Issue 5, Spring 2015
May is MS Awareness Month.
MS MY STORY
World MS Day is on May 27. The 2015 campaign theme is access: access to
diagnosis, treatment and support; access to buildings, travel and leisure facilities; and access to education, training and employment.
The Multiple Sclerosis International Federation launched an online campaign
about celebrating the ways people all over the world are breaking down the
barriers to living with MS. People are invited to share messages about a person, organization or event that has made a difference to those people with
MS. Messages can be shared on social media by using #strongerthanMS, and
these will be featured on the World MS Day website and across social media
on May 27.
To mark World MS Day, the MS Society of Canada will be hosting our annual
MS Research Town Hall on Wednesday,
May 27 from 4:30-5:30pm PST.
https://vekeo.com/event/ms-society-canada-05272015/
Dr. Mark Freedman, Dr. Ruth Ann Marrie will be in conversation with the
CBC Radio’s Bob McDonald (Quirks and Quarks).
IN THIS ISSUE
Check out the website or #msmystory
to watch posted videos and find out
how you can share your story.
reveals just how prevalent multiple sclerosis is in Canada and
that together, we need to work to find a cure.
4 You’re going to see it on your television screens, in print, at
movie theaters and on billboards across Canada. Check us out
5 online too at endMS.ca to learn more about Flee or Fight and
6 to get a better understanding of why MS is so widespread in
Canada.
3\4
Peer Support and Self Help Groups
Collaborative Yukon Outreach/ CSIL
MS Walk/ Shawn MacDonald
Caregivers/Research/MS Camp
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Thank you to the RBC Foundation for their financial
support of outreach services in BC and the Yukon Territories.
The MS Society acknowledges the financial assistance of
the Province of British Columbia.
Debbie Irwin, Community Services Coordinator
MS Society of Canada, BC & Yukon Division
Email: [email protected]
Toll Free : BC 1-800-268-7582 Ext 7231
Yukon 1-866-991-0577
It provides a forum to where you can
participate in discussion about daily
challenges that MS present, discuss issues and feelings, in a safe and comfortable age-appropriate environment.
New to this forum is MS My Story. It is a
collection of experiences, thoughts, feelings and advice on living with MS as a
young person.
2 Flee or Fight is the MS Society of Canada’s new campaign that
In Memorium
Newsletter Contact:
Someonelikeme.ca is a online community developed to bring together youth
and young adults who are living with or
have a loved one with MS.
Join the Fight Against MS!
Personal Reflection
Heroes Among Us
http://mystory.someonelikeme.ca/
We are asking you to get involved too. Because there are more
shocking facts about MS:
 3:1 ratio of MS in women
compared to men
 Up to 80% of Canadians with
MS are unemployed
 Canadians as young as 2
years old are developing MS
Check out some personal stories
of how others are taking up the
fight.
http://endms.ca/personal-fight-stories/
Personal Reflections
Travelling Chairman, by Riun Blackwell
I felt it was with courage that I was able to break free of the home
bound habits I had fallen into with my condition and conveyance in a
wheelchair. I have MS and experienced physical decline for a decade;
in a wheelchair for a year and a half.
Investigating the continuing education brochure from our local Quest
University I was inspired to read a description of Life Writing. It contrasted despair and generativity which struck me as my current inner
conflict. I relate to my despair as this isolating personal passage associated with negative judgmental perspectives on my disability. It struck
me that the contrasting concept of generativity could be an out going
positive non judgmental impulse.
The lessons of my life within these physical restrictions can be contrasted with a sense of broadening my
inner life. The course at Quest served to stimulate my writing on topic.
This sense of rolling out into a new worldview propelled me to plan a trip to Victoria. My cousin lives in a
Kinsmen complex and I was able to get the guest room at a great price.
We met in downtown Vancouver and traveled on transit and ferry to Victoria. That afternoon trip was an
introduction to disabled transit, and my cousin was a cheerful guide and assistant.
