MD/DC/DE CHAPTER NEWSLETTER

MD/DC/DE CHAPTER NEWSLETTER
September, 2009
Issue 35
Dear Readers,
We wish you a beautiful fall season and hope the cooler weather brings you comfort and good health.
Dr. Macko & Marika Bates
Kicking off our Annual Membership Meeting on September 12th was Dr. Charlene
Hafer-Macko, one of our most loyal supporters. She gave a brief summary of her
research on fatigue which our chapter will support in every way we can. Then we
enjoyed a wonderful and meaningful presentation on caregivers by Rosemary
Allender, a Geriatric Care Manager. Later we heard from Noor Tyme Gigliotti about
the benefits of acupuncture, followed by Sheree Ruhl, Reike and Soul Collage. Linda
Miller, Yoga, led us in some very relaxing meditation exercises. The program was
excellent and inspiring.
One topic of interest at the meeting was volunteering. There are several very gratifying aspects of volunteering. You
can put as much or as little time as you feel you can manage. You can choose someone else to share your job.
Every time you speak to another person about myasthenia gravis is an opportunity to increase awareness of the
disease. Over time as more and more people know a little about MG, the more likely a patient is to get diagnosed
and treated in a timely manner. This may sound like a stretch: a little conversation, then a timely diagnosis, but it
works that way.
In the packet we distributed at the meeting and included here in this newsletter, is a list of volunteer opportunities
with relatively specific job descriptions. Please consider signing up in those areas where you have the greatest
interest. You may mail back your selection or e-mail them to Marika at [email protected] or Lynn at
[email protected]. Call if you like. The numbers are listed here in the newsletter.
Whether you decide to join our Board or simply cook a hot dog at our picnic, this coming year is especially important
in terms of fundraising. We are focusing even more keenly on our projects in 2009. Dr. Charlene Hafer-Macko’s
research on MG fatigue & exercise is foremost on our list for contributions as is our Nurses’ Education Fund. If you
think you don’t have enough time or energy to volunteer, pick someone to buddy-up with and have some fun doing it.
Warm regards and best wishes for your good health.
Marika Bates
Chapter Chair
Donations
Support Group News
Swine Flu, Shingles &
Flu Vaccinations
Board & Volunteer Form
Board & Volunteer information
“Rebooting”
MG Exercise Program Abstract
Pg. 2
Pg. 3
Pg.
Pg.
Pg.
Pg.
Pg.
4
5
6
8
9
Unable to attend the 2009
MGFA Convention?
Out of Place
The 18 Minute Doctors
Appointment Challenge
A little Humor
Our Labor Day Salute
Pg. 10
Pg. 11
Pgs. 12 & 13
Pg. 14
Pg. 15
MG MATTERS
A quarterly publication of the
MD/DC/DE CHAPTER, MGFA
Editor/Publisher
Carol Welty / Lynn Waltz
Officers and board members
Marika Bates, Chair
Bob Howe, Treasurer
Joe Czervek
Bill DeLorenzo
Carol Roman
Aubrey Hellstrom
Marilyn McCloskey
Stanley Way
Remembering “Riley”,
our Chapter Mascot.
Dogs can acquire MG too!
Read Riley’s’ story on our
webpage.
In memory of John Hora
Stacy Dellavecchia
Restricted donations
Virginia Mistr
Joe Lo Grasso
Gerry Weinrib
Lifetime Board Member- Emeritus.
Unrestricted donations
Eva Boger
Dolores Miller
We welcome your articles and request
that they are submitted by November
1st in order to be considered for the
December newsletter.
Wells Fargo comes through for us again! We greatly appreciate the
$1,100 donated by Wells Fargo Employees by participating in their
“Dress Up Days”. An employee pays $5.00 for the privilege of actually
dressing “down” at work. They wear jeans and such, not beach wear,
and enjoy themselves while raising money. Thank you again, Wells
Fargo!
Help us distribute information and
continue to create awareness of
Myasthenia Gravis. Call or send us the
name of your physicians, optometrists,
dentists or anyone else you would like
to add to our mailing list.
Any advertisement in this newsletter is
paid for by the individual and/or
company and does not reflect any
official endorsement of the MD/DC/DE
Chapter or the MGFA.
Any medical views
expressed in this
newsletter are those
of the individual
author and do not
reflect
any official
If you would like
your
donation
of newsletter,
the MGFA
“restricted” (to beposition
used for
brochures,
research,or the patient
MD/DC/DE Chapter.
assistance, fundraising expenses, etc)
please indicate your
choice
onyour
your
Always
contact
check.
own physician who
knows your situation
best.
If you would like your donation “restricted” (to be used for newsletter,
brochures, research, patient assistance, fundraising expenses, etc.)
please indicate your choice on your check.
~~Save the date~~
2010 National Conference
May 5-7, 2010
Sheraton Clayton Plaza Hotel
St. Louis, MO
(Get ready….
it will be in Baltimore in 2011!)
Did You Know that the Myasthenia Gravis Foundation of America has a
membership of at least 12,500 and possibly as high as 18,000 just within
its chapters. They also reach at least 15,000 homes just from chapter
newsletters alone!
~2~
Myasthenia Gravis Foundation of America, Inc.
355 Lexington Avenue, 15th Floor
New York, NY 10017-6603
1-800-541-5454 / www.myasthenia.org
Burke Deiter, 76, a
resident of
Gambrills since
1972, passed away
on June 8th.
Photo
courtesy of
Aubrey
Hellstrom
He was very active
in Pets on Wheels
at Anne Arundel
Medical Center,
Baltimore Washington Medical Center, Crofton Care and
Rehab and Kris Leigh facilities. He was a former Boy Scout
leader and Little League coach. He enjoyed woodworking,
cross-stitching and his pets.
His wife, Jane, is a member of the Glen Burnie Support
Group and Burke would make the “Pets on Wheels” visits
while Jane attended meetings. He, Daisy & Dixie, were
always a welcomed sight when they wheeled in on his
scooter. He will be deeply missed.
