingling sensations, as well
as tremor. Virtually all types of tremor are aggravated by stress
and anxiety.
This is a test commonly used to evaluate tremor. The patient is
asked to draw a spiral without their hand touching a surface,
through which the physician can determine the severity of
the tremor. This simple, inexpensive test is also valuable in
determining the effects of a drug on tremor.
Spiral drawn by a patient receiving
no drug.
Spiral drawn by a patient receiving
a trial dose of a drug.
Amplitude
Resting
Position
Spiral drawn by a patient receiving
a more effective dose of the same
drug.
20
T RE M OR TALK Au gus t 2013
Ataxia
Ataxia is a neurological symptom that has many causes. It
usually results in poor coordination, clumsiness, and abnormal
walking in such a way that the feet are wide apart. Walking
may resemble that of someone who is intoxicated. ET patients
may experience mild ataxia.
Central nervous system (CNS)
The CNS is made up of the brain and spinal cord. It controls
voluntary acts, consciousness, and mental activities.
Central nervous system
Brain
Benzodiazepines
Benzodiazepines are a class of drug used to treat several
neurological disorders. Their mechanism of action includes
calming or depression of the central nervous system. They
are used to treat certain types of seizures, muscle spasms, and
anxiety. They can also be used as sedatives. They have been
shown to help tremor to some degree. They can be habitforming and tolerance to the medication can occur with
chronic use. Clonazepam (Klonopin®), diazepam (Valium®),
lorazepam (Ativan®), and alprazolam (Xanax®) are examples of
benzodiazepines.
Spinal cord
Peripheral nervous system
Peripheral nerve
Beta-blockers
Also known as Beta-adrenergic blockers, beta-blockers are
a class of drugs that block beta receptors in the brain. Betablockers decrease the effect of the sympathetic part of the
autonomic nervous system and are commonly used to reduce
high blood pressure and treat migraine. They can also suppress
tremors in many patients with ET. There are several types of
beta receptors. It is thought that the development of drugs that
could act specifically on individual beta receptors would lead to
more effective tremor control. Propranolol (Inderal®) is a betablocking drug.
Cerebellum
The cerebellum is an area of the brain and is involved in many
functions including coordination of movements, balance, and
speech. Damage to the cerebellum can result in clumsiness and
in action tremor. Studies have shown that the cerebellum may
be involved in ET.
Basal Ganglia
Biofeedback
Biofeedback is a form of relaxation therapy in which body
functions such as heart beat or breathing rate are consciously
controlled through feedback from an outside device such as a
heart monitor.
Botulinum toxin
Botulinum toxin is a toxin produced by bacteria often
associated with food poisoning (botulism). It is injected in
very small doses into the muscles to reduce their hyperactivity.
It is used to treat some types of dystonia and tremor. It is
marketed for this purpose as BOTOX® (botulinum toxin type
A), Dysport® (botulinum toxin type A), Xeomin® (botulinum
toxin type A) and MYOBLOC® (botulinum toxin type B). It
can be used to reduce/treat head tremor that is not responsive to
ET medications or DBS.
Cerebellum
Thalamus
Deep Brain Stimulation (DBS)
DBS is an adaptable therapy that uses mild electric pulses to
stimulate the brain and block the signals that cause tremor.
Therapy includes implanting an insulated wire lead in the
thalamus (structure targeted for ET). The lead is connected
continued on page 22
e s s e n t i a l t r e m o r.o r g
21
education
Glossary of Common ET Terms
to a pulse generator or battery (like a cardiac pacemaker)
implanted beneath the skin in the chest. Physicians and trained
health care providers activate and adjust the system. The
patient can also turn the stimulation on and off with a patient
programming unit or a hand held magnet. All parts of the
system are under the skin.
Frequency
Because tremor is a rhythmical movement, it completes a
cycle in the same way as does a clock pendulum. It swings in
a direction and returns to its starting point, then swings out
again and returns to its starting point, etc. The frequency of
a tremor is the number of cycles it completes in a second.
Frequency is measured in hertz. ET usually has a frequency of
4 to 10 hertz.
continued from page 21
Head tremor
Most people who have head tremor actually have neck tremor
that causes their heads to shake. With a yes-yes head tremor,
the head nods up and down as if the person were saying yes.
