MS CHRONICLE
Volume 19, Issue 2
®
April 2017
A Publication of Multiple Sclerosis Resources of Central New York, Inc. ®
Message from the Executive Director:
Happy Spring!
I am happy to announce this year’s
honorees for the MS Dinner of Hope are:
Steve Fournier & Keybank
John Sindoni
Dave Longley
And our volunteer award will go to:
Ericka Braundel
Can it be that spring has finally sprung.
With a late season snow storm in March, it
is hard to believe all the snow is gone and
we are moving from shovels in the hallway
to brooms. What a great feeling!
March was a good month at MS Resources
with the Syracuse, Binghamton and Utica
Walks. Syracuse had a record amount of
pledge money received and Binghamton saw
growth in walkers and teams. We are still
awaiting results from Utica and Watertown.
If you would like an invitation, please call
the office as soon as possible, (315) 4384790. The event is Tuesday, April 25, 2017
at Traditions.
Annette will do a complete wrap up of all
the walks once Watertown has been
completed.
Please pay special attention to some
changes regarding some of the support
group meetings. There are time changes
and date changes on a few of the meetings.
There are again this year many educational
programs being held all around our service
area, so please take advantage of some of
these. Also back by popular demand will be
the Health Fair this fall. We had a great
turnout and will be hosting it again.
Look inside for:
►
Article from Susan Jarmel, PT
►
Women’s Weekend Info
►
Support Group Info
►
Smile.Amazon.com Info
►
Romano’s Point of View
MS Certified Physical Therapist –
Announcement
By Susan Jarmel, P.T.
Hello to everyone! Many of you know me
from my visits at your support groups or
through other MS events over the past few
years. I have had a great interest in caring
for people with the disease of MS as I feel
there is still so much that can be physically
accomplished and improved for each individual MS person exactly where they are
in their process. I have seen this happening
for many MS patients who have come to see
me for outpatient physical therapy
neurorehabilitation at my clinic, Jarmel PT. I
am pleased to announce that I recently
passed the MS Specialist Certification
examination! It required a great deal of
studying of all aspects related to MS starting
with the pathology , diagnosis, diagnostic
tools (such as Brain MRI), determination of
the type of MS a person has, to the multiple
medication choices available that many of
you are taking to delay relapses and
diminish the effects of a relapse. I am
pleased to say that Neuroplasticity was
affirmed related to MS meaning new neural
connections can develop and help a person
not only slow down the physical progression
but actually improve physically and
cognitively! In the examination, we were
responsible to understand not only the different medications and how they are administered but also the possible adverse
effects they may create. Much information
was also necessary to study related to the
many symptoms that develop from MS for
instance: fatique, spasticity, urinary difficulties, and cognitive issues just to
mention a few. We studied about how to
best address these symptoms such as appropriate medication choices, intervention of
physical/occupational therapy, and cognitive
therapy. Many of the questions on the exam
were presented in the format of different
patient case histories with MS course and
life situations. For example, this may be
related to a woman with MS who is planning
to have a child, the medication she is taking,
and the issues needing to be addressed if she
wants to breast feed her child! There were
questions related to specific conditions that
develop from MS that re-quire physical
therapy, occupational therapy and/or speech
pathology interventions. I was pleased to
see how affirmed the need for physical
therapy intervention including the outpatient
PT setting for neuro-rehabilitation was
encouraged. The positive effects of
monitored aerobic exercise was totally
affirmed! In addition, the roles of many
other professionals in-volved in helping the
MS person at any point in their process was
addressed such as nursing, dietary, psychological support , and life planning .
Overall, it was quite a ride in studying such
a widespread array of topics all related to
MS and to the MS individual! I learned so
much and am so glad I now am much more
educated in understanding the disease of MS
and what many of you have gone through
and may be going through now.
Contact Jarmel Physical Therapy at:
(315) 314-7834 – Office is located at 1000
E. Genesee St. Suite 202, Syracuse NY
13210.
MS Resources Support Group
Information
Interested in sharing experiences about MS,
come with family/friends to a meeting.