The whole trip was a tapestry of events; from a chance meeting on the bus to winning a couple of games of
crib playing by “Jailhouse Rules”. I was able to go for a swim, visit 2 neurological specific gyms and had a
neuro physio assessment. I was a guest at my cousin’s church Fairfield United, helped out with Christmas
preparation at the Odd Fellows Hall and heard the angelic voices of the Victoria Choral Society in practice.
We went to the Victoria Art Gallery on the free day; touring with two lovely ladies, my cousin’s sister and an
old friend.
Without exception I was shown courtesy and consideration by everyone I encountered especially my very
patient host. Our final visit was to my pregnant niece in Duncan who named her first boy, in my honour.
When my cousin dropped me off in Nanaimo I trust he felt the glow of accomplishment. We had a very interesting week with happy memories and no grief.
On my ferry ride heading home it struck me what a lucky guy I am. I had ventured away from home for 8
days in my wheelchair giving me a happy adventure and my wife a week of respite. My heart pulsed with
gratitude for my wife and cousin and their dedication to me.
People in Pain Network
Ceridian Cares
Ceridian Cares has a funding program to support
People in Pain Network (PIPN) is a non-profit organization
individuals and families in need. Their mission is to
whose vision is to connect people and their families for
improve quality of life by providing financial
education, support and solutions, to help them manage
assistance
to individuals and families that need it
their persistent pain. Heather Divine is the founder and
most, for things like medical equipment, special
CEO (PIPN) and has worked to help establish pain managetherapies, home adaptations , as well as food,
ment peer support groups throughout BC. You can also
clothing, etc for families in need.
sign up for the People in Pain Network weekly Newspaper,
We have recently had a client who was successful in
for upcoming events, and more.
getting
funding to help with some needs in her home.
For more information about these support groups and
education please visit their website:
For more information check out their website at:
http://www.pipain.com/
http://www.ceridiancares.ca
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Heroes Among Us
Each year the MS Society of Canada and the BC & Yukon Division put out a call for nominations for outstanding groups, organizations and individuals to recognize with Awards and Certificates of Merit. This year we
are fortunate to have 2 award recipients from the unchaptered areas of BC & Yukon; Ken Chubb & the
Quesnel Self Help Group We also want to recognize Karen McGregor, a hero that we lost this year.
Ken Chubb, Recipient of the BC & Yukon Division Presidents Award.
Ken has been a support to the MS Society and people living with MS in the Creston
area for over 25 years. Before moving to Creston, he was involved with the Kelowna
MS Chapter for 12 years. Ken spent a number of years as a Board Member for the
BC & Yukon Division, he has been the main contact for the Creston MS Self-help
group for many years, and is currently a member of the BC & Yukon Client Services
Committee.
Ken has been instrumental in connecting clients with the MS Society to assist with
advocacy, support and information, as well as to assist with navigation of the health
care system and access to the MS Clinic for diagnosis. Ken has liaised with the client services staff, helping to
identify local challenges, gaps, and problems with health care services, as well as assisting in making connections between local health care providers and the MS Society to facilitate more collaborative care for those
living with MS in the Creston area.
When asked to support MS Society initiatives, Ken has always been eager to help out. He has worked on
fundraising initiatives such as selling carnations, and supporting A&W’s Cruisin’ for a Cause, as well as assisting with MS awareness activities such as having the MS Society flag raised over Creston City hall for the
month of May, MS Awareness month.
Ken’s long term involvement and commitment to the MS Society and to people in his community is greatly
recognized and appreciated. Amazing as Ken’s contributions have been, their value is even more outstanding
because Ken has lived with MS for 40 years.
It is always a pleasure working with Ken, and he is always prompt to respond and eager to support the MS
Society. Ken is quick to downplay the pivotal role that he has played, but his contribution has been so significant that he shines through as a very strong Hero among us.
Quesnel MS Self Help Group, Recipient of the Heroes Among Us
Certificate of Exceptional Achievement—Volunteer Advocacy.
The members of the Quesnel MS Self Help group are exceptional. They
are involved in education, advocacy, support and fundraising, being a
great support to each other, people with MS in the Quesnel area and
the MS Society. Members are proactive in reaching out to educate
themselves about MS and how to improve their quality of life , travelling
to Prince George and as far as Vancouver to attend education sessions .
