The Motivator
Once again I find myself, the proverbial Gemini, celebrating
another year of longevity. Like me, this makes the MSAA
another year older as we enter our 28th fiscal year. Reflections
on the past range from extreme happiness to great sorrow.
However, the enormous feeling of pride for all of our
accomplishments and achievements still continues. Many of
you have shared this feeling with us, and we are indeed
grateful for your loyalty, friendship, and support. Your
continued support of the MSAA will help us extend all of our
support to you in return.
Over the years the Motivator has presented our many
achievements and accomplishments and has kept you all
informed of our activities and programs. The newsletter also
has given me a way to convey to you my professional and
personal thoughts on a wide variety of subjects. Throughout
the MSAA's 28 years of existence, I have regarded all of you
as special friends, and I would like to share this sentiment
with you on my birthday:
John Hodson, Sr
A Special Friend
special friend is a friend who shares,
One who listens, one who cares,
One who's quick to lend a hand,
to ease a hurt, to understand -
A special friend is a blending of
loyalty and cheer and love,
Faith and trust and kindness, too -
in short, it's someone just like you!
-John Hodson, Sr.
Presenting the winners of the
1997
Project: Learn MSTM Essay Contest
"I'm OK, are you?"
Silently, the myelin sheath decays; with stealth.
A scar. Multiple scars.
Unheard, unseen, unnoticed. Until.
I trip; can't see the words; can't feel your touch.
I cannot make that love that meant so much.
"The message isn't getting through," he said.
"You have MS." "I'm only 29," I said.
A husband, children, job and dreams.
Benign? Relapse-remit? Chronic relapse?
Chronic Progressive? Is that me perhaps?
We work together, he and I; we talk; we share.
"Why ME?" I cry inside, I shout.
"Why NOT me?" I hear a voice, "Who else?"
I turn to face the truth: I've lost control,
But guilt and grief will not pervade my soul.
I see the struggle in my child; the rage within,
These trembling hands, these spastic limbs;
These canes and crutches, ramps and lifts;
This Mom is very different from the rest -
Sweetheart, with love we ALL can pass this test.
Unpredictable.
Incurable.
Relentless.
Attack. Relapse. Remission. Hope.
Relapse. A little shaky but I'll make it there.
Relapse. Can't make the game today, my love.
Relapse. Sorry, babe, the message isn't getting through,
I've wet my pants, and all of this in front of you.
That's it! It's tough!
But I'm still alive and not alone!
Lost my body but not my brain.
Don't say I'll never walk again - I will!
Great things can happen - fundraise, find a cure;
They ride, they run, they walk, they laugh - I'm there;
You're great! We'll take any penny you can spare!
A wheelchair scooter rally!
Get the "a-b's" in these things and let 'em loose
Experience the view
Of tummy-level life-
Where buttons are too high to push,
Ramps too steep;
Doors too heavy,
Doors too small;
No bars to help - I need to go!
I'm in the road, I know I'm slow!
No coffee there, too many steps;
This sidewalk disappears;
Can't shop at so-and-so...why not?
No striped-zone in the parking lot.
You need to go?
True Value's is the best in town - I know!
Autonomy
Independence
Respect my rights as yours.
Keep the stores, the art, humanities within my reach.
Don't isolate me from the world when making city plans
Think small, think close, think mixed.
Think green, think birds, think plants and flowers;
Think people, sidewalks, social needs -
Clinics, pools and schools
That we can access alone and proud
At any time, with low expense,
To share the world that this disease has changed for us
So young and strong before;
That this disease will shrink;
That this disease will steal
And we will share no more.
The quality of life is Life in all its forms,
It is light, laughter, quiet and comfort -
That's nothing new to you.
It's just more difficult to get when your legs don't work
Or your eyes can't see, or your hands won't move
Where you want them to.
Find a new way to see when this person goes by,
As you murmur to yourself,
"There, but for the grace of God, go I."
Project Learn MS '97
Project: Learn MS '97 received 1,687 essays. Out of this large
group, 24 judges volunteered their time to help us narrow
down the field to two grand prize winners, and two honorable
mentions. MSAA would like to thank the judges who read the
essays and gave so much of their time and dedication to the
project: Cynthia Bleshman; Art Campbell; Beverly Cox; Tracy
DiPaolo; Jay Feldman; Mary Fergusen; David Flegel; Jim
Hansen; Lori Hart; Dean Insana, D.C.; Paula Joffe; Ian Johns;
Colleen Keenan; Tom McLaughlin; Elaine O'Brien; Edward
O'Donnell; Cherie Riverso; Amy Sciarretto; Steve Shapiro;
Sondra Snitoff; Raymond Spearman; Kathleen Stevens; Flo
Werner; and Neal Zoren.