With a no-no head tremor, the head shakes from side to side
as if the person were saying no. Some patients have head
movement in all directions. Head tremor is seen in ET and
dystonia.
Neuron
A neuron is a nerve cell made up of three parts. Dendrites with
receptor sites receive information from other cells, a cell body
integrates the information from all the receptor sites, and an
axon releases neurotransmitters to pass on information.
Gamma knife thalamotomy
Gamma knife thalamotomy is a form of thalamotomy in
which the area of the brain involved in tremor production is
destroyed by creating a lesion by radiation beams. It can be
very effective in reducing or diminishing tremor. The results
may take several weeks to be seen and it is an irreversible
procedure. It is used in patients who are very old or not good
surgical candidates for DBS implantation.
Gabapentin (Neurontin®)
Direction
of neural
impulse
Dendrites
Soma
(cell body)
Gabapentin is an anti-seizure medication that can be used to
treat ET.
axon
Gene
Genes are the basis of heredity. Through a chemical called
DNA, genes direct the information that determines all
our characteristics such as how we look, color of our eyes,
our height, formation of inner organs, etc., as well as the
development of genetic diseases.
Orthostatic tremor
X Chromosome
Gene
The development of a tremor involving the upper legs,
buttocks, and lower trunk after standing for a period of time is
characteristic of orthostatic tremor. The tremor subsides when
the individual sits, leans against something, or walks.
Positron emission tomography (PET) scan
This is an advanced scan that can detect and produce images of
brain chemical activity.
DNA
22
T RE M OR TALK Au gus t 2013
Postural tremor
Thalamotomy
Sporadic occurrence
Vocal tremor (voice tremor)
This is a tremor that occurs while the person voluntarily
maintains a position against gravity. It is present when the
individual holds his or her hands out-stretched in front. This
tremor is often present in ET.
Sporadic occurrence refers to the development of a disease in
an individual with no family history of the disease. In other
words, the disease appears to occur by chance. ET can be
either sporadic or inherited.
Thalamotomy is a type of brain surgery that involves making a
lesion (controlled destruction of brain tissue) the size of a pea
in the thalamus to alleviate tremor. Thalamotomy has been
shown to effectively reduce tremor in ET.
Vocal tremor causes a characteristic quivering of the voice,
most evident when attempting to sustain a long note. Voice
tremor is often seen in ET.
A special thank you goes to Dr. Kelly Lyons, Director of Research for the Parkinson’s Disease and
Movement Disorder Center at University of Kansas Medical Center in Kansas City, Kansas and IETF
Board President, and Dr. Arshia Sadreddin, Movement Disorder Neurologist at Barrow Neurological
Institute, St. Joseph’s Hospital and Medical Center in Phoenix, Arizona and IETF Medical Advisory
Board Member, for taking the time to write and review the information presented in this glossary.
NIH seeks research participants
National Institutes of Health (NIH) researchers are interested in learning more about the effects of alcohol on hand tremor. It
has been widely noted that alcohol can have a positive effect on tremor, but as of yet, we do not fully understand why. This study
will be looking for the answer to that question by investigating changes in the brains of those affected by ET.
You may be eligible for this study if:
• You have a diagnosis of ET in both hands,
• You are 21 years old or older,
• You are able to stay off your tremor medication during the study.
You may not be eligible for this study if:
• You are pregnant,
• You have other neurological problems in addition to essential tremor.
This is an outpatient study that involves 1-2 visits, each of which may last up to five (5) hours. All study related tests and
procedures are provided at no cost. This study is open to all those living with essential tremor both in the United States and
overseas. Transportation and hotel costs, as well as food stipend, will be provided. International participants will need to provide
their own airfare to the center. The study will be conducted at the NIH Clinical Center in Bethesda, MD.
Please contact Gayle McCrossin MSN, RN, CNRN at [email protected] or 301.443.3471 (TTY: 1.866.411.1010) for
further information and to see if you qualify. Se habala espanol. Study #10-N-0199.
e s s e n t i a l t r e m o r.o r g
23
donations
Honoraria and Memorials
Thank you to everyone that established memorials and contributed funds to honor loved ones on behalf of the
IETF from April 1, 2013 to July 1, 2013. If your donation was processed after July 1, 2013, it will be listed in the
next issue of Tremor Talk. (Honoraria or Memorials listed in UPPERCASE, donors listed in italics.)
