Connections Winter 2011.indd - Multiple Sclerosis Society of Canada

A newsletter connecting Albertans who want to end MS
www.mssociety.ca/alberta
Connections
Winter 2011
Edmonton Shumka
portrays hope and
challenge of living with MS
Skirts twirled, feet moved, and dancers smiled as
the Ukrainian Shumka dancers took the stage for
this year’s Red Boots & Bubbly celebration at the
Jubilee Auditorium in Edmonton. On November 20th, the
curtains were drawn and the lights dimmed as the audience
was treated to the extraordinary dancing talents of the
Shumka dancers. Halfway through the program, the festive
nature of the night gave way to a more sombre theme as the
dancers unveiled a new dance entitled Through a Dreamer’s
Eyes, a tribute to people living with multiple sclerosis.
...continued on page 13
“MS Society Alberta”
“MS Society Alberta ccsvi”
Photo: Ed Ellis

MS Connections is published quarterly by the
MS Society of Canada, Alberta & Northwest
Territories Division. It is intended to provide
news and information for Albertans with
MS, their families, caregivers, medical
professionals and other stakeholders. The
information and opinions contained in
this newsletter are obtained from sources
believed to be reliable, but their accuracy
cannot be guaranteed. We value your
comments, feedback and reprint requests—
please email them to info.alberta@mssociety.
ca or call us at the numbers listed below.
MS Society of Canada
Alberta & Northwest Territories Division
Managing Editor, Darrel Gregory
darrel.gregory@mssociety.ca
Editor, Angie Mah
angie.mah@mssociety.ca
2009/2010
Board of Directors
Board Chair: James Orr
1st Vice Chair: Carey Mogdan
2nd Vice Chair & Chair, Fund
Development Committee: Kevin O’Neil
Past Chair: Suzanne Deschamps
Treasurer: Dustin Sundby
Secretary: Lesley Turnbull
Chair, Client Services Committee:
Judy Gordon
Chair, Government & Community
Relations Committee: Joan Ozirny
MEMBERS-AT-LARGE
Darrel Frisken
Lynne Sangster
Doreen Saunderson
Bernie Buzik
Wayne Jacques
Melanee Framp
Hazel Flewwelling
Gayelene Bonenfant
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.
Contact Us
#150, 9405 - 50 Street
Edmonton, Alberta T6B 2T4
Phone: (780) 463-1190
Toll-free: 1-800-268-7582
Fax: (780) 479-1001
Email: info.alberta@mssociety.ca
www.mssociety.ca/alberta
2 MS Connections Winter 2011
Making an impact
It takes a team effort
As you read this issue of MS Connections,
you will see that the spotlight is on the
work we are doing to make a difference
in people’s lives. The stories provide just a
few examples of the important work we do
in reaching out to all Albertans affected by
MS, including persons living with the disease,
their families, caregivers, health professionals,
community partners, as well as the community
at large. Our programs and services provide
support and help to enhance quality of life
throughout the life course of the disease and the life span of the individual. Services
offered by the MS Society include information and referral, recreation, education,
support services, funding for special assistance and equipment, and advocacy. In
2009 alone, we were able to assist 4,000 people in our province, including 15,000
contacts with clients, members, health care professionals, community organizations
and the public.
I am extremely proud of the work that we do through the efforts of Division and
Chapter Boards, staff, ambassadors and volunteers. Beyond the stories that you will
read about in this issue, we continue to make quite an impact in many other areas
as well, including Kids Kamp, Teen Escape, long-term care, and support groups to
name a few. The annual Kids Kamp for example provides an opportunity for children
of a family member with MS to learn how to cope with the sense of loss and isolation
that children feel when the disease strikes their family. In the past few years we
have reached out to provide services to individuals with MS living in long-term care
facilities through our Friendly Visitor program that is supported financially through
Alberta Seniors and Community Supports. Last year alone, we were able to maintain
contact with 150 young people living in long-term care which helps to reduce the
isolation and depression that these individuals feel. As all of us know, the diagnosis
of MS can be a devastating shock. We know from many people that involvement in
one of our 20 support groups across the Province provides a very important lifeline of
peers helping peers.
I hope you enjoy this issue of MS Connections and the spotlight on service. It’s
important for us to always remind our readers that access to services is only a call
away. If you or someone you know needs our help, please do make this connection.
And if you don’t require help yourself, there are many opportunities for you to help us
help others. On behalf of all of us who work and volunteer at the MS Society, I wish
the very best to you and your family in 2011.
Neil Pierce
President
Alberta & Northwest Territories Division

Lethbridge forms CCSVI
support group
MS Society on hand to offer support and listen to concerns
On November 6, 2010, Susan
Schneider, an Ambassador of
the MS Society, organized the
first meeting of the Lethbridge CCSVI
Support Group to promote the testing
and safe treatment of CCSVI. The MS
Society, Lethbridge & District Chapter,
attended the meeting to listen to the
concerns and issues of persons with MS.
Due to overwhelming feedback, a second
meeting was held on November 16 to
share information about CCSVI. The MS
Society attended this meeting as well,
again to listen to people with MS.
“I see the Lethbridge CCSVI support
group as an extension of the MS
Ambassador spider web of information,”
said Susan. “After I had the CCSVI
treatment, I felt obligated to share
my experience with others. The main
purpose of the group is to share,
discuss and raise awareness of factual
information on CCSVI with others. There
is a huge amount of information on
television and the Internet that can be
confusing and misleading. I hope this
group will help clarify information.”
Susan also said “It’s very exciting to work
with the MS Society. It is my hope that
the concerns discussed at our meetings
will be relayed to the government using
the connections the MS Society has. This
will promote testing and safe treatment
of CCSVI in Alberta. This is the ultimate
goal.”
Ann Stewart, Executive Director of
the MS Society’s Lethbridge & District
Chapter, said “these meetings are for
people to connect with one another, to
share their stories, gain information, ask
questions, state concerns and clarify
beliefs. It is then our role to advocate
Ann Stewart (left) with Susan Schneider at the second meeting of the
Lethbridge CCSVI Support Group.
on behalf of our clients and convey their
concerns to Alberta Health and Wellness.
We are not here to offer medical advice,
that’s not our role, but we can provide
accurate information to help people make
informed decisions.”
At the second meeting of the
Lethbridge CCSVI support group, two
people who received the “Liberation
Treatment” told their stories. They
went to different locations to receive
the treatment and reported different
outcomes. Susan concluded the meeting
by saying, “Despite my belief in the
procedure, I do not recommend people
rush out of the country to have it done.
CCSVI treatment is still experimental and
you may not get the results you expect.
It is a personal choice but as with any
medical procedure you must do as much
research as possible. Check the doctor’s
credentials. Check with others who have
been there to ensure a safe reputable
location. Keep your expectations realistic
– it is not a cure.”
The next meeting is scheduled for
January 20, 2011 at 5:15 to 7:15pm at
Meyers Norris Penny, 3425-2nd Ave S,
Lethbridge. If you want more information
about this group please contact Ann
Stewart at 403-328-7002 or by email
at Ann.Stewart@mssociety.ca or Susan
Schneider at 403-328-3753 or by email
at susans1@telus.net.
MS Connections Winter 2011 3

We’re
inYour
By definition, advocacy is a form of
active support. The MS Society
provides advocacy in a number of
ways, including:
- Government and Community
Relations: We work with municipal,
provincial and federal governments to
make changes to policy and legislation
that affect people with MS.
- Individual Advocacy: We also provide
individual advocacy, including: support
4 MS Connections Winter 2011
corner
Advocating on behalf of people with MS
for people who don’t know where else
to turn; support for people who need
help finding and accessing information;
support in areas such as financial
difficulties, job accommodation, and
housing concerns.
The MS Society – Alberta and NWT
Division has staff dedicated to these two
levels of advocacy. In MS Connections,
we update you on what’s going on in the
world of Government and Community
ALBERTA & NWT DIVISION
Relations, but this column is designed
to show you what types of help we can
provide in terms of individual advocacy.
In each issue we will address topics such
as CPP-D, AISH, housing, employment,
human rights, and income support.
We will also answer frequently asked
questions and provide tips and tricks.
ANNUAL GENERAL MEETING NOTICE ANNUAL AWARDS CEREMONY
Notice is hereby given that the Annual General Meeting of members
of the Multiple Sclerosis Society of Canada, Alberta & NWT Division,
will be held on Saturday, March 26, 2011 at the Courtyard by Marriott
Edmonton West, 10011 184 St., Edmonton, AB at 9:30 am.
If you would like to attend please contact Dorothy Marshall at
780-440-8751 (Edmonton area) or 1-800-268-7582 outside of the
Edmonton area or via email at dorothy.marshall@mssociety.ca.
Members who are unable to attend the meeting in person but wish to
vote by proxy or receive the financial report can contact Dorothy.
CALL FOR NOMINATIONS
There are vacancies on the Alberta & NWT Division Board of Directors
and committees. Nominations are accepted from individuals from across
the province who can contribute to the advancement of our mission. The
deadline to receive nominations is February 1, 2011. A resume is required
with any nomination submitted.
Please send your nomination to:
Joan Ozirny, Nomination Chair
MS Society of Canada, Alberta & NWT Division
150, 9405 – 50 Street
Edmonton, AB T6B 2T4
Email: info.alberta@mssociety.ca
You are invited to attend the Annual Awards Ceremony of
the MS Society, co-hosted by Alberta & NWT Division and
Edmonton & Capital Region Chapter. The Awards Ceremony
will follow the Alberta & NWT Division and Edmonton
Chapter Annual General Meetings. You do not have to attend
the Annual General Meetings in order to attend the Awards
Ceremony. The Awards Ceremony is our opportunity to say
thank you to individuals and organizations from Alberta who
have made an outstanding contribution toward advancing the
mission of the MS Society.
Saturday, March 26, 2011
12 pm – 2 pm
Courtyard by Marriott Edmonton West
10011 184 St., Edmonton, AB
...continued on page 10
The Awards Ceremony is complimentary for AGM voting
members and award recipients. Additional banquet tickets can
be purchased for $25 per person. Due to limited seating, please
RSVP to Dorothy Marshall at 780-440-8751 (Edmonton area)
or 1-800-268-7582 outside of the Edmonton area or via email
at dorothy.marshall@mssociety.ca.

Pat Snowie, Community Outreach
Coordinator with the MS Society
– Central Alberta Chapter, has
been working hard over the past year
to bring programs and services to rural
communities around Central Alberta,
and her work seems to be paying
off! “So far I’ve had great success
with several communities,” says Pat.
“I’m bringing client services to small
communities from Olds to Ponoka, and
from Rocky to Stettler.”
On her visits to rural towns, Pat sets
up a Table Talk program which is a casual
information session where people can
ask questions and get to know Pat, and
Expanding
services to rural
Central Alberta
in turn, she can get
to know the people
in each community.
“I listen to what
people are saying
and tailor my
programming to
meet those needs. Table Talk is the
starting point to that process.” While
in town, Pat also visits people with MS
who are living on their own or in longterm
care; they chat, she brings them
information, and she sees if there are
ways to improve services for them.
For 2011, Pat plans to include more
awareness presentations to address
Peer Link
The MS Society – Alberta & NWT Division is expanding its Peer Link
service to include all of Alberta. Volunteers Alvina and Jeannine are
ready to respond to any questions you have about your MS diagnosis, where
you can fi nd services, and how to help your family adjust to the challenges
you face. Persons living with MS, families, health professionals and staff
are welcome to call or e-mail. You will receive a call or e-mail back within a
reasonable timeframe of about two days to a week.
Alvina lives with MS and has provided support at the Division offi ce for
many years. Jeannine has worked with the MS Clinic as the Nurse Coordinator
and at the Edmonton Chapter on their Client Services team.
“I’m bringing
client services to
small communities
from Olds to
Ponoka, and from
Rocky to Stettler.”
specifi c needs.
For example, she
wants to bring in
a fi tness expert to
adapt programs
for people with
MS and to speak
to other fi tness professionals about
incorporating those programs. She
would also like to get an MS Ambassador
for each community, and has a goal of
starting up friendly visiting programs
within those communities. Her favourite
part of the job? “I get a great satisfaction
knowing that I’m directly impacting
people’s lives in a positive way.”
Just a call or email away
Alvina Hughes
780-475-8255
alvina.hughes@mssociety.ca
Jeannine Christopherson
jeannine.christopherson@mssociety.ca
MS Connections Winter 2011 5

MS Movie Night
brings family and friends together!
On the evening of Friday,
November 5, the MS Society –
Lloydminster Chapter hosted its
first ever ‘Family Movie Night’, a casual
get-together designed to connect families
facing multiple sclerosis.
Moviegoers had a chance to share
laughs, snacks and each other’s company
while a family-friendly movie projected
onto a full-size screen inside a cozy local
hotel conference room.
The event is designed to provide a
forum for bringing together people living
with MS, while allowing for inclusion
of the families who make up such an
important part of their support system.
Adults had the option of socializing in a
separate room while kids watched the
Bye-bye hair!
This year at Ecole Rudolph Hennig
School in Fort Saskatchewan, teacher
Colette Stewart gave her students a
challenge to boost the excitement for
the MS Read-A-Thon program. “I told
the students that I would cut off one
centimeter of hair for every thousand
minutes they read (up to 41 cm.),”
said Colette. “I did a quick tally and
the students read more than 36,500
minutes in total and I cut off 37
cm. in front of the student
body!” The school raised
over $3,000 this year, and
to date they’ve raised a
grand total of $16,000!
6 MS Connections Winter 2011
movie.
“Movie Night was a great opportunity
for MS member families and individuals
to enjoy a relaxing evening (be it laying
down or sitting) watching a movie or
socializing,” says Myrna Jezowski, Client
Services & Program Coordinator at the
Lloydminster Chapter. “No worries about
line-ups, expensive admissions, and of
course, what would a movie be without
the popcorn and refreshments – which
we’re happy to provide!”
The evening also presented an
opportunity for a Friday night outing to
several local individuals living with MS in
long-term care homes.
The next instalment of MS Family
Movie Night will be coming soon….

Accessibility...
I’m frequently
asked if there is
existing housing
stock that is already
accessible. The answer,
for the most part, is
“No.” Although there
are some builders and
developers beginning
to include accessibility,
there’s still very little
choice. (Personally,
I’m shocked at how
few choices there
are in our housing
market for persons
with disabilities –
particularly when you
consider the needs of
our aging population).
That leads people
to ask even more, often
predictable, questions. “I’m new to all
of this barrier free design, where should
I start? Can the house I live in be easily
modified? Should I build a new home?
Can I find a home that would be easier to
modify? What are the cost implications
of all these different options?”
The first step in this process is
to nail down your budget. Generally
speaking, if you are seeking to renovate
a smaller home (say around 1200 square
feet), count on spending anywhere
from $30,000 (minor modification)
Where to Start
Ron Wickman
BA, BEDS, M. Arch.,
Architect, AAA, MRAIC
to $200,000 (major modification)
for modifications, complete with an
addition to make it truly accessible. Some
homes are simply easier to modify for
accessibility than others. There are three
If a renovation must be completed, have realistic goals. And if you’re
looking at buying an existing house for renovation, be patient.
key areas that will best help to determine
the degree of difficulty, and obviously
cost, for a barrier free retrofit.
1. The Home Entrance – It’s best
to look for a home where the main floor
is as close as possible to the ground
level. If the main floor is even two or
three feet above ground level (which is
normal in Canada), a rather long ramp,
from 24 to 36 feet long, will be required.
The alternative to this is a mechanical
vertical lift to substitute for a ramp. The
?
problem with either of these solutions is
that often, space doesn’t allow for easy
installation. Not only that, both are costly
items, and often difficult to aesthetically
“fit” to the existing building. If the budget
allows for an addition
to the home and an
elevator becomes
an option, then a
split level or twostory
home could be
considered.
2. Vertical
Circulation within
the Home – This
is the first issue
that I deal with
once I’m inside an
existing home. For a
bungalow, I look for a
straight run of stairs
from the main floor
to the basement; a 3
foot wide staircase
is typically wide
enough. At least
5 feet by 5 feet of
space should be at the top of the stairs
and at least 5 feet by 8 feet of space
should be at the bottom of the stairs.
This will allow for the installation of a
wheelchair accessible stair platform lift.
Homes with sunken living rooms or four
level split homes are also very difficult
to work with. Split level homes, however,
as well as two-story homes or larger
bungalows, may allow for the installation
of an elevator.
...continued on page 13
MS Connections Winter 2011 7

VOLUNTEER
PROFILE
Edmonton Chapter Board Chair
a volunteer extraordinaire
Bob Macklon was first
diagnosed with MS back
in 1988 and has seen
the disease, as well as various
treatments, evolve greatly
over the past 23 years. He first
became involved with the MS
Society 10 years ago when he
was put on a medical leave for
work, and wanted to find ways
to help out. “I just felt that
volunteering would be a good
way to give back to the rest of
the world,” said Bob.
As a volunteer, Bob has
selflessly donated his time in
many different ways. He is an
MS Ambassador, Chair of the
Edmonton and Capital Region
Chapter Board, he is on the
Accessibility Committee for the
City of Edmonton, and he is very
active with the Provincial Barrier
Free Council. “MS has been
around for years and we know so
On November 19, country music star Clay
Walker performed to a sell-out crowd at the
grand opening of the brand new Century Casino
in Calgary. Clay Walker, who has multiple
sclerosis, is an advocate for the National MS
Society in the United States and also has his
own charity – “Band to End MS.” During the
evening, the audience was able to bid on signed
Clay Walker memorabilia with all proceeds
going to the MS Society. Century Casino also
made a charitable donation of $7,000. In total,
almost $10,000 was donated to the MS Society
– Calgary & Area Chapter.
8 MS Connections Winter 2011
Bob Macklon has been working together with the
MS Society for the last 10 years, and has sat on the
Edmonton Chapter Board for the past three years.
little about it. The more we put into
fighting MS, the more we can get
out of it.”
Being a strong advocate for
the MS Society, Bob stresses
the importance of volunteer
participation for the MS Society,
whether it be through cheering at
the finish line at one of our events,
or writing a cheque for a general
donation once a year. “The more
people that volunteer and help the
MS Society, the more money that
is raised that can go to support
research and programs offered
through Edmonton and Capital
Region Chapter,” says Bob. “I think
the way that the Society treats
their volunteers is excellent. They
hold a lot of functions to recognize
the volunteers’ efforts, such as the
Annual Appreciation Event, and
everyone that I know feels accepted
and treated respectfully by the
Society.”
Century Casino and Clay Walker
band together to end MS!

Lakeland woman regains
mobility – and independence
MS Society helps to fund power wheelchair
Susie Ann Walchuk has had MS since
1987, but it’s only been in the last
four years that she’s really noticed a
decline in her mobility, to the point where
she is now in a wheelchair permanently.
After getting divorced, she found herself,
for the first time in 35 years, living not
only with MS, but on her own as well. In
addition to facing physical, life-changing
obstacles, she was all of a sudden dealing
with emotional and financial hardships as
well. Throughout all this, she remained
positive and determined to find a way to
be as independent as possible.
Being independent didn’t mean
she couldn’t ask for help. She asked
the Lakeland Regional Office of the MS
Society for help in applying for CPP
Disability and AISH, and while she
didn’t qualify for AISH, she has been
approved for, and is currently, receiving
CPP Disability. She then found herself in
a position that her standard chair was
no longer doing the job it once did and
needed help applying to various agencies
for a power wheelchair.
“I needed a motorized wheelchair
because I can no longer push myself and
I needed to get myself around. I didn’t
want to be alone in my house all the
time,” said Susie.
The Lakeland Regional Chapter sent
applications to a few different agencies.
In February Susie received the good news
that the Children’s Ability Funds would
send her $5,000 for her wheelchair,
which the MS Society matched through
the funds raised in the Lakeland MS
Walk. Susie will be receiving her metallic
red power wheelchair very soon!
In the meantime, the Lakeland
Regional Advisory Council contacted
the St. Paul Health Centre to see if Susie
could use a scooter until she received
her power chair. The Health
Centre generously loaned Susie
a scooter, giving her the ability
to move around and participate
in community events, and
even perform day-to-day tasks
such as shopping and taking
part in the support programs
offered by the MS Lakeland
Regional Office. In addition,
the MS Society, through its
Special Assistance Funding,
purchased bus passes for Susie
to help her get around. . She
has gained confidence in her
ability to be out on her own and
she is taking care of herself for
the first time, and is now truly
independent!
Susie Ann Walchuk is
seen here with her manual
wheelchair which will soon be
replaced by her metallic red
power wheelchair!
MS Connections Winter 2011 9

MS Society and Alberta Health strike working
group to develop a Provincial MS Strategy
Three years spent gathering input from Albertans
The Minister of Alberta Health
and Wellness has established
the MS Connector Services
Working Group. This group will develop
a Provincial MS Strategy to enhance
care, services and support for Albertans
affected by MS.
The MS Society spent three years
meeting with stakeholders from
across Alberta, including people living
with MS, to gather input in order
to make a recommendation to the
minister. We recommended that the
minister create a provincial strategy
to address the priorities of Albertans
affected by MS.
“The MS Connector Services
Working Group will help us reach
In Your Corner
...continued from page 4
Valerie Borggard, Education/
Advocacy Coordinator for the Edmonton
and Capital Region Chapter of the MS
Society, focuses on “individual advocacy
to help people access support. We
help speak on their behalf, complete
applications, write letters, and make
phone calls. I speak to a lot of people
who are frustrated and don’t know where
to turn, and it’s important to know that
we’re here for them – here to help.”
Chapters all across Alberta echo
this sentiment and have programs and
information sessions throughout the year.
“The best part of my job,” says Valerie “is
making sure people are informed about
the things that are important to them.”
If you have any questions or topics
that you would like to see addressed
in this column, please email the editor,
angie.mah@mssociety.ca. For more
information about services in your area
call 1-800-268-7582.
10 MS Connections Winter 2011
out across the province to help all
Albertans living with MS,” said Judy
Gordon, Chair of the MS Society’s Client
Services Committee and Co-chair of
the Connector Services Working Group.
“We are excited to work with Health
and Wellness and other stakeholders
to develop a coordinated approach
that combines excellent communitybased
resources and programs with the
outreach capabilities and expertise of the
Province.
In addition to representatives from
the MS Society and Alberta Health and
Wellness, members of the Working
Group will also include people living
with MS, representatives from other
government departments, Alberta Health
Services, MS Clinics (Edmonton, Calgary,
Red Deer), and representatives from
the University of Alberta and the MS
research community.
The MS Connector Services Working
Group has an 18-month mandate that
includes reviewing current programs
and services for people with MS as well
as the latest research developments.
Based on this information, the working
group will develop a provincial strategic
framework to improve access to
community programs and services. The
working group is committed to sharing
information as this approach has the
potential to inform how services could
be coordinated for other significant
illnesses.
MS Support Groups in Alberta
Battle River /Wainwright — call Teresa at 780-755-2226.
Boyle Area — call Deloris at 780-689-4300.
Brooks — call the Southeastern Chapter office at 403-529-6797.
Calgary — call (403) 250-7090 for further information.
Cold Lake/Lakeland — call Suzanne at 780-639-4145.
Drumheller — call Karen at 403-820-7863.
Edmonton — call 780-471-3034 for further information.
Elk Point — call 780-724-2430 for further information.
Fairview — call 780-835-4868 for further information.
Hinton — call Aileen at 1-800-268-7582 for further information.
Lethbridge — call (403) 328-7002 for further information.
Lloydminster — call (780) 871-0513 for further information.
Medicine Hat — call (403) 529-6797 for further information.
Pincher Creek /Crowsnest — call 403-627-2106 for further information.
Red Deer — call (403) 346-0290 for further information.
South Peace/Grande Prairie — call 780-532-3204 for further information.
St. Paul — call Denise at 780-645-3441 ext 226 for further information.
Tofield — MS Support Group last Wednesday of the month.
7 pm to 8:30 pm. Tofield Health Unit.
Vegreville — call 780-632-2848 for further information.
Yellowknife — call Shawn at 867-445-4372.

Familiar Face... Fresh Focus...
Welcome Back!
December Open House reconnects with clients in Grande Prairie
Renewed, rejuvenated and
reorganized, The MS Society
of Canada reopened its doors
in Grande Prairie in September 2010
with a familiar face running the show.
Donna Durnford returns after a fouryear
absence to guide client services
in Grande Prairie and area at the newly
named South Peace Regional Office.
“It’s more than a name change,” said
Donna. “We’ve changed governance and
created a part-time fundraiser position
as well, (Jane Wheeler) in order to have
a bigger impact in providing services to
clients.”
After a furious couple of months
of moving, reorganizing and meetings,
Donna has launched a couple community
outreach events to start the important
work of reconnecting with former clients
and saying hello to new ones.
In December, the South Peace office
hosted an open house. Thirteen people,
including Mayor Bill Given and Councillor
Lorne Radbourne, attended the event on
For several decades Jim Cooper was
a teacher and enjoyed spending
his summers investing in and
renovating property. A number of years
ago he noticed his right leg was starting
to go numb. Renovation projects quickly
became harder. After visiting numerous
health care professionals, he landed in
the office of a back pain specialist to see
if he could solve the medical mystery.
After a few tests, Jim was diagnosed
with Primary Progressive MS. Slowly,
he continued to decline. He began
looking for less labour-intensive property
investments and soon a colleague
a snowy December evening. Jolene
Olsson believes this is a good start.
“In a community our size people
need a place to go,” said Jolene, a
Grande Prairie resident. Grande
Prairie has over 50, 000 residents,
although its catchment service area
is well over 200,000.
Ben Krzysik, a long-time
resident who lives with MS, said
he was glad to have an office
back so soon and events like
this happening. “A lot of people
feel that if you ignore it, it’s not
there. But it doesn’t go away,”
said Ben.
Durnford has said future events
will include an education session
with a neurologist, starting a
community support group, running
a kid/teens camp in the summer,
partnering with other nonprofits to
create awareness and advocacy pieces
and of course the MS Enerflex Walk in
the spring.
Alberta man launches “Find the Cure” with help from his employer
introduced him to La Terra Ventures Inc.
La Terra has a program called “Match
Your Heart”, in which the company
matches contributions to support
charities that are dear to their employees,
clients and communities. So far, Jim has
personally contributed $4,000 to the MS
Society, Alberta & NWT Division, which
La Terra has matched. However, Jim’s
goals are much bigger than $8,000.
With the help of La Terra and the
MS Society, Jim is launching the “Find
the Cure” initiative. To find out more
about “Find the Cure” and how you
can be involved, contact Jim at: jim@
Jolene Olsson (left) attended the Open
House in December to celebrate the reopening
of the MS Society’s office in Grande
Priarie. Donna Durnford (centre) is the new
Client Services Coordinator. Also attending
was Doug Tokaryk, Outreach Manager of the
MS Society’s Alberta & NWT Division.
“We’re back, we’re up and running
and I can’t wait to see where we’ll be
a year from now,” said an enthusiastic
Donna.
laterraventures.com or 780-231-2617.
You can also visit the website at www.
laterraventures.com.
MS Connections Winter 2011 11

Keith Johnston, Doctoral student
at the University of Alberta and
MS ActiveNOW Coordinator
with the MS Society, Edmonton
Chapter, will answer your
questions about exercise and MS.
If you would like to ask Keith a
question, email it to info.alberta@
mssociety.ca or call the editor,
Angie Mah, at 780-463-1190 or
1-800-268-7582.
Is it important for fitness
providers to be educated
about Multiple Sclerosis?
Fitness providers represent
well-educated individuals in
the areas of physical activity,
kinesiology (study of human
movement), fitness and health, and are
certified by a professional association of
their peers. They are competent in a wide
range of skills such as, assessing health
and fitness levels, prescribing exercise,
designing physical activity programs,
and counselling for lifestyle changes
that increase physical activity. Given
this knowledge and expertise, fitness
providers represent a key component
to ensuring you become and maintain a
physically active lifestyle.
However, to make certain you receive
the best possible service from these
individuals it is also important to educate
them about multiple sclerosis, your
individual experiences with the disease
and the barriers that may prevent you
from being active. This ensures that the
fitness professional has an understanding
of what MS is, the symptoms associated
12 MS Connections Winter 2011
with it, and how it impacts your life, in the
end enabling them to create an exercise
program tailored to meet your specific
needs and goals. For example fatigue for
many individuals with MS represents one
of the most significant barriers to their
participation in exercise. By informing
and educating your fitness provider,
they can in turn create a program that
accommodates fatigue by introducing
scheduled rest breaks, reduced intensity
or intervals work and rest.
Educating fitness professionals also
focuses on providing information about
general barriers to participation. General
barriers to participation can come in
many forms, some of which are physical,
social, emotional or economic in nature.
Through educating fitness professionals
about these types of barriers and making
changes within their centre, themselves,
and the culture of the centre can help to
remove or reduce them. Typical barriers
that can be addressed are increased
access to facility and useable equipment
and improved attitudes of centre staff
and members towards persons with MS.
The MS Society through its MS
ActiveNOW initiative has educational
programs in place to educate fitness
providers and to meet with persons with
MS that are physically active and hear
their success stories. To learn more about
the education programs offered or to
share your stories contact the Society
by phone (1-800-268-7528) or email
(active@mssociety.ca).
It is important to remember that
the fitness professional, along with the
MS Society are there to help you think
of ways to adapt activities and remove
barriers so you can participate and
become active. There are always ways to
remove, reduce or minimize obstacles to
your success.
2011
Enerflex MS Walks
Brooks June 5
Calgary June 5
Drumheller May 1
Edmonton May 15
Fort McMurray May 1
Grande Prairie Apr 30
Lethbridge April 16
Lloydminster April 16
Medicine Hat May 29
Red Deer May 29
St. Albert May 1
St. Paul/Lakeland May 7
2011
RONA MS
Bike Tours
Leduc to Camrose
June 11 & 12
Calgary
June 11 & 12
Central (Red Deer)
June 11 & 12
Mountain (Hinton)
Sept. 10 & 11

Edmonton Shumka dancers
pay tribute to people with MS
through the art of dance
...continued from front cover
Co-hosted by Lorraine Mansbridge
of Global TV and Jean Marc
Genereux of So You Think
You Can Dance Canada, the evening
contained several entertaining
moments. The program began with
a moving poem about MS by Alice
Major, and continued with a Celine
Dion song performed live by Annie
Villeneuve, a Montreal performer who
sang at the 2010 Vancouver Olympics
opening ceremonies. The dance spoke
to people with disabilities and, in
particular, portrayed the struggles, fears,
perseverance and hopes of persons living
with MS.
“It’s the journey of a young girl with
MS,” says Dave Ganert, Artistic Director
and Resident Choreographer for the
Ukrainian Shumka Dancers. “The piece
was about looking into the struggle.
There’s a guardian angel who guides her
through her spiritual journey, and offers
a sense of community, and the hope that
one day we’ll be able to beat this disease.
There are also people in suits who
represent every one of us, and the means
to be able to help her in a physical sense.”
The dance is very close to Ganert’s heart,
as his father has been living with MS for
the past 15 years.
The program ended with the group
of dancers being joined by several people
from in and around Edmonton who have
MS. This group included Julia Daniluck,
Chris Kieser, Donna Johnson, Dan
Carline, Tammy Barr, and former Shumka
dancer Cherisse Killick-Dzenick. Larissa
Sulyma, who still dances with the group,
carried a picture of her mother, Lorrie
Sulyma, who, before her death in 2006,
was also a Shumka dancer.
Many of the Shumka dancers have a
personal connection to MS. “A number
of dancers and family members have
been affected by the disease,” says
Ganert. “This piece was Shumka’s
way of using our talents to express the
MS experience, raise awareness, and
appreciate the difficulties that come with
MS through expression.”
To find out more about the Shumka
dancers visit their website at
www.shumka.com.
The Ukrainian Shumka dancers share the stage with people living with MS in
their new dance, Through a Dreamers Eyes.
Photo: Ed Ellis
Accessibility
...continued from page 7
But keep in mind that few existing
homes were ever planned around the
need for a future elevator. Finding an
effective location within an existing
home for an elevator may be very
difficult and very costly. Again, if the
budget allows for an addition to the
house, an elevator may be a very good
option.
3. Washrooms – If an existing
washroom is too small for individuals in
wheelchairs, then major modifications
are often required. Constructing a
larger barrier free washroom requires
plumbing, electrical, and often
structural changes. It also means that
other spaces, such as bedrooms, are
compromised to make room for the
larger washroom. Sometimes there’s
simply no space to allow for this to
happen.
There are many other issues
for concern when thinking about an
accessible home modification, such
as parking, doorways, hallway widths,
closets, kitchens, laundry, and flooring.
However, these typically don’t greatly
affect an accessible home modification
like the above mentioned three main
areas of concern.
If a renovation must be completed,
be realistic. If your existing house fails
to meet the three basic criteria I’ve
listed above, think about selling and
looking for something more suitable.
And if you’re looking at buying an
existing house for renovation, be
patient – don’t let a realtor pressure you
into buying anything without carefully
assessing the house on the basis of
these criteria.
As always, I highly recommend
using a barrier free design consultant.
The money invested in this consultation
should be well worth it in the long run,
both in terms of budget and providing
the most positive solution.
MS Connections Winter 2011 13

M BILIZING
ur Members
Lloydminster Chapter funds scooters for members in need
“My new power wheelchair is
fabulous! It gives me so much more
independence to make trips outside of
my long-term care home,” says Cherie
Gagne, whose wheelchair was paid
for by the MS Society - Lloydminster
Chapter.
Due to its often debilitating
effects, multiple sclerosis can
pose a serious threat to an
individual’s independence. Thanks to
funding received from a third-party
charity golf tournament, the MS Society
– Lloydminster Chapter is giving the gift
of newfound freedom to local members
who have felt the impact of the disease’s
physical toll. The Chapter has enacted
a Scooter Purchase Program that lends
a hand to individuals living with MS
whose financial resources are severely
limited. The goal of the program is to
ensure that finances don’t become a
barrier to mobility. Recognizing that
14 MS Connections Winter 2011
a scooter has the power to give selfsufficiency
back to a person with MS,
greatly improving their quality of life,
the Chapter is helping to relieve the
financial burden associated with making
this key purchase for individuals in
need. To date, the program has funded
the purchases of 2 scooters for local
members living with MS. It has also
assisted in funding an electric wheelchair
for an individual in long-term care. These
purchases have been transformative in
the lives of the recipients, granting them
renewed freedom and opening doors of
opportunity to experiences that were
once considered ‘impossible.’
The Lloydminster Chapter thanks
Leckie & Associates for its generosity in
making this program available to local
members through funds raised during
the 2009 Leckie & Associates Charity
Edmonton neurologist connects
with community in Lloydminster
Local fundraising dollars, combined with local
sponsorship, enable outreach visits from neurologists
Road trips have become a regular
part of Dr. Kenneth Makus’ routine
over the past year. Despite a very busy
practice, the Edmonton neurologist has
readily agreed to hit Alberta highways
in an effort to educate MS patients,
physicians and health care providers
about the disease. The MS Society has
organized the events and made these
outreach events possible through the use
of fundraising and sponsorship dollars. A
partnership with Husky Energy, combined
Golf Tournament. As a result of their
corporate commitment to the MS cause,
and an impressive display of community
giving, the lives of people living with
multiple sclerosis are being impacted in
tremendous ways.
Recognizing the paramount
importance of mobility, the Lloydminster
Chapter also funds local Handivan
transportation for eligible members,
helping to ensure individuals in
wheelchairs or scooters have the access
they deserve. For members living with
MS who do not require the services of
a Handivan but can no longer drive, the
Chapter also funds taxi transportation.
Especially during the cold winter months,
these options provide a safe and reliable
mode of transportation for individuals
who might otherwise not be able to leave
their homes alone.
with funds raised during the Enerflex MS
Walk, has enabled dollars to be used
to support people with MS at the local
Chapter level. Dr. Makus’ outreach efforts
are especially important in rural areas,
where there are no local neurologists and
knowledge about MS is often limited.
Stops on Dr. Makus’ cross-provincial
tour have included Bonnyville, Hinton,
Fort McMurray and Wainwright; in early
November, he added Lloydminster to the
list. Continued next page...

QUEST
Joel Cooper’s website is dedicated
to his wife Muriel. “Our love endures
despite many challenges. Because we
have unconditional love, all things are
possible.”
On his 50th birthday, Joel
Cooper saw an opportunity
to become a happier and
more complete version of
himself. However, to get there he’d have
to shed the defensive and avoidant
person he was. “I said to myself, ‘now
that I’m 50, I can be who I really am. I
can be true to myself, speak my needs
and define my lifestyle the way I want
to.’” While this was the turning point, the
journey to get there really began when
he was at a bargain bookstore and came
across the book The Art of Happiness by
the Dalai Lama. Joel studied the book
thoroughly and started implementing the
teachings into his own lifestyle.
Having lived with MS for the last 27
years, Joel has seen his share of ups and
downs. “I made a decision,” he said “to
live happily instead of being a victim of
One man’s
for happiness
my circumstances. I made a lifestyle
adaptation to the new circumstances.
In doing this, I developed a particular
meaning and purpose to my life.”
After Joel was first diagnosed, he
got into contact with the MS Society –
Edmonton & Capital Region Chapter.
He went to support groups and decided
that he wanted to spend some of his
extra time volunteering with the MS
Society. And one of the things he wanted
to do was spread the word of how he
discovered his newfound happiness in the
hopes that other people would be able
to follow their own paths to happiness.
It started off as one presentation to a
support group, and then evolved into
a PowerPoint presentation for three
Neurologist
...continued from previous page
On November 1, Dr. Makus keynoted
a series of sessions on MS topics with
Lloydminster area
doctors and health care
professionals. A strong
attendance was evidence
of the local interest
level, with 9 doctors,
2 optometrists, and 31
health care providers
representing the fields
of homecare, nursing
and physiotherapy. In
addition to having their
cMS questions answered,
they were able to leave
the sessions with a wealth of MS
informational material. The event was
more support groups, and eventually
grew into a 5-session workshop. Joel
decided he wanted to do more with the
presentation. With the help of his wife,
Muriel, they edited and transferred the
text from the PowerPoint presentation to
a Microsoft Word document and decided
to create a website that provided both
information and also exercises to help
readers achieve their own happiness.
Joel’s friend David Sanders wanted to
lend a hand, so he donated some money
towards the development of Joel’s
website. David contacted a friend of his,
Kim Tanasichuk, who developed the site.
Together, they created the website www.
questforhappiness.ca where Joel is able
to share his philosophy with the world.
of particular educational value to the
many local physicians who originate from
countries such as South
Africa, where MS is less
prevalent.
While in Lloydminster,
Dr. Makus also took the
opportunity to make
‘house calls’ to a number
of local individuals living
with MS who have
difficulty making trips
into the bigger cities
for appointments. This
Dr. Ken Makus
included seeing two
individuals at a long-term
care home, who deeply appreciated his
visit.
MS Connections Winter 2011 15

National endMS Campaign
We’re more than 80% there!
In the fall of 2008, the MS Society
launched an ambitious campaign to
raise $60 million to fund MS research
and establish the endMS Research and
Training Network (RRTC). The ultimate
goal of this five-year campaign: to
accelerate the progress of MS research
in Canada. (To read about the Alberta
endMS Research and Training Network,
see the last issue – Fall 2010 – of MS
Connections.)
We are very pleased to report that
more than $50 million has been donated
to date, assuring that sometime in 2011,
our goal of $60 million will be reached!
In the words of Yves Savoie, President
and CEO of the MS Society of Canada,
“Through the endMS Campaign, we’ve
witnessed amazing acts of generosity
and donations to the MS Society from
Canadians across the country.”
The endMS Network currently
involves 700 researchers and trainees
from more than 50 academic and health
institutions across Canada. Trainees
and researchers are offered national
education and training programs, national
awards programs and regional programs
operated by five research and training
centres within defined geographic areas
of Canada, including here in Alberta. In
STAY INFORMED!
The MS Society is committed
to reaching out to all Albertans
with MS. If you know someone
who would like to receive
a complimentary copy of MS
Connections, please call us at
1-800-268-7582.
Publications Mail Agreement 40064145
Return undeliverable items to:
MS Society of Canada
Alberta & Northwest Territories Division
#150, 9405 - 50 St, Edmonton T6B 2T4
16 MS Connections Winter 2011
fact, the Alberta endMS RRTC brings
together more than 220 researchers and
trainees from the University of Alberta,
the University of Calgary, the University
of Lethbridge and their teaching hospitals
and health research partners. The
principal focus is to attract, train and
retain MS researchers and increase
opportunities to conduct MS research in
Canada.
The success of the endMS Network
has increased the pressure to raise
additional funds through this campaign
to support the MS Society and the MS
Scientific Research Foundation’s research
grant programs. Thus it is essential that
we achieve and exceed the campaign
goal of $60 million, projected to happen
in 2011!
Imagine a future without
Multiple Sclerosis
Jan Petrar knows one day this will be a reality
and she’s doing something about it today.
Jan Petrar and her children
You too can create a
legacy of hope for future
generations! Contact us to
find out how
Jan made a commitment in her will to support the
MS Society’s internationally respected research
program. “Research gave me my life back. It also
gave my son and daughter their mother back.”
She knows what it’s like to suffer through
neurological pain, to deal with depression and
fatigue. And she knows the impact this disease has
on families and communities.
George Jacob
Ph: (403) 250-7090
Email: george.jacob@mssociety.ca
Web: www.MSlegacy.ca
Alberta & Northwest Territories Division