PROJECT: Learn MS '97 is a national public awareness
program designed to help young adults understand multiple
sclerosis, as well as earn a college scholarship and help raise
vital funds for MSAA programs. Under contest rules, each
participant was required to write an essay on MS, its effects
on the family, and how society can impact and improve life
for the physically challenged. This year the contest was open
to both high school students (sophomores, juniors, and
seniors) and college students (freshmen, sophomores, and
juniors). Each grand prize winner received $8,000 in
scholarship money.
A Call for Entries
Friday, June 5th, 1998 is the deadline for the PROJECT:
Learn MS '98 essay contest. The competition will again be
open to both high school students (sophomores, juniors, and
seniors) and college students (freshmen, sophomores, and
juniors). Students from each of the two levels will be judged
separately and $16,000 in scholarships will be awarded.
For an application, please send a self-addressed stamped
envelope to: PROJECT: Learn MS '98, 706 Haddonfield
Road, Cherry Hill, NJ 08002. Applications will be available
in September. We look forward to hearing from you!
Essay Contest Winner: High School Division
Do You Know Me?
I am feared by all who know me personally, but feared even
more by those who don't. Few know much about me, and
therefore my reputation is often worse than the reality.
Attacking the "invincible," those in rich, white, northern,
clean, industrialized countries, I am referred to as the
"democratic disease," because I have no real preference for
any race within that industrialized country; and I am only
slightly partial to women. I am proud to say I have visited
between 250,000 and 500,000 humans in the United States
alone and am gaining more of a grip every day. I have not
only affected each of those people, but their families and
friends as well. Upon my visit, their daily lives were forever
changed.
I made myself known for the first time in 1835, and despite
their continued efforts, these humans don't yet fully
understand how I operate. But then, I take pleasure in being
complex. Theories have been presented that perhaps I am an
auto-immune disease, a virus, or even a combination of the
two, but no one really knows for certain. It has been
speculated that I am hereditary, but I don't attack the same
family enough to uphold that theory. So far the mystery
surrounding me continues to confound them. No one knows
how I degenerate the myelin sheath around a nerve cell,
leaving the hard scar tissue known as gliotic plaque in its
place. My plaques cause the messages from the brain to travel
at half their normal speed. At my whim, I strategically infect
thousands of nerve cells, and this is how I interfere with the
body's functions. Thus I can harm a person in a number of
ways, ranging from loss of bladder control to temporary
blindness or double vision, unsteadiness or dizziness,
weakness, tremors, numbness, or paralysis of the extremities,
fatigue, or slurred speech. I rarely experiment on two people
in the same manner.
Some of the population will receive visits from me only when
they are under stress, suffering attacks only every few years.
Others I enjoy so much that I never leave their side, causing a
gradual weakening and degeneration of their motor skills. I
don't kill quickly, the patient living an average of 35 years
after my onslaught. Canes, walkers, and wheelchairs become
personal items to many by the end, but not to all. I indulge in
all levels of suffering.
I certainly affect a victim's daily life. Some companies have
fired employees based on my presence, while others come up
with new jobs more befitting the afflicted. Home life is
affected too, especially to those victims in wheelchairs.
Spices, cleaning items, utensils, clothing, and everything else
must be rearranged to the level of the person in the
wheelchair. Grip bars or seats are sometimes installed in the
shower so that patients can independently wash themselves.
Humans seem to come up with ways to help afflicted people
no matter what malady I place upon them. Phones have been
invented where the dialing is done by heavy breathing.
Utensils have sticky rubber on them for a better grip. They
wear boots to strengthen their weak ankles. Instead of buttons
and belt buckles, they use snap-ons and elastic. They even
have zippers with gadgets to make them easier to use. Yes,
their inventiveness tries my patience. One woman I left
completely helpless except for the movement of her eyelids.
She couldn't see, but somehow her family managed to spell
out what she wanted based on how she moved her eyelids.
Indeed, I sometimes underestimate the human spirit.
The humans still even have fun, squelching my most profound
efforts. Often they're stronger than I had anticipated. They still
go to restaurants and theaters. They sometimes play table
tennis and even ride with a friend or spouse on tandem
bicycles. Many indulge in swimming, much to my frustration
and (dare I admit? ) my admiration. Experience has taught me
that affecting them daily with physical problems doesn't really
stop these resilient humans, so I try to hit them emotionally as
well.