Syracuse Area2nd Tuesday of the month
Lincoln Middle School
1613 James St. Syracuse NY 13203
6:30PM-8:00PM
School Cafeteria
Contact: Angela McBride- (315) 876-2614
Madison County Area1st Monday of the month
Chittenango Center, Russell Street,
Chittenango – Conference Room
2:00PM-4:00PM Contact: Donna Denison
for more info at (315) 655-3517
Auburn/Cayuga County Area4th Tuesday of the month
Finger Lakes Mall, Rts. 5 & 20
Auburn, Community Room
Enter at Theater entrance. 7PM
Contact Susan Rusinko (315) 255-0982 or
Bernie Caruana at (315) 252-1183
Liverpool Group –Beginning in May –
moving to the 3rd Tuesday from 6pm8pm.
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
Vickery –(315) 409-9692 or Pat Apicella –
(315) 720-7141 or (315) 303-5648
Broome County Group –
4th Thursday of the month
Vestal Library, 320 Vestal Pkwy. Vestal NY
6:30PM Conference Rooms
Contact: Steve Yeager – (607) 785-7703 or
Rick Fiori – (607) 321-1489
MS Breakfast Buddies –
Meeting in the Binghamton area:
Contact Sue Maston: (570) 623-2302 for
times and locations.
Fairmount/Camillus Area 1st Wednesday of the month
Fairmount Community Library
Chapel Dr. Fairmount NY 13219
2PM – 3:30PM Community Room (time
change)
Contact: Ericka Braundel- (315) 391-6912
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!
Post on your face-book 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
choice.

AmazonSmile is the same Amazon
you know. Same products, same
prices, same service.
Amazon Cont’d

Support your charitable organization
by starting your shopping at
Smile.Amazon.com.
BE Sure you…
Select a Charity (This is where you would
type in Multiple Sclerosis Resources of
Central New York, Inc. )
Romano’s Point of View
Healers In Our Midst
Ahh, spring! Can any season be more welcome than this one in central New York? We
are ahead again in the Golden Snowball race
as of this writing, and that tells me that I’ve
endured enough snow, ice, wind and everything in between for this season. Even though
I was born and raised here and have experienced the oddity of having the weather
changes of three seasons in one day, I’m
definitely ready for all-things-spring. Time to
ditch the heavy clothing and outerwear and
get the spring-cleaning started.
That spring-cleaning begins with pausing for a
reflective self-assessment. It’s easier than
scrubbing the walls (as if I do that) and it is
much more helpful. It simply means that I will
take stock of what I want or need to change
and make a plan for how to pull it off. For instance, this winter I added a few pounds, but
it’s not the weight I really care about. The
pounds are just the evidence that I’ve been
sitting too much (which means my muscles
are weaker). It also signals that I’ve been
grabbing a bit too much dark chocolate from
the pantry when I’m bored and/or antsy. So,
my “plan” is to move more (take walks, less
facebook, find a new activity) and to get back
to fixing snacks (including dark chocolate)
that are ready to grab when I want. Also, since
my veggie intake has gone down the past
month or so (pure boredom of the same old
thing), it’s time to change my menu (as most
of us do quite naturally when seasons change).
I am learning to trust my body, listen to its
signals and supply what it needs to harness the
amazingness of healing. You can do the same,
of course!
What other kind of things can I do to help my
body, mind and spirit be at their best this
spring, even with the limitations put on them
by the label of MS? What kind of real-life
things are accessible, inexpensive and F-U-N?
I’ve made a little list for anyone who wants to
give this quality of life improvement
experiment a try.
1. Try a little shinrin-yoku! This is a Japanese
phrase for the act of “forest-bathing”, or
taking in the forest atmosphere. Researchers
have found that the act of being in the woods
brings down blood pressure and heart rate,
lowers blood cortisol (a hormone that goes up
under stress) and relaxes the nervous system.