H onorariums
JIM BANKS
Don Piliero
M
IRMA COX
Larry & Nancy Nielson
Paula Osborn
Rogers Lions Club
Kim Wilczyk
MONA BUTTERS
ELIZABETH ELLSWORTH
William & Margie Miller & Paul & Margaret Sticka
Lila & Nathan Butters
Greg Brand
Chris & Betty Martin
MARY LACEY
NATHAN BUTTERS
Cliff & Ruth Phelps
J Carter & Linda Courtney
Charlotte Cohen
Ann Lacey Evans
BETTY FRANK
Eileen Lacey
DR. MARK JONES
Gerard Frank
Edward & Marie McCusker
Northeastern Michigan ET Support Group
Peter & Brigitte Rios Velez
MARY GRABOSKI
TOM RINSKY
Byron Scott
IRENE LANDFELDT
Cincinnati-Dayton ET Support Group
Gary & Diana Anderson
HELEN GRAUBARD
Ron & Betty Hasche
JAMIE STOLPER
Trevor & Ann Bavar
Welma Regan
Charlie & Faye Ruopp
Joyce Eisenberg
Donna Rogers
Marty & Rebecca Eisenberg
Mitzi & Warren Eisenberg
DAVID LLOYD
emorials
Eve Finley
Cannon Point Homeowners Association
ROBERT LEE BECHTEL
Florence Graubard
Charles Damsel
Robert & Marsha Greenstein
JACOB MOHR
Gerald & Phyllis LeBoff
Dawn Bartlett
EDWARD BENTZ
Bert & Mimi Lesser
Teresa Conboy
Robin Wolgast
Marjorie Lieberman & Sam Seager
Meryl LeBoff and Mark Williams
HAROLD ROSENOW
ALBERTA WARREN CASHWELL
Al & Frances Rothman
Jerome & Judith Miller Chase Paterno
Harvey & Judith Rubin
Susan Rubin
HELEN SABOURIN
DIANNE CODDINGTON
Alice Schwartz
Joanne & Judson Morse
John & Mary Switzer
Irwin Sheldon
Eleanor Silverstein
MILDRED SCHMIDT
NED COHN
Arthur & Mary Ann Siskind
Mary Schmidt
Izhak Baitch
Susan and Leonard Feinstein Foundation
Shock Baitch
TJ Bittel and Stacy Klein
GEORGE SCHWEGEL
Patrick & Alyssa Burt
Sharon Weiner
Allen Ellis
Dominick DeAngelo
Wendy McKenna & Suzanne Kesler
Andrew Glenn
Charles & Marilyn Wolf
IRMA SCHWINGER DEANGELE
Paul Jordan
Fred Schwinger
Kenneth Worden and Mark Green
MARY VIRGINIA HANDLEY
Rich & Elise Langsam
Charles Damsel
MARGARET ANN SHEEHAN
Margaret Liccardi
Charles Damsel
Gene Mazzarelli
BELLA KHITROV
Mrs. Julian McKenna
Ann Blythe
VIRGINIA SILLS
Jay Perlstein & Bette Gottfried
Charles Damsel
Marjorie Weinberg
LOIS KREIDER
Carol Baker
RICHARD WALTERS
MARALYN CONE
Bruce Gorecki
Joyce Ahrens
Frances Marx
Donna Gustafton
John & Joette Kroeger
2420 T RE M OR
TALK Au gus t 2013
Maxie has Moxie
As a small child, Maxie Haddox wondered why her
grandfather shook so much. A few years later, she noticed
her mother shaking just like her grandfather. When she was
around 15, she noticed her own hands starting to tremble,
especially when she was tired or under stress.
Everyone asked why she was so nervous. She didn’t feel
nervous, but yet she shook. She didn’t have an answer for
them. It wasn’t until adulthood that the answers finally came
to light.
When she was finally diagnosed with essential tremor,
her doctor offered little in the way of education. Maxie
quickly realized she had to educate herself. She wanted to
understand exactly what was happening to her and her
family.
She started her search for knowledge on the internet, with
its limitless access to all kinds of information. She found the
IETF website pretty quickly and immersed herself in the
articles, research reviews, webcasts and webinars. The site
became her continuous teacher and Maxie was a ravenous
student. “It was so helpful to me. I knew this was something
I needed to support. So, I made a donation and became a
member of the IETF,” Maxie said.