We are seeking volunteers who are willing to start support
groups in their homes, churches, libraries, hospital or any
space available in your area. We will help get you started
with brochures/information and sitting in until you feel
comfortable enough to host them alone. They do not have
to be monthly, the schedule depends on your schedule.
Co-lead with a friend if that works best for you. You do not
have to have MG to bring people together.
Would you like to attend a Support Group in the
Lexington Park, MD area?
Melissa Dixon’s brother Jamie was recently diagnosed with
MG. In support of him, she is interested in starting a
support group in or near Lexington Park, MD which is in
Southern Maryland. For more information you can contact
her at [email protected].
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
The first patient with MG ever to be described
in medical writings may have been a Native
American named Chief Opechankanough.
Accounts of his weakness and ptosis, which
improved with rest, were given by colonial
physicians who examined him in the early
1600s and who sent accounts of his condition
back to England. These accounts were not published in a formal
medical journal.
Chief Opechankanough was the uncle of a much more famous
Native American named Matoaka (better known as Pocahontas).
http://www.ncbi.nlm.nih.gov/pubmed/3277598
MD/DC/DE CHAPTER
PO Box 186
Pasadena, Md. 21123-0186
410-432-6193 / 1-866-437-2881
(Marika Bates)
www.myasthenia.org/chapters/Maryland/
WESTERN MD SUPPORT GROUP
St. Ann Church Parish Center
1525 Oak Hill Ave
Hagerstown, Md.
Dave Miller - 717-597-5107
[email protected]
GLEN BURNIE SUPPORT GROUP
1st Saturday of each month, 10 - noon
Baltimore Washington Medical Center
Lynn Waltz - 410-437-3761 / [email protected]
BETHESDA/DC SUPPORT GROUP
3rd Saturday of each month, 10-noon
Suburban Hospital
Bill DeLorenzo - 301-384-1229 / [email protected]
BEAR, DELAWARE
Marilyn McCloskey, RN - 302-292-0876
Rockville Telephone Buddy
Grace DiGiorgio – 301-208-8326
Both Angel and Amy have had thymectomies and are doing
great. They are willing share their experience with you.
You can reach them at…
Angel - [email protected]
Amy - [email protected]
A little Mystery……
The young son of a single mother leaves his
home to trespass on his neighbor's property.
While there, he steals from the neighbor and
takes off all his clothes before running back home.
Although he is seen and chased, he is not caught and no
charges are pressed.
The Mystery: What is the son's name and whose
property does he steal?
Clues: The thief has three sisters.
He is a famous literary character.
He has distinctive ears. He wears only a blue jacket and
clogs. His father was killed by the same neighbor.
The answer to our June “Mystery” is….
The patriot is “Yankee Doodle Dandy
and the pasta, of course, is macaroni!
~3~
Information about the current
Swine Flu (H1N1) concern
Dr. Robert Ruff, MD
MGFA Medical/Scientific Board
The following public health steps are
recommended to contain the
influenza outbreak:
• Cover your coughs with
tissues, then throw them away.
Or cough into your sleeve.
• Keep your hands clean.
Wash them with soap and water
or use an alcohol-based hand gel frequently.
• Stay several feet away from someone with a
respiratory illness.
• Stay home when sick
Several cases of swine influenza
were recently recognized in
Mexico, the United States and elsewhere.
It does not appear at the present time that
people with MG are at increased risk of
contracting swine flu; however, it is likely that
individuals
taking
steroids
or
immunosuppressive drugs such as Cellcept or Imuran
would be at increased risk to contract swine flu.
Since swine flu has prominent respiratory symptoms,
people with MG who have respiratory impairment will
likely be more severely affected. The infection is
spread primarily by respiratory droplet spread coughing, sneezing etc. People with MG should
consider avoiding airplane travel, particularly to
Mexico until the outbreak is resolved. The reason is
that air in an airplane is continually being
recirculated, which could result in one individual with
swine flu exposing the other passengers in an
airplane to droplets containing the swine flu virus.
Information from the Centers for Disease Control (CDC)
and other federal health care agencies is summarized
below.
For the most current US information see
www.cdc.gov/swineflu
Clinical Information from US Cases
• Based on the limited experience with known
cases in the US, this strain of swine flu
appears
to
have
an
incubation
period of 1-7 days and presents with
symptoms typical of influenza-like illness
including
fever,
headache,
cough,
sore throat, and myalgias. Additional
symptoms associated with past swine flu
cases in humans such as runny nose,
nausea, vomiting and diarrhea have also
been reported. The illness appears to last for
4-6 days.
• The swine flu strain appears to be sensitive
to neuraminidase inhibitors. If antiviral
treatment is warranted, the recommended
treatment is oseltamivir 75mg twice a day for
five days. Zanamivir can also be used at a
dose of 2 inhalations of 5mg each twice a day
for five days.
• High-risk group for complications of influenza
is defined as: a person who is at high-risk for
complications of seasonal influenza.
http://www.myasthenia.org/docs/SwineFlu_2009.pdf
Who should NOT get the shingles vaccine?
NEW MAY 2009
Some people should not get the shingles vaccine:
•
•
•
•
•
•
People who have had a life-threatening
allergic reaction to gelatin or the antibiotic
neomycin.
People who have a severe allergy to any
component of the vaccine.
People with a weakened immune system as a
result of leukemia, lymphoma, or any other blood
or bone cancer.
People with HIV/AIDS who have T-cell counts
below 200.
People being treated with drugs
that affect the immune system,
including high-dose steroids.
Women who are or might be pregnant.
http://www.cdc.gov/vaccines/vpd-vac/shingles/vacfaqs.htm
Influenza Vaccination
Influenza season begins in the fall and extends
through the winter. Influenza causes substantial
illness and can be fatal. People with chronic
diseases, such as MG, and people who have
difficulty breathing, as can occur due to MG, are
especially susceptible to be injured by influenza.