Imagining that wonderful smell of piney
woods makes me relaxed right now. New
York has no shortage of forests to bathe in, so
find a place that suits you locally at:
www.onondagacountyparks.com or farther
from home at: www.inclusiverec.org Look at
www.dec.ny.gov to find more information as
well. When you are out and about enjoying
the beautiful outdoors in the months to come,
don’t forget to wear a tick repellant, even in
your own yard. I hate chemicals, but I have
seen the horrible nervous system impact on
some with lyme disease, including one of my
sweet daughters, so please get it and use it.
2. Ground yourself. Grounding, also called
earthing, is the rebellious act of putting your
bare feet on the ground without the insulation
of rubber or plastic soles. When was the last
time you did THAT? Research on this suggests that our disconnection with the earth’s
electrons may be a major contributor to our
body’s dysfunction. Can you believe it? We
are, after all, electric bodies. (anyone with a
pacemaker will attest to that). We are also
continually deluged with electromagnetic
frequencies from computers, heaters, hair
dryers, refrigerators, etc. While I don’t
understand the explanations of oscillating
electrons, I do understand the implications of
the results which include objective measurements of body functions showing decreased
inflammation, a balanced nervous system,
reduction in stress and pain, and many, many
other positive findings. If exposing your feet
to the natural world is not for you, there are
grounding sheets to buy for your bed, mats for
your chair and special shoes that facilitate the
electron transfer. See more at
www.ncbi.nlm.nih.org or any site that
explains grounding or earthing. A great
explanation can be found at
www.mercola.com as well. (Note: Dr.
Mercola is coming to Syracuse to speak in late
April at Natur-Tyme’s Health Extravaganza.
Contact www.natur-tyme.com for more info
and tickets.)
3. Listen to music that moves you. Change it
according to your mood. Go with its flow and
feel it. Groove to it and dance--in your seat or
on your feet. Sing it loud and expand fill your
lungs so you can belt out the chorus. (I bet
you’ll be smiling by the time you reach the
chorus.). If you play, or played, an instrument,
make it come alive again. It is said that the
very act of trying to play will start making
new brain connections. Look at all the good
that comes from music---it lifts the spirit,
carries you to other places, makes you move,
gives you the opportunity to do deep breath-
ing exercises and improves your brain’s networking ability. If you google Music therapy,
you will have quite a bit of reading material
telling you what you already know, as noted
above. Dig a little deeper and you will find
videos demonstrating the restored ability of a
stroke victim to speak, or my current favorite,
a video of a Parkinson’s patient walking and
dancing when the music is played. It’s amazing that our brains are affected in such a
powerful way that healing can occur. Lastly, I
recently came across something called
“Healing Tones”. Some call them Ancient
Tones and some call them God’s Healing
Frequencies. These are seven musical tones of
various frequencies that are said to promote
healing, relieve stress and restore sound sleep.
There are various websites for you to check
out, including www.wholetones.com. With
the amount of things we do not know about
the brain, MS, and healing, I’m thankful for
the possibilities that are out there for us to
find and try. Try is the operative word.
4. Sleep well. The time to deal with your sleep
disturbances is now. Your brain heals while
you sleep, so finding a way to rest well should
be a high priority. While you’re snoozing, the
unseen connections between nerve cells and
brain sections are strengthened and neurotransmitters are replenished. It’s the time
when your brain goes through a detox. It’s
like little janitors come in and clean up the
mess of the day, and your brain cells actually
shrink in size by more than half to facilitate
the debris removal! How crucial those jobs
are, and yet, we are a society that doesn’t
value sleep or sees needing it as a weakness.
We praise those who work non-stop and those
who burn the candle at both ends. Fatigue is
an MS’ers nightmare, and though many of us
say we can’t get a good night’s sleep, maybe
we can be honest with ourselves and try to
change that by instilling better habits. Many
of us (guilty) are addicted to technology for
far too long every day and night, and the blue
Romano Cont’d
light from screens in the evening can cause
the body to make less melatonin. (We need to
reach a certain level of melatonin to feel
sleepy.) Despite the rise of Ambien use, and
melatonin use, there seems to be a large contingent of people who are awake at 3 or 4am,
frantically trying to get back to sleep. Factor
in stress, medications, pain, and it’s a wonder
anyone sleeps at all! Sleep deprivation has
been shown to exacerbate issues of MS, so it’s
necessary for us to find a way to sleep soundly. Check your mattress and pillow for comfort. Keep your room cool. Block out light and
have white noise. Put away the technology.
Don’t watch scary or suspenseful moviesshows before bed. (Trust me, those episodes
of Taken have done me in more than once.)
There are all sorts of healing modalities for us
to use, right in plain sight. I didn’t get a
chance to talk about photo-biomodulation, but
I’ll save that for next time. Never give up
making things as good as can be for yourself.
Never.
Walk 2017
As of the writing of this issue of the
newsletter, all totals have not been finalized.
The Walk in Syracuse on March 5th was
very successful. The top ten highest
fundraisers were:
1st Matt Deno
2nd Kimberly Berger
3rd Susan Rusinko
4th Donna Denison
5th Ann Marie Fleet
6th Trisha Evans
7th Sue Dahl
8th Angela Easterly
9th Mike Fabery
10th Barb Conrad
And in Binghamton the top three highest
fundraisers were:
1st Betty Calkins
2nd Vicki Haus
3rd Robin Holcomb
Thank you to everyone who came out and
supported this event and to all the donors,
sponsors, our lunch patrons and
pharmaceutical companies, we could not do
this event without you. Thanks and we look
forward to 2018. Final totals for all 4 walks
will be in the next issue of the newsletter.
Women’s Weekend Get-Away Planned
The Annual Women’s Weekend Get-Away
is planned for June 9- 11, 2017 at the White
Eagle Conference Center in Hamilton NY.
For an application, please contact the office
at (315) 438-4790. Only returned applications will reserve your spot. Act fast,
this fills up rapidly. We will plan a fun,
educational and enjoyable weekend for you.
So call today and send back your completed
application to reserve your space.
We want to be sure you get a spot near the
bonfire to roast marshmallows…don’t delay,
call today.
Common Drug Questions Answered
Ever wondered if generic drugs were the
same as the brand or if you can stop taking a
medication on your own? Neurology Now
magazine answers a few of these common
questions in the February/March issue of the
magazine and I thought it was a great article
to add to our newsletter.
The answers come via Chelsea Kidwell,
MD, FAAN, professor of neurology at the
Univ of Arizona School of Medicine in
Tucson, AZ.
1. Are generics the same as brand
drugs? Yes. But it’s best to check
with your pharmacist of physician to
see if he or she has any concerns
about a particular drug you are taking.
There have been anecdotal reports of
problems with genetic epilepsy drugs,
for example, but recent scientific
studies have been reassuring.
2. Can I stop my mediation for a day on
my own? No, you should always
discuss medication changes with your
physician. Stopping suddenly could
cause a reaction, or a symptom that
had been under control, such as
seizures, could resume.
3. What do I do if I forget to take my
medication? Check with your
doctor’s office to see if you should
take the missed dose or wait for the
next scheduled time. At your next
doctor’s visit, discuss what to do
when you miss a dose. Write down
the information for each drug, and
keep it handy should this happen.
4. Given all the potential side effects of
medications, is it safer not to take the
drug? No, Doctors prescribe
medications to prevent long-term
damage from chronic diseases such as
hypertension or to manage symptoms
of conditions such as Parkinson’s
Disease, MS, epilepsy, etc. If you are
experiencing side effects, discuss
them with your doctor.
5. I feel fine, so why do I have to take my
medications? Some conditions, such
as high blood pressure, may not cause
acute symptoms but can lead to long-
term damage if not controlled. For
other diseases, medications may
reduce or eliminate symptoms-unless
you stop taking the medication, in
which case the symptoms could return
and cause damage or even death in
some cases.
The best advice for you comes from
your doctor or trusted pharmacist.
Always consult with them when
facing concerns about medications.
For a copy of the Medication Management
article featured in Neurology Now, call the
Office.
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
Call us if you need us…..
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.
Multiple Sclerosis Resources of Central
New York, Inc. ®
PO Box 237
6743 Kinne Street
East Syracuse, New York 13057