The Quesnel MS Self-help group actively advocating on a local and provincial level. In June of 2012, the local MLA Bob Simpson was invited to
their meeting to hear the concerns of local constituents living with MS.
The group was active in lobbying local candidates during the last BC Provincial election for increased access to
local HandyDart. During spring of 2014, a detailed submission was made on behalf of the Quesnel MS Selfhelp group, to the Disability White Paper, highlighting issues they felt were important in their community.
The Quesnel MS Self-help group is always eager to support the MS Society . When an email goes out asking
for support they always respond with action, and work hard at promoting events reaching out to be interviewed with local radio and newspaper media and being on ShawTV.
(Cont’d on page 4)
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In Memoriam - Karen McGregor
Karen McGregor - Remembering an exceptional and inspirational woman.
Karen McGregor was born, raised and lived her life in Cranbrook, B.C. She
was the oldest of 3 children in a long time resident family, in a home filled
with much love. She was an incredible wife and soul mate to Ron and an
excellent, caring and loving mother to their three sons.
Karen was truly a caring and giving person. Every task she took on she gave
110%, was very organized and dedicated. After she was diagnosed with MS
she became the East Kootenay MS Self-help groups best and most effective
fund raiser. In all her years working on group events, she had an outstanding positive and upbeat attitude, which affected everyone involved. Karen
along with her dedicated family and loyal friends raised funds for the MS
Society and the East Kootenay MS Self-help Group. She did this to support
the group’s goal, “to make people living with MS in our area have a better
quality of life.”
Karen was the Walk Co-ordinator for two years and in many of the other
walks held in Cranbrook, she was behind the scenes spending endless hours
to assist the Walk Coordinator for that year’s event, to make each one as successful as possible. Through her
efforts she not only raised many thousands for our group but also directly for the M S Society, mainly through
the MS Walks.
Also, Karen was very involved in the local Paraplegic Group, in helping to make Cranbrook more wheel chair
accessible. She was a strong advocate for persons living in wheel chairs. Karen was always looking for more
ways to give back to her community and help others. Even though she herself was in a wheel chair she loved
to hold the door open for a anyone with a disability or a senior.
When Karen was told she had leukemia it was already very advanced and she was rushed to Vancouver only
to find that it was a rare and aggressive type and she had a limited time. But Karen was able to have several
months at home before she passed in September of 2014. She had a remarkable attitude and even on a bad
day the worst she was ever heard to say was “Today isn’t a good day” and left it at that. Whenever asked
how she was doing she would respond, “I’m OK!” in a very upbeat voice. Then she would say “More importantly how are you?” But that was Karen only being Karen.
Karen was such a strong, together, giving, loving, positive, cheerful person. Karen’s fight with MS and leukemia is over, she fought both gallantly with grace and dignity and during all this time she put others before her
own problems and limitations.
This year the MS Walk in Cranbrook is being dedicated to Karen McGregor, to continue the fight to End MS.
(Cont’d from page 3—Quesnel SHG)
The secret to the success of this group is that all members become involved working collaboratively, making
decisions, supporting each other, and eagerly share responsibility. These individuals have only been together
4 years, but they have accomplished a lot. They are a great inspiration and role model for other self-help
groups, and have offered to provide information and support to any new groups that are just beginning.
Their positive and proactive attitude is a great strength in supporting each other, and in succeeding in all of
their accomplishments. It has been a great pleasure to work with the members of this group, and I want to
thank them for their continued support to the MS Society and to people in the Quesnel area living with MS.
The members of this group are truly Heroes Among Us.
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Peer Support and Self Help Groups
Expansion of Peer Support Program
The Lower Mainland Chapter has been running a peer support program successfully for many years. Our goal is to build on the success
of this group and expand the program nationally, with initial expansion in the BC & Yukon Division. We ran a pilot online training with
6 self-help group leaders who had expressed interest in receiving
training to enhance their skills for support and facilitation. The
training is comprised of 5 weekly sessions, participants have a
weekly reading followed by a one hour online discussion.
