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couples: loving and living with mS 3
Fall 2007
CANADA
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A lmost 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.
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
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 web-based 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
Message from yves
Yves s
avoie
Ms Canada, summer 2011
Published by the Multiple Sclerosis Society of Canada175 Bloor St. E., Suite 700, Toronto ON M4W 3R8
Tel: (416) 922-6065 • Fax: (416) 922-7538Toll 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 SavoieEditor-in-chief: Jody Fiorino
Managing editor: Tiffany Regaudie ISSN 0315-1131
Canadian Publications Mail ProductSales Agreement No. 40063383
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
On the coverPhoto courtesy of Gary Neilson
From left to right: Kaj and Sharon Kristiensen, Greg and Rosella Wright, Sheryl and Jeff Owens
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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
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 ■
Government moves forward with clinical trials of ccSVi
I f given the opportunity, multiple
sclerosis can consume 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
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 ■
couples: L ving and l ving with MS Feature writer: Nancy Chamberlayne, M.Ed.
Heather and Gimi Mior, Kate and Don Dufour
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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
areas of closeness and intimacy?
In 2010, Dr. Tae (Stacey) Hart of Ryerson University conducted a study funded by a pilot
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 in-depth 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 ■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 ■
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Dr. Tae (stacey) Hart, Multiple sclerosis scientific Research Foundation pilot grant recipient
mS research: Illness and relationship dynamics
Stop by A&W on August 25th 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!
TM trade-mark of A&W Trade Marks Limited Partnership, used under licence
A&W Cruisin’for a Cause Day.
Help end MS. And your hunger, while you’re at it.
iiinnnnnn’’’’
August25th
Text MS to 45678 to make a $5 donation to the MS Society of Canada.
Proud Partner of
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mS research: Illness and relationship dynamics
C IBC 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.
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. ■
CIBC makes a difference
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 ■
Gary, Ron and Brian Vermeulen at the summit of Mount Kilimanjaro
Three brothers, one mountain and an mS climb of a lifetime
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.
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 ■
team roadkill takes RONA MS Bike Tour personallyM
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Members of Team Roadkill in Nova scotia
22 TOURS ACROSS CANADA
msbiketours.ca 1.800.268.7582
msbiketours.camsbiketours.ca
For those affected by multiple sclerosis, your fundraising and participation can be life-changing.
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.
A diagnosis of MS can often cause 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
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 ■
Finding someone…just like me
Members of the Ms youth community at the Ms summer camp
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
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 ■
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CANADAShare your comments:
Update your mailing address or subscription preferences by contacting your division office. Division contact information can be found at
mssociety.ca or call 1-800-268-7582 or email [email protected]. To view this publication
online, visit mssociety.ca/mscanada
RETURN UNDELIVERABLE CANADIAN ADDRESSES TO:
Multiple Sclerosis Society of Canada700 – 175 Bloor St. E.Toronto, ON M4W 3R8
PublicationsMail Agreement
# 40063383
August6 - 28 RONA MS Bike Tours msbiketours.ca
13 - 19 MS Summer Camp mssociety.ca/camp
25 A&W Cruisin’ for a Cause
september10 - 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
A9R1460635.pdf 1 7/19/11 3:56 AM
What’s on this season Note: Please visit
mssociety.ca\governance
on December 18th, 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.
attention! MS Canada is
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