PLEASE CHECK WITH YOUR DOCTOR
TO SEE IF YOU SHOULD
RECEIVE THE FLU SHOT.
~4~
MD/DC/DE Chapter of MGFA, Inc.
Board Candidate & Volunteer Form
(more information about both are on the reverse side)
Name _________________________________________________________________________
Address________________________________________________________________________
_______________________________________________________________________________
Telephone ________________________Email_________________________________________
Have you had any past experience volunteering with Boards/committees?
_____NO ____YES
Describe________________________________________________________________________
_______________________________________________________________________________
_______________________________________________________________________________
_______________________________________________________________________________
_______________________________________________________________________________
_______________________________________________________________________________
We currently have these committees formed and anticipate more to be formed as the Chapter
grows. would you like to be involved with any of the following?
Patient Services: Being available to
speak with other Myasthenic’s by
phone ______
Education: Assisting with Health
Fairs, media events or functions that
would bring attention to MG_____
Fund Raising:
Events, mail appeals etc. ______
Publicity: Newspaper listings, TV,
Radio etc._____
Meetings: Annual, support etc.______
I AM NOT INTERESTED IN SERVING ON THE BOARD, BUT WOULD LIKE MORE
INFORMATION ON VOLUNTEERING IN OTHER AREAS. PLEASE CONTACT ME.
Please return to…
MD/DC/DE Chapter, MGFA
PO Box 186
Pasadena, Md. 21123-0186
~5~
WHAT A BOARD MEMBER MAY EXPECT
To inform yourself about Myasthenia Gravis by reading Chapter brochures, internet research and through question and answers.
To attend at least one support group meeting.
To attend all four Board meetings per year, unless excused.
To enjoy our two major functions:
1. The Annual Membership Meeting in September, after which follows one of the four Board meetings.
2. FunRaiser Picnic in May of every year.
Board members are not required to donate money to the Chapter, but it is encouraged, of course. Many members donate varying
degrees of energy and time by soliciting contributions, donating items for our silent auction and bake sale. As a member of our
Board you may invest as much or as little time as you see fit.
Chapter Activities: What the Chapter Does
Our most important activity is the support group. We have three active groups which meet monthly. Patients, their families, and
friends meet to discuss Myasthenia Gravis and how it affects their lives.
We publish a newsletter, “MG Matters” which contains not only chapter news, but very informative articles from other sources on
relevant scientific developments and on coping mechanisms for the patient.
We participate in health fairs, usually sponsored by one of several Community Health Charities in the
Baltimore/Washington area.
In June of each year we participate in a national campaign for “June Awareness Month,” writing letters to local and
national politicians recognition of Myasthenia Gravis, and sending out Public Service Announcements.
Our Chapter does its part in raising money for MG research. Visit our website for more information, www.myasthenia.org. While
you’re there, click on Local Chapters and go to Maryland. Visit our site and have a look at our newsletter, MG Matters. We are very
proud of our newsletter.
Once you attend a couple of meetings you will see where you fit and what interests you. Except to attend the meetings mentioned
above there are no rigid requirements for Board membership.
--------------------------------------------------
Here are examples of a few specific jobs that a VOLUNTEER could sign up for
June Awareness:
Put posters in pubic places like grocery stores, libraries, etc.
Make phone calls to radio and tv stations to determine their policies re: Public Service Announcements.
Keep a list and I'll write the letters. Or help with the letters.
Get up a writing campaign to legislators explaining MG and asking for Declarations.
FunRaiser:
Recruit donations and/or auction items. Bring the items and help with pricing.
Substitute for folks working the tables: auction items and bake sale
Substitute for cooks and servers.
Manage volunteers: keep list and see to rotations
Providers' Manuals
Make lists of providers and deliver the DVDs or manuals.
Health Fairs
Attend Health Fairs in your areas
Set up tables, chairs
Load and set up display board
Annual Membership Meeting
Sit at the front desk
Meet and greet downstairs, giving out name tags
Distribute packets.
Pass the microphone.
Rearrange tables.
Give out advertising give-a-ways
Distribute brochures
Talk with visitors
Meet the caterer and help set up lunch.
Gather leftover packets and return to Lynn
Clean up afterward
Marika Bates, Chapter Chairperson
Maryland/DC/Delaware Chapter
The Myasthenia Gravis Foundation of America
~6~
~7~
"Rebooting"
A Promise For Autoimmune Diseases?
Johns Hopkins University researchers have
developed a new technique in treating autoimmune
disease patients which reboots the immune system
with results that have cured some patients while
dramatically improving the health of others. This is a
new approach to the use of stem cells in treating
autoimmune disease.
Autoimmunity occurs when the blood lymphocytes,
which are designed to defend the body against
infections and foreign agents, actually attack one or
more of the body organs. Researchers in the past
have focused on ways to destroy the diseasecausing lymphocytes and replace them with normal
ones. That attempt has not been successful. Bone
marrow transplantation is now being used by many
medical institutions worldwide. One attempt to get rid
of the misdirected lymphocytes has been the use of
high doses of cyclophosphamide, a chemotherapeutic drug. This method also calls for a blood
stem cell transplant since it has been thought,
incorrectly, that cyclophosphamide in high doses is
destructive to the bone marrow ability to make new
blood cells.
This system was first tried with aplastic anemia
patients. Seven out of the first ten patients treated
by this method have remained disease-free for 10
years—and, in some cases, more than 20 years. The
system was later tried with 27 other patients with
autoimmune diseases, the majority of whom were
lupus patients. Dr. Brodsky reports. "Most are still in
remission, and some are off medications two and
three years later." He continues, "All the patients
we've studied have, at the very worst, remained
stable: Virtually all have had major reductions in their
immunosuppression medications." Dr. Brodsky
cautions that, before this can be called a cure, the
patients must remain disease-free for ten or more
years. Dr. Brodsky offers the comment that "When
we have more information about the long-term
effects of this treatment, and as more physicians and
patients learn about it, the technique could well
become standard protocol for autoimmune
conditions soon after they are diagnosed and well
before the diseases progress or become
debilitating".