Once she felt as though she understood her condition, she
decided that it was time for others to understand it as well.
First she decided to concentrate her efforts with her own
family doctor who was unfamiliar with the condition. She
requested ET patient education brochures and flyers from
the IETF, so that she could drop them off at his office to
help educate him and his other essential tremor patients.
With her first experience promoting education and
awareness under her belt, Maxie then expanded her efforts
to include other specialists that she saw regularly; her
podiatrist, dentist, dermatologist, etc. Later, she started
including everyday contacts such as her hair dresser,
nail specialist, waiters and waitresses. Finally, she started
providing education materials to her local libraries, schools,
and senior centers. “These are the people who could make
a real difference in the lives of those with ET,” explains
Maxie, “they are the ones that have an opportunity to make
someone affected feel comfortable, simply by understanding
what ET is and what accommodations might be helpful.”
She sees her daily experiences as education opportunities. A
recent stay in her local hospital revealed an opportunity for
her to educate once again. During the admission process
and subsequent stay, some of the staff seemed unaware of
the limitations caused by ET. Food and water were just left
at the bedside, for instance, without any thought of whether
or not she would be able to feed herself. However, instead
of complaining, Maxie saw it as a perfect opportunity to
educate the nursing staff and write a short letter to the
hospital administrator. Maxie simply made a few suggestions
on how to better care for patients with essential tremor
and other movement disorders. As a result, the hospital is
planning on making some adjustments based on Maxie’s
kindly worded letter.
Maxie proves that it doesn’t take a lot to educate people
about essential tremor, to make them aware. “Anyone can do
this!” she exclaimed. “It’s definitely not hard. As a matter of
fact, it makes life a lot easier and less stressful when people
know why I shake.”
When asked why she is so passionate about education, her
answer was simple. “If we all do our part in educating the
public about essential tremor, our children won’t have to
answer why they shake. Everyone will already know.”
Don and Maxie Haddox hosted an information
booth at Wright Patterson AFB for military retiree
appreciation day.
e s s e n t i a l t r e m o r.o r g
25
support
Learn More About ET Support Groups
An ET support group
is an informal, selfmanaged, self-help
group. It is not a therapy
group or 12-step program.
It is run by and for people
that have ET or that have
a family member or friend
who has ET.
An ET support group is
a place to be you. The
group is a place where
people feel welcome and
accepted, can talk openly
and can exchange ideas
about the challenges
of living with ET. It is
a place where privacy
and confidentiality are
respected.
An ET support
group is a source
of information and
practical suggestions
about ET and about the
IETF. It is not a substitute
for medical treatment or
for personal or health
counseling.
An ET support group is
a circle of friends where
people with ET and their
supporters can listen,
laugh and empathize
together.
An ET support group
is as unique as its
members. The interests
and capabilities of
support group members
vary greatly and change
over time. Rather than a
standard approach, each
group offers the specific
support its members need
at any given time.
26
UNITED STATES
Elkmont, AL
Elise Hickman
256.230.2594
[email protected]
Harvest, AL
Carla Holder
256.837.1713
[email protected]
Little Rock, AR
Eric Twombly
501.773.5528
[email protected]
Sun City West, AZ
Paul Leitch
623.975.9638
[email protected]
Sun Lakes, AZ
Jane Limbaugh
480.883.1766
[email protected]
Tucson, AZ
Robert Harris
520.578.7354
[email protected]
Belmont, CA
Deanne Bohne
650.591.9362
[email protected]
Gilroy, CA
Lynda Dome
408.847.8649
[email protected]
Novato, CA
Satoko Miller
415.883.8494
[email protected]
Roseville, CA
Paula Lavin
916.771.4866
[email protected]
San Ramon/East Bay, CA
Sharon Alexander
925.487.5706
[email protected]
San Diego, CA
Carolina Conway
714.381.7558
[email protected]
Merriam, KS
Sandy Curtis
913.706.7802
[email protected]
Tiburon, CA
Richard Wodehouse
415.944.0278