The philosophy of peer support is that peers can provide a crucial
type of support that someone without MS cannot provide. The peer
relationship is strengthened through the sharing of experiences in a
respectful, inclusive and empowering setting.
We are hoping to launch the next training session in the fall of 2015,
Please contact Debbie Irwin for more information.
New and Emerging Self Help Groups
Fort St. John - Bethany Comer is taking the lead in developing a
new self-help group in the Fort St. John area. A small group has already met a couple of times, but they want to reach out and encourage anyone interested to join them.
Meetings are being held in the Community Room at the Pool from
1:30 to 3pm, the 2nd Tuesday of each month, but Bethany is interested to expand this to every 2nd Tuesday. The next meeting is scheduled for April 28th. For more information contact Bethany Comer at
250-261-6796, [email protected].
Powell River—Afternoon group
BC & Yukon
Self Help Group Contacts
BURNS LAKE:
Monica Dell, 250-692-7072
CRANBROOK:
John Leasak, 250-489-4740
CRESTON:
Ken Chubb, 250-428-7737
Barb West, 250-428-2882
DAWSON CREEK:
Paula Friesen, 250-759-4146
FORT ST. JOHN:
Bethany Comer, 250-261-6797
HOUSTON:
Carlie Kearns, 250-845-7859
CHETWYND:
Ann Sigouin, 250-788-3991
QUESNEL:
Donna Jagusch, 250-992-3369
POWELL RIVER:
Lina Vallee, 604-485-4573
SQUAMISH:
Lisa Lawrence, 604-892-4451
SECHELT/SUNSHINE COAST:
Denise Howse: 604-886-2440
TERRACE:
Val Haugland, 250-635-3415
WHITEHORSE, YUKON:
Al Macklon 867-668-6349
For contacts in other communities please
contact Debbie Irwin. (contact info on front of
There has been interest in establishing an afternoon self-help group
newsletter)
in Powell River. Currently the group meets in the morning and some
individuals find it difficult to get to morning meetings.
Over the next couple of months I will work with those interested to set up an initial meeting for people to
connect and discuss how they want to move forward. This group meeting is not meant to replace the
current self-help group but to supplement and provide another option for those in the community living
with MS. You can go to either or both group meetings.
Whitehorse - New Social Group
A couple of individuals have been working at establishing a social group for people living with MS and
family members. This group would co-exist with the Whitehorse SHG, offering another opportunity for
people with MS to connect. The focus of the group is to get together socially, meeting for activities as
well as fundraising events such at the event that was held on April 25th at Mount McIntyre recreation
centre lounge. These individuals are looking for a positively focused way of connecting, and socially interacting, to live well with MS.
If you are interested in either of the new groups in Powell River or Whitehorse, or would like help in
establishing a new group in your area please contact Debbie Irwin for details.
1-800 268-7582. [email protected].
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Collaborative Outreach in the Yukon
Brent & Debbie in Whitehorse
Over the past 2 years we have been working collaboratively with other BC agencies
who support people in the Yukon living with a chronic health condition. These
include the March of Dimes Canada, The Arthritis Society, Heart and Stroke Foundation, Parkinson Society, PeerNet BC, and more recently the Kidney Foundation and
Crohn’s and Colitis Canada. Our goal is to work with health care providers and agencies in the Yukon to help individuals live well with a chronic health condition, through
the creation of an education workshop in Whitehorse, and developing ongoing education for people living with a chronic health condition and the health care providers
in the Yukon supporting them. Our aim is to assist individuals to learn skills to help
them live well and will include topics such as fatigue management, pain management, keeping active. We understand the importance of having ongoing support to
enhance and maintain wellness, so we are working with agencies and health care
providers in Whitehorse to develop plans for ongoing education and support.
This spring, March 11—14, 2015, I had the opportunity to travel to Whitehorse with Brent Page , National
Manager for Communication and Integration Services of March of Dimes Canada, to continue our collaborative efforts. Through the support of the Yukon Council on Disability we participated in the annual Disability
Expo, hosting a table representing all of the above BC agencies. In addition meetings were arranged with community partners, health care providers and key individuals in government to promote and gain support for this
initiative, and other collaborative efforts to support people living with
chronic health conditions. Stay tuned for more information as we continue
to work with our Yukon partners to further develop this initiative.
