“Can Do” Kate - Essential Tremor

Transcription

tremor talk
Fall/winter 2008
The MEMBER Magazine of The
|International Essential Tremor Foundation
“Can Do”
Kate
Kate Larsen
Pursuing her dreams
despite ET
12
8McCain and Obama duking it out
over health care reform:
The “punch” is in the details
14Between a rock and a hard place:
The cost of name-brand medication versus
generic drug effectiveness
Hope through research,
awareness and support
Essential Tremor
clinical study
You may qualify to join a clinical study with
an investigational deep brain stimulation
(DBS) device. This study involves a surgical
procedure.
You may qualify to join a clinical study with an investigational
deep brain stimulation (DBS) device. This study involves a
surgical procedure.
You may be able to join if you
r "SFPWFSZFBSTPME
r )BWFIBE&TTFOUJBM5SFNPS
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r )BWFEJTBCMJOHUSFNPSPG
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BEFRVBUFMZDPOUSPMMFECZ
NFEJDBUJPO
Study sponsor:
To learn more, visit www.PowerOverET.com or contact 1-888-859-0008
Caution: Investigational device, limited by United States law to investigational use.
tremor talk
FALL WINTER 2008
IETF Board of Directors
Kelly E. Lyons, Ph.D.
President
Peter LeWitt, M.D.
Vice President
Shari Finsilver
Past President
L. William Teweles
Past President
Edward M. Block, Ph.D.
Secretary
Russ Rosen, M.S.W.
Secretary Treasurer
State Senator Terry Link
Celeste Null, M.S.
W. Douglas Ward, Ph.D.
Editorial Board
Rodger Elble, M.D., Ph.D.
Joseph Jankovic, M.D., Ph.D.
Kelly E. Lyons, Ph.D.
Medical Advisory Board
Mark Hallett, M.D., Chair
Roy A. E. Bakay, M.D.
Rodger Elble, M.D.
Leslie J. Findley, T.D., M.D., FRCP
Peter Hedera, M.D.
Arif Herekar, M.D.
Joseph Jankovic, M.D.
Amos D. Korczyn, M.D., M.Sc.
Anthony E. Lang, M.D., FRCP(C)
Peter LeWitt, M.D.
Elan D. Louis, M.D.
William Ondo, M.D.
A. H. Rajput, M.D., B.D., FRCP(C)
Sara S. Salles, D.O.
Kapil D. Sethi, M.D., FRCP
Mark Stacy, M.D.
Claudia M. Testa, M.D., Ph.D.
Ray L. Watts, M.D.
Staff
Catherine Rice, M.N.M.
Executive Director
Debbie Lovelace
Publications Editor
Public Relations Specialist
Dee Ragan
Marketing Specialist
Events and Support Groups
Carol Rucker
Membership Coordinator
Tremor Talk is published twice a year
by the International Essential Tremor
Foundation.
2 letter from the executive director
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MEDICATIONS for ET
misdiagnosis and its ramifications
MEDICAL alert
ROBBIE GOULD joins fight against ET
online SEARCH/SHOP can benefit IETF
coping with ET
health care reform
tulips for tremor
question and answer
sonograms inadequate in diagnosing ET
KATE LARSEN life despite ET
generic verses brand name medication
history of a name
ietf merchandise for sale
Honoraria and memorials
community ambassadors
presidents Club
IN MEMORY Sid and Maxine Kort
support groups
membership donations
anniversary essays
6
IETF goes to
Washington
Please send comments,
questions, and story ideas to:
IETF Tremor Talk Editor
PO Box 14005
Lenexa, Kansas
66285-4005 USA
or call toll free at 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.
Confidentiality
Statement
The IETF does not
sell or share any
member or nonmember personal
information,
including physical
addresses, email
addresses and
phone numbers.
letter from the executive director
There’s still more to do
This year America’s attention has turned to the mortgage
and energy crises as well as the soaring cost of health care.
Many of us are finding it hard to make ends meet, and are
worried about the future. Those of us at the IETF, just like
you, are cutting costs in our households. And as you might
expect, nonprofit organizations are not exempt from this
economic downturn as they try to make ends meet while
continuing to provide services.
The poor economy makes it extraordinarily difficult for
nonprofits, because their livelihoods and existences depend
upon the American people. We know that your resources are
Catherine Rice
limited, and to ask for more feels ungrateful. But, if we don’t
Executive Director
ask, how are we to provide a greater number of services to a
greater number of people? How can we fund more research or increase awareness?
The fact is we need your support now more than ever.
We must continue moving forward to find better treatments and a cure, or we will
lose momentum and lose ground. If I don’t ask, I can’t continue to help the more
than five-thousand people who call each year for assistance. If I don’t ask, I can’t help
support those who need it the most, and who have no where else to turn.
I accept the fact that some of you may say “no,” but, please, if you must say “no”
let it be a temporary and not a permanent answer. In return, if you need us, we want
to help. Let us know if you are having a difficult time financially, and we will honor
your commitment to the IETF with an honorary membership for the coming year. We
need each other to complete the mission. We need your voice to keep moving forward. We want you to stay aware, because — as you will see in this issue of Tremor
Talk — many good things are happening that will improve support systems, increase
research funding and provide greater awareness about ET.
At the same time, I extend a “thank you” to all of you who have participated in and
supported IETF activities, programs and research despite your hardships. Your generosity has been overwhelming. Thank you for supporting the 10-million Americans
who have ET.
I am confident we will all ride out this storm together. I am confident we will find
suitable answers to our energy crisis, because we have some of the brightest minds in
the world working to find solutions. I am confident there will be equitable health care
for all, because we are a caring, and not a selfish people. I am confident that Americans will understand changes needed to secure our future require that wise choices
be made now. I am confident we will choose well in deciding who will lead America
through these troubled times. I am confident, because, when tested, Americans do
the right thing.
Our hearts are with you as you seek to overcome frustration and, in some
cases, despair.
Sincerely,
Catherine Rice
Our sincerest apologies…
…to Sharon Alexander of Pleasanton, CA. In the last issue
of Tremor Talk we listed persons who have made membership contributions during each year of the past seven
years, and we inadvertently left off her name. Sharon, we
appreciate your support, not only as a member, but also
as a support group leader!
Tremor talk Fall/winter 2008
Considerations
when
taking any
medication:
• Always follow your
physician’s directions
when taking any
medication.
• All medications
have side effects.
Become aware of
the side effects of
the medications you
take. Ask questions of
your physician and/or
pharmacist.
• If you experience
any unexpected or
negative side effects
from taking any
medication call your
physician. If it is an
emergency, call 911.
• Inform your
pharmacist of all
medications you are
taking, including
over-the-counter
medications. Although
not always possible,
use one pharmacy
for all of your
prescriptions.
• Never take anyone
else’s medication,
and do not share
your medication with
anyone.
• Although one
medication might
work well for one
person, it might not
work for another.
Finding the correct
medication, or
combination of
medications, might
be a trial-and-error
process that will take
time and patience.
Medications
commonly
prescribed
for
ET
Reviewed by Rodger Elble, M.D., Ph.D.
There is no cure for essential tremor (ET), and there is
no medication specifically designed to treat ET. However,
for approximately 60 percent of patients, there are a number of medications that might be of benefit — singularly
or in combination — in the treatment of its symptoms.
The most common medications:
Propranolol (Inderal®) – Propranolol is the only medication approved by the Food and Drug Administration (FDA)
for the treatment of limb and head ET, and is available in
immediate and long-acting formulations. Propranolol is a
beta-blocker, which is a drug used primarily for treating
high blood pressure. Side effects of propranolol are usually
mild and are more frequent at higher doses. The main side
effects are decreased pulse rate and blood pressure. Patients with heart failure, diabetes, or asthma should talk to
their doctors before taking propranolol. Other beta-blockers such as atenolol, metoprolol, and nadolol can also be
beneficial for treating ET.
Primidone (Mysoline®) – Primidone, an anti-seizure
medicine, can reduce tremor with a daily dosage. Although it might have initial side effects, such as nausea,
poor balance, dizziness, fatigue, drowsiness, and flu-like
symptoms, there are few long-term problems. To reduce
the possibility side effects, start with a small dose at bedtime (12.5 mg or one-quarter of one tablet) and gradually
increase the dose until tremor is suppressed.
Clonazepam (Klonopin®), diazepam (Valium®), lorazepam (Ativan®), and alprazolam (Xanax®) – These
anti-anxiety medications may be useful in patients who
do not respond to other medications or who have associated anxiety. Side effects include sleepiness, dizziness, depression, fatigue, loss of coordination, memory loss, and
confusion. These drugs are usually less effective than propranolol and primidone, and they can be addictive. There
is also risk of withdrawal symptoms if the drugs are suddenly stopped.
Emerging Treatments:
Gabapentin (Neurontin®) – Gabapentin is a generally
well tolerated anticonvulsant that has a modest benefit in
ET. It is tried by patients whose tremor is unmanageable
by other medications. Side effects include fatigue, slurred
speech, drowsiness, impaired balance, and nausea especially when beginning drug therapy. Galapentin requires
multiple doses a day.
Topiramate (Topamax®) – Topiramate is an anticonvulsant that has been shown to be effective in controlling
tremor in some patients. Side effects include numbness or
tingling, memory loss, and weight loss.
Miscellaneous Agents:
Mirtazapine (Remeron®) – Mirtazapine is an antidepressant. Due to its lack of effectiveness for the majority of
patients and its significant side effects, mirtazapine is not
recommended for the routine treatment of ET. Adverse effects include confusion, dry mouth, weight gain, frequent
urination, balance and gait difficulty, nausea, and blurred
vision.
Botulinum Toxin Injections (BOTOX®, Myobloc®)
Botulinum toxin injections have been useful in the treatment of ET in some patients with head and voice tremor
and sometimes hand tremor. The toxin must be placed
into target muscles by a trained specialist and repeat injections will be needed approximately every three months.
Transient weakness of the injected muscle is a potential
side effect. Botulinum toxin injections can be expensive so
verify insurance payment before treatment.
Alcohol – Adults with ET often notice that responsibly
drinking alcohol - having one or two drinks before social
events for example - reduces tremor for one to two hours.
One must consider, though, that a more severe rebound
tremor can occur after the effects of alcohol have worn
out, especially with excessive alcohol use.
Reprinted from the IETF flyer “Medications Commonly Prescribed for ET.”
This information is not intended as medical advice, but is provided as information that you can discuss with your physician.
published by the international essential tremor foundation diagnosing movement disorders
Misdiagnosis
and its ramifications
By Oscar S. Gershanik, MD
t
Frequently, individuals with ET are incorrectly misdiagnosed as having Parkinson’s disease,
imposing the emotional, economical and medical burden that this mistake implies.
The following is a true story that will serve to illustrate the consequences of misdiagnosis.
A worried woman took her mother to the family
brought to our clinic. We saw a severely deteriorated
doctor for an expert opinion. The patient was a 72
patient. According to the family, she appeared to have
year-old woman who sought medical advice because
aged considerably in the last year. She could barely
of mild hand tremor that was most evident when she
walk; her face lacked expression. She stood with a
played cards or when she was holding a spoon or
stooped posture, and resting tremor was evident in
a cup of coffee. The doctor, without performing a
both her arms. Her speech was almost inaudible and
thorough physical examination, diagnosed early Parincomprehensible.
