Volume 17 March 2015

Volume 17, Issue 1
March 2015
A Publication of Multiple Sclerosis Resources of Central New York, Inc. ®
Message from the Executive Director:
I hope everyone had an enjoyable holiday
season and my wish for you all is a Happy,
Healthy New Year!
We are getting back into the swing of things
with plans for the Annual Walks, Fish Bowl
21, the MS Dinner of Hope and many
educational programs. If you have any
questions about any of the spring fund
raising events or educational programs,
please contact the Office at (315) 438-4790
or 1-800-975-2404.
Remember that the Lending Library is
available for you to borrow books, videos,
etc. We can mail them to you or if you are
in the Syracuse area, you can stop by the
office and take a look at everything we have.
Books, etc can be loaned for up to 2 months
or longer if you need it. Please call the
office first at (315) 438-4790 if you plan to
stop by.
Calling all walkers – Remember that every
person on your team must register so they
can receive the lunch coupon and shirt! We
have a really neat shirt this year, designed
by Annette (as usual, she pops out these
ideas as quick as a 5th Avenue advertising
agency). We are looking forward to our
inaugural event in Binghamton at the
Oakdale Mall, so lace up your sneakers,
Southern Tier folks and we will see you
Any questions about the Walks in general,
please call the Office and we will be happy
to assist you. We would like to remind you
again, please roll any coins and convert any
small bills to larger ones. Annette will send
more information in the Walk Newsletters as
we get closer to the date. Paypal is an
option again, so tell all your prospective
donors. This is a quick and easy way to
make a secure donation on-line.
Look inside for:
Common Gut Bacterium may Protect
Women Against MS
Staring at your wireless device could
be hurting your spine
Uncontrollable Crying/Uncontrollable
Support Group Info
Smile.Amazon.com Info
Romano’s Point of View
A Common Gut Bacterium May Protect
Women Against MS
A new study published in the Journal of
Neurology, Neurosurgery & Psychiatry
Journal of The BMJ- suggests a common
gut bacteria known to cause stomach ulcers
reduce the risk of this disabling disease in
Lead researchers Prof. Allen Kermode and
Dr. Marzena Fabis Pedrini, both of the
Western Austrailian Neuroscience Research
Institute (WANRI) in Australia, and their
team say the findings provide further evidence that the “hygiene hypothesis” – the
idea that exposure to pathogens in childhood
can protect against later life disease, may
play a role in autoimmune disorders.
MS is a chronic neurological disease
believed to occur when the immune system
attacks healthy tissues in the Central
Nervous System. Symptoms of the condition include weak, stiff muscles, tingling
or numbness in limbs, trunk of the body or
face, vision problems and fatigue.
Onset of MS is most common between the
ages of 20 & 40, and women are more than
twice as likely to develop the disease than
Past research has linked early childhood
infection with a bacterium called Helicobacter pylori to lower risk of MS, but
Prof. Kermode, Dr. Pedrini and their team
say such studies have included small samples and produced “contradictory results.”
As such, the team set out to establish a
clearer understanding of this association.
Found in the stomach H pylori infects more
than half of the world’s population, the
majority of whom reside in developing
Most people acquire H pylori before the age
of 2 years, and the bacterium lives in the
stomach for life. While the majority of
individuals infected with H pylori do not
experience illness, some can develop
gastritis – inflammation of the stomach
The bacterium is also responsible for more
than 90% of duodenal ulcers (ulcers in the
first part of the small intestine) and more
than 80% of stomach ulcers.
For their study, the researchers analyzed
data from the Perth Demyelinating Disease
Database, which allowed them to assess
presence of H pylori antibodies in the
stomach of 550 patients who had been
diagnosed with MS.
For comparison, they also looked at the
presence of H pylori antibodies among 299
age and sex matched healthy individuals
without MS, drawn from the Busselton
Community Health Study.
The results of the analysis revealed that
women who did not have MS were
significantly more likely to be infected
with H pylori than women with MS,
suggesting the bacterium may have a
protective effect the against the condition.
This association, however, was not found in
men. In fact, men infected with the
bacterium were more likely to have MS.
Explaining the possible reasons behind the
protective effect of H pylori found in women, the researchers say the bacterium may
move the immune system into a less inflammatory state, which may reduce its sensitivity and lower the risk of autoimmune
disorders like MS.
The team, however, says they are unable to
explain why H pylori did not appear to protect men against MS, and that this is something that needs to be investigated in future
research. Still, the researchers say their findings may lead to the development of new
drugs, that simulate the effects of H pylori,
opening the door to new treatment strategies
for MS and other autoimmune disorders.
Staring at your Wireless Device could be
hurting your Spine
forward by various degrees, as it often does
when checking or sending phone messages,
the force on the neck increases to 27 pounds
at 15 degrees, 40 pounds at 30 degrees, 49
pounds at 45 degrees and 60 pounds at 60
The farther forward a person bends his head,
the more stress is put on the spine, concludeed the study’s author, New York City –
based spine surgeon Kenneth Hansraj, MD.
This additional stress could lead to early
wear, tear, degeneration and possibly surgery, according to the study. On average,
people spend two to four hours each day
reading or texting on their devices or reading a book. This translates to 700 to 1,400
hours a year of excess stress on the spine.
While giving up your phone or books may
not be an option. Hansraj suggests that
people make an effort to look at their devices with a neutral spine and avoid spending hours a day hunched over a device.
Health Care Provider Magazine., Nicole
Collins, Journal Staff.
Uncontrollable Crying/Uncontrollable
For people with brain injuries or certain
neurologic conditions like stroke, dementia
or MS, it could be PseudoBulbar Affect –
Do you have a pain in your neck??? Your
phone may be the culprit.
A study in the November issue of the medical journal Surgical Technology International found that the billions of people in
the world who use a mobile device, like a
smartphone or tablet, are prone to poor posture due to the way they tilt their head to
look at their device. In a neutral position, an
average adult head weighs 10 to 12 pounds.
The study found that as the head tilts
If you or someone you care for suddenly
bursts out crying or laughing for little or no
apparent reason, it may be due to a neurologic condition doctors call PBA. Though
frequently mistaken for depression, PBA
may be the result of a “short circuit” in the
areas of the brain that control emotional expression. This may cause episodes of crying
or laughing that are often sudden and exaggerated or do not match what the person is
feeling inside. Today, there’s NEUDEXTA,
PBA Cont’d
a prescription medication specifically
approved to treat PBA. In a clinical trial,
many patients experienced fewer PBA
episodes after the 1st week of taking
NEUDEXTA. What’s more, many patients
were completely free from PBA episodes at
the end of the study. Your results may vary.
To learn more, visit NEUDEXTA.com or
call 1-855-468-3339.
Neurology Now. December 2014/January
In the Pipeline
The Myelin Repair Foundation (MRF),
which is dedicated to finding treatments that
protect and renew myelin, is collaborating
with the National Institutes of Health to
study MRF-008, a drug already approved to
treat hypertension. The drug appears to
stimulate remyelination in animal models of
“Unlike current therapies for MS, which all
suppress the immune system, MRF-008 may
help protect oligodendrocytes in the brain
from damage,” says Jay Tung, PhD., the
MRF’s chief research officer.
Tassie Collins, Ph.D, vice president of
translational medicine for the MRF, compares MS to a war within the body. Rogue
immune cells enter the brain to attack and
destroy myelin. Then, oligodendrocyes and
other cells help clean up the damage and
rebuild. “The first component of treatment
involves stopping the war,” says Dr. Collins.
“You want to stop the invading immune
cells from getting in and doing damage.”
This is the goal of the drugs currently
prescribed to treat MS. All are designed to
chase away the “warriors” sent by the immune system. Once the attacks cease, the
patients own body rebuilds the damaged
myelin, but not perfectly. “There’s a certain
amount of resiliency in myelin formation,
but most MS patients say they’re left with
some loss in sensation or some other reduction of nerve function,” Dr. Collins says.
“That’s the component that’s missing. There
aren’t any drugs that help the rebuilding
process. Ideally you would want to do bothstop the ongoing damage but also speed up
the rebuilding of myelin. That’s the focus of
the Myelin Repair Foundation-to find a way
to protect tissue and to rebuild it.
Neurology Now. December 2014/January
The Catheter and Bag Set Reinvented
Frequent UTI’s???? Coloplast has a catheter
solution for you.
SpeediCath Compact Set is an all-in-one
catheter and bag set that’s instantly ready to
use. Thanks to an award winning design,
it’s small enough to keep in a pocket or
*A unique compact and discreet catheter
with an integrated and sterile bag
*A simple design for everyday use
*A unique hydrophilic coating for instant
*Designed for no-touch insertion
Order a free sample by calling -1-866-2266362 or visit speedicath.us.
New Mobility. December 2014.
Support Group Information
Interested in sharing experiences about MS,
come with family/friends to a meeting. As
we approach the winter months, please keep
in mind that if the weather is inclement,
Support Group Meetings may be cancelled.
Always check with the office or use your
own best judgment before venturing out.
Syracuse Area2nd Tuesday of the month
Lincoln Middle School
1613 James St. Syracuse NY 13203
School Cafeteria
Madison County Area1st Monday of the month
Chittenango Center formerly known as:
Stonehedge Nursing Facility
Russell Street, Chittenango
2:00PM-4:00PM Conference Room
Auburn/Cayuga County Area4th Tuesday of the month
Finger Lakes Mall, Rts. 5 & 20
Auburn, Community Room
Enter at Theater entrance. 7PM
Oswego County Area1st Wednesday of the month
Seneca Hill Manor
20 Manor Drive, Oswego
2PM First Floor Dining Room
On hold as of Feb. 2015.
Liverpool Group –
3rd Thursday of the month
United Church of Christ Church (UCC) in
Bayberry, 215 Blackberry Rd. 6:00PM –
7:30PM in Fellowship Hall, follow the signs
to the meeting room.
Contact: Carolyn – 409-9692 or Pat – 7207141 or 303-5648
Broome County Group –
4th Thursday of the month
Vestal Library, 320 Vestal Pkwy. Vestal NY
6:30PM Conference Rooms
Contact: Steve – 607-785-7703
MS Breakfast Buddies –
Meeting in the Binghamton area:
Contact Sue: (570) 623-2302 for times and
Romano’s Point of View
Molly's Lesson
A couple of weeks ago, my husband and I
had the privilege of taking our two granddaughters, ages 4 and 2.5 to the Kids’ Fair at
our local state fairgrounds. Any time spent
with our grandkids is a gift, an honor, a
wonder. The Kids’ Fair, not so much. But I
didn’t know that when we set out. I'd picked
up some tickets while browsing in a store a
few days earlier. They were stacked up on
the counter there---FREE, they said—and I
thought they would provide a great indoor
outing for a January day.
We arrived in winter coats, boots, hats and
the usual tag-alongs—the bedraggled puppy
named Newf and the lovey polka-dotted
blankie called Polka. In my purse were bottles of water, sanitizer, wipes, toilet seat
covers, tangerines and crackers, along with
my usual Let’s-Make-a-Deal sundries.
Our first surprise was that the tickets for
adults were not free. Okaaaay. Mental note
taken of my absolute rejection of reading
fine print, or any instructional material, to be
honest. A few steps beyond the ticket booth,
Molly grabbed my leg in fear. The largeness
of the exhibit hall and the noises and lights
were too much to take in all at once, I guess.
Her younger sister, Kenzi, took her cue and
we suddenly had two leg-clingers.
To avoid a pileup at the door, we coerced
them to the first enclosure of sheep, all of us
moving together as a single unit. Who wants
Molly Cont’d
to feed these adorable lambkins?? We pushed money into the tidbit machine, but the
girls didn't budge from my legs. They watched their Poppie feed and pet every last
sheep. Now, they’ve been to many farms
and to the state fair and they have pet and
held lambs, goats, cows, horses, rabbits, and
baby chicks galore. We were showing them
the tiniest lamb ever (only a few days old)
and they were gaining confidence, when it
happened--the ugliest sound EVER! It reverberated through the cavernous hall and
vibrated our bodies. Its gruesome noise is indescribable, but it was probably a lot like a
walrus giving birth while riding in a German
ambulance with a faulty siren, in a hurricane.
Molly covered her ears and actually moaned. Kenzi's eyes opened wide and she looked like she was going to cry. Poppie was still
feeding the animals (eye roll). I was an inch
away from having a seizure from the assault,
but I gathered my wits and said, in a fake
lighthearted voice, "Oh, that's just a game
with funny sounds...see the purple lights?"
In reality it was a hideous clown game (and
oh, I hate clowns) --the kind with a mallet
and a (fake) strength meter thing. The kind
that no one wins. Game or not, it was making them, and me, unglued. We thought
about leaving, and in a last ditch effort to
reclaim our fun day, I turned their attention
to the fuzzy llamas. Kenzi came up to within three feet of the fence and Molly held
some food out in her hand. We were making
good progress…until the next player stepped
up to that darned clown. The scene replayed
with fearful moaning, ear-covering and
wide-opened eyes.
As we continued to move them farther away
from that area, I explained that we had to ignore the sound. "What’s ignore, Koko?",
sweet Molly asked. I explained that it means
to pay no attention to the thing that bothers
you; to pretend it isn't there. Her little face
lit up and she said that, okay, she would do
try to do that. Things got much better because that was when we saw the DUCKS!
Now that whole place was filled with alpacas, llamas and cavies, lemurs, capybaras
and donkeys, oxen, tortoises, and camels,
but nothing impressed like those ducks-Crowned Ducks. The funny pouf of feathers
decorating the duck heads were a real hit.
We were nearing the pony ride when someone stepped up to play that game again, but
when the ear-assault began, Molly looked at
me and she said, “I didn’t hear that at all
because I’m not paying ‘tention to it,
Koko." And I wanted to scoop her up and
yell, "Alright, Molly!! You've got it, girl!!"
I smiled and gave her a thumbs up instead.
(Because I was a beast of burden with a
purse-turned-suitcase and couldn't scoop!)
We went on to ride on the cars, the giant
slide and the runaway carousel (that went so
fast that Kenzi was riding sidesaddle by the
time it finished, and that was with me holding on to her!) Then we stopped for a snack
at the cafe. By the time we left the Fun Fair,
both girls were feeding the white donkeys
and laughing. Fear had dissipated and their
only regret on the ride home was not being
able to bring a life-sized inflatable Spiderman with them.
The moral to my story is obvious: Your day
can be productive and fun if you stop paying
attention to the things that bother you. And
moral number two: Always love Spiderman.
Amazon.com Offers Incentives to Charity
For all of you who purchase items through
Amazon.com, we have news for you. If you
search Smile.Amazon.com and enter
Multiple Sclerosis in the Charity section, we
will receive .5% of your overall sale.
Simple, it sure is! Log onto the computer
and remember MS Resources as you make
your purchases, but it must be entered
through Smile.Amazon.com. Questions, call
Jessa at (315) 438-4790. We know that
there are many people who shop on-line so
spread the word and don’t forget us during
your Christmas preparations too! Put it on
your facebook page so your family, friends
and all your contacts will know about it.
Paste it, share it, Use it!
Amazon donates 0.5% of the price of
your eligible AmazonSmile purchases
to the charitable organization of your
AmazonSmile is the same Amazon
you know. Same products, same
prices, same service.
Support your charitable organization
by starting your shopping at
BE Sure you…
Select a Charity (This is where you would
type in Multiple Sclerosis Resources of
Central New York, Inc. )
Newsletter is written and edited by:
Annette Simiele
Call (315) 438-4790/1-800-975-2404
Fax (315) 438-4704
E-mail [email protected]
Website - www.msresources.org
Multiple Sclerosis Resources of CNY, Inc. ®
is a source of information concerning topics
on Multiple Sclerosis. The information provided to you is derived from professionals in
the field and do not represent our recommendations or opinions. We do not endorse
any products, services or specific treatments.
For the best advice for you, please consult
your physician.
Terms to Know
B-Cell – A type of lymphocyte (white blood
cell) manufactured in the bone marrow that
makes antibodies
Blood-Brain Barrier – A semi-permeable
cell layer around blood vessels in the brain
and spinal cord that prevents large
molecules, immune cells and potentially
damaging substances and disease-causing
organisms from passing out of the blood
stream into the central nervous system. A
break in the blood-brain barrier may
underlie the disease process in MS.
Contraction – A shortening of muscle
fibers and muscle that produce movement
around a joint.
Demyelination – A loss of myelin in the
white matter of the nervous system.
Exacerbation – The appearance of new
symptoms or the aggravation of old ones,
usually associated with inflammation and
demyelination in the brain or spinal cord.
Foot Drop – A condition of weakness in the
muscles of the foot and ankle, caused by
poor nerve conduction, which interferes with
a person’s ability to flex the ankle and walk
with a normal heel-toe pattern. The toes
touch the ground before the heel, causing the
person to trip or lose balance.
Multiple Sclerosis Resources of Central
New York, Inc. ®
PO Box 237
6743 Kinne Street
East Syracuse, New York 13057
Upcoming Events
Fish Bowl – March 21st
Utica Walk – March 22nd
Watertown Walk – April 12th
MS Dinner of Hope – April 28th