Summer 2011 - Multiple Sclerosis Society of Canada

A newsletter connecting Albertans who want to end MS
www.mssociety.ca/alberta
Connections
Summer 2011
2011 MS Kids Kamp
Edmonton & Capital Region Chapter
“MS Society Alberta”
“MS Society Alberta ccsvi”
Join us on Facebook at: Cruisin for a Cause

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
2011
Board of Directors
Chair: James Orr
1st Vice Chair: Carey Mogdan
2nd Vice Chair: Kevin O’Neil
Treasurer: Gayelene Bonenfant
Secretary: Joan Ozirny
MEMBERS-AT-LARGE
Phil Clarke
Hazel Flewwelling
Melanee Framp
Darrel Frisken
Wayne Jacques
Jason Kaye
Lynne Sangster
Doreen Saunderson
Jessica Williams
HONOURARY DIRECTOR (Non-voting)
Judy Gordon
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 Summer 2011
Declining Walk revenues
present challenge
MS Bike Tours remain strong
I
wish to take this opportunity to
acknowledge and thank the thousands
of event participants and volunteers
throughout Alberta who came out this year to
support the 12 Enerflex MS Walks and three
RONA MS Bike Tours in the spring. Feedback
from participants was extremely positive.
Proceeds raised from the walks and bike tours
represent the majority of our revenue which
we use to provide programs and services for
Albertans living with MS. The two largest bike tours, Leduc to Camrose and Airdrie to
Olds, did extremely well and are likely to exceed the amount that was raised last year.
The walks, on the other hand, experienced a fairly significant decline in participants
and money raised. Judging from what we
know about the charitable giving sector
in general, this should not have come
as such a big surprise, given the slow
economic recovery, competition with
other events, and other factors that are
less apparent.
The decline in walk revenues is of
concern because, in general, most of the
participants have a direct connection
to MS and therefore have the most at
stake. Their close connection to the
disease means that they are impacted,
either directly or indirectly, by the level of
services we are able to provide and the
number of MS research projects we are
able to fund.
“Their close
connection to the
disease means
that they are
impacted...by the
level of services
we are able to
provide....”
I welcome your comments and opinions which can help us make changes to the walks
in order to increase participation and revenue. It’s important that we get a handle
on this so we can recover the decline in revenues next year that affect our ability to
advance the MS cause in Alberta and across the country. To do this, we will need
everyone’s help.
Neil Pierce
President
Alberta & Northwest Territories Division

MS Friendly Visiting program
provides vital outreach
The MS Friendly Visiting program provides informal support for persons with
MS who live in continuing care. The program provides support, awareness of
community resources, shared activities, and in some cases a means of respite
care for caregivers of persons with MS.
Larissa (right) and Mary share a
conversation during a recent visit. Mary
is a resident at CapitalCare Dickinsfield in
Edmonton.
“Larissa has been part of my life for about a
year and a half. She is invaluable to me, and
the time that I spend with her is precious. I
can’t read anymore, so she’s my eyes, and
she fully comes through for me. I think we’ve
become pretty good friends. It’s just precious,
precious time.” - Mary
Erin Ferguson (right) visits Barb
Imbrogno, a resident at Dr. Vernon
Fanning Centre in Calgary.
“I really look forward to my visits with
Erin. It is always nice to hear her stories
and keep updated on what she has been
up to.” - Barb
Kristin Munro (left) visits Fay
Wallace, a resident at Dr. Vernon Fanning
Centre in Calgary.
“The program has been a very rewarding
experience. It has been great to get to
know Fay and I really think we learn a lot
from each other.” - Kristin
“Kristin is very nice and kind and I
always look forward to seeing her.” - Fay
MS Connections Summer 2011 3

A rtists’ Corner
Ambassador turns to
poetry for self-expression
Jessi Fairhurst from Brooks is a long-time Ambassador with the MS
Society. She has written poetry on and off over the years and has
recently delved into her creativity to produce a new poem. Jessi was
diagnosed with MS in 2002. In this poem, “I Miss You,” she speaks to
how she sometimes misses the person she was before MS came into
her life.
I Miss You
By Jessi Fairhurst
I miss you
I miss the you that was carefree
I miss the you that didn’t wake with pain and exhaustion
I miss the you that didn’t have to pretend that you’re “fine”
I miss the you that wasn’t helpless
I miss the you that didn’t have to struggle against your own body and brain
I miss the you that wasn’t in a constant battle with depression
I miss the you that didn’t wonder what the point was
I miss the you that has lost so much without even getting it first
I miss the you that doesn’t have to suffer so much grief
I miss the you that was me.
4 MS Connections Summer 2011
MS fundraising
results across
the province
(as of July 14, 2011)
2011 RONA
MS Bike Tours
Leduc to Camrose
$1.8 million
Airdrie to Olds • $714,000
Central (Red Deer) • $107,000
2011
Enerflex MS Walks
Edmonton
St. Albert
Drumheller
Grande Prairie
Lloydminster
Calgary
Red Deer
Lethbridge
Brooks
Medicine Hat
Fort McMurray
St. Paul
$670 000
$136 000
$38 000
$52 000
$115 000
$717 000
$162 000
$150 000
$19 300
$71 500
$16 500
$177 000
North Peace Trail Ride
40 Riders • $31,708
$218,000