®
kinson’s disease and started her on Artane .
A few questions brought us back to the initial comMonths later she complained that the tremor was
plaint of postural and action hand tremor. The rest
no better and she was becoming confused and her
of her problems started after taking the prescribed
memory was suffering. The
medications.
doctor said she was becoming
A diagnosis of ET was made
senile and needed medication.
and all medications were
In addition to the Artane®, she
slowly withdrawn. After a few
®
was given Flunarizine , a calmonths she was again a bright,
cium-channel blocker.
intelligent woman with mild
Months later the patient rehand tremor.
ported tremor that was presDoctors need to remember
ent at all times, even with
that ET presents with postural
hands at rest, in addition to
or action tremor — alone. PD
slowness and rigidity. A visit
is more complex, usually preto the doctor resulted in the
senting with unilateral resting
addition of a second antipartremor in combination with
®
kinson medication; Sinemet .
rigidity, slowness of movement and/or postural changUnfortunately, this not only
failed to improve the tremor,
es. Moreover, ET is ten times
slowness and rigidity, but the
more frequently observed in
patient also experienced halindividuals over age 65 than is
lucinations and delusions.
Parkinson’s disease.
This time a desperate
The symptoms this patient
daughter and her tremulous,
developed in addition to the
rigid, slow, confused and aloriginal tremor were secondmost psychotic mother went
ary to medications that she
again to the doctor. He exdid not need. Artane® may
Oscar S. Gershanik, M.D. is a practicing
neurologist in Argentina.
plained to the daughter that
cause memory problems and
Reprinted from the IETF’s “Anniversary Edition of Essay: 1999 to 2008.”
her mother’s condition was
confusion in older individu®
due to progression of both Parkinson’s disease and a
als. Flunarizine may cause or worsen depression and
dementing illness, and to the side effects of medicaparkinsonism. Sinemet® may cause psychiatric symptions she dearly needed. On top of all the drugs she
toms in predisposed individuals. The main side-effect
®
®
®
was taking (Artane , Sinemet and Flunarizine ), he
of Haldol® is parkinsonism.
then prescribed Haldol®, a potent anti-psychotic.
This is one example of how damaging a misdiagHaldol® somewhat improved the psychiatric sympnosis can be, and it highlights the importance of seetoms, but worsened the parkinsonian symptoms.
ing a neurologist who specializes in the diagnosis and
Deciding to seek a second opinion, the patient was
treatment of movement disorders.
“…ET is
ten times more
frequently
observed
in individuals
over age 65
than is
Parkinson’s
disease.”
published by the international essential tremor foundation AWARENESS advocacy
IETF members,
staff raise
awareness in
Washington, DC
IETF members from three
states and staff members took
the ET story to Washington, DC,
in early June, talking with members of Congress about ET, its
life-altering ramifications, and
the creation of a National ET
Awareness Month.
IETF representatives met with congressional members
and their staffs in the offices of Sen. Sam Brownback (KS),
Rep. Samuel Graves (MO), Rep. Christopher Van Hollen, Jr.
(MD), Sen. Jim Warner (VA), Sen. James Webb (VA), Rep.
Frank Wolf (VA), Rep. Eric Cantor (VA), Rep. Tom Davis III
(VA), and Rep. Bob Goodlatte (VA). Information packets
about ET were left in the offices of Sen. Pat Roberts (KS),
Sen. Robert Byrd (WV), Sen. Claire McCaskill (MO), and
Rep. Rob Whittman (VA).
In addition to providing general information about ET,
IETF members shared their personal stories of living with
ET. They also asked congressional representatives to support a proclamation calling for a National ET Awareness
Month in both houses of Congress. Support for the request was unanimous.
National ET Awareness Month would not only bring ET
awareness to a national level, it would highlight barriers to
better ET treatment. It would also increase public knowledge of the condition and the need for research to find the
cause(s) of ET.
Here’s what congressional representatives and their staff
members learned.
• ET is often associated with mistaken beliefs such as
that it is part of the normal aging process and that it
has psychological causes.
• While ET does not kill, it causes significant quality-oflife issues. Americans are willing to spend vast sums of
money and resources to extend life, but we often view
quality of life as solely an individual responsibility.
• Even when ET is recognized as a physiological condition, it is often misdiagnosed as Parkinson’s disease,
dystonia, or any of a number of other conditions.
• Misdiagnosed patients are often treated with medications that do not help and that often make their
ET worse.
• Many people who have ET are never correctly
diagnosed and, as a result, receive no treatment.
• According to the National Institute of Neurological
Disorders and Stroke, ET is eight to 10 times more
common than Parkinson’s disease.
• No medications are designed specifically to treat ET. Existing drug treatments have been the result of chance
discoveries — a few drugs designed to treat other conditions also have an effect on ET. However, these drugs
help no more than 60 percent of people with ET.
• The only treatment specifically for ET is deep-brain
stimulation (DBS) surgery. Since Food and Drug Administration approval of the surgery, most insurance
companies cover the $45,000 to $60,000 cost when
the surgery is deemed necessary.
• ET has long been considered a benign condition with
no other associated symptoms. Research has found,
however, that hearing loss, balance and gait issues,
and anxiety and depression often accompany ET.
The June visit to Washington, DC, is not the end of efforts to achieve a National ET Awareness Month. IETF staff
are continuing to work with the congressional members
visited during the Washington, DC trip to draft a proclamation that can be submitted with bills to both the House
and to the Senate. A National ET Awareness Month could
become a reality in the very near future!
Debbie Lovelace
Chicago Bears placekicker Robbie Gould
joins fight against ET
The IETF is proud to announce a partnership with Chicago Bears placekicker Robbie Gould, and his Golden Touch
Foundation, to raise funds for research to find better treatments and a cure for ET, and to support the more than 10
million Americans affected with this disorder.
Gould understands the daily activity and financial challenges people with ET face as he maintains a close relationship with a family friend who is bravely facing the disorder.
“I’ve witnessed the impact essential tremor can have
on not only the daily lives of sufferers but also the strain
it puts on families and households that are providing support to their loved ones,” said Gould. “I consider myself
very fortunate and blessed to be in the position to be able
to raise national awareness for essential tremor and hope
that the efforts of this partnership with the IETF can make
Medical alert for DBS patients
The United States Food and Drug Administration (FDA)
made a preliminary announcement in July 2008 saying that computed tomography (CT) scans might cause
some electronic medical devices to malfunction, including
neurostimulators that are implanted during Deep Brain
Stimulation (DBS) surgery to control the symptoms of ET.
The FDA reports that some neurostimulators have delivered unintentional electrical shocks after CT scans. There
have been no deaths.
Malfunctions, says the FDA, are the result of direct exposure of medical devices to the high x-ray dose generated
by some CT equipment. Malfunctions are not associated
with exposure to electric and magnetic fields generated
during magnetic resonance imaging (MRI).
Additional medical equipment, according to the FDA,
experiencing malfunctions after CT scans include pacemakers, defibrillators and drug infusion pumps.
Inform CT scan operators that you have a neurostimulator, or other affected medical device, before beginning
a CT procedure. The FDA has made recommendations to
medical personnel on how to adjust for the presence and
placement of these devices.
According to the FDA, you should contact your healthcare provider immediately if you suspect your neurostimulator, or other affected medical device, is not functioning
properly after a CT scan.
The FDA is continuing to investigate this issue, and the
IETF will keep you updated as information becomes available. If you have any questions, do not hesitate to talk to
your healthcare provider.
a difference in improving the
lives of those who suffer from
the disorder.”
The IETF was proud to be a
signature sponsor of the first
annual “Kick Off for a Cause”
to benefit those with ET. The
fundraising gala, hosted by
Gould, was held at the Hard
Rock Hotel Chicago on FriRobbie Gould
day October 10, 2008.
Throughout the year, Gould will host events and activities to raise awareness for the more than 10-million individuals suffering from ET, and the millions more who are
undiagnosed.
&
Online purchases or search benefit ET!
With the economy in a slump nonprofits are having trouble meeting their fundraising goals. In a show
of support more than 700 Internet retailers including Amazon, eBay, Target, Apple, and Expedia have
joined forces with GoodShop.com and are donating
a percentage of the cost of your purchases to your
favorite charity at no additional cost to you.
More than 63,000 nonprofits are now on-board.
Go to www.essentialtremor.org, click on the GoodShop & GoodSearch logo on the left side of the home
page, select the IETF as your charity of choice, and
then click on the logo of your favorite store and shop
as usual.
Also, Yahoo has teamed up with GoodShop’s sister-site, GoodSearch.com, to donate a penny to your
cause every time you search the web through GoodSearch.com. This is free to you because the money
comes from advertisers. Again, go to www.essentialtremor.org and click on the GoodShop and GoodSearch logo to access this benefit.
GoodSearch and GoodShop have been featured
in the NY Times, the Wall Street Journal, CNN and
Oprah Magazine.
Please tell your family, friends and co-workers
about GoodShop and GoodSearch today!
published by the international essential tremor foundation Coping
with ET
Essential tremor (ET) is a
life-altering condition that
makes everyday living a test of
ingenuity, perseverance and
self-esteem. Daily activities
such as writing a letter, dressing and eating cause frustration that can lead to stress
with temporarily worsening
tremor. In order to assist people who have ET in continuing
to live full, meaningful lives,
the IETF offers the following
coping tips.
General suggestions
t
Use heavier
mugs or
soup mugs for
drinking
• Learn to use your tremor-free hand for as many
activities as possible, including writing.
• Hold your chin toward
your chest, or turn your
head to the side to control head tremor.
•Use your tremor-free
hand to steady your
tremoring hand, and
whenever possible use
two hands.
•Use travel mugs with lids.
When on the go, use lids
for purchased beverages
whenever possible.
• Carry straws with you.
You can find sturdy,
thick-plastic straws in
many houseware sections of stores if thin
plastic straws are too
flimsy.
• Avoid caffeine, mahuang, ephedra and
other over-the-counter
medications and herbs
containing ingredients
that increase your heart
rate and can increase
tremor temporarily.
• Keep your elbows close
to your body when performing tasks to help
control hand tremor.
• Carry a small tape recorder with you to record notes.
• Carry and use larger handled, weighted pens and
eating utensils.
•Use a signature stamp when possible for signing
your name.
• Carry a strip of
self-adhesive
address labels
to give to people who ask for
your name and
Use a
address.
debit card
• Fill out deposit
instead of
having to
and withdrawal slips at home bewrite checks
fore going to the bank.
• Consider using on-line banking to
pay your monthly bills.
• Consider using credit or debit cards instead of
writing checks.
Eating, drinking, food preparation
• Use heavier glasses and mugs instead of light-weight
cups. Soup mugs are also a good choice for drinking.
• When holding a mug or small glass, place your
thumb along the rim and place your fingers across
the bottom.
• Fill cups, mugs and glasses half-full.
Dental visits
• Novacaine increases tremor in some people. Ask your
dentist if there is an alternative.
• Notify your dentist of all the medications you are taking.
(The following are for people with head tremor.)
• Request that your dentist stop periodically so you
can massage and rest your jaw and your head.
• Ask your dentist whether a bite block will help steady
your jaw during dental procedures.
• Talk with your dentist about having a person in addition to the dental assistant help with your procedure.
The third person can gently hold your head to help
control tremor.
Eating in restaurants
• Request your meat be cut in the kitchen before being
served.
• Consider ordering finger foods to eliminate the need
for utensils.
• Ask that your soup be served in a mug.
• Request that drinking glass or mug be filled only
half-full.
• Ask for a straw.
• Avoid buffets or have someone assist you when going through the line.
• Consider using dishes that have vertical sides or buy
rubber bumper guards from a medical supply store
to place around the edges of your plates so you can
more easily scoop your food.
• Try using covered ice-cube trays.
• Get a rubberized placemat that sticks to the table so
plates do not slide.
• Put your microwave onto a countertop or a low table
so you can easily place food inside and remove it.
Personal care
•Use an electric razor when shaving.
• Have a manicurist care for your nails.
• Have a cosmetologist wax or tweeze your eyebrows.
• Try using disposable floss holders when flossing
your teeth.
• Hire a seamstress to do your mending, or find a volunteer to sew on buttons, thread needles and pin
fabrics. Use Velcro® fasteners rather than buttons.
•Use an electric toothbrush or a child’s toothbrush for
better control when brushing teeth.
Applying makeup and putting on jewelry
• Apply mascara by resting your elbows on the countertop. Put the wand in one hand and use the other
hand to keep the wand steady.
• Apply eyebrow pencil, mascara, eye liner or lipstick
by resting your finger or the palm of your hand on
your face to steady your hand.
• Put on earrings by resting your elbows on a table.
If you have head tremor, place your chin on an upended facial tissue box to steady your head.
Using technology
•Use a telephone with large buttons. Avoid phones
with speed dial and redial buttons too close to the
number buttons.
•Use a speakerphone, a headset or Bluetooth® device
when using phones.
• Keep a small tape recorder
next to the phone so you
can record information
when talking on the phone.
• Ask your security alarm representative to give you a remote to turn your system on
and off.
•Use voice-activated dialing if available on your cell
phone.
Use a headset
• Set your computer to omit douor Bluetooth®
ble strikes on the keyboard and
device when
double clicks on the mouse. Go
using phones
to your computer’s Control Panel
and click on Accessibility Options
to set these options.
• Go to a store selling a number of different types of
computer mice, try them out, and choose the one
that works best for you.
• Check into speech-recognition software. Some computers are pre-loaded with this.
• When choosing a digital camera, pick one with image stabilization technology.
This information is not intended to replace your
current medical therapy. Discuss your difficulties with your
physician or other health care professional in order to
help develop a well-rounded treatment plan that is right
for you.
Reprinted from the IETF’s flyer “Coping with Essential Tremor.”
published by the international essential tremor foundation McCain and Obama
duking it out over health care reform:
The “punch” is in the details.
According to the United States (US) Census Bureau, more than 47 million Americans had no
health insurance at any one time during 2007. However, a study conducted by Families USA, a
nonprofit promoting affordable health care for all Americans, found that 89.6 million Americans,
or about 34.7 percent of the population, lacked health insurance at some point during 20062007, and more than half lacked insurance for more than six months. If the numbers for the
underinsured are considered, 40 percent of Americans are economically and/or medically at risk
if struck by illness or accident.
ment. Rarely in recent history has there been such a clear
cut choice between candidates and platforms, especially
concerning health care. However, one thing that both
parties agree on is that the health care system is broken.
The real challenge of fixing this broken system, as reflected in the Republican and Democratic health care platforms, is that the two problems presented above — the
uninsured/underinsured and the rising cost of health care
— are in opposition. To cut costs, people will remain uninsured and to insure everyone will require additional costs.
t
Additionally alarming is the fact that the cost of health
care in the US is rising at a faster rate than any other time in
our history, according to the National Coalition on Health
Care. In 2007, total health care expenditures increased 6.9
percent, almost two times the rate of inflation. Employer
health care premiums increased by 6.1 percent during that
time with the average annual premium for a family of four
being $12,100 and at $4,400 for a single person.
The US Presidential Election is imminent. To say that
this is a pivotal election for this country is an understate10
John McCain’s health care reform plan, according to
Robert Laszewski, president of Health Policy and Strategy
Associates, LLC (HPSA), a policy and marketplace-consulting firm, makes cutting health care costs the primary
health care goal while Barack Obama’s plan “dramatically
and quickly” increases the number of people who have
health insurance.
Highlights of McCain’s plan that differ from Obama’s
and that are aimed at controlling health care costs, according to Laszewski, include:
• Providing incentives for employers to transfer
responsibility for choosing and purchasing health
insurance to individuals.
• Taxing the individual on the amount an employer
pays for their health insurance.
• Providing tax credits — $2,500 for individuals
and $5,000 for families — to be used to purchase
health insurance.
• Creating a national health insurance policy forum
to eliminate the need for compliance with each
state’s insurance regulations.
• Allowing federal health insurers to sell policies nationwide to compete with state programs.
• Creating state-based guaranteed access plans for
those who are uninsurable in the private market
due to preexisting conditions, and for those not
able to afford private insurance.
• Turning Medicare into a “coordinated care” system
with bundled treatment plans in a similar fashion as
Kaiser Permanente.
• Capping malpractice damages and eliminating
lawsuits against doctors who followed established
clinical guidelines and patient safety protocols.
Laszewski and others see many issues with McCain’s plan.
• McCain’s plan does not solve the uninsured and
underinsured problem, and it places the responsibility for health care costs onto the individual.
• McCain’s health care plan will be paid for through
taxation of the additional income created by adding the cost of medical insurance an employer pays
to an employee’s income. This is a short-term solution, because…
• Although employers can still offer employees a
health care insurance plan, many will choose not
to, and this dries up McCain’s source of health care
funding.
• In addition, there is an inherent belief that employers who choose not to provide health insurance will
increase their employees’ income to match previous health insurance payments made by the company. There is no guarantee that this will happen.
• Proposed tax credits do not come anywhere close
to paying the actual cost of insurance - $12,400 for
a family and $4,400 for an individual.
• McCain’s plan places the burden of insuring the
high risk, and low-income onto the shoulders of
the states.
• Bundled care saves money, but physicians do not
like it.
• There are no proven cost containment strategies.
Highlights of Obama’s plan, according to Laszewski and
others, that differ from McCain’s and are aimed at insuring
as many people as possible as quickly as possible include:
• Mandating guaranteed insurability through a mix
of public and private health insurance plans, all
with a minimum comprehensive benefits package
equal to that currently required for federal workers.
• Creating a National Insurance Exchange to sell
insurance plans directly to those who do have an
employer plan or public coverage.
• Establishing a public program similar to Medicare
for those under the age of 65 who do not have access to an employer health insurance plan or who
do not qualify for Medicaid or SCHIP.
• Requiring employers to either provide health insurance or contribute toward the cost of a public plan.
Small businesses will be exempt or provided with
assistance.
• Mandating that all children be insured through
either a private or public plan.
• Expanding eligibility for Medicaid and SCHIP.
• Embracing state health reform plans and initiatives.
• Reforming medical malpractice by preventing insurers from overcharging physicians for malpractice
insurance.
• Allowing Medicare to negotiate drug prices.
• Calling for catastrophic reinsurance coverage that
would have the federal government absorb a large
portion of the highest cost claims so they are not
reabsorbed into the cost of insurance for everyone.
Issues with Obama’s plan include:
• Obama’s plan shifts the cost of insurance to the
government with an estimated annual federal bill of
$50 to $100 billion. Some funding sources include
defense spending cuts and eliminating tax breaks
for those making $250,000 or more a year.
• If the tax employers can pay in lieu of offering an
employee medical insurance plan is too low, employers might opt to pay the tax.
• The plan does not have effective cost containment
features.
• Although the plan offers universal access, there will
be people who will remain uninsured.
Both candidates share good ideas, according to Laszewski, such as making insurance portable, physician incentives for outcomes, chronic disease management
programs, legalizing drug reimportation and medical outcomes transparency, but these have little influence on cost
or coverage.
According to Laszewski, both plans will work; how well
will be determined by the details. The choice “comes
down to the security afforded by employer-provided defined benefit group plans (Obama) versus the potential for
cost savings (McCain).”
Debbie Lovelace
published by the international essential tremor foundation 11
TULIPS for tremor
SM
Tulips for Tremor: Logo’s
simplicity
illustrates
hope
The Tulips for
Tremor annual fundraiser has been a
success since it was
introduced in 2007,
and that success is
in no small part the
result of its simple,
colorful logo.
It is hard to believe that a child
Robert Faulkner, his wife Aki and their
drew the Tulips for
children Kai and Kei.
Tremor logo.
Kai Faulkner was only four years old when he used his
father Robert’s computer to draw flowers. That was five
years ago.
“Kai is really a very good artist,” Robert explains. “He
drew these flowers on the computer with only a little help
from me. Pretty cool, huh? Kid art is really great! It’s a lot
like some Picasso pieces only better because it’s real.”
Kai’s simple drawing caught the eye of IETF Executive
Director Catherine Rice when she was presented with artwork samples. The simple graphic design of tulips immediately caught her attention and the attention of the entire
IETF staff.
“Tulips are a sign of hope and inspiration,” Catherine
says, “and they signify a re-birth every time they bloom in
the spring. Tulips are a perfect symbol for the IETF — new
hope that the search to find a cause and cure for ET will be
successful. Kai’s design illustrates, with clean colorful lines
and shading, that heartfelt hope.”
When Kai and Robert learned the design was the
logo for an annual fundraising campaign and would be
displayed in publications and on merchandise, they
were pleased.
“It’s very exciting that Kai’s flowers are being printed
and used, well, everywhere!” says Robert. “He’s really
looking forward to seeing his art on the cap.”
Asked how it feels to have his work on merchandise for
an international non-profit foundation, nine-year-old Kai
exclaims, “It’s awesome!”
Robert, who owns Faulkner Advertising in Santa Barbara, CA, recalls an experience years ago when his office
was in Los Angeles. “I used to see a man standing every
day in front of the building where we had our graphic design office. He would shake and shake. Never said a word.
Now I see he possibly had essential tremor. Small world,
isn’t it? Kai and I are both really thrilled to be part of a
worthy cause.”
12
The Tulips for Tremor
jewelry was designed from
the original logo (shown at
left). Tulips for Tremor pins
or pendants can be ordered
using the form on page 20.
Tulips for
Tremor pins
symbolize
support,
hope and
friendship
arvey
nd H
Janis a
n
Eisme
Wearing a special pin on a collar or lapel is often an expression of support for a cause or an idea. Patriotism, for
example, is often symbolized by a flag pin. The Tulips for
Tremor pin and pendant symbolize the wearer’s awareness
of ET and support for those who live with it every day.
The Tulips for Tremor jewelry also expresses hope.
Whether the pin is on a collar or lapel and whether the
pendant is on a chain or bracelet, the wearer expresses
hope for a future free of ET.
The jewelry also expresses friendship. Janis and Harvey Eismen created the Tulips for Tremor pin and pendant as a way
to honor their friendship with Shari and Stanley Finsilver.