Excerpted from Johns Hopkins "Health Insider," interview
with Robert A. Brodsky, AID., Johns Hopkins University
School of Medicine.
From: American Autoimmune Related Diseases Association Inc,
http://www.aarda.org/infocus_article.php?ID=l 1
Stem cells, present in both bone marrow and blood,
regenerate marrow and blood after chemotherapy. In
stem-cell transplants, stem cells are harvested before
chemotherapy by drawing some of the patient’s own
blood or bone marrow. After the chemotherapy, the
blood or marrow stem cells are returned to the
patient’s body. However, patients who do go into
remission after the procedure usually relapse after a
time. This is thought to be the result of the "bad"
lymphocytes returning to the patient along with the
stem cells. How can pure stem cells be isolated from
other blood cells?
Now Johns Hopkins researchers have found a way
to circumvent the problem.
According to Robert A. Brodsky. M.D., assistant
professor in oncology and medicine at the Johns
Hopkins University School of Medicine, "stem cells
contain an enzyme, called aldehydedehydrogenase,
which detoxifies cyclophosphamide. Like most blood
cells, lymphocytes have very low levels of this
enzyme, so cyclophosphamide destroys them but
not the stem cells. That means it is not necessary to
do a transplant to preserve the stem cells." He
further states, "Studies have shown that after
chemotherapy, as the stem cells turn into the
specialized blood cells that have been destroyedthose that become lymphocytes are normal and do
not attack the body. The immune system has been
repaired."
The
Handybar
•
Handle for getting in and out of cars
•
Increases mobility and independence
•
Reduces risk of falls
•
Fits 95% of all newer cars
•
Simple and easy to use
•
Non-slip handle
•
Contains two additional safety features, a seat belt
cutter and window breaker for emergency
situations.
Search the web for the best prices. Rosemary
says you can also find it in auto stores.
~8~
Myasthenia Gravis Exercise Program to Increase
Physical Activity and Fitness and Reduce
Cardiovascular Risk
Charlene Hafer-Macko, M.D., Associate Professor of Neurology
Robyn Nadel, B.S., Medical Student
Baltimore VA Medical Center
Introduction: Generalized fatigue in myasthenia gravis
results in a sedentary lifestyle and profound physical
deconditioning, leading to reduced fitness and increased
risk of obesity, hypertension, dyslipidemia, and type 2
diabetes. This study will characterize the activity and
fitness levels and cardiovascular disease risk profile in 30
chronic, generalized myasthenic subjects. Hypotheses are
that a) subjects with myasthenia gravis are physically
inactive with reduced fitness level and high incidence of
obesity and poor cardiovascular disease risk profile, and b)
a 3 month multi-modal home exercise program that includes
aerobic, resistive, and pulmonary training components will
improve physical activity, strength, fitness, dyspnea, and
reduce cardiovascular disease risk. Specific aims are to a)
define the baseline physical activity and fitness levels and
prevalence of insulin resistance and dyslipidemia in stable
sedentary myasthenic subjects, b) determine whether a 3
month moderate intensity home exercise program is safe
and feasible in deconditioned, stable myasthenic subjects
and c) whether a 3 month comprehensive home exercise
program can enhance fitness, strength, and lung function to
improve physical activity and reduce cardiovascular disease
risk.
Background: The majority of research and clinical training
for myasthenia gravis has focused on immune modulation
and management of the acute illness. The chronic phase of
myasthenia gravis has received much less attention.
Chronic immunosuppression has allowed individuals with
myasthenia gravis to have a normal lifespan. Despite
adequate medical care, 80% of stable myasthenic subjects
report mental and physical fatigue that limits their activities
at work and home. There is little data to quantify physical
activity and cardiovascular fitness levels in subjects with
myasthenia
gravis.
Current
recommendations
for
management of myasthenia and medication side effects
include advice to pace activities; obtain adequate rest, heart
healthy diet and weight loss. Discussions of exercise and
physical activity are often limited because of concerns of
fatigue, over-exertion, and myasthenic crisis. Many health
care providers are hesitant to prescribe exercise programs
without evidence that exercise is safe and effective. To
date, there are only one resistive and three pulmonary
exercise trials for myasthenia gravis. The current study will
examine the safety and efficacy of a disease and disability
specific progressive; multi-modal structured home exercise
program for myasthenia gravis.
Methods: 30 stable, generalized myasthenic subjects; 15 aged 20 to 45 years and 15 - aged 45 to 75 years will be
consented. Baseline testing (2 weeks) will characterize
severity of myasthenia severity, fatigue, fitness, and
cardiovascular risk factors. Measures include Fatigue
Severity Scale, Myasthenia Quality of Life Scale, Short
Form 36 Health Survey, standardized Myasthenia Gravis
Symptom Scale and Quantitative Myasthenia Gravis
Evaluation, manual muscle testing, one repetition maximum
for isometric strength on 3 arm and 3 leg muscles,
pulmonary function tests, body composition measures,
DEXA (percent lean muscle and fat), mid thigh CT muscle
and fat area, 3 hour oral glucose tolerance test, blood lipids,
fitness testing by open circuit spirometry, and 5 day
(weekday and weekend) activity measures by computerized
step activity monitor and accelerometer. Exercise will be
initiated in the Baltimore VA Senior Exercise Research
Center (SERC) (3 days/week for 2 weeks). Then, exercise
will progress in the SERC (1 day/week) with home
exercises (2 days /week) over 3 months. Progression of
aerobic exercise (walking) intensity will be based on heart
rate intensity. SERC and home exercise duration and
intensity will be validated with downloadable heart rate
monitors. Resistive training with Therabands will target
proximal muscles. Breathing exercises will include
diaphragmatic and pursed lip breathing exercises, and
interval-based inspiratory muscle training. A Myasthenia
Gravis Wellness program will include education to optimize
timing of medication, scheduled activities and rests, and
energy conservation. Post-testing will parallel baseline
testing.