[email protected]
Wichita, KS
Rita Sevart
316.796.0769
[email protected]
Van Nuys, CA
Jackie Eddens
916.761.5473
[email protected]
Louisville, KY
Erika Ganong
502.291.3676
eagano01louisville.edu
Lady Lake, FL
Ken Taylor
352.787.3866
[email protected]
East Falmouth, MA
Robert Reddy
508.457.9025
[email protected]
Port Orange, FL
Lloyd Dunham
386.761.6509
[email protected]
Springfield, MA
Karen Villanueva
413.589.1127
[email protected]
Savannah, GA
Phil and Nancy Bowden
912.352.7921
[email protected]
Silver Spring, MD
Dan Miller
301.384.1139
[email protected]
Chicago, IL
Alison Rezabek
708.352.4784
[email protected]
Solomons, MD
Amber Burris
252.241.4567
[email protected]
Granite City, IL
Priscilla Johann
618.451.1977
[email protected]
Scarborough, ME
Ted Ellis
207.510.1402
ted_metremorsupgroup@
yahoo.com
Northbrook, IL
Gladys Keats
847.559.1779
[email protected]
Clarkston, MI
Tom and Sabrina Pilarski
248.891.3881
[email protected]
Munster, IN
Donn Davidson
219.972.0972
donn@
computerprofessionals.com
Midland, MI
Carol Jerome
989.799.5413
[email protected]
Indianapolis, IN
Jacqueline Hudson
317.823.3803
[email protected]
Golden Valley, MN
Joan Hlas
Struther’s Parkinson’s Center
952.993.6650
[email protected]
Continued on page 29
T R EMOR TALK Au gus t 2013
INTERNATIONAL ESSENTIAL TREMOR FOUNDATION MEMBERSHIP DONATION FORM
We invite you to join the IETF, a nonprofit organization that represents people with essential tremor (ET). Members receive
publications and resources from the IETF about ET studies, research, news, and stories about people with ET. Your tax-deductible
donation helps fund much-needed research and education initiatives. Thank you for joining the IETF in our mission to help the
estimated 10 million people in the U.S., like you, that have ET.
STEP 1
CHOOSE YOUR MEMBERSHIP DONATION
Membership Levels - $30 Basic, $50 Bronze, $100 Silver, $250 Gold, $500 Platinum,
and $1,000 President’s Club.
Members receive: Essential tremor medical alert card, Patient Handbook, Tremor Talk
magazine (3x per year), monthly electronic newsletter TremorGram, medications flyer, and
coping tips flyer.
STEP 2
Annual Membership
Donation Amount
OR
Recurring Monthly
Donation Amount
($5/minimum) $_________
$_________
TULIPS FOR TREMOR
Tulips for Tremor: Add a special, additional donation in support of the Tulips for Tremor
Fundraiser for essential tremor research.
$_________
Your chance to support
ET research
STEP 3 PAYMENT INFORMATION
Name: ________________________________ Phone number: (____) ________
Mailing Address: ___________________________________________________
TOTAL DONATION $_________
City: _________________________________ State: ________ Zip: _________
Email: ___________________________________________________
By providing your email address you acknowledge your wish to receive electronic
communications from the IETF. You may unsubscribe at any time.
My check is enclosed (payable to IETF)
Charge my:
M/C
VISA
Discover
Am Express
All international payments, including Canadian, must be paid by credit card or US money order.
Cardholder’s Name: ________________________________________________
Acct #: _______________________________________ Expiration: ____/_____
Billing Address: ____________________________________________________
City: _________________________________ State: ________ Zip: _________
Over please
e s s e n t i a l t r e m o r.o r g
27
STEP 4
MEMBER INFORMATION
The member information in this section is gathered for statistical data reporting to aid research.
Please note: IETF does not share or sell member information to any third party.
Please check one:
Male
Female At what age did you first notice signs of ET?
I have not been diagnosed.
Do you have ET? Yes
No
D.O.B:
At what age were you diagnosed with ET?
How many family members have ET?
Please check one:
Asian
Black/African American
Hispanic/Latino
White/Caucasian
Pacific Islander Native American
Other (Please explain)
STEP 5
MAIL MEMBERSHIP FORM TO:
IETF | PO Box 14005 | Lenexa, KS | 66285-4005
Your membership is a tax-deductible donation.
MEMBERSHIP = DONATION = SUPPORT FOR THE IETF MISSION
OUR MISSION - The IETF funds essential tremor research to find a
treatment and cure for people with ET, increases awareness, and
provides educational materials and tools for healthcare providers,
the public, and those affected by ET.
Thank you for supporting the IETF.