The physical limitations have a great effect on a patient's daily
life, but the psychological effect is sometimes even more
profound. I choose most often to attack during the ages of
twenty to forty, the most productive years on average for
humans. That is when they marry, build careers, and fulfill
dreams. My presence is therefore devastating. My reputation
has been so built up that often one will fall into despair upon
the announcement that I am with him, or his spouse will
divorce him; or his friends will desert him for fear of catching
me. (I am not contagious, however. I prefer to be more
confounding than that.)
Many a time the actual situation isn't that bad, but the
depression and loneliness of the patient makes things seem
worse. They imagine themselves bedridden within a year, and
I therefore defeat them in a game of the mind. Unfortunately,
some have realized my ruse. When my victims acknowledge
me, and sufficiently adapt to the situation, their hope in the
future aids them tremendously. Through positive thinking and
determination they put up an admirable fight.
I can be fought, and my seriousness lessened; but so far I have
never been defeated. However, these humans worry me. They
are intelligent creatures, and they have a nobility I find
disturbing, as they are motivated to continue the fight. Some
of them help my victims individually through befriending
them and easing the stress of daily living.
Others offer money and time through their wretched
read-a-thons and mara-thons for the sole purpose of raising
support to discover my secrets. Their research efforts have
multiplied to a disconcerting level. Already they have
discovered so much. I fear the day is coming when my power
will be greatly diminished. Perhaps they will even extinguish
me as I have snuffed out so many of them ...
About the Winners
For her moving poem on one woman's struggle with MS,
Fiona Reid of Prescott, AZ, took first place in the college
category. The 48-year-old career chef quit her job to return to
school full-time after a 30-year hiatus. She is majoring in
environmental science at Prescott College and is enjoying
every minute of learning. A resident of Zambia, Fiona is
hoping to soon earn her U.S. citizenship and is thrilled to be
the winner of the PROJECT: Learn MS '97 essay contest. She
wrote her essay about Jackie Potter, an MS Support Group
leader from Prescott.
Christy Harper, 17, who will be a senior this fall at Carmel
High School in Carmel, CA, placed first for her essay
creatively written in the third person all about MS. Christy
works as an assistant at a physical therapist's office and plans
to study medical subjects in college.
MSAA thanks the top fundraiser, Tina Murphy, who raised
$729. She received a color Zenith TV with remote for raising
the most funds.
MSAA would also like to thank all who raised money for MS
and to Zenith, a cosponsor of the contest. Our Southwest
Regional Office and our Pacific Regional Office are proud that
this year's winners hail from their areas.
Essay Contest: Honerable Mention
This excerpt from "The Eternal Rose," by Jen Cannistra, a
high school student from Sparta,
New Jersey, uses a drooping rose as a metaphor for what MS
does to a person.
"Once upon a time there was an old woman who lived alone
on a hill overlooking a small town. She spent most of her days
working in her rose garden, tending the beautiful, delicate
flowers...
One morning, as she looked at her rose garden, she noticed
that her favorite-the biggest, reddest, and most beautiful
flower-looked weak and unsteady. She immediately devoted
herself to the rose, making sure it had enough sunlight and
moisture. However, the rose did not become better, and
instead it began to droop to the side, no longer standing proud
and tall...
Although the rose lost some of its outer beauty, the old
woman did not hold this against the flower. Instead, she loved
it even more. Believing that beauty comes from within, she
often closed her eyes and basked in the fragrance of this rose,
enjoying its qualities. Some people, like her neighbor, could
not notice these inner beautiful traits, and they did not give the
rose the opportunity to spread its joy. The woman, however,
continually supported, loved, and cared for the rose, allowing
the flower to reveal its wonderful gifts."
This excerpt from "She Asked For My Heart," describes the
special relationship the author had with Milda, an MS patient,
who she cared for until her death. It was written by Michelle
Hauso of East Wenatchee,Washington.
"The funeral was over. Milda was gone. My throat ached as I
remembered my friend. Multiple sclerosis: I was 19 years old
when I first encountered it by answering an ad in the local
paper for a position that required live-in assistance.
In the spring she enlisted me to do her gardening. As I
worked, she would motor herself out on to the porch and
watch me with a shawl over her timeworn frame. Each time I
pricked my fingers as I learned to tend her roses, she would
laugh. As they blossomed, she would request me to clip them
and bring them to her. Soon her wheelchair would be full of
beautiful, fragrant blossoms. She looked like she was in
heaven every time she lifted up a flower as if to savor it and
study its delicately formed petals...