Anticipated Results: Chronic fatigue of stable myasthenia
gravis contributes to physical inactivity and reduced
cardiovascular fitness. We expect that a 3 month multimodal home exercise program designed specifically for
subjects with myasthenia gravis will increase physical
activity, strength, and fitness, while reducing dyspnea and
cardiovascular disease risk.
Immunotherapy Linked To
Lower Risk of Alzheimer's
Disease
Science Daily (July 21, 2009) — Immunotherapy IVIg
treatments, the addition of good antibodies into the blood
stream, may hold promise for lowering the risk of
Alzheimer's disease and other similar brain disorders,
according to research published in the July 21, 2009 print
issue of Neurology®, the medical journal of the American
Academy of Neurology.
The study found that people who received IVIg for other
conditions had a 42-percent lower risk of developing
Alzheimer's disease over four years compared to those who
did not receive IVIg. Only 2.8 percent of those treated with
IVIg developed Alzheimer's disease compared with 4.8
percent of those not treated with immune-based therapy.
"Our study provides evidence that previous IVIg treatments
may protect against Alzheimer's disease....[but] do not
constitute an endorsement of IVIg treatment for Alzheimer's
disease. A large scale clinical trial is underway to determine
whether IVIg could be an effective treatment for
Alzheimer's," researchers said.
MG Ontario Newsletter, August 2009
-9-
Were you unable to attend the
2009 MGFA National Conference in May?
Information from many of the presentations
at the
2009
MGFA National Conference is
available for listening to or reading at the following
link:
http://www.myasthenia.org/mgprogram_AM2009presentations.cfm
Listen to Dr. Andrew G. Engel's acceptance
speech as MGFA's 2009 Doctor of the Year.
Listen to or read "What happens when the
phone rings?" with Panel of Chapter Leaders:
Marie T. Ronnlof, Greater Florida Chapter; Dianne
George, Georgia State Chapter; and Jaime Sheppard,
Great Lakes Chapter, Executive Director.
Listen to or read "Maturing with MG" with Ann
Williams, RN, PhD, Assistant Professor of Nursing,
University of Alabama.
Listen to or read "Collaborations and Consortia
-Critical for Research in Rare Diseases
Podcast" with Don Sanders, MD, Professor of
Medicine/Neurology, Founder and Director Emeritus
Duke MG Clinic, Duke University Medical Center, and
James Howard, MD, Chief, Neuromuscular Disorder
Section, Department of Neurology, The University
of North Carolina.
Why do our eyelids get so heavy
when we are tired?
Mark A. W. Andrews, professor of physiology and
director of the Independent Study Pathway at the Lake
Erie College of Osteopathic Medicine, replies:
Generally speaking, heaviness of the muscles around
the eyes, including the levator muscles that open the
upper eyelids, is similar to fatigue of any muscle of the
body. Ocular and brow muscles are especially prone to
fatigue because they are active for most of our waking
hours. Over the course of the day, they gradually grow
leaden with extended use, as our arms and legs do.
Such a feeling may be compounded by general fatigue,
including a lack of sleep, or by specific muscle overuse
related to long hours of focusing on, say, a computer
monitor. Excess skin of the eyelid, or prolapsed fat
pads underneath the eyes, makes an individual more
prone to this sensation. Chronic allergies and sinus
infections may also exacerbate the heaviness, and sun
exposure may cause eyelid swelling and thereby
increase the probability that the drooping will interfere
with vision.
Although heavy eyelids do not typically indicate
underlying medical issues, some conditions do cause
drooping eyelids, or ptosis. A stroke or a muscular
disorder such as myasthenia gravis or myotonic
dystrophy can damage facial muscles or their nerves
and cause ptosis, as can elective facial surgery or
interventions such as Botox injections to the brow.
Listen to or read "Make Better Decisions About
Your Care" with Vern C. Juel, MD, Associate
Professor of Medicine, Division of Neurology, Duke
University Medical Center.
Listen to or read "Strategies for Dealing with MG
Fatigue" with Charlene Hafer-Macko, MD, Associate
Professor of Neurology, Medical Director of the
Myasthenia Gravis Center, University of Maryland
School of Medicine.
Listen to "Ask the Professionals Panel" with
Charlene Hafer-Macko, MD, Associate Professor of
Neurology, Medical Director of the Myasthenia Gravis
Center, University of Maryland School of Medicine;
Vern C. Juel, MD, Associate Professor of Medicine,
Division of Neurology, Duke University Medical
Center; and Robert Ruff, MD, PhD, Professor of
Neurology, Department of Neurology, Veterans
Administration Medical Center.
Source: Scientific American, November 2008.
Michael Merlo
Managing Director
CAIR
Respiratory Services, LLC
11C Gwynns Mill Ct
Owings Mills, Md.
21117
410-581-3400
~ 10 ~
~~ Out of Place ~~
High levels of misplaced proteins may
worsen the disease process in MG.
Stepped-up production of fragments of acetylcholine
receptors, the microscopic "landing pads" on muscle fibers
that normally help process signals from the nervous
system, may provoke the immune system and worsen
myasthenia gravis (MG), new research shows.
In mice with an MG-like disease, these receptor fragments
(which are proteins) are abundant but nonfunctional, and
they end up in the wrong place in muscle fibers.
Matthew Meriggioli, who has MDA support to study new
ways to regulate the immune system in MG, coordinated
the study team (this study was conducted before his MDA
grant took effect).
About the new findings
Investigators at the University of Illinois-Chicago have
found that, in mice with a disease closely mimicking
human autoimmune MG, nonfunctional, mislocated pieces
of AChR produced in an effort to compensate for AChR
loss, appear to stir up the immune system and may
sustain the disease process. The results are published in
the August 2009 issue of Muscle & Nerve.