Serving those affected by essential tremor since 1988.
Your voice for essential tremor.
TT August 2013
International Essential Tremor Foundation
PO Box 14005 | Lenexa, Kansas 66285-4005 | USA | 888.387.3667 (toll free) | 913.341.3880 (local)
EssentialTremor.org | Facebook.com/InternationalEssentialTremorFoundation | Twitter.com/essentialtremor
Support Groups (cont.)
UNITED STATES (cont.)
Lee’s Summit, MO
Anita Otis
816.373.4303
[email protected]
Lexington, MO
Sharon Oshita
702.524.0875
[email protected]
Asheville, NC
Rita Lyda
828.298.4085
[email protected]
Carolina Beach, NC
Carol Anderson
910.458.9127
[email protected]
Sylva, NC
Ted Kubit
828.631.5543
[email protected]
Voorhees, NJ
Joan DiGiovanni
609.922.3325
[email protected]
Albuquerque, NM
Ken Whiton
505.255.4419
[email protected]
Carson City, NV
Dena McCormick
775.230.6004
[email protected]
Adams, NY
Nina Hershey
315.232.2373
[email protected]
Burt, NY
Donna Zito
716.778.6469
[email protected]
Commack, NY
Harvey Glasser
631.499.0590
[email protected]
New York, NY
Joan Miravite, NP
NP Beth Israel Medical 212.844.6134
[email protected]
New York, NY
Margaret Mackey
212.673.8207
[email protected]
Katy, TX
Betty Schwarz
281.347.2194
[email protected]
Oswego, NY
Kathleen Ruggio
315.342.3925
[email protected]
Tyler, TX
Elizabeth Guthrie
East Texas Medical Center
Neurological Institute
903.316.9700
[email protected]
Syracuse, NY
Jessica Ryan
315.382.8554
jessica@theengineeringchick.
com
Dayton/Cincinnati, OH
Arlene Rosen
513.791.5546
[email protected]
Eugene, OR
Nick Richmond
541.689.3323
[email protected]
Bechtelsville, PA
Kirsten Yarnall
610.473.2212
[email protected]
Hazleton, PA
Karla Foose
570.495.9714
[email protected]
Marcus Hook, PA
Alana Shafer
484.477.8258
[email protected]
New Holland, PA
Judy Shaffer
717.355.6259
[email protected]
Pittsburgh, PA
Darla Yesko
412.351.4564
[email protected]
Bristol, RI
Rick Anderson
401.396.5002
[email protected]
Dallas, TX
Rachelle DuBose
Caruthers
214.345.4224
rachellecaruthers@
texashealth.org
Clearfield, UT
Trudy Hutchinson
801.391.3430
[email protected]
Charlottesville, VA
John Watterson
434.973.2510
[email protected]
Richmond, VA
Diana Campbell
804.556.2345
[email protected]
Roanoke, VA
Mike Hopkins
540.721.2087
[email protected]
Seattle, WA
Allie Fee
206.784.6978
[email protected]
Middleton, WI
Kathy Muirhead
608.824.9130
[email protected]
Milwaukee, WI
Vicki Conte
Parkinson’s and Movement
Disorders Program
[email protected]
INTERNATIONAL
Ghana, Africa
Bernhard Darko
233.234.122.253
[email protected]
Dorval, Quebec, Canada
Bryan Comeau
514/831-9961
[email protected]
Toronto, Ontario,
Canada
Cecilia Ronderos
416-922-8464
[email protected]
Windsor, Ontario,
Canada
Heather Nash
[email protected]
Bonn, North-Rhine/
Westphalia, Germany
Albert Brancato
Lotharstrasse
95 Selbsthilfegruppe
Essentieller Tremor
011-49-228-327153
[email protected]
Auckland, New Zealand
Yvonne Standen
New Zealand ET Support
Group, Inc.
0508-873-667
[email protected]
Essex, United Kingdom
Long-Term Conditions Center
44-01708-386399
National Tremor Foundation
[email protected]
For information on starting a
support group in your area, visit
www.essentialtremor.org/volunteer
or call toll-free 888.387.3667.
e s s e n t i a l t r e m o r.o r g
29
International Essential Tremor Foundation
P.O. Box 14005 Lenexa, KS 66285-4005 U.S.A.
888.387.3667 toll-free 913.341.3880 local
913.341.1296 fax
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