As I looked upon Milda in her casket, I wanted to kiss her
goodbye. She looked beautiful; she had finally achieved a
'perfect hair day.' I leaned close, and put my hand on hers. It
shocked me how cold she was. And then I realized she wasn't
there. She was already running..."
Healing from the hive
MSAA funds a historic study to investigate the therapeutic
properties of honeybee venom.
For Donna Domby of Michigan, just getting through the days
was a chore. The 42-year-old mother of two grown children
was diagnosed with multiple sclerosis in 1977. At first she felt
numbness in various parts of her body, had poor vision, and
was very clumsy. Even with the fatigue and vision problems,
she still was able to take care of her children and to work at a
video store for 10 years. When her fatigue worsened and her
vision started to go, she was forced to quit her job. Eventually
her physical health deteriorated to the point where she was
almost totally bedridden. "I couldn't get up the stairs to go to
sleep, so a day bed was put in the living room. I needed help
going to the bathroom. My mother had to come in and help
me every day to make meals and do housework," Donna
remembers.
Then one night her daughter and husband watched a story on
bee venom therapy (BVT) reported by Connie Chung on
television. The segment shared the stories of MS patients who
found some relief from their symptoms with the use of bee
venom stings. Highly skeptical since no other treatment had
worked for her, Donna finally agreed-after much insistence
from her family-to try BVT. Donna and her family traveled
nearly 500 miles to the home of noted BVT activist Pat
Wagner, who also suffers from multiple sclerosis. Known as
the "Bee Lady," Pat has stung more than 7,000 people with
honeybees and has applied 17,900 bee stings to herself to
alleviate her MS symptoms. "That evening after only one day
of bee venom therapy, I could feel spasms in my feet, and I
could feel my husband applying pressure to my toes," Donna
remembers. "It was the first time I had felt anything but
numbness there in many years."
Armed with a jar of bees, Donna began her regimen of
receiving 60 stings every other day. A year later, she walked
across the room at an MS support group meeting without the
use of her cane. The other members couldn't believe her
progress, and wanted to know her secret. To help others like
herself, for three years Donna opened her house to MS
pa-tients from all over the country and Canada to learn more
about bee venom therapy. Five years after receiving the
therapy for the first time, Donna now only gets stung on an
"as needed basis."
Donna knows it works for her because she once agreed to stop
being stung to participate in a BVT study and her symptoms
worsened. When she resumed BVT, her symptoms again
improved.
"Bee venom therapy is not a cure. But until they find a cure
for MS or come up with something better, it's what I have to
rely on. What caused my MS may be different than what
caused it for another person," Donna explains. "That's why
this therapy may not work for everyone. It works for me."
One of the patients Donna helped was Ann Meythaler, also of
Michigan. Diagnosed with chronic progressive MS in 1985,
Ann had garbled speech, serious vision problems, extreme
fatigue, cognitive trouble, numbness, and lost her ability to
walk. When Ann discovered BVT four years ago, it changed
her life. She still uses a wheelchair, but her quality of life has
improved dramatically.
For example, she says on the days that she doesn't get stung,
just unloading the dishwasher can be a difficult task, both
physically and cognitively, and her speech is mottled.
Stung every other day, Ann feels a tremendous energy boost
and her problem solving skills improve. "Even though I am in
a wheelchair, my quality of life is so much better. Just doing
everyday tasks is easier. It may sound mundane, but now I can
take care of my house and cook," Ann says. "You name the
therapy, and I have tried it. But nothing has worked for me
like bee venom therapy. These teeny honeybees are God's
gifts. They may not stop the disease from progressing, but
they have helped me manage my symptoms. I don't get that
terrible fatigue, my vision clears, and I have no numbness."
Like Donna and Ann, thousands of multiple sclerosis patients
are singing the praises of bee venom in helping relieve their
symptoms. Seeing this growing trend, MSAA knew hard
science must be called in to investigate. Through a $250,000
research grant, the MSAA is the first MS organization in the
country to release funds for the human
scientific study under FDA guidelines of honeybee (Apis
melittin) venom therapy as a treatment for MS. The Phase I
study, being conducted at Georgetown University Medical
Center in Washington, DC this summer, will examine the
safety and tolerance of honeybee venom extracts as a possible
therapy for patients with chronic progressive MS.
Under the direction of Dr. Joseph A. Bellanti, principal
investigator and director of the Georgetown Medical Center's
Immunology Department, the first phase of the study will
begin this summer and end a year later. Eight individuals with
chronic progressive MS will receive two injections per week
of honeybee venom extract for one year. Each study
participant will undergo monthly evaluations primarily for
safety and tolerance of the treatment and also to monitor the
efficacy of the procedure.
