MS CHRONICLE
Volume 18, Issue 4
®
August 2016
A Publication of Multiple Sclerosis Resources of Central New York, Inc. ®
Message from the Executive Director:
We would like to thank everyone who came
out to the Paint Night and the Syracuse
Nationals. We are grateful for your support.
Core temperatures can rise quickly and this
can have quite an adverse affect on persons
with MS. Call the office for cooling advice.
In this issue you will read about a new Pilot
Program entitled, “Nettie in the
Neighborhood”. This is fully explained
inside the newsletter and we will kick it off
in September. Annette will come to a place
of your picking on a day and time
convenient for both of you and have an old
fashioned face to face chat. Similar to a
fireside chat with diplomats and presidents,
all conversations are HIPA protected and it
is an opportunity to connect to the client and
the community. Call her to get scheduled.
She will visit 2 neighborhoods a month.
Have a great rest of the summer…
Also please take some time to read the
Today’s Options information. We are so
hopeful that Donna Denison will be
recognized as a Today’s Options Champion
and the agency will receive the $10,000
prize!
If you are interested in the Alex Bay Golf
Tournament, please call the Office and we
will send you all the relevant information.
The date is August 29, 2016 at the Thousand
Islands Golf & Country Club.
We know that the weather has been quite hot
and we encourage you to stay in air
conditioning and also stay well hydrated.
Look inside for:
►
Walking – Part 2
►
New - “Nettie in the Neighborhood”
►
A Taste at the Mansion
►
Support Group Info
►
Smile.Amazon.com Info
►
Romano’s Point of View – On hiatus
What's the Connection Between Multiple
Sclerosis and the JC Virus?
Written by Lori Smith BSN MSN CRNP
Reviewed by Deborah Weatherspoon, PhD,
MSN, CRNA, COI
The John Cunningham Virus, also known
as the JC virus, is a typically harmless
virus.
It is found in the blood samples of 70 to 90
percent of people worldwide.
Children with JC virus often show no symptoms. The JC virus can also be found in the
body much later in life without complications. It is commonly found in the kidneys, bone marrow, and some body tissues.
According to an article published in the
World Journal of Neuroscience, the virus
"remains on renal tissue and can be
eliminated in urine in 40-75 percent of
individuals around the age of 30."
JC virus is typically a harmless infection.
However, some people with the virus are at
a high risk of developing a potentially lifethreatening condition called progressive
multifocal leukoencephalopathy (PML).
Multiple sclerosis and the JC virus
In PML, the protective coating of the nerve
cells breaks down, causing damage to the
central nervous system.
The risk of PML is higher in people who
take certain medications to treat multiple
sclerosis.
The risk for PML increases in those whose
immune system is depressed, such as with
an HIV infection or receiving certain medications to treat autoimmune conditions such
as multiple sclerosis (MS). The JC virus that
is dormant in the body can reactivate and
cause infection.
This reactivation of the JC virus and development of incurable PML can lead to
severe physical effects. Complications
include dementia, blindness, paralysis, and
seizures.
Up to 50 percent of those diagnosed with
PML die within the first few months receiving a diagnosis.
Ramírez and Palacio explain in an article
published in the World Journal of Neuroscience, that PML has three stages:
•
Stage 1: Initial infection with the JC
virus without symptoms
•
Stage 2: Inactive JC virus remains
present in the urinary tract, bone
marrow, tonsils, lungs, spleen, and gut
tissue
•
Stage 3: Active virus spreading
toward the brain and central nervous
system
Why are people with multiple sclerosis at
risk for developing PML?
People at risk for developing PML include:
•
Patients whose immune systems are
impaired due to HIV or treatment
with certain medications
•
Patients with autoimmune diseases
such as multiple sclerosis (MS) that
are treated with drugs that depress the
immune system
Medications linked with PML include:
•
Cyclophosphamide
•
Corticosteroids
•
Mycophenolate mofetil
•
Monoclonal antibodies including
natalizumab (Tysabri), rituximab
(Mabthera) and alemtuzumab
(MabCampath)
For those with MS taking the medication
natalizumab, the risks for reactivation of the
JC virus and progression to PML are
elevated.
A study published in the New England
Journal of Medicine evaluated 19 patients
with MS receiving treatment with
natalizumab. The researchers found a rise in
JC virus urine levels after starting treatment
with the drug. Virus levels rose from 19 percent to 63 percent after 12 months of using
natalizumab.
After a further 6 months, blood samples
further revealed that the virus had entered
the blood cells of 60 percent of the patients.
The researchers also found that the body's
immune response to the JC virus had fallen
after 12 months of treatment with
natalizumab.
They reported that among many of the MS
patients using the drug, the virus that was
found in their urine or blood samples had
already undergone changes linked with the
virus' ability to reach the brain and cause
PML.
None of the study participants, however,
developed PML brain lesions.
Symptoms of PML
Infection with the JC virus can cause cells to
die. The virus can also break down the protective coating of the nerve cells, affecting
the white matter of the brain.
PML is an aggressive, potentially fatal
disease caused by a brain infection by the JC
virus. Symptoms of PML may be quick and
evolve over a few weeks. They may also
progress slowly, developing over a period of
months, and can result in death. Currently,
there is no cure for PML.
Symptoms typically include:
•
Clumsiness
•
Increasing weakness
•
Paralysis or lack of coordination
•
Changes in vision such as blindness
•
Speech impairments
•
Personality and behavioral changes
•
Seizures
Diagnosis and treatment of PML
PML can be diagnosed using various
methods. These include:
•
Physical examination
•
Magnetic resonance imaging (MRI)
of the brain
•
Examining the spinal fluid with a
lumbar puncture to test for the
presence of the JC virus
A diagnosis of PML cannot be entirely ruled
out with a negative spinal fluid test, which
can happen in the early stages of the disease.
Another way to diagnose PML is by finding
JC virus DNA or proteins after a brain
biopsy. While this test is considered the
"gold standard" in PML diagnosis, it is
rarely used due to the risks involved.
The symptoms of a relapse of MS can
sometimes appear to be the symptoms of
PML. Patients with MS should talk about
their symptoms with a healthcare team to
fully evaluate the situation.
PML Cont’d
Once a doctor has diagnosed PML, treatment may include the use of plasma exchange to remove the medications causing
the condition. Supportive care can also help.
Currently, there is no effective treatment for
PML and no virus-specific antiviral medications exist. The U.S. Food and Drug
Administration may give permission for
certain experimental medications to be used
in special circumstances.
and smooth steps. The spasticity in ones leg
muscles can cause loss of flexibility thereby
impeding a good gait and weakness on
either side will cause you to compensate for
loss of strength. You may have foot drop,
drag a toe, hip hike, vaulting motion or trunk
leaning.
At times, a condition called immune
reconstitution inflammatory syndrome
(IRIS) can occur. If this happens, drugs
known as corticosteroids may be used in
patients who do not have HIV.
If you experience any of these issues in walking ability, you need to again, open the discussion with your neurologist or nurse.
They will evaluate you and determine which
intervention may help. This is an important
talk to have with your doctor so they can
better understand how your MS may be
affecting you.
People with MS should speak with their
healthcare team to discuss their personal
risks for developing PML.
For more information on Walking and
medicine to assist this issue, please contact
the Office at (315) 438-4790.
Walking – Part 2
Our Abilities and Our Disabilities
In the June issue of the newsletter we had
our first article about walking. The definition of the word and all the meanings
associated with walking. In this issue we
are going to further explore factors that may
contribute to issues with walking.
A person with MS may experience loss of
balance, numbness, fatigue, weakness and
spasticity which may be factors in their
walking.
In loss of balance a person may begin to
sway to one side, or have a really unsteady
step. In numbness, there may be mild to
severe loss of feeling in the feet which
makes it hard to know if you are feeling the
floor or another location. We all know that
fatigue can really cause havoc and it most
certainly can affect your stamina, endurance
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
No Meeting in August
Madison County Area-
1st Monday of the month
Chittenango Center, Russell Street,
Chittenango – Conference Room
2:00PM-4:00PM
Auburn/Cayuga County Area4th Tuesday of the month
Finger Lakes Mall, Rts. 5 & 20
Auburn, Community Room
Enter at Theater entrance. 7PM
No Meeting in August
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 – 720-7141 or 303-5648
No Meeting in August
Broome County Group –
4th Thursday of the month
Vestal Library, 320 Vestal Pkwy. Vestal NY
6:30PM Conference Rooms
Contact: Steve – 607-785-7703 or Rick –
607-321-1489
on-line so spread the word and don’t forget
us during your Chris-tmas 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 Cont’d
• 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.
•
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
Donna is taking a short break and will return
in the Fall.
MS Breakfast Buddies –
Meeting in the Binghamton area:
Contact Sue: (570) 623-2302 for times and
locations.
Amazon.com Offers Incentives to Charity
Shopping Passes For Sale
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
SAVE 25% all day, all weekend at Macy’s
Stores across the county from August 26 –
August 28 for a $5 donation to MS
Resources. That’s right, your $5 will get
you a Shop for a Cause pass. Simply mail in
a check or stop by the office and purchase
your passes. There is also an entry form to
complete for a chance at a $500 Macy’s Gift
Macy’s Cont’d
Card. It’s worth it just to enter your name
into the drawing.
Ante Up!
Bridie Manor Poker Walk Returns
The 5th Annual Bridie Manor Poker Walk
will be held on Saturday, September 10,
2016 at Bridie Manor in Oswego NY. The
event is $10 which includes the Poker Walk
materials, picnic style lunch at Bridie Manor
and door prizes. We will also have auction
items and a 50/50 drawing. The event starts
with check in at 9:30AM. You will then
walk to several locations throughout
downtown Oswego retrieving a playing card
for the “Best Hand”. Upon your return a
volunteer will verify your hand on a Poker
Tally Sheet and you can then enjoy lunch
and the rest of the day. For more
information call us at (315) 438-4790, or
simply send in a check or money order for
$10 and we will send you your ticket.
suggestions: gift cards, books, arts/crafts,
scratch off lottery tickets, etc.
Thanking you in advance.
The 3rd Annual “A Taste at the Mansion”
will be held on Friday, September 30, 2016
from 5:30PM – 8:30PM at the Barnes –
Hickock Mansion, 930 James St., Syracuse.
Cost is $55 which includes food/wine. We
will have auction items to bid on and much
more. Wine will be provided by local
wineries. For ticket information, please call
(315) 438-4790. In the August newsletter
we will have more details.
Men’s Weekend Slated for September
Would you like to donate a door prize or an
auction item? We would be so appreciative
of any items, just let us know! See you at
Bridie Manor…and let’s hope our response
leads to a Full House. Top Hands will
receive prizes!
If you would like to donate an item to any of
our upcoming events we have a few
Join us on September 23, 24 & 25, 2016
for the Annual Mens’s Weekend GetAway at the White Eagle Conference
Center in Hamilton NY.
Cost is $135 which includes all lodging,
meals and activity related materials. For
an application, please call the office at
(315) 438-4790.
“Nettie in the Neighborhood”
This is a new project that Annette is taking
on. It works like this if you are interested:
(we are first going to Pilot this project in the
Syracuse area and see how it works)
1. Call Annette and let her know
you would like her to visit your
neighborhood.
2. You pick a location in the
neighborhood to meet (can be a
library, restaurant, your hair
salon, home etc.
3. Confirm date and time with
Annette.
4. We will just chat about
anything you would like, how
you are doing, etc. All
discussions are confidential.
5. Time allotted will be 1- 1/2hr.
here. Please help us make a win-win
situation!
For voting:
www.TodaysOptionsChampions.com
RulesYou can vote once a day
Voters are identified by device, for example
if you have one computer, you can vote once
from it, however, if you have a tablet device,
smart phone and computer you can vote
once a day from each device
Begin voting at 12:01am EST on July 25th
and end at 12:00am EST on August 25th.
Votes will be validated by automated third
party controls.
Thanks Everyone – Spread the word near
and far!
Newsletter is written and edited by:
Annette Simiele
Call (315) 438-4790/1-800-975-2404
Client – Community - Caring
Fax (315) 438-4704
Today’s Options Champions
E-mail msrofcny@msrofcny.org
Our very own Donna Denison from
Cazenovia has been selected as a finalist as a
Today’s Options Champion for her work
with the seniors in her community, church
and with MS Resources as a Support Group
Leader with over 85% of her group comprised of seniors. Along with the other
finalists, there is a voting process and the
person with the most votes will win the
competition and their nominating organization, which was MS Resources will
receive $10,000. So we need your help in
the voting. You can call us for more details,
though I am going to put the information
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