During this visit I had the opportunity to connect up with the Whitehorse
MS Self Help Group who hosted their own table at the Expo, and was able
to meet with individuals to provide an update on MS.
Florence Roberts, Alan Macklin from the
Whitehorse Self Help group with Debbie
at the Disability Expo
nCSIL—Choice in Supports for Independent Living
CSIL provides those receiving home support the option for greater autonomy and choice by receiving direct
funding through Health Authorities. Through the CSIL program individuals hire, train and manage their home
support staff. CSIL may be particularly helpful for those who would like more control and direction in the kind
of homecare services they are receiving.
CSIL allows for: Flexibility, Choice and Autonomy
When an individual is assessed for home care supports, they have the option to receive services through the
home care system or they can go with CSIL. The first step is to get ready for the assessment, present your worst
case scenario day, putting all of your needs forward including what family members do for personal care.
Funding is based on the current hourly CSIL rate, number of hours of personal care needed and cost of services.
The process of acquiring CSIL funding can be very challenging and you must be prepared to advocate and
negotiate. For many this can be too overwhelming.
Now there is support available for those who are interested in applying for or already utilizing CSIL. The
Individualized Funding Resource Centre (IFRC) Society can help individuals prepare for, understand and apply
for CSIL advocating for maximum number of hours available. They can assist with hiring staff, monthly payroll
and reporting requirements for paying staff and managing the program.
For more information: http://www.ifrcsociety.org/csil.html
Call Toll Free: 1-844-604-7576 Email: [email protected].
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2015 MS Walk & other Fundraising Initiatives
MS Walk and Virtual Walks
New MS Walk App
This year we have several organized MS Walks and Virtual Walks in the unchaptered areas, as well as the many MS Walks being held throughout the Division.
A great tool to help you raise
even more funds and to
reach out to even more people to support your fundraising efforts.
 Check your fundraising progress
 Invite others to join your team
 Ask people in your network to sup-
MS Walks:
Cranbrook, Sunday May 3 at 10am, Baker Park.
Contact Cyndie Dilts, Email: [email protected],
Phone: 250-426-0020
Whitehorse, Sunday May 31, 11am, Copper Ridge Place
Contact: Jenny Roberts, Email: [email protected] ,
Phone: 867-393-3824
powered by Protegra
port you via email, Facebook or Twitter
 Thank your supporters.
http://mssoc.convio.net/site/PageServer?
pagename=walk_mobileapp_NAT
Virtual Walks: Quesnel - Saturday May 9, 1pm, Ceal Tingley Park, Quesnel
Burns Lake - Sunday June 14, 12 noon, Spirit Square, Burns Lake
Houston - Saturday May 30
For more information on these walks contact Penny Brown at the Prince George Chapter
Email: [email protected], Phone: 778-764-0145
Check out our webpage for other exciting events happening in the BC & Yukon Division in 2015 including:
 5 MS Bike Events, (Fraser Valley, Cowichan Valley, Kamloops, Okanagan & West Kootenays)
 MUCK MS CANADA, Chilliwack October 3
I CHALLENGE MS - If there is no event in your area, you can plan and host your own event. I Challenge MS
if for any personal activity, event or group gathering where you are making a difference and raising money
for Canadians living with MS. No challenge is "small" when you are dedicating time, effort, and passion in
the fight to end MS.
I Challenge MS is an online platform where you can access an incredible library of resources and tips, share
updates about your Challenge, and easily gather secure donations. MS Society staff are also here to help you
plan, develop, and run your challenge.
Shawn MacDonald is walking to carry on his
Grandmothers dream to EndMS.
Shawn was born and raised in Prince Rupert BC where he has worked for the past
13 years for BC Ferries. Shawn was just a young child of 4 or 5 when his grandmother Margaret, who had lived with MS, passed away. Until the day she died,
Margaret lived with the hope that there would someday be a cure for MS. Shawn
wants to carry on his grandmother’s belief in the dream of a cure for MS. Initially
Shawn died his hair purple, then he decided on a larger goal, that’s why he is walking 15.5 km every Monday to Friday each week from April 1st to October 1st.