Chronic progressive multiple sclerosis patients have few
treatment choices, some of which are experimental and pose
serious health risks. In recent years, thousands of MS patients
have reported significant symptom relief through the
alternative practice of bee venom therapy (BVT). For
centuries BVT has been practiced in many eastern countries,
including China, Japan, and Korea. The therapy in-volves
repeated stings from honeybees to various parts of the body.
Experiments have demonstrated that bee venom is far more
potent an anti-inflammatory agent than some currently used
anti-inflammatory drugs. In addition, other bee products such
as honey and bee pollen offer a variety of beneficial uses.
Honey kills bacteria by converting an anti-bacterial enzyme it
contains to hydrogen peroxide, which aids in the healing of
burns and wounds. Bee pollen contains more than 20 percent
proteins and 12 percent amino acids, more than grains, cereal,
or any product of animal origin. It is considered by many to be
nature's most nearly perfect protein food source.
Somewhat new to this country, BVT is practiced by MS
patients and by those who suffer with arthritis and other
degenerative diseases. Although MS patients engaged in BVT
receive 25 to 30 honeybee stings per session and average more
than 3,000 yearly stings, there is no way to accurately
measure how much extract is delivered nor how safely the
stings are being administered. The study will determine
dose-response relationships by giving known quantities of
honeybee venom in calculated increasing doses.
"With so many people stinging themselves, it's kind of
haphazard. By performing this study, we hope to give some
kind of scientific basis for dosage and potential side effects.
This first phase will also evaluate how to give the stings
safely," explains Dr. Bellanti.
Dr. Bellanti is excited with the prospect of unlocking the
secret power of bee venom to help some MS patients and
dismisses the opinion of some of those in the medical
community who view the alternative therapy as a bit 'kooky.'
"We came to this study with bee venom because of the
widespread use of bee venom therapy for the treatment of MS
which is currently going on in this country. As far as I am
concerned, there are two kinds of research: good research and
bad research. Good research asks valid questions and is
conducted using proper methodology," he notes. "It's hard to
argue with preset biases. As scientists and medical
professionals, we need to keep an open mind in order to help
our patients. In the beginning I thought it was a little strange.
But after researching it, I found that there are definite
immunological changes the body undergoes after bee ven-om
therapy. So I thought it may not be so far-fetched. How do we
find out if it really works, unless we investigate it in a
scientific way?"
If Phase II of the study proves promising, Dr. Bellanti hopes
to work with the MSAA on a second phase double blind
study, where some MS patients receive bee venom and others
receive a placebo. "The best outcome would be that bee
venom therapy could become a safe alternative treatment for
chronic progressive MS patients," says Dr. Bellanti. "We are
very excited with the prospect, but we don't want to give false
hope. While we hope it will be efficacious, we have to wait
and see what it shows."
- Christine Norris
A Word of Caution From Our President
"BVT entails a real risk of dangerous allergic reaction, as well
as an emotional and monetary cost in chasing false hopes. The
MSAA does not recommend or endorse the use of honeybee
venom for the treatment of MS or other disorders. We are
funding this study to determine if this approach has any
neurological benefit. If the results prove positive, then
additional clinical studies and possible treatment practices of
MS can begin. If the results prove negative, then the MSAA
has helped to eliminate false hope. Any-one interested in BVT
should first consult his or her physician."
- John Hodson, Sr.
TO FIND OUT MORE
The following resources can provide you with more
information on bee venom therapy:
Health and the Honeybee by Charles Mraz, "the
dean" of bee venom therapy, and The Four
Seasons of Charlie Mraz video. To order these
titles created by the world-renowned apithera-
pist, call or write Honeybee Health Products
at P.O. Box 4326-B, Burlington, VT 05406;
1-800-603-3577.
The American Apitherapy Society Inc. is a non-
profit membership organization that informs the
world of the benefits of valuable products from
the beehive. Its fairly extensive membership base
includes beekeepers, apitherapy patients, and
apitherapists. Members share information with
each other on a regular basis. Yearly membership
costs $40 per year and includes a quarterly
newsletter. For more information, write or call
The American Apitherapy Society c/o Linda Day,
Office Coordinator, 5370 Carmel Road,
Hillsboro, Ohio 45133; 937-466-9214.
These MS patients also are available to help:
Pat Wagner - (301) 843-8350
Maureen Naughton - (508) 568-8841
Kelly Ames
P.O. Bos 1496
East Arlington, MA 02174
Paul Cronshaw, D.C.
Cyberchiro and Hobbyist Beekeeper
Santa Barbara, CA USA
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