“Shari and Stan have been our friends for over 40
years,” Janis says. “No life-cycle event would be the same
if our families didn’t celebrate together. We are so proud
of Shari’s accomplishments with the IETF and of how she
lives with essential tremor. She is a wonderful source for
those diagnosed with the condition. We are happy to show
our support.”
The Eismens’ design celebrates friendship through giving. They have donated the cost of casting the Tulips for
Tremor logo as well as the production of pins and pendants to the IETF in honor of the Finsilvers.
The Eismens have been in the jewelry business for 18
years as owners of Southfield Gold and Diamonds, Flint,
MI. Through referrals, they sell jewelry in their community
and throughout the country.”
Debbie Lovelace
Sonograms inadequate as
diagnostic tool for ET
In a study reported in the June 28, 2008 online edition of Acta Neurologica Scandinavica, it was found that
sonograms of the substantia nigra, an area of the brain
responsible for voluntary movements, may “serve as a
practical and sufficiently sensitive neuroimaging tool” in
distinguishing essential tremor (ET) from Parkinson’s disease (PD).
The study, conducted by the University Department of
Neurology, Sestre Milosrdnice University Hospital, Zagreb,
Croatia, had two independent physicians performing sonograms of the substantia nigra on 80 PD patients, 30 ET
patients and 80 matched controls.
Bilateral substantia nigra hyperechogenicity, or the ability to produce numerous echoes within the substantia nigra, was found in 91 percent of Parkinson’s patients, 13 percent of ET patients, and 10 percent of healthy subjects.
Researchers concluded that substantia nigra hyperechogenicity is a highly specific finding of PD, and then
speculated that when found in healthy individuals or in ET
patients, it might correspond to an increased risk of developing PD later in life. They also speculated that when
found in ET patients, as suggested by positron emission
tomography studies, it could be a result of impairment of
the nearby nucleus ruber, or red brain, a part of the brain
involved in motor coordination.
Rodger Elble, MD, PhD, professor of neurology and
chair of the Department of Medicine at Southern Illinois
University School of Medicine, Springfield, IL reviewed the
study’s findings, and said, “The authors suggest that their
method is very accurate, but it is clearly no better than a
good clinical exam by an experienced physician. The authors also suggest that the ET patients and controls with
abnormal transcranial sonograms might have hidden PD
or impairment of the neighboring red nucleus, but this
suggestion is pure speculation.
“Stockner and colleagues (Movement Disorders 2007;
22: 414-417) previously found abnormal transcranial sonograms in 16 percent of ET patients, 3 percent of controls and 75 percent of PD patients. This study and Budisic’s study used patients and controls with clear-cut clinical
diagnoses.
“A better test of transcranial sonography would entail
the recruitment, sonographic evaluation, and long-term
follow-up of patients with less certain diagnoses. Transcranial sonography will be of value to clinicians only if it can
improve the accuracy of diagnosis in difficult patients.”
Furthermore, Dr. Elble points out that abnormal transcranial sonograms are found in conditions others than PD.
“Walter and colleagues (Brain 2007; 130: 1799-1807)
found abnormal transcranial sonograms in 40 percent of
depressed patients with no evidence of parkinsonism,”
says Dr. Elble.
In conclusion, Dr. Elble states that “the accuracy of this
test (transcranial sonography) is uncertain, and the routine use of this test in the clinical evaluation of ET patients
is not recommended.”
Question
& answer
Question:
Can lead exposure
cause ET?
Answer:
There is considerable interest
in the role of metals in causing
Anthony Lang, MD
neurologic diseases. Examples
of this include iron in Parkin- is a professor at the University
Toronto, Department of
sons disease and aluminum in of
Medicine and is director of the
Alzheimer’s disease.
Morton and Gloria Shulman
Most acute heavy-metal ex- Movement Disorders Centre
at Toronto Western Hospital,
posures result in a syndrome
Toronto, Canada.
known as encephalopathy,
which causes confusion, poor memory, mood changes,
headache and possibly coma and seizures. A fine postural
tremor of the arms may be present.
Chronic exposure to certain heavy metals, including
lead and arsenic, results in damage to peripheral nerves
usually causing complaints of weakness in the hands and
feet and tingling and loss of sensation in these areas. It
may also result in a postural tremor of the arms and legs,
but typically, this is not a prominent feature.
Tremor is rarely a consequence of toxin exposure, and
then it hardly ever occurs as an isolated symptom. When
an individual consults a physician complaining of tremor
in association with exposure to an environmental toxin,
the association is most often coincidental and the tremor
is due to a neurologic problem.
inspirational cover story
Kate Larsen
Don’t hold back because of ET
14
ly curtailed the energy drinks. Giving up her morning
coffee ritual with her sister was much more difficult.
In college, Katie’s head shaking became worse, but she
didn’t allow it to trouble her too much. She had another,
more obvious problem — when she became nervous or
stressed, her face turned bright red.
“I blushed really badly. It was terrible and much more
embarrassing than my head shaking,” says Kate. “Besides, the doctors I saw never noticed my head shaking,
and when I pointed it out, they just told me to stop drinking caffeine, even after I told them I didn’t drink caffeine
any more.”
Kate’s head tremor became a serious concern one
night when she was pulled over in Hackettstown, NJ,
for speeding.
t
Stopping at Dunkin Donuts was a bonding ritual for
16-year-old Kate Larsen and her sister every morning as
Kate drove the pair to school. She always ordered a large
coffee. And like many people of her generation, Kate also
liked to drink “energy” drinks that serve up heavy doses
of caffeine.
One day someone asked Kate if she was drinking too
much caffeine. Perplexed, Kate wanted to know why the
person would ask such a thing. The answer: Kate’s head
was shaking.
That was when Kate, now 27, realized her head
was moving back and forth as if she were disagreeing with something or saying “no.” Like her questioner,
Kate determined her problem was too much caffeine,
and even though she loves caffeine, she immediate-
“The officer asked if I was okay. I said I was fine. He
asked again, and then he said, ‘Miss, you’re shaking.’ Need
I say I was worried? I was attending Centenary College in
Hackettstown, NJ, and college towns are known for partying. I tried so hard to hold myself still, but that just made it
worse. He asked one more time and then, thankfully, just
gave me a speeding ticket.”
At the time, Kate was taking Wellbutrin®, an anti-depressant, and she thought the medication was making her
tremor worse, so with her doctor’s approval, she quit taking it. She immediately saw a slight decrease in her tremor,
but it didn’t go away completely.
With a degree in equine studies and communication,
Kate moved from her childhood home in Connecticut to
Virginia for a job and to be closer to her boyfriend. Equine
studies, she explains, is the study of horse anatomy, physiology, and everything else there is to know about horses.
She studied communication because she thought it would
be wonderful to write for a non-profit, especially a nonprofit benefiting horses.
“I’ve been in love with horses ever since I was little.
My parents dropped me off at a friend’s horse barn after
school or on the weekends so I could work off riding lessons or just be with the horses,” she explains.
Pressed, Kate explains why she originally fell in love
with horses. “They’re caring. And they’re dangerous. You
get bit, kicked, stepped on, fallen on, and bucked off. As a
kid, I didn’t mind getting bucked off.”
Today, Kate still loves horses, but their dangerousness
is no longer what attracts her.
“I have a passion for horses, and I love kids. I love working with horses and kids, and introducing kids to horses.”
Two years after graduating from college, Kate saw a
neurologist about her head tremor. After talking with Kate,
observing her tremor, and hearing about a possible family
history — Kate’s aunt had a hand tremor but told everyone
it was a side effect of diabetic medications — the physician
diagnosed Kate as having ET.
“I couldn’t take it any more. I was going to pull out my
hair. So, I was relieved when he saw I had a problem. He
saw I was shaking,” says Kate.
The neurologist put Kate on Mysoline®, but that made
her sick and her tremor didn’t improve. The neurologist
then sent Kate for a deep-brain stimulation (DBS) surgery
consult, but the neurosurgeon suggested she try other
medications before seriously thinking about surgery. He
prescribed Topamax® and propranolol. Kate was relieved
when her tremor improved.
When Kate had outpatient surgery in early 2007, the
nurse couldn’t detect her blood pressure because propranolol had lowered it so much. Kate decided to go off all medication. Today, she still limits her caffeine intake, exercises,
and deals with the reactions of others to her head tremor.
“I hate it,” she says. “Some people think I’m cold and
shivering even when it’s hot outside. Others think I’m saying ‘no.’ Others shake their heads back at me. I guess they
think they’re funny. Sometimes when the shaking is really
bad or I think it will be a very stressful day, I protect myself
by holding my head with my hand.”
But Kate takes the reactions she gets from her riding
students as opportunities to teach people about ET.
“I’m open to my clients about my shaking. I tell them
— the ones that notice or ask — that I’m not cold and
I have ET. I explain to them that it’s not fatal, but it at
this point it’s not curable. I also tell people what makes it
worse and how I deal with it.”
While Kate has never allowed ET to hold her back from
pursuing her dreams, she has chosen to eliminate some
things and replace others when stress levels become too
great. For Kate, it isn’t about how ET limits her; it’s about
what she can accomplish despite ET.
“ET has affected my work, but I see it as a good thing.
I quit a very stressful job in the horse industry that just
pulled me from every angle. I felt myself stress more, so in
turn my shaking got worse. I felt there was only one thing
to do — get rid of the stress.”
Peter Muller, IETF Community Ambassador, met Kate
while recruiting support group leaders in the Virginia
Beach, VA, area, and he’s impressed with her vibrant, yet
practical attitude.
“Kate knows what she wants, and she has a wonderful
ability to relate well to other people,” says Peter. “She is
a real role model for young people, for people of any age
really, on directing one’s life while dealing with the effects
of a chronic condition.”
As Peter says, Kate doesn’t hold back. While working
as a horse trainer and riding instructor, Kate is considering returning to school to become a nurse and she is
contemplating starting an ET support group. Kate’s cando attitude is something she encourages people with ET
to adopt.
Debbie Lovelace
“I want readers to understand that
even though they have ET, they can
experience their lives without holding
back. Don’t let ET restrict you.”
Kate Larsen
generic medication options
Between a rock and a
The cost of name-brand medication
versus generic drug effectiveness
process as the name-brand developers, but they had to
wait for the brand-name’s 20-year patent to expire before
beginning testing. According to the Congressional Budget
office, in 1982 only 35 percent of top-selling, brand-name
drugs with expired patents had generic competitors.
In 1984, the Drug Price Competition and Patent Term
Restoration Act — Hatch-Waxman Act — made generics
cost-effective to develop, and easier to get to market. Generic developers no longer had to conduct human-trials,
but instead only had to prove that their generic delivered
the same active ingredient to the bloodstream of a patient
in virtually the same amount at virtually the same rate as
the associated name-brand. This change is a major reason
the cost of generic drugs is as low as $4 for a monthly prescription.
The Hatch-Waxman Act, however, did not abolish brandname drug developers’ 20-year patent protection. No generic can be developed and marketed during that time,
and the brand-name developer is free to charge whatever
is necessary to recoup expenses and to make a profit.
During the 20-year patent protection period, expensive
marketing campaigns work their magic. Brand-name drugs
are well-known and used by hundreds of thousands to millions of people around the world. When generic equivalents
enter the market after twenty years, their manufacturers
have no need to spend money to market their generic,
because, according to the FDA, a generic is a “copy of a
brand-name drug in dosage, safety, strength, how it is taken, quality, performance and intended use.” This is another
reason why the cost of most generics is so low.
However, a generic is not an exact replica of its corresponding brand-name drug. It does provide the same active ingredient, in the same quantity, that treats a condition
as the original name-brand drug, as stipulated by the FDA,
but it differs in appearance — size, color and shape — because of US trademark law.
In addition, the inactive ingredients differ. Inactive ingredients ensure that a pill is large enough to handle, or
that it will not crumble in transport, or that it will have a
particular color or taste. Different generic drugs that are all
associated with the same name-brand drug have different
sizes, colors, and shapes.
If one brand- name drug has six different generics manufactured by six different companies, none of the six drugs
t
In the face of skyrocketing prices, $4 generic prescriptions can mean not having to choose between paying for
living necessities — nutritional food, rent, mortgage — and
buying necessary, often budget-busting name-brand prescriptions.
Today, more than half of all prescriptions in the United
States are filled with generic drugs that save consumers
8 to 10 billion dollars a year. On average, generic drugs cost
30 to 80 percent less than their brand-name counterparts,
and with the growing number of low-dollar generic price
programs being offered by many discount superstores,
groceries and pharmacies, the savings will likely continue
to grow.
Most people agree the low price tag on most generic
medications is a blessing for patients’ pocketbooks. Generics also create substantial savings for federal, state, and
private health insurance companies, oftentimes eliminating
the need for them to pay any portion of the cost of generic
prescriptions. A $4 generic prescription at Wal-Mart, Target, or anyplace else represents the cost of the prescription.
It doesn’t matter whether or not the patient has health insurance because the $4 is not a co-payment — it’s the total
retail cost of the prescription.
Some people — including medical and pharmaceutical professionals — are concerned that patients who buy
generics sometimes accept a lesser degree of effectiveness
compared with brand-name drugs. To better understand
the concern, it’s beneficial to know something of the history of generic drugs and the pertinent legislation governing the generic drug industry today.
Generic drugs have existed since the 1920s when Bayer
unsuccessfully sued to keep copycat aspirin tablets off the
market. Drug testing was much less stringent then and
mainly consisted of putting a drug on the market and pulling it if too many patients had bad reactions. In 1962, the
Food and Drug Administration (FDA) began requiring that
all drug developers prove their brand-name and generic
drugs were safe and effective. This, according to the CVSCaremark website, was in wake of thousands of birth defects caused when pregnant women took thalidomide.
For the first time, large-scale human trials were required
— and the process of getting a generic drug to market became long and expensive. Not only were generic developers required to go through the same rigorous testing
16
hard place
will have the very same combination of inactive ingredimuch as 50 percent to reach the same level of effectiveents. Yet, the FDA says all of these drugs, generics and the
ness as name-brands.
name brand, are the same.
These absorption-rate differences fall outside FDA reguOn its website, pharmaceutical Merck & Co, Inc., says,
lations that allow a single dose of a generic drug to release
“Although 250 mg of a trade-name chemical is identical
80 to 125 percent of an active ingredient into the bloodto 250 mg of the same generic chemical, a 250-mg gestream as compared with the release in a single dose of the
neric pill containing that chemical may or may not have
original medication.
the same effect in the body as a 250-mg trade-name
Additional studies have found absorption discrepancies
pill. That is because everything that is used in a particbetween generics and name-brand medications for other
ular product formulation affects how it is absorbed into
conditions, including seizures and depression. The differthe bloodstream.”
ing “…fillers and binders in generics react differently with
Merck also points out that inactive ingredients can
people’s metabolisms and digestive tracts, so they might
cause “unusual and sometimes allergic reactions in a few
not get the full benefit of the medication,” said Dr. James
people…”
Gaden, a practicing physician, in an article for USA Today.
Kimberly Braxton Lloyd, PharmD, and
No one is suggesting, however, that all
With approximately
Bruce A. Berger, PhD, both of whom are asgenerics have problems or that generics
9,600 generic drugs
sociated with the Harrison School of Pharhave no place in patient treatment plans.
on the US market, pamacy, Auburn University, Auburn, AL, point
The proliferation of generic medications is
out in their June 2007 US Pharmacist article
a huge factor in ensuring patients have aftients need to be alert to
that “…there might be differences in the
fordable prescription insurance coverage.
variations in a generic’s
stability of a generic product when com“The reasonable people I know aren’t
effectiveness and report
pared by the branded product if it is not
pounding
their fists saying all generics are
unusual side effects to
stored under the condition recommended
bad,”
Dr.
Peter
R. Kowey, chief of cardiotheir physicians and to
by the manufacturer.”
vascular diseases at the Philadelphia area’s
the FDA’s adverse-events
Some patients know their generic mediMain Line Health System said in an article
monitoring system,
cations don’t work as well as brand-name
for the Los Angeles Times. “They’re saying
MedWatch
medications they used to take, but comto the FDA, ‘C’mon guys, there may be
(www.fda.gov/medwatch)
plaints to their physicians often fall on deaf
some situations in which [these differences]
ears. Physicians may not believe the pamay turn out to be important.’”
tients — or worse. According to Dr. Patricia Farrell’s article,
With approximately 9,600 generic drugs on the US mar“Differences in Medications?” on WebMD, these patients
ket, patients need to be alert to variations in a generic’s
are often “dismissed as being difficult” by physicians.
effectiveness and report unusual side effects to their physiHowever, medical professionals are taking the growing
cians and to the FDA’s adverse-events monitoring system,
tide of concern among patients more seriously as studies
MedWatch (www.fda.gov/medwatch).
and independent testing are confirming that some generics
In order for the system to work in the best interests of pasimply do not work as well as their associated name-brand.
tients, patients need to be totally honest in sharing concerns
One study may be of interest to ET patients taking geabout treatment plans with their physicians. If one generic
neric Klonopin®, Valium®, or any other benzodiazepine.
doesn’t work, the choice may be trying a generic manufacA report in the journal Hospital Practice shows 20 to 30
tured by a different company before reverting to the namepercent differences in absorption and use time between
brand medication. The savings generic medications provide
generics and the associated brand-name medications.
is something that cannot be casually dismissed.
In her WebMD review of the Hospital Practice article,
Debbie Lovelace
Dr. Ferrell reports that physicians she has talked to tell her
they must increase dosages of generic benzodiazepines as
HISTORY defined
eT
s
s
e
n
tremor
i
a
l
o patients with ET, the word “essential” in essential tremor (ET) suggests the disorder is in some way
necessary. “Essential” in this case
means that there is no known cause.
However, simply providing an accurate medical definition of “essential” ignores the historical significance of when, how, and why ET as
a distinct medical entity was recognized, defined, and named by modern medicine.
The earliest reference to tremor comes from
India’s Ayurveda, an ancient health care system. References to tremor also exist on ancient Egyptian medical papyruses, and during
the second century A.D., Greek physician Galen described the rhythmic nature of tremor.
Although noted by medical literature for thousands of years, the term “essential tremor” was
not regularly used until the second half of the
20th century, almost 100 years after its initial
use in 1874 by Pietro Burresi, a professor of
medicine at the University of Siena, Italy.
Burresi described the case of an 18-year-old
man whose arm shook severely when used but
remained still during sleep, and who experienced head tremor. Neither his parents nor
his siblings had it. Burresi proposed the term
“tremore semplice essenziale” or “simple essential tremor.” Important in his discussion was
the absence of other central nervous system
The history of a name
signs.
Five years later, Edoardo Maragliano, a professor at University Hospital, Genova, Italy,
reported a 62-year-old man with severe, isolated action tremor of the arms and legs. The
patient’s mother also had tremor in advanced
age. First noted shortly after birth, the tremor
worsened so that by the age of 50, the man
was no longer able to work.
Aside from tremor and unsteadiness when
walking, the man’s neurological examination
was normal. Viewing its early onset and heritable nature, Maragliano proposed the term
“tremore essenziale congenito” or “essential
congenital tremor.”
Anton Nagy was an assistant in the Clinic of
Nervous and Mental Disease in Graz, Austria,
in 1890 when he reported on a 26-year-old
woman with severe familial tremor with onset
during childhood. Her tremor spread to her
18
arms, head, legs, and trunk, and eventually she
could not eat or write. Her neurological examination was otherwise normal.
Her brother, also examined by Nagy, had
tremor too, along with 41 other family members, representing six generations. Hand tremor onset occurred prior to puberty, and head
tremor occurred occasionally. Three affected
family members had difficulty walking, but
none exhibited other signs of central nervous
system involvement. When the woman’s brother drank alcohol his tremor disappeared. Nagy
proposed the term “essentieller tremor” or “essential tremor.”
Shortly after Nagy’s report, Fulgence Raymond at the Salpêtrière Hospital in Paris, reported on a tremor he termed “hereditary essential tremor.” A 52-year-old man, hospitalized
for influenza, had tremor of the arms, with a
frequency of 4-5 Hz, which sometimes responded to alcohol. While primarily a postural and
kinetic tremor, it also occurred during resting
conditions. Other than tremor, the patient’s
neurological examination was normal.
The tremor began when the man was a child
learning to write, and by age 13, he could no
longer write. Importantly, the patient’s father,
mother, and brother each had tremor. Raymond
noted that this patient’s only clinical symptom
was “tremor…by itself…that is tremor without
any other injuries or diseases of
which it could be a symptom.”
Raymond excluded other causes
of tremor, and proposed the term
“tremblement essentiel héréditaire”
or “hereditary essential tremor.”
Raymond wrote, “In summary, what we can
conclude from the facts I just presented in this
conference is that there is a variety of tremor
that has a hereditary component, which should
be named essential tremor [Raymond’s italics],
because it occurs independently from any other
symptom which would make us think of brain
injury or intoxication.”
By the early 20th century, “essential tremor”
appeared regularly in medical literature, characterized as chronic or lifelong condition that is
hereditary and that occurs in relative isolation
of other neurological signs.
Extracted with permission from the journal article “Historical
Underpinnings of the Term ‘Essential Tremor’ in the Late Nineteenth Century” by Elan D. Louis, MD, MSc; Emmanuel Broussolle, MD, PhD; Christopher G. Goetz, MD; Paul Krack, MD,
PhD; Petra Kaufmann, MD, MSc; Pietro Mazzoni, MD, PhD
Debbie Lovelace
Holiday Specials! Reduced Prices! No Shipping Fees!
(Order Form on Page 20)
Tulips for Tremor Pin or Pendant.
Attractive silver-toned tri-colored, enamel
tulips with green stems. 1" length by ¾"
width. The pin is perfect for bags, shirts
and caps. The pendant can be worn on
a silver chain or as a charm. (Silver chain
and charm bracelet not included).
Member price $5.95
Non-Member Price $9.95
Men’s Shaking Up Awareness Polo Shirt. Made of 7 oz.
heavyweight pique knit fabric, these sport shirts are soft and
casual. Preshrunk 100 percent ring spun combed cotton is shrink
resistant and garment washed for softness. Features include
double-needle stitching, flat knit collar and cuffs, locker patch,
horn tone buttons and side vents. Shaking Up Awareness logo is
embroidered on the left chest.
White, Black, Navy or Stone.
Sizes: S, M, L, XL, 2XL.
Member price $17.95
($19.95 for 2XL)
($24.95 2XL)
Women’s Shaking Up
Awareness Polo Shirt. Companion sport shirt fashioned to fit
a woman – featuring a shorter cut
throughout the body and sleeves
and smaller armholes. Made of 7 oz. heavyweight pique knit fabric, these shirts are soft and casual. Preshrunk 100 percent ring
spun combed cotton is shrink resistant and garment washed for
softness. Shaking Up Awareness embroidery on the left chest.
Sizes: S, M, L, XL, 2XL (2XL not available in white).
Member price $17.95 ($19.95 for 2XL)
Non-Member Price $22.95 ($24.95 2XL)
Women’s Tulips for Tremor Polo Shirt. Cut for a woman,
this 100 percent ring spun
combed cotton shirt has a shorter
cut throughout the body and
sleeves and features smaller armholes. Soft and casual, this shirt
is shrink resistant and garment
washed for softness. Tulips for
Tremor logo is embroidered on the
left chest.
Sizes: S, M, L, XL, 2XL (2XL not available in white)
Non-Member Price $22.95 ($24.95 2XL)
Women’s Tulips for Tremor
Button Front Knit Sport Shirt.
Made of 5.6 oz., 60/40 cotton/
polyester “Rapid Dry” moisture
management baby pique knit fabric, this stylish shirt has a feminine
fit, is wash and wear ready, and
packs easily for travel. Features
include double-needle stitching, a
full button placket with pearlized
buttons, self-fabric collar, hemmed
short sleeves and side seams. The
Tulips for Tremor logo is embroidered on the left chest.
White or Black Sizes: M, L, XL.
Member price $19.95
Unisex Shaking Up
Awareness Rapid Dry Crew.
Made of 5.6 oz., 60/40 cotton/polyester “Rapid Dry” baby
pique, this shirt has a smooth
hand and superior moisture
management. Features include double-needle stitching,
hemmed neckline and sleeves,
and side seams. Shaking Up
Awareness logo is printed on the
left sleeve.
Black only.
Sizes: M, L, XL, 2XL.
Non-Member Price $19.95 ($21.95 for 2XL)
Shaking Up Awareness and Tulips for Tremor Caps.
All caps are bio-washed
chino twill. Features
include unstructured
construction, lowprofile, six-panel caps
with pre-curved visor,
sewn eyelets and cloth
strap. A tri-glide buckle
closure ensures a perfect fit.
One size fits all.
Shaking Up Awareness cap
Stone – black sandwich visor, embroidered with Shaking Up
Awareness logo on front panel.
Black – stone sandwich visor, embroidered with Shaking Up
Navy – stone sandwich visor, embroidered with Shaking Up
Member price $9.95
Tulips for Tremor cap
Black or Navy – embroidered with Tulips logo
on the left panel and
the words “Tulips for
Tremor” embroidered
in green on the back
panel.
Member price $11.95
Tulips for Tremor and Shaking Up
Awareness Canvas Tote Bags. This
roomy canvas tote bag measures 18" x
14" with a 5" gusseted bottom and has a
convenient zippered main compartment
and front pocket. The bag is made of 14
oz. natural canvas fabric trimmed in black
and features a two-tone hand/shoulder
strap. Perfect for keeping you organized
whether at the beach or an afternoon of
shopping in town. Choose from either
Shaking Up Awareness black logo or Tulips
for Tremor black and red logo imprint on
front pocket.
Awareness Tote
Member price $9.95
Tulips for Tremor Tote – Pink or Red Tulips
Member Price $9.95
MERCHANDISE order form
IETF Merchandise Order Form (merchandise shown on page 19)
Purchaser’s Name ______________________________________
Address ___________________________________________________
City _________________________________________ State _______
r I have enclosed a check for $___________________
written out to the IETF.
r Please charge my credit card (check card type)
Zip __________ Phone _____________________________________ r VISA r MasterCard r American Express r Discover
Name of Person Order Will Ship To
(if different than purchaser)
_______________________________________________________
Use a separate form for each shipping address. If you need
additional order forms, please feel free to make copies of this form.
Card # ______________________________ Exp Date _______
Cardholder’s Signature ________________________________
Mail your order with payment to:
IETF, PO Box 14005, Lenexa, KS 66285-4005, or
Address ___________________________________________________
City _________________________________________ State _______
Zip __________ Phone _____________________________________
CALL TOLL-FREE
1.888.387.3667
Merchandise Description
Tulips for Tremor Pin or Pendant.
Member price $5.95 Non-Member Price $9.95
FAX
913.341.1296
Color
Size
N/A
N/A
ONLINE
www.essentialtremor.org
QTY
Price
Men’s Shaking Up Awareness Polo Shirt.
White, Black, Navy or Stone. Sizes: S, M, L, XL, 2XL.
Member price $17.95 ($19.95 for 2XL) Non-Member Price $22.95 ($24.95 2XL)
Women’s Shaking Up Awareness Polo Shirt.
White, Black, Navy or Stone. Sizes: S, M, L, XL, 2XL (2XL not available in white).
Women’s Tulips for Tremor Polo Shirt.
White, Black, Navy or Stone. Sizes: S, M, L, XL, 2XL (2XL not available in white).
Women’s Tulips for Tremor Button Front Knit Sport Shirt.
White or Black. Sizes: M, L, XL.
Unisex Shaking Up Awareness Rapid Dry Crew.
Black only. Sizes: M, L, XL, 2XL.
Member price $14.95 ($16.95 for 2XL) Non-Member Price $19.95 ($21.95 for 2XL)
Shaking Up Awareness and Tulips for Tremor Caps.
Awareness Cap. Stone, Black or Navy. One size fits all.
Tulips for Tremor Cap. Black or Navy. One size fits all.
Tulips for Tremor and Shaking Up Awareness Canvas Tote Bags.
Awareness Tote.
Member price $9.95
Tulips for Tremor Tote – Pink or Red Tulips
Member Price $9.95 Non-Member Price $14.95
Please allow two weeks to receive your order.
U.S. orders only — orders for shipments outside the
U.S. will not be accepted at this time.
PO Box 14005
Lenexa, KS
66285-4005 USA
20
X
Sub Total
Plus Shipping & Handling
Up to $10.00.......................... $1.95
$10.01 to $25.00.................... $4.95
$25.01 to $50.00.................... $6.95
$50.01 to $100.00.................. $8.95
$100.01 to $150.00.............. $11.95
$150.01 to $200.00.............. $14.95
$200.01 and up.................... $16.95
GRAND TOTAL
FREE
Honoraria and Memorials
Thank you to everyone who established memorials, and contributed funds to honor loved
ones on behalf of the IETF from February 22, 2008 to August 22, 2008. If your donation
was processed after August 22, it will be listed in the next issue of Tremor Talk. (Honoraria
or Memorials listed in uppercase, donors listed in italics.)
Honorariums
DORIS & JIM AUGUST
August’s 50th Anniversary
Shari & Stanley Finsilver
DAVID R. BARRY JR.
Hannah Lee Hagen
JOHN BIXLER
Jonathan Bixler
Mark Bixler
TEDDY BOLAK
AVIS BOLSON
Lin Simpson
RICHARD & TERRI COURTHEOUX
Anniversary
Lillian A. Courtheoux
LILLIAN A. COURTHEOUX
Richard Courtheoux
JANIS & HAVEY EISMAN
JULIE EISMAN
JOHN EVANS
JoAnne M. Tremper
SHARI & STANLEY FINSILVER
Bernie Friedman
SHARI FINSILVER
Birthday
Frances J Finsilver
JEANTETTE FORTUNA
Edward J. Fortuna
DYLAN HYMAN
Richard Hyman
KATIE SOLOMON & MICHAEL KOMORN
NATALIE KUSILEK
Laurie Hansen
ALBERT LEVINSON
Robert Levinson
STANLEY LIPSON
Franklin Gilbert
Murray Zwicker
Sarai Zitter
DALE E. MCGREGOR
Jim Loftis
MARILLA MCGREGOR
Jim Loftis
MY ET FRIENDS
Mirca Liberti
ALEC OLESKY
Suzanne Zimmer
JACKIE POMERANTZ
Trish Gilbert
SUSAN RAUFMAN
Betty Babetch
JOAN ROBBINS
Doris M. White
ANETTE HERRERA & RYAN SPOON
Engagement
GIACO TRAGGIO
Birthday
George Gund
E. Gloria Hoffenberg
MARILYN & STEVEN VICTOR’S GRANDSON
JEFFREY WEISS
RUTH
Harold Wiseman
Memorials
MARIE V. ALLMENDINGER
Doris M. Danekind
EDWARD S. BENTZ
Robin Wolgast
ANNA BERNER
Morton Ozur
THOMAS E. BURDICK
Darlene Merchant
FREDA DIGNEAN
Madelyn H. Pruski
MARTHA DUMLER
D. Edward Elliott
RAYMOND EESLEY
Delphi Electronics & Safety
Richard Griffin
Ike Stage
DAVID EHRICK
N. Romelle Ehrick
ALEXANDER FORBES
Dorothea V. Forbes
EDWARD FRANK
Laura Frank
RUTH ERICH GALE
Douglas Armstrong
Jeanne M. Black
Dick Coombs
Gary J Coon
Mike Drusbacky
Robert Gulas
Robert Hartung
Terry Hetrick
Carl Koebel
Stephen C. Miely
Charles Rainger
Marilyn Russell
John Seiler
Paul Stark
Evelyn M. Sweet
Wayne Warden
Herman Weibel
Jeff Williams
Rodney R Zerkle
JAMES GALLAGHER
Charles H. Damsel
DEAN GARRETT
B. Jane Garrett
HARRY GUTKOWSKI
Pamela Eder
RUSSELL HAGEN
Ella Hagen
VERNA HAKUCHA
Charles H. Damsel
ROBERT HARTZELL
Margaret M. Ackerman
Julie Garvin
Nancy Mowrey
Thomas Neith
Janice E. Rossetti
Donald Wieand
Saucon Valley High School
Moravian College Softball Team
DOLTON H. HERMELING
Charles H. Damsel
LUCILLE IVICH
Nancy Kuntz
Tony Moon
Shriners Hospital for Children - St. Louis, MO
BETTY P. JACOBSON
West Suburban ET Support Group
RICHARD LAWSON JOHNSON
Hollis Armstrong
Carl Carver
Leslie Usher
MARY PAT KIEHM
Jan Krembs
VESTAL KING
Naomi King
Verna Lippke
Werner Schmidt
MAXINE KORT
Shawn Burk
Michael Cohen
Lori Davidson-Mertz
Steven & Nancy Epstein
Arnie Fellman
Richard Fink
Nate & Cathy Forbes
Stefany Freeman
Robert Gaberman
Sheila Hecht
Bruce Israel
Mark Jacobs
Mitzi Jacobs
Stan Jacobson
Dennis Kay
Jerry Kohen
Alger P. LaHood
Hy Levine
Walter Marshall
Jodi Millman
Allan Rein
Debbie Robbins
Todd Sachse
ValerieSchanes
David Schlanger
William Seppala
Bernadene Strager
Truman D. Timmis
Jocelyn Tink
Julie Zalla
HELEN LEDERMAN
Bruce Marger
NANCY MCLAIN
Marianne Yeagley
GENEVIEVE MEINHOLZ
Stephen Borgwardt
Dorothy Haines
Michael Lutz
Vern Meinholz
Roseanne Wilhelm
KATHERINE HULTZEN MENDEL
Carl Hultzen
DR. HENRY MURRAY
Nell Younger
HUGH CHANDLER NICHOLS
Steve Fairbanks
Campbell R. King
AMANDA & GLADYS OREFICE
Maryann Steinfeld
LOUIS OTTO
Chris Moody
Dorothy E. Otto
NETTIE FENLONG POLLARD
Madge B. Campbell
REVIE RADER
JoAnne M. Tremper
RICHARD RELLO
James Franzosa
THEODORE RUDNER
EDGAR SEATON
Gloria Oertle
Elaine Textor
LEONARD SEECH
Alamo Wood Products, Inc.