Shawn’s mother has joined him on his walk and his daughter Madison MacDonShawn and his daughter Madison
ald also shares this dream and is walking beside him on Monday, Wednesdays and
Friday. Shawn is asking you to join the fight to EndMS. If you are in the Prince Rupert area you can join him on his
walk, or you can take up the challenge and start a walk in your own community.
“I will walk everyday rain or shine to a trail called Butzy Rapids Trail. I will do this starting April 1st
till Oct 1st”. – Shawn
Shawn’s goal is to raise $5000 for the MS Society to help find a cure. You can donate to Shawn
here: http://mssoc.convio.net/site/TR/IChallengeMS/NationalOffice?
px=2196867&pg=personal&fr_id=4670&s_locale=en_CA
For more information contact [email protected] 1800-268-7582
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Research, Caregivers and Camp
Recognizing the Important Role of Caregivers.
Friends and family members play a key caregiver role in the life of someone with MS. We recognize the need
to do more to understand caregivers needs and challenges, recognize successes and advocate for more
supports to ease the stress on caregivers. We have recently undertaken a couple of different initiatives:
1. Caregiver Interviews. For the first couple of months of this year we had two Social Work Students in the
BC & Yukon Division office, who conducted interviews across the country, looking to hear the voice of
caregivers. We appreciate the personal sharing of all those caregivers that participated.
2. The national office of the MS Society of Canada has been working together with the Alzheimer Society of
Canada and Parkinson Society Canada looking at caregiver issues, as caregivers share common challenges, that are irrespective of disease. These agencies have decided to partner to look at topics that
appeal to all caregivers of the broader disease community, towards the goal of developing online
education initiatives.
We invite all caregivers to share your opinions by competing a short survey.
https://www.surveymonkey.com/s/3FWQXMN
Check out more information for caregivers on our website: http://mssociety.ca/en/help/iAmaCaregiver.htm
Research Updates
The MS International Federation provides a weekly update to the latest scientific research and peer reviewed
journal articles. http://www.msif.org/news-and-events/
You can also check out MS Society of Canada website for latest news on Research:
https://beta.mssociety.ca/research-news including articles on:
 First Canadian clinical trial studying ability of mesenchymal stem cells to treat MS
 Exercise may improve cognitive performance in people with relapsing-remitting MS
 The role of vitamin D in healthy living, disease prevention and MS
MS Summer Camp
2015 MS Summer Camp registration is now open! This is the 10th
year for this camp program that offers youth with MS the
opportunity to take part in a camp and share similar experiences
with other youth, and just have fun.
The 2015 camp will be held from August 8-15 at Ontario at Easter
Seals Camp Merrywood (near Ottawa).
Are you a Member?
Membership of the MS Society has many benefits. As a member you have a say in the future
of the MS Society and also allow us to speak on
behalf of Canadians with MS with a more powerful voice. You may also receive local, provincial and national publications.
To renew or become a new member email:
[email protected]
To receive an application or for more information about MS camp,
Call
toll
free: BC 1-800-268-7582
please contact Holly Guthrie, Easter Seals Camp Coordinator via
Yukon 1-866-991-0577
email at [email protected] or toll free at 1-800-668-6252 ext.
Or
renew
online
at:
325.
https://beta.mssociety.ca/living-with-ms/young-people-with-ms/summer-camp
https://beta.mssociety.ca/get-involved/become-amember
This newsletter is intended to provide news and information to people living with MS, their families, caregivers, medical professionals, and other stakeholders. Information/opinions contained in this newsletter are obtained from sources believed to be reliable but
their accuracy cannot be guaranteed.
The MS Society does not approve, endorse or recommend specific products or services and respects an individual’s right to make
their own health management decisions. However, we can provide information to assist people in their decision process. For specific, personalized information, please consult your physician or other health care professional.
The MS Society is not responsible for information or opinions provided on non-MS Society websites, blogs or other sources.
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