In a study published last year, Meriggioli and colleagues
describe a new approach for regulating the immune
system in MG mice, using a compound called granulocytemacrophage colony-stimulating factor (GM-CSF). This
compound activated regulatory cells in the immune
system, dampening the autoimmune response and
lessening disease severity in the mice.
Meriggioli's current, MDA-supported work aims to move
this strategy closer to application to human MG.
"Essentially, our work will try to harness the immune
system’s own regulatory network to bring MG under
control, and possibly bring about long-term remissions,”
Meriggioli said.
Meaning for patients
The new findings about the role of abnormal AChR pieces
in mice with an MG-like disease have not been confirmed
in human MG patients. If that occurs, treatment strategies
that prevent the overproduction of AChR subunits could
be investigated.
Homing in on abnormal immune responses to AChRs and
AChR fragments, while leaving the rest of the immune
system alone, by using GM-CSF or similar compounds,
could allow more "bang for the buck" -- more benefit with
lower doses and fewer side effects than in current MG
therapies.
http://www.mda.org/publications/Quest/extra/aug09/place.html#
Previous studies in human MG patients have noted the
presence of similar nonfunctional protein pieces of AChR,
although their role in the maintenance of the disease has
been unclear.
The investigators cite evidence from other autoimmune
diseases that shows changes in the structure, location or
level of a protein can alter the way the immune system
responds to it.
In the MG mice, the new AChR pieces were not integrated
into receptors (as they normally would be) and may
therefore have appeared “misshapen” to the immune
system. They were not able to provide landing pads for
acetylcholine.
In addition, they were in some instances located
extensively along the muscle-fiber membrane, not just at
the correct place, which is where nerve and muscle fibers
communicate, the so-called neuromuscular junction. That
could be another red flag for the immune system.
MG mice with the most severe disease had the highest
muscle-tissue levels of these AChR pieces.
In the severely affected mice, proteins of the immune
system were seen in similar locations as the receptor
pieces, suggesting the pieces had become immunologic
targets.
Reducing production of AChR pieces could become
therapeutic option. Preventing or reducing production of
the new AChR pieces, if their role in the disease process
is confirmed in humans, could become a new goal for
therapeutic development in MG.
Zithromax Precaution
In February, the FDA issued an update to the
label of Zithromax (azithromycin) stating….
"Exacerbations of symptoms of myasthenia
gravis and new onset of myasthenia syndrome
have been reported in patients receiving
azithromycin therapy."
Please use this antibiotic with extreme caution,
and make sure your doctor has this updated
information if he or she wants to prescribe
Zithromax for you.
Information taken from the FDA's
MedWatch:http://fda.gov/medwatch/Safety/2009/
AMPS: Myasthenia Gravis Association, Connections,
Spring 2009
Generic Version of CellCept
The FDA has approved the generic version of the
Roche drug CellCept. The MGFA Medical/Scientific
Advisory Board (M/SAB) believes the medication is
equivalent to CellCept. However, our MSAB is
stating that every patient should contact their
neurologist regarding the switch prior to any change.
No one should make the switch without a
physician consultation.
~ 11 ~
The 18-Minute
Doctor's Appointment Challenge
By Brenda Goodman
Arthritis Today Magazine
Americans get, on average, 18 minutes with their
primary care doctors at each visit. Here's how to use
your time to get the care you need
Doctor’s appointments can be as frustrating as they are
necessary, especially if arthritis is not the only reason you’re
in the office.
In fact, studies have found that the more chronic conditions
you have – and most adult primary care patients have at
least two – the less likely you are to be satisfied with your
doctor’s care.
At least part of the reason for that is time, says Larry
Mauksch, a senior lecturer on family medicine at the
University of Washington in Seattle who studies doctorpatient communication. He authored a review of effective
doctor-patient communication strategies in the July 14,
2008 issue of the Archives of Internal Medicine.
“The evidence suggests that the length of the visit with the
physician has not decreased as much as doctors and
patients think it has,” Mauksch says. “What has changed is
the amount of time available for a meaningful exchange.”
Doctors today are required by the government, insurance
companies and professional organizations to carefully
document nearly every aspect of patient care – from how
they protect your privacy in the waiting room to how often
and how long they wash their hands.
“All these extra requirements come into the medical
encounter and take time,” says Mauksch.
But there is a way, even with so many demands on your
doctor’s time, to have your complaints heard and get your
most important needs met – all within that 18-minute
window.
And the best news is that even if your doctor is not gifted
with a wonderful bedside manner, there are concrete things
that you can do to enhance communication.
Establishing an effective dialogue has benefits that go
beyond the exam room.
Several studies by researchers at the University of
California at Irvine have demonstrated that good doctorpatient communication resulted in lower blood sugar levels
in diabetic patients and lower blood pressure for patients
with hypertension. Other studies have found that positive
doctor-patient visits result in reduced pain for patients with
cancer and other illnesses.
But the converse is also true: Miscommunication with your
doctor isn’t just aggravating; it can be life-threatening.
“Unless we are really trained and activated,” Mauksch says,
“we tend to give up a lot of power to physicians.” And
studies have shown that the more equal the relationship
between doctor and patient is, the more likely it will translate
into health benefits.
Here are the ways you can take charge at each stage of
your visit, and communication strategies that will ensure you
feel better before you even leave the office.
Before the Visit - Put pen to paper.
Make a list of all the reasons you want to see the doctor.
These may include everything from unexplained aches and
pains to prescription refill requests to questions you have
about something you read on the Internet.
Mauksch says it’s also a good idea to prioritize the list so
you can tell your doctor what’s most important to address at
that visit.
Recruit a friend or relative to go.
When you’re in a chilly exam room, dressed in a paper
gown, it can be difficult to focus on the time you’ll have to
interact with your doctor, especially if you’re also feeling
sick and miserable. That’s why it’s a good idea not to go it
alone.