During the weekend of June 3-5, 19 teens from around the province got together for the 10th Annual MS
Teen Escape held at Gull Lake, near Red Deer. It was a chance for teens affected by MS to participate in fun
educational and recreational activities, and mingle with new and old friends alike.
“ “ new people.” - Haley
“
“
What I really like about Teen Escape
is the support. It really helps to open up
and be around people who go through the same
thing as you do. You have people at school and
people in your everyday life, and sometimes they
don’t really understand what it’s like to have a
parent with MS and how hard it can be. I really like
coming here because we all have that in common.
We meet people here and most of the time we stay
in touch and talk throughout the year.” - Bria
What I like about Teen Escape is the fun
activities, the food and how nice all the
people are.” - Cody
MS
Teen eScape
Fun, friends and support
I love coming to MS Teen Escape
because of all the activities we do and
we get to learn about MS without it being a
boring classroom scenario and you get to meet
I really like it because of the support
and all the friends you meet because
you do stay in touch with them all year and you
can talk to them whenever you want.”
- Stephanie
MS Connections Summer 2011 5

Alberta CCSVI study seeks
volunteers
A highly-anticipated Alberta MS observational study ready to enrol volunteer
participants
The Alberta Multiple Sclerosis
Initiative (TAMSI) is a 3-year
study for people with MS and
related conditions, initially
focussing on those who have sought
interventions for chronic cerebrospinal
insufficiency (CCSVI).. The $1 million
funding for the study was announced in
December 2010 by Gene Zwozdesky,
Minister of Health and Wellness.
The main immediate goal of the
TAMSI study is to determine the safety
and patient- reported impact of the
various types of treatments which
have commonly become known as the
“Zamboni treatment” from Albertans
who have had one of these types of
procedures.
“In order to fully understand the
benefits of treatment and possible
complications of CCSVI as it relates to
MS, we need the personal , first-hand
accounts of Albertans living with multiple
sclerosis,” said Neil Pierce, President, MS
Society, Alberta & NWT Division. “The
TAMSI study will increase our ability to
track people’s treatment experience and
advance our knowledge. In fact, I recently
heard Dr. Hubbard, a well-respected
CCSVI proponent from California, affirm
that we need to track the personal
6 MS Connections Summer 2011
testimonials of people who have received
the treatment.”
Dr. Luanne Metz, from the University
of Calgary Hotchkiss Brain Institute, is
the principal investigator on the TAMSI
“Prospective
volunteer
participants can
visit www.tamsi.ca for
further information
on the TAMSI
study....”
study. Dr. Metz is leading a diverse team
of researchers from the University of
Calgary and University of Alberta, in
collaboration with other MS experts from
a broad range of backgrounds.
“All Albertans with MS, regardless
of their treatment plans or experiences
with CCSVI interventions, are being
encouraged to take part,” said Dr. Metz.
“A wide spectrum of MS patients is
required in order to adequately compare
and evaluate the impacts of the various
‘Zamboni treatments.’”
In addition to MS patients, Albertans
with suspected MS, optic neuritis,
transverse myelitis, Devic’s neuromyelitis
optica, or a clinically isolated syndrome
(CIS) will also be invited to participate in
the TAMSI study.
The TAMSI study will look at the
safety and patient-reported impact of the
range of CCSVI interventions including
angioplasty and venous stents, as well as
prescribed aftercare plans.
Participants who register for the study
will be asked to fill out online surveys and
permit linkage to their health information.
Data from the study will allow researchers
and clinicians to gather evidence to describe
patient-reported symptom changes,
compare any adverse effects that follow
different types of CCSVI treatments, and
develop after-care guidelines.
This information will be very useful
in understanding the impact of MS on
Albertans, designing future MS research
and ultimately improving the lives of
people with MS and related conditions.
Prospective volunteer participants
can visit www.tamsi.ca for further
information on the TAMSI study and
expectations of participants.
MS Corporate Heroes
Join The Challenge and Walk,
Bike or Golf to End MS!
Visit: mssociety.ca/alberta/corporateheroes.htm

Alberta Student
A BRIGHT LIGHT
Brietta Gerrard’s younger sister
was diagnosed with MS at the
age of 16. As a result, Brietta
wanted to make
a difference and started
volunteering with the MS
Society’s Lethbridge & District
Chapter three years ago while
attending the University of
Lethbridge.
She volunteered for
monthly bingos and the
Enerflex MS Walk. In 2009
and again in 2010, she worked
as a summer student for
the Lethbridge & District
Chapter, managing the Hit
a Ball for MS fundraising
event and participating in all
other fundraising events. She
continued to volunteer her
time during the school year.
During the summer of
2010 she joined the Friendly
Visiting program and started
visiting persons with MS who
live in long-term care facilities.
Last year Brietta
volunteered at the Canadian
Centre for Behavioral Neurosciences
at the University of Lethbridge. While
there, she completed an independent
IN MS RESEARCH
study with Dr. Gerlinde Metz, one of four
Alberta endMS Regional Research and
Training Centre (RRTC) researchers at
the U of L. Her commitment and work
ethic impressed Dr. Metz. With the
intention of recruiting Brietta as an RