Summer 2011 - Multiple Sclerosis Society of Canada

Volume 38 • Issue 2
couples: loving
and living with mS 3
4
mS research:
illness and
relationship
dynamics
CANADA
Summer 2011
7
mS youth:
Someonelikeme.ca
launches
mSSociety.ca

mS canada Summer 2011 2
Message from yves
Almost thirty years
ago this fall, I met
Eve in junior college.
We have been friends
since those youthful
days as students. At the
time, I did not know the
role I would play with
the MS Society of Canada, nor did I know
that my good friend Eve would be diagnosed
with multiple sclerosis in 2000. In my
personal fundraising for the MS Walk and in
all that I do at the MS Society, she is a source
of energy for me and a constant reminder
of the importance of our commitment to a
future free of MS.
Yves savoie
In this edition of MS Canada, you will read a
lot about relationships and how they factor in
to all areas of life with MS. You will hear the
story of a RONA MS Bike Tour team of over
50 family and friends, many of whom ride
each summer for their mother, sister, aunt
On the cover
Photo courtesy of Gary Neilson
From left to right: Kaj and Sharon Kristiensen,
Greg and Rosella Wright, Sheryl and Jeff Owens
Ms Canada, summer 2011
Published by the Multiple Sclerosis Society of Canada
175 Bloor St. E., Suite 700, Toronto ON M4W 3R8
Tel: (416) 922-6065 • Fax: (416) 922-7538
Toll free: 1-866-922-6065 • Website: mssociety.ca/mscanada
Charitable Registration no. 10774 6174 RR0001
Our Mission: To be a leader in finding a cure for multiple sclerosis
and enabling people affected by MS to enhance their quality of life.
President and chief executive officer: Yves Savoie
Editor-in-chief: Jody Fiorino
Managing editor: Tiffany Regaudie
ISSN 0315-1131
Canadian Publications Mail Product
Sales Agreement No. 40063383
and friend who has MS. You will learn about
the work to transform into reality proposals
discussed during last spring’s federal
election to improve supports and income for
caregivers, and you will have the opportunity
to preview SomeoneLikeMe.ca, a new webbased
initiative intended to build a safe and
nurturing community of young people who
have been touched by MS.
One in two Canadians knows someone whose
life has been impacted by MS. Whether you
have been personally touched by MS or
know someone who has, it is through these
relationships that we draw strength as we
continue in our efforts to end MS. ■
Yves Savoie
President and chief executive officer
President, Ontario Division
We want to
publish your
writing! MS Canada
is calling for article and
story submissions from
our readers. If you have
something you’d like to
share with the MS
community, please email
mscanada@mssociety.ca

Government moves forward with clinical trials of ccSVi
On June 29, 2011 the federal government
announced they will fund Phase I/II
level clinical trials on chronic cerebrospinal
venous insufficiency (CCSVI) and MS. The
MS Society has committed $1 million
towards the financial cost of a clinical
trial and continues to encourage other
jurisdictions to contribute as well.
The unanimous recommendation to move
forward with clinical trials was based upon a
If given the
opportunity, multiple
Heather and
Gimi Mior, Kate sclerosis can consume
and Don Dufour a couple’s life. In
candid conversations,
six women and six men from the
South Vancouver Island Chapter in BC
described how they are able to combat
the stress of living with MS.
Every couple emphasized the
importance of effective communication
skills. Talking about concerns and
listening to each other is essential
for solving problems. All agreed that
quickly addressing issues, avoiding
blame and agreeing to disagree can
lessen conflict.
Mutual respect was also highlighted
during the conversations. Just because
one person has a disability doesn’t
meeting of CIHR’s scientific expert working
group, wherein the seven studies funded
by the MS Society and National MS Society
were highlighted as progressing well.
At press time, the studies will be at their
halfway point and one-year interim progress
reports will be available in the coming weeks
and will be posted on mssociety.ca and
ccsvi.ca ■
couples: Loving and living with MS
Feature writer: Nancy Chamberlayne, M.Ed.
mean that person is “less than” in
the relationship. Living one day at
a time, keeping things simple and
acknowledging the positive assists
each couple in focusing on what they
can do, not what they can’t.
What makes these strategies so
effective is that each couple looks
beyond the MS to see the person, not
the disease. They believe that MS is
just one small part of the relationship.
Thanks to Sharon and Kaj Kristiensen,
Heather and Gimi Mior, Greg and
Rosella Wright, Sheryl and Jeff Owens,
Don and Kate Dufour and Gary Neilson
for their contributions to this article.
Read Nancy’s full article at
mssociety.ca/CouplesLoving
andLivingwithMs ■
mS canada Summer 2011 3

MS Canada Summer 2011 4
mS research: Illness and relationship dynamics
Dr. Tae (stacey) Hart,
Multiple sclerosis
scientific Research
Foundation pilot
grant recipient
areas of closeness and intimacy?
Many couples
who are newly
affected by MS are
young and early in
their relationships.
After a diagnosis,
many ask themselves
how the unpredictable
symptoms of MS will
impact the way they
relate to their partner.
How will the added
caregiver-patient
dynamic affect other
In 2010, Dr. Tae (Stacey) Hart of Ryerson
University conducted a study funded by a pilot
election outcome:
Help for caregivers
Kent Pollard of Saskatoon followed the recent
federal election campaign with an eye on
promises made to assist caregivers. He has been
the main caregiver for his wife Victoria for more
than 10 years.
The Conservative, Liberal and New Democratic
parties all promised help to caregivers. With the
Conservative win and the federal government
budget officially tabled this past June, it is
confirmed that there will be a family caregiver tax
credit implemented in 2012. For the first time,
spouses will be able to claim a tax credit for the
caregiving they provide. The MS Society has been
advocating for this change for a number of years.
“While this tax credit will help me a bit, it is
important to note that it won’t help people who
have low incomes, and they are the ones who
need help the most,” Pollard said, adding that
the government should make the new caregiver
tax credit and the existing disability tax credit
refundable. The MS Society agrees and will
continue to advocate for these changes.
For more information visit mssociety.ca/advocacy ■
grant from the Multiple Sclerosis Scientific
Research Foundation that looks to answer these
questions and more. One hundred and seven
couples recruited through the St. Michael’s
Hospital MS Clinic completed online surveys.
Interviews were also conducted to gain indepth
information about the impact of MS on
relationships and couples’ strategies to cope with
the disease.
Dr. Hart stated, “Overall, our preliminary results
show that many couples struggle with the
effects of MS-related fatigue. We hope to use
our findings to create a program that can be
conducted over the telephone or the internet to
help couples find ways to manage MS-related
symptoms.” Dr. Hart is currently analyzing the
data and continuing to collect information from
the interviews.
For more information on MS research,
visit mssociety.ca/research ■
A&W Cruisin’ in’
for a Cause Day.
Help end MS.
And your hunger, while you’re at it.
Stop by A&W on August 25 th and $1 from every Teen Burger
sold will go to the MS Society of Canada. So roll on in with
the whole family. Because helping a great cause is just in
good taste. See you there!
Text MS to 45678 to make a $5 donation
to the MS Society of Canada.
August
25 th
Proud Partner of
TM trade-mark of A&W Trade Marks Limited Partnership, used under licence

Three brothers, one mountain and an mS climb of a lifetime
Ron Vermeulen is no stranger to ambition:
after participating in the RONA MS Bike
Tour for five years, he decided to take the MS
Climb challenge in honour of two friends who
live with MS.
In 2010, Ron and his brothers, Brian and Gary,
and Ron’s colleague, Brian Goodman, set out to
climb Mount Kilimanjaro to raise funds for the
MS Society – and they did so in the amount of
$87,000, almost exclusively through personal
contacts. “Our goal became infectious,” Ron
says. “People heard our story and wanted to
get involved.” Now closer to his brothers than
before, Ron crossed Mount Kilimanjaro off his
bucket list and has made a huge impact on
those affected by MS.
To find out more about MS Climb
visit msclimb.ca ■
CIBC makes a difference
CIBC supports causes that matter to their
clients, employees and communities.
They aim to make a difference through
corporate donations, sponsorships and the
volunteer spirit of their employees.
Through valuable contributions towards
Canadians living with MS, the MS Society
is pleased to report that CIBC is making a
difference. For over a decade, CIBC has been
a significant supporter of people whose lives
have been touched by MS through charitable
donations and sponsorships.
Recently, CIBC made a generous gift of
$500,000 towards the endMS campaign.
Gary, Ron and Brian Vermeulen
at the summit of Mount Kilimanjaro
With this contribution CIBC is helping to secure
the next generation of MS researchers through
the endMS Research and Training Network. The
Network’s goal is to accelerate discovery in the
MS field by attracting, training and retaining
trainees and researchers who will commit their
careers to ending MS.
“CIBC is proud to support the Multiple Sclerosis
Society of Canada and most recently the
endMS Research and Training Network as their
trainees and researchers work collaboratively
with the ultimate goal of ending MS,” said
Sharon Mathers, senior vice president,
communications & public affairs, CIBC. ■
mS canada Summer 2011 5