Enterprise Engineering Consultants, LTD
Stephen F. Ferris
James F. Gayton
Robert J. Hartsock
Alice S. Herald
Evano Lenzi
James D. Miller & Sons
Loretta F. Terrick
Thomas Wright
PAUL SELEGMAN
Miriam S. Lewis
BERTHA STONE
Roslyn M. Meyer
ROSALIE THIES
Gordon S. Bowie
Eleanor Carpenter
Lillian Childress
William Jenkins
Saundra R. Maulson
Darrell Sutherland
Douglas Thies
DuPont HF Mechanical Shop
RUTH TRAEGER
Norman L. Traeger
LOIS TRUEBLOOD
Harvey A. Wilson
LOIS IRENE TUCK
Bruce C. Tuck
VERA VOLK
Vanna Jane
Alice J. Volk
HELEN WILLIAMS
Amy Casai
BILLY & TAMMY WOOD
Doris G. Wood
OSCAR WORD
Edith Word
LOUISE YOUNGER
Alfred Jenkins
AVNNER ZAFARYAR
Blake Froehlich
EILEEN G. DAVIS ZERN
Charles H. Damsel
MARY DONNELLY ZEPP
Alan Frisher
Dianne Zabel
COMMUNITY ambassadors
Community
Ambassadors
A year of wonder and accomplishment
The IETF Community Ambassador program is celebrating its first anniversary — and what a productive year it’s
been! Community Ambassadors have launched 11 new
support groups, given dozens of educational presentations at meetings and health fairs, and met with hundreds
of people with ET.
We talked with Community Ambassadors Preston Boggess, MD, southwest Virginia; Peter Muller, Centreville and
Richmond, VA; and Betty Ann Schwarz, Katy, TX about
their first-year experiences and plans for the future.
before, as a practicing doctor, I met young mothers and
fathers and children. Now I’m meeting people in different
age ranges. It’s exciting. People excite me.”
It’s easy to see how true that is. During his first year
as a Community Ambassador, Preston met hundreds of
people, traveled hundreds of miles, and made almost as
many friends.
“This first year we did a tremendous amount of outreach, including to areas far beyond southwest Virginia,
and we established a number of support groups. I’m not
doing this alone. I couldn’t do it without the help of the
support group leaders.”
Preston recognizes and appreciates the support he receives from the IETF.
t
Breaking news: The IETF Community Ambassador grant
has been renewed for a second year. Preston, Peter and Betty
will continue as Ambassadors, and up to four additional Ambassadors will be added to the program.
Preston Boggess, MD
Copper Hill, VA
Preston Boggess says having ET has always been a disadvantage — until now.
Preston knew early that he wanted to be a country-music singing star, and he began to work toward realizing
that dream at the age of five. The dream died with the
onset of voice tremor.
Becoming a surgeon like his grandfather replaced Preston’s singing dreams, but a persistent hand tremor arrived
when he was 16. Undeterred, Preston pursued his goal. In
medical school he was nicknamed “Shaky,” and whether
or not it was a term of affection depended on who used
it, he says. When fellow medical students refused to allow
Preston to practice blood draws or IV insertion on them,
his adviser told him he could practice medicine as long as
he didn’t become a surgeon.
Much to the benefit of families in southwest Virginia,
Preston chose to become a pediatrician.
As an IETF Community Ambassador, Preston says his
tremor is a definite advantage.
“It’s been quite a surprise. It’s an attention-getter and
it has allowed me to meet so many really wonderful people. Not that I haven’t always met wonderful people, but
22
Preston Boggess. MD, IETF Community Ambassador, discusses the facts
about ET with support group members in Virginia.
“The educational materials, especially the three flyers
on ET facts, medication, and coping, are most helpful. One
support group leader uses these three pieces to provide
all the information he needs to make community presentations. Posting support group meetings on the website
and mailing information to people within the region help
spread the word.
“I’ve been a health educator for 25 years, so I’m already
well-known in southwest Virginia, but my affiliation with
the IETF has made me a welcome visitor in places where I
was not known before. It really is exciting.”
Preston’s plans for his second year as a Community Ambassador include intensifying outreach within the southwest Virginia region as well as further developing established support groups and starting new ones.
Centreville and Richmond, VA
As Peter tells it, he “went through hell” because of the
lack of ET awareness. He refers specifically to his experience
as a Naval Academy midshipman. Seeing Peter’s tremor, a
first class midshipman decided Peter was nervous and not
officer material. Although his attempts to run Peter out of
the academy didn’t succeed, the experience left Peter with
lasting psychological scars.
That experience, as well as others, drives Peter to raise
awareness about ET. He believes strongly that if the Navy
physicians had been aware of ET, they could have helped
to preclude his painful experience.
At the time, Peter was as in the dark about why he
shook as were physicians.
Now that he knows he has ET, Peter wants to help ensure
that no young person endures what he did. He’s working
to make that a reality as a Community Ambassador.
“My biggest objective is to set up support groups for
young people with ET, young people in college. College
students need the most help. The psychological impact is
greater than later in life. They are the most underserved
people with ET.”
Peter is also working for a cure for ET. “I’d give anything
to get that breakthrough they had with Parkinson’s. I suspect it’s more complicated with ET, but I’d like them to get
a handle on what ET is and what causes it. I want it to end.
I also want to get to those people who aren’t DBS (deepbrain stimulation) candidates. I care about all people with
ET because I realize how frustrating it is for them. Coping
isn’t easy.”
During his first year as an ambassador, Peter learned
there’s a great deal of work to do to increase awareness
about ET. Potential support group leaders must be located
and trained, established leaders need continuing support,
and good, knowledgeable speakers need to be lined up.
In addition, to Peter’s surprise, many neurologists need
to be more responsive to their ET patients. “It’s frustrating.
They need to do a better job of addressing the psychological aspects of ET and not just focus on the tremor.”
Peter recognizes it will take at least a couple of years
to see the successes of the ambassador program, but he
believes that “pushing the IETF cause” is the key that will
make a huge difference.
Betty Ann Schwarz
Katy, TX
During her teen years and early adulthood, Betty’s
tremor was more than embarrassing.
“When I tried to control the tremor, my whole body
would shake and people would dismiss me and any comments I made. They made it known that any thoughts or
suggestions I had were not worth considering because I
was obviously a fearful and disturbed individual.”
Now that Betty is older, she has “learned that it is not
the end of the world if I shake or spill something.”
“My husband even tells me I should have at least one white
shirt on which I paint brown and tan spots, so when I spill my
coffee or tea, it will just look like the rest of the spots.”
Betty has also found that talking openly about her tremor as an IETF Community Ambassador helps others better
deal with their own ET.
“Some people have had it all their lives, didn’t know
what it was, and were too embarrassed to seek help,”
explains Betty. “Some have recently begun to shake and
have been too frightened to seek help for fear of what the
diagnosis would be.”
Betty points to many highlights of her first year as a
Community Ambassador. “Meeting everyone at the IETF
office and seeing how things work gave me confidence. I
t
Peter M. Muller
IETF Community Ambassador Peter Muller (left) works with Richmond,
VA support group leaders. From left to right: Diana and Phil Campbell,
Pam Hicks.
Presidents Club
Katy, TX
support
group
members
listen intently
to their guest
speaker.
knew I could call upon them if I needed help. Every support group meeting is inspiring.
Even when it rains and I think no one will attend, at least 24 or 25 people show up. And
there are new people coming to every meeting! The people in the group are wonderful.
They all do a super job.”
According to Betty, making new friends was the biggest and most unexpected benefit during year one. Increasing her knowledge about ET and learning all she can about
using media technology have proved to be her greatest challenges. Her goals for year
two include establishing more support groups and expanding the geographic region in
which she gives presentations about ET, including visiting more 55+ communities.
More than anything, Betty intends to passionately continue what she believes is
her calling.
“Truly I know God has a purpose for me and He has removed some boundaries for
me to accomplish His purpose. He has allowed me to reach others who suffer from
the total disability ET can bring. I’ve seen my sister lose her ability to even care for her
personal needs because of ET. My love and desire to help her and others with ET and
to do God’s will spur me on.”
In Memory
The IETF warmly remembers
Sid and Maxine Kort, and expresses
its condolences to their family.
Maxine passed this year, and her
husband Sid passed in 2006. They had been members of the IETF since April 2000.
They leave four daughters: Connie Silverman, Royal
Oak, MI; Jackie Pomerantz, Glenview, IL; Sandy Bittker, Franklin, MI; and, Denise Kort, Royal Oak, MI; a
Maxine and Sid Kort
brother, Harold Kort, Delray Beach, FL; six grandchildren and three great grandchildren.
The entire Kort family has been active in supporting
the IETF over the years, including taking a leading role in the IETF’s first fundraiser in
Florida in 2006. The IETF is appreciative of all of their efforts, and will greatly miss Sid
and Maxine.
The daughters have established memoriams with the IETF for their father and for
their mother.
24
The IETF would like to
recognize and thank
the members (our Super
Heroes!) of the Presidents
Club for their valuable
support and leadership.
For more information about the
Presidents Club, call IETF Executive Director,
Catherine Rice, at 888-387-3667.
Joe D. & Loretta Barbee
Ricki J. Bell
David & Barbara Berryhill
Eleanor Bredvold
Paul Broyhill
Capt. Ben C Byrnside
John & Dolores Cakebread
Lillian A. Courtheoux
Virginia Culver
Gus Davis
Judith Farrell-Booth
Stanley and Shari Finsilver
Anna Fischer
David & Terri Friedman
Richard & Catherine Frinier
Juanita Froelich
Mary Gibbons
Mrs. Dorothy Giles
Robert G. Grahamslaw
Carol Gruen
George III & Iara Lee Gund
Benjamin Hampton
Gertrude Hankin
Paul Heavener
Martin & Heather Holford
Margaret Klein
Jeanette S. Koppelman
Theodore T. & Michelle Leber
John G. Mancino
Elizabeth McQuale
Stephanie Mendel
Richard M. Morano
Beverly & Herbert Myers
Stewart Noe
Robert & Rosemary Nothwanger
Gladys Olson
Joan Robbins
Vivien Augusta Rock
Russ & Arlene Rosen
Byron Scott
Lee & Susan Smith
Alan & Terri Spoon
Frank Soroka
Joan C. Stearns
Julie Swanson
William L. Teweles
Margaret B. Thaw
Raymond Warman
Douglas & Ruthanne Ward
Leah R. Wickham
Inez Wilson
Gary & Peggy Winterrowd
Fred M. Young
Leonara Zamuco
Suzanne Zimmer
Alfred G. Zook
Support groups
What is an ET
support group?
• An ET support group is an informal,
self-managed, self-help group. It
is not a therapy group or 12-step
program. It is run by and for people
who have ET or who 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. It is a place to talk, laugh,
and empathize about life with ET
with people who will listen, laugh,
and empathize too.
• An ET support group is as unique
as its members. The interests and
capabilities of support group
members vary greatly and change
over time. It is not uniformity that
counts, or meeting a standard.
Rather, it is making the most of
what each group has to offer its
members at any given time.
Prescott, AZ
Sherry Moore (co-leader)
928-778-5330
Judy Veney (co-leader)
926/442-0052
[email protected]
Sun City, AZ
Barbara Goddard
623/875-2014
[email protected]
Tucson, AZ
Billy Wright
520/886-1838
[email protected]
Orange County, CA
Vanessa Madrigal
949-305-7122
[email protected]
Los Angeles, CA
Robert Kribs (co-leader)
310/276-6875
[email protected]
Alta Rudomin (co-leader)
818/700-1876
[email protected]
Redlands, CA
Stella Hollebeek
909/794-2609
San Jose, CA
Shirley Ritters (co-leader)
408/274-1393
[email protected]
Phyllis Souza (co-leader)
408/247-7335
[email protected]
San Ramon/East Bay, CA
Sharon Alexander
925/487-5706
[email protected]
Standford, CA
Lois Sumner
Standford University
Medical Center
650/328-2998
[email protected]
Tustin, CA
Larry Meyers
714/838-3153
[email protected]
Colorado, Northern
Hugh Beckham
970/586-6931
[email protected]
Lewes, DE
Dave Bame (co-leader)
302/645-8813
[email protected]
Nancy Brumbley (co-leader)
302/539-8653
Daytona Beach, FL
Lloyd Dunham
386/761-6509
[email protected]
Lady Lake, FL
Phyllis Bach
352/347-5028
[email protected]
Leesburg, FL
Ruth Green
352/787-8398
[email protected]
West Palm Beach/
Wellington, FL
Richard Cusati
561/827-2974
Atlanta, GA
Lynn Ross, LMSW
404-728-6300
[email protected]
Cedar Rapids, IA
Noma Lucas
319/377-5931
[email protected]
Boise, ID
Sue Ahlefeld
208/272-0079
Chicago, IL
Diane Breslow
Northwestern University Hospital
312/503-4397
[email protected]
Peoria, IL
Janet Danielson
309/397-1515
[email protected]
Support Group list continues
on following page
t
Madison/Huntsville, AL
Jan Barefield
256/864-2850
SUPPORT groups
Continued from
page 25
More than
Skokie, IL
Gladys Keats (co-leader)
847/559-1779
[email protected]
Howard Mirsky (co-leader)
847/398-3378
[email protected]
West Suburban Chicago, IL
Dr. Douglas Ward
630/790-1342
[email protected]
Munster, IN
Donn Davidson
219/872-0972
[email protected]
Wichita, KS
Rita Sevart (co-leader)
316/796-0769
316/210-6544
[email protected]
Marvin Daniels (co-leader)
316/260-7958
[email protected]
Jacqueline thompson (co-leader)
316-722-6696
[email protected]
Cape Code, MA
Robert Reddy
508/457-9025
[email protected]
Baltimore, MD
Alle Cyhan
410/303-7660
[email protected]
Prince Frederick and
Chesapeake Beach, MD
Linda Coty
410-535-3509
[email protected]
60 international locations!
St. Louis, MO
Harold Bruner (co-leader)
314/487-7407
[email protected]
Sonia Watkins (co-leader)
314/832-3901
Asheville, NC
Howard Henze
828/687-2356
[email protected]
Charlotte, NC
Clifford DeCamp
704/521-8103
[email protected]
Wilmington, NC
Tony Homcy
910/452-1634
[email protected]
Albuquerque, NM
Winnifred Averbuck
505/345-3003
[email protected]
Watertown, NY
Nina Hershey
315/232-2373
[email protected]
Aurora, OH
Bob Wagner
330/995-0462
[email protected]
Columbus, OH
David Williamson
614/921-8711
[email protected]
Dayton/Cincinnati, OH
Norma Doherty
937/433-0153
[email protected]
Silver Spring, MD
Dan Miller
301/384-1139
[email protected]
New Philadelphia, OH
Tracy Brady
330/343-4218
[email protected]
Saginaw, MI
Carol Jerome
989/799-5413
[email protected]
Warren, OH
Thurlow “Bill” Boyer
330/609-5696
[email protected]
For information on starting a support group in your
area, contact Dee Ragan,
[email protected] or
call toll-free 1-888-387-3667.
26
Eugene, OR
Nick Richmond (co-leader)
541/689-3323
[email protected]
Dr. Ron Wolfe (co-leader)
541/484-0309
[email protected]
Philadephia, PA
Suzanne Reichwein
[email protected]
Copper Hill, VA
H Preston Boggess
540/651-6777
[email protected]
Falls Church, VA
Karen Schroeder
703/243-1969
[email protected]
412/672-5257
Leisure World of Virginia
Jeanney Swinney
703/609-6614
[email protected]
Austin, TX
Catherine Hall
512/794-8816
[email protected]
Lexington, VA
Mary Barker
540/463-7269
[email protected]
El Paso, TX
Nancy Drumheller (co-leader)
915/821-3125
[email protected]
Lolita DiCara (co-leader)
915/534-9393
[email protected]
Lynchberg, VA
Terry Houck (co-leader)
434/525-6085
[email protected]
Norma Jean McGhee
434/525/4160
[email protected]
Fort Worth, TX
Bob Fisher
817/478-6194
[email protected]
Richmond, VA
Diana Campbell
804/556-2345
[email protected]
Katy, TX
Betty Schwarz
281-347-2194
[email protected]
Roanoke, VA
Charles “Mike” Hopkins
540/721-2087
[email protected]
San Antonio, TX
Charline Wedemeyer (co-leader)
210/673-1482
210/632-0384
[email protected]
James Tremblay (co-leader)
210/590-9181
210/590-9279
[email protected]
Seattle, WA
Allie Fee
206/784-6978
[email protected]
Charlottesville, VA
Rosemary Nothwanger
434-974-6638
[email protected]
Morgantown, WV
Jack Pavone
304/292-5259
[email protected]
Debi Howard
304/293-2343
[email protected]
Pittsburg, PA
Jane Oyler
Chesapeake Beach, VA
Linda Coty
410/535-3509
[email protected]
Middleton, WI
Joyce Montgomery
608/662-9882
[email protected]
Lower Hutt, New Zealand
Robyn Harris
[email protected]
IETF Membership Donations
It’s easy to join the IETF! Just choose the level, and benefits, you want. Remember, your
membership donation is tax-deductible. For your convenience you can also join online
at www.essentialtremor.org. If you have any questions regarding this form, please call 888-387-3667.
STEP #1 Choose your Membership Level
❒ $30 Basic Annual Membership
❒ $500 Platinum Annual Membership
• Basic Membership benefits plus
• Free Online Membership plus
• Printed Annual Report plus
• The new expanded IETF Anniversary Edition of Essays:
1988 - 2008 plus
• ET: The Facts, a book by Drs. Mark Plumb and
David Bain plus
• I Can’t Stop Shaking, a book by Sandy Kamen
Wisniewski plus
• Recognition in Tremor Talk, the IETF member
magazine
• An essential tremor medical alert card
• The Patient Handbook
• The IETF member magazine, Tremor Talk
• The new IETF member newsletter,
The Scoop on Tremor
• Medications flyer
• Coping Tips flyer
❒ $50 Bronze Annual Membership
• Free Online Membership
❒ $100 Silver Annual Membership
1988 - 2008
❒ $1,000 Presidents Club Annual Membership
1988 - 2008 plus
David Bain plus
• I Can’t Stop Shaking, a book by Sandy Kamen
Wisniewski plus
• Recognition in Tremor Talk, the IETF member
magazine plus
• IETF educational DVDs
❒ $250 Gold Annual Membership
1988 - 2008 plus
David Bain
STEP #2 Add Gift Memberships
Add the gift of membership for a family member or friend for one-half the Basic Annual Membership donation of $30!
For $15 you can ensure that the people you care about can also receive all the benefits of IETF membership while you
claim an additional $15 tax deduction. Please provide the following information for each gift membership.
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Name ______________________________________________________________________________
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Relation to you ____________________________________________
Please turn this form over to complete the other side.
membership donations
Please turn this form over to complete the other side.
STEP #3 Additional Donations
❒ In addition to my membership dues, I would like to donate $__________________ toward
(please check) ❒ Research ❒ Honorarium
❒ Memorial
❒ General Fund
❒ I am not interested in becoming a member, however, I would like to donate $__________________ toward
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❒ In Honor of
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Name of the individual you wish us to notify ___________________________________________________________________________
Address ________________________________________________________________________________________________
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STEP #4 Total and Send
Please fill out the form below, and mail it, with your chosen membership donation and additional donations to:
IETF, PO Box 14005, Lenexa, KS 66285-4005. (Your personal information is never sold or given to outside sources.)
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Sub Totals:
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Total:
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(Residents in Canada add $5, International add $10)
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STEP #5 Please Fill Out this Brief Survey
1. Do you have ET?
❒ Yes ❒ No
2. What is your birth date?
3. Please check:
❒ Male
Month __________________ Year ____________
❒ Female
4. At what age did you first notice signs of ET? _______________________________________________________________
5. How many family members, including you, have ET?
Living ______________
Deceased ______________
6. How many generations of your family are affected by ET? (Living and deceased — please include
yourself as one generation) ______________________________________________________________________________
7. At what age were you diagnosed with ET? (If, you have a diagnosis) __________________________________________
8. Please check:
❒ African American
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28
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❒ Black, non-Hispanic
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❒ Other (Please explain) _________
_____________________________
Anniversary Edition of Essays: 1988 – 2008
Specially bound, this collection of essays and articles, written by ET experts within
their respective fields, is available for a limited time only.
The IETF presents this beautifully bound book of classic and relevant essays
about ET and related disorders. These essays and articles provide the latest
information on ET research, genetics, diagnosis, treatments, alternative
therapies, exercise, coping and many other topics. This important compilation,
written by ET experts, is specially bound and is available exclusively through the
IETF for this special, limited-time price. 8.5" x 11", 137-pages, spiral bound.
29.95
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Nonmember price . . . . . . . 39.95
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Prices include
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Three-Book Set – Special Limited-Time Offer!
Save $12 off the cost of purchasing separately!
• Anniversary Edition of Essays: 1988 - 2008
• I Can’t Stop Shaking
• Essential Tremor: The Facts
59.95
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Price includes US shipping and handling
Please fill out the order form below and return it with payment to:
ORDER
IETF, PO Box 14005, Lenexa, KS 66285-4005.
(Your personal information is never sold or given to outside sources.)
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Anniversary Edition of Essays: 1998 – 2008
# of copies _ ___________________ $____________________
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r My check is enclosed (payable to the IETF) OR
Charge my:
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“Can Do” Kate - Essential Tremor

Transcription

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