A companion can help do everything from drive to take
notes to ask questions. In fact, researchers at Johns
Hopkins Bloomberg School of Public Health in Baltimore
found that when patients had someone to help them
communicate with their doctors, they were 50 percent more
likely to be satisfied with their doctor’s ability to give
information and 30 percent more likely to be satisfied with
their physician’s interpersonal skills.
Minute 1
Build rapport.
Why: Though they may sometimes seem impersonal and
cold, doctors are of course human. Taking a few moments
to connect can help them set a different tone with you.
How: If your doctor is already a skilled communicator,
Mauksch says, there’s a good chance she will open the visit
with a handshake or a non-medical question. For example,
if she knows your son has recently left for college, she
might ask, “How is it going now that your son has left
home?”
If, however, the doctor breezes into the exam room staring
down at your chart and seems very distracted, slow her
down and bring her attention back to you by making her
aware of her behavior. Mauksch says a comment like, “It
seems like you’re having a very busy day,” or “you seem
really frazzled,” should do the trick.
What to avoid: Overdoing it. Getting drawn into a long
personal exchange can end up putting even more time
pressure on the interaction, frustrating you and your doctor.
Minutes 2 to 3
Review the list of reasons for your visit.
Why: According to a study by researchers at the University
of Rochester in New York, doctors listen to a patient’s
concerns for an average of just 22 seconds before
interrupting. That means your doctor may only hear the first
one or two reasons for your visit, creating the possibility that
your most urgent or bothersome complaints will go
unaddressed.
However, if you list your complaints, before your doctor
asks where it hurts, it helps your doctor to know what needs
her focus at this visit, and it puts you in control of the flow of
information.
And going over your list really won’t take that long. A study
published in the Sept. 28, 2002 issue of the British Medical
Journal found that when patients are allowed to speak at
the beginning of a doctor’s visit without interruption, most
spent less than two minutes spelling out their complaints.
How: Tell your doctor that you’ve made a list of things you’d
like to address and ask if it’s okay if you go over it with him.
Explain that you'd like some help determining which
problems are most important to tackle at this visit. That will
let your doctor know that you respect his time and that
you’re willing to accept some of the responsibility for time
management.
~ 12 ~
What to avoid: Using demanding language that will put your
doctor on the defensive. “You want to use words that will
‘activate’ your doctor, that will cue her into working with you
in a collaborative, efficient way,” Mauksch says. Ask, don’t
tell, and your doctor will most likely agree.
Minutes 3 to 5
Set an agenda.
Why: Primary care doctors are generally asked to tackle
three to six patient concerns per visit, and there usually isn’t
enough time to address them all. Without setting priorities,
some of your most pressing needs might fall by the
wayside.
“The mistake doctors make,” says Mauksch, “is that they
hear one or two symptoms and they immediately go into
diagnosis and treatment and when they come up for air the
visit is already half over.”
When your doctor knows the number and urgency of your
concerns, she will be more likely to address the problems
that are most important to you and to her. She also will be
better able to make rapid judgments about time constraints.
How: After reading over your list, tell your doctor about the
top two or three things that are most pressing, and ask your
doctor if, based on her expertise, those seem like the most
critical issues that need to be addressed. “Remember that
doing a good job on one problem may mean setting others
aside temporarily,” Mauksch says.
What to avoid: Deviating from agreed upon priorities. If you
asked to talk about your diabetes and new back pain, for
example, don’t launch into a discussion about the side
effects of your high blood pressure medication. Similarly, if
your doctor seems to get side-tracked, gently ask why he or
she feels its important for you to get vaccinations at this visit
when you came to talk about back pain.
Minutes 5 to 16
Get ready for the clinical exam.
Why: Your doctor will likely use this time to investigate your
symptoms, “open wide!” and discuss challenges that
prevent you from managing your disease.
How: Be honest. Now is not the time, as the British say, to
keep a stiff upper lip. If a hardship like the loss of a job has
made it difficult to stick to a diet and exercise plan that
controls your blood sugar, let your doctor know. He may be
able to temporarily increase the dose of your medication to
protect your health until you can get your routine back on
track. Similarly, disclosing financial difficulty may prompt
your physician to be mindful of the cost of treatments and
tests he orders.
Also, if something about your symptoms is scaring you,
don’t be afraid to say so. For example, if you’ve been
feeling unusually tired, and you remember that your father
experienced the same kind of fatigue just before he was
diagnosed with cancer, let your doctor know so he can
thoroughly investigate and hopefully relieve your fear.
What to avoid: Clamming up. It can certainly be intimidating
to be poked and prodded, but it’s important to continue to
communicate with your doctor during this diagnostic phase
so he or she can make a well-informed decision about your
care. This is when having a friend or family member in the
room can help.
Minutes 16 to 18
Create a treatment plan.
Why: Studies show that when you, the patient, are involved
in your treatment, you’ll be more satisfied and have a better
health outcome. Your doctor will also be less likely to
generate unnecessary tests and referrals.
How: Review your doctor’s conclusions and the course of
action you decided to take after the visit. For example, if
your doctor warned that your blood pressure was too high
and needed to be lowered, you might say something like “I
know my blood pressure is too high, but we agreed that I
should try getting more physical activity, managing my
stress and cutting more salt out of my diet. If my blood
pressure is still too high at our next visit, we agreed that I
should consider taking medication.”
This is also the time you should ask your doctor to make a
note of any problems you weren’t able to discuss. Making a
written record, Mauksch says, makes it more likely that
you’ll get your concerns addressed by the next visit. Better
yet, tell the doctor you want to repeat the instructions to
make sure you understand.
What to avoid: Leaving before you really understand either
your doctor’s instructions or the reasoning behind his
decisions. Research shows only 15 percent of patients fully
understand what their doctors tell them, and that 50 percent
leave their doctor’s offices uncertain of what they need to do
to take care of themselves.
If you’ve brought a companion with you, be sure to ask that
they write down your doctor’s instructions. If you’re on your
own, it’s okay to bring a small recording device so that you
can review your discussions later, just be sure to ask the
doctor if it’s OK to record before you switch it on. If your
physician uses an electronic medical record, they should be
able to print an after-visit summary that details the important
parts of the visit and treatment recommendations.
Taking an active role in your interactions with your doctor
doesn’t just make the visit more pleasant. Studies have
shown that speaking up will impact your health. Sherrie H.
Kaplan, PhD, co-director of the center for health policy
research at the University of California at Irvine says she
believes that patient passivity, “should be treated as a risk
factor for chronic disease”.
Which means the more you are able to help your doctor
direct your care, the more likely it is that you’ll get where
you want to go.
www.ArthritisToday.org
NEW PRODUCT
I don’t usually recommend
products, but I was introduced
to one that I think would help
anyone who has problems with
lifting.
The product is the Purex
Complete
3-in-1
Laundry
Sheets. They include detergent,
softener and anti-static in one
sheet that goes from the washer
into the dryer. There is no more
lugging detergent, softener bottles and dryer sheets from
the store or lifting them all out of the cupboard. An added
bonus is that they save room in the cupboard. My laundry
came out fine too!
Carol Welty
~ 13 ~
Makes ya think…….
Here are some actual label
instructions on consumer goods……...
On a Myer hairdryer:
'Do not use while sleeping'.
(Darn, and that's the only time I have to work on my
hair).
On a bag of Chips:
You could be a winner! No purchase necessary.
Details inside.
(The shoplifter special?)
On a bar of Palmolive soap:
'Directions: Use like regular soap'.
(And that would be how???)
On some frozen dinners:
'Serving suggestion: Defrost'
(But, it's just a suggestion).
On Nanna's Tiramisu dessert
(Printed on bottom):
'Do not turn upside down'.
(Well....duh, a bit late, huh)!
On Marks & Spencer Bread Pudding:
'Product will be hot after heating'.
(And you thought????...)
On packaging for a K-Mart iron:
'Do not iron clothes on body'.
(But wouldn't this save me more time?)
On Boot's Children Cough Medicine:
'Do not drive a car or operate machinery after taking
this medication'.
(We could do a lot to reduce the rate of construction
accidents if we could just get those 5 year olds with
head colds off those forklifts.)
On Nytol Sleep Aid:
'Warning: May cause drowsiness'.
(And...I'm taking this because???)
On most brands of Christmas lights:
'For indoor or outdoor use only'.
(As opposed to...what?)
On a Japanese food processor:
'Not to be used for the other use'.
(Now, somebody out there, help me on this. I'm a bit
curious.)
On Nobby's peanuts:
'Warning: contains nuts'.
(Talk about a news flash!)
On an American Airlines packet of nuts:
'Instructions: Open packet, eat nuts'.
(Step 3: maybe, uh...fly Delta?)
I don't blame the company,
I blame the parents for this one:
On a child's superman costume:
'Wearing of this garment does not enable you to fly'.
How To Maintain A Healthy Level Of Insanity
1. At lunch time, sit in your parked car with
sunglasses on and point a hair dryer at passing cars.
See if they slow down.
2. Page yourself over the intercom. Don't disguise
your voice!
3. Every time someone asks you to do something,
ask if they want fries with that.
4. Put decaf in the coffee maker for three weeks.
Once everyone has gotten over their caffeine
addictions, switch to Espresso.
5. In the Memo field of all your checks, write
“For Marijuana”.
6. Skip down the hall rather than walk and see how
many looks you get.
7. Order diet water whenever you go out to eat, with
a serious face.
8. Specify that your drive-through Order Is “'To Go”.
9. Sing along at the opera.
10. Five days in advance, tell your friends you can't
attend their party because you have a headache.
11. When the money comes out the ATM, scream
“I Won! I Won!”
12. When leaving the Zoo, start running towards the
parking lot, yelling “Run for your lives! They're loose!”
13. Tell your children over dinner, “Due to the
economy, we are going to have to let one of you go.”
We all need a “smile”
every once in a while.
~ 14 ~
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They earned the right
by Edgar A. Guest
I knew Ket and Knudsen, Zeller, Zeder and Breer.
I knew Henry Ford back yonder as a lightplant engineer.
Never counted hours of labor,
never wished their tasks to
cease.
And for years their two
companions were those
brothers, dirt and grease.
I'm a “knew-'em-when” companion who frequently recalls
Boy, this verse is fact,
That none of the those big brothers were too proud for overalls. not fiction, all the fellows I have named worked for years for
wages and were never once ashamed.
All the Fishers, all the leaders, all the motion pioneers
Worked at molds or lathes or benches at the start of their
Dirt and grease were their companions, better friends than linen white.
careers.
Better friends than ease and softness, golf or dancing every night.
Chrysler, Keller, Nash and others whom I could
but now won’t name
Had no high-falutin' notion ease and softness led to fame.
They had work to do and did it. Did it bravely, did it right,
Never thinking it important that their collars should be white.
Now in evening clothes you see them in the nation's banquet halls.
But they earned the right to be there, years ago, in overalls.
Edgar Albert Guest was a prolific American poet who was popular in
the first half of the 20th Century and became known as the People’s
Poet.
~ 15 ~
Myasthenia Gravis Foundation of America, Inc
PRSRTSTD
Nonprofit Org.
U.S. Postage Paid
Pasadena, MD
PERMIT No. 498
MD/DC/DE CHAPTER
PO Box 186
Pasadena, Md. 21123-0186
I want to help realize our vision of a world without Myasthenia Gravis
Enclosed is my $____________________________________TAX DEDUCTIBLE donation
Payable to the MD/DC/DE Chapter, MGFA (address above)
A receipt will be mailed to you.
NAME_________________________________________________________________________________________________________
ADDRESS _____________________________________________________________________________________________________
CITY, STATE, ZIP______________________________________________________________________________________________
You may also donate directly through your place of employment.
THANK YOU, YOUR SUPPORT IS APPRECIATED