MS Canada Summer 2011 6
team roadkill takes RONA MS Bike Tour personally
Members of Team Roadkill in Nova scotia
Made up of friends and family from across
Canada and the U.S., the 55 members
and counting of RONA MS Bike Tour Team
Roadkill are riding in Nova Scotia for one
reason: to support the people they love in
their fight against MS. Sherry Mullane is one
of those people.
Did you miss it?
The Women & Wellness:
Achieving Wellness
while Living with Ms
seminar took place on
May 28 in Montreal, and
the transcript will be
available for download
at mssociety.ca/
womenandwellness
It is intended for women of
all ages who want to learn
more on how to maximize
their health, well-being
and quality of life.
Expanding considerably since 2005, Team
Roadkill has set a goal to raise $75,000 for
this year’s bike tour. Embodying the spirit of
personal investment in their effort to end MS,
Team Roadkill injects fun into the initiative: they
have organized curling and golf tournaments
to raise funds, and every year Steve Mullane,
Sherry’s brother-in-law, dresses up as Elvis to
mix drinks for members when they cross the
finish line.
“I once asked Steve why he puts so much
energy into raising funds for MS,” says Sherry
Mullane, who was diagnosed with MS almost
four years ago. “He said it was because he knew
the team’s efforts could help find a cure for MS.”
For more information on TeamMS,
visit teamMs.ca ■
22 TOURS ACROSS CANADA
For those affected by multiple
sclerosis, your fundraising and
participation can be life-changing.
msbiketours.ca
msbiketours.ca
msbiketours.ca
1.800.268.7582

Finding someone…just like me
Members of the Ms youth community
at the Ms summer camp
diagnosis of MS can often cause
A feelings of isolation—especially for
a teen or young adult who is trying to fit
in and feel understood. In response to
this, the MS Society of Canada launched
SomeoneLikeMe.ca, a new online
community for youth whose lives are
impacted by MS.
SomeoneLikeMe.ca is a place for young people
to get involved, get informed and take action.
Visitors to the site can build relationships with
other youth whose lives have been touched
Q: I’ve noticed a lot of changes in my sexuality
since my diagnosis with MS. Can you explain
why this is happening?
A: A person’s sexuality is made up of a complex
set of feelings, responses and attitudes, all of
which can be affected in a variety of ways by MS.
In fact, approximately 73 per cent of people with
MS report sexual changes of one kind or another.
The primary changes are caused by the disease
process itself – in other words, by lesions in
the central nervous system that affect sexual
responses, such as a decrease in sexual arousal
by MS, and they can learn about available
resources offered specifically to youth who
are living with a diagnosis of MS or know
someone who is.
“It is tough to be young and even tougher
to be a young person forced to deal with
issues beyond your age … now I know
someone who understands me, someone like
me, is just a message away,” commented a
youth member of the MS community about
the interactive resource.
Thanks to the longtime support of Aaron
Solowoniuk, drummer for Billy Talent, and
Teva Canada Innovation, the MS Society was
able to bring this online community to life.
Find out how you can get involved
with this exciting initiative at
someonelikeme.ca/get-involved ■
and sensory changes in the genital area.
Symptoms such as fatigue and weakness can
also interfere with a person’s interest in, and
enjoyment of, sexual activity. Finally, some
people with MS lose self-confidence and begin
questioning their desirability.
Your doctor can work with you to manage any
symptoms or medications that are interfering
with sexual activity.
For the complete response to this
and other MS-related questions visit
msanswers.ca ■
7 MS Canada Summer 2011

What’s on this season Note: Please visit
mssociety.ca\governance
August
on December 18
6 - 28 RONA MS Bike Tours
msbiketours.ca
13 - 19 MS Summer Camp
mssociety.ca/camp
25 A&W Cruisin’ for a Cause
th , 2011 for an
update on the MS Society’s
2011 annual general meeting
(AGM) and draft minutes of
this meeting, which will be
approved at the 2012 AGM.
september
10 - 18 RONA MS Bike Tours
msbiketours.ca
11 MS Walks
mswalks.ca
september–June
MS Read-A-Thon
msreadathon.ca
October
20 endMS gala
endms.ca
CANADA
Share your comments:
mscanada@mssociety.ca
Fall 2007
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info@mssociety.ca. To view this publication
online, visit mssociety.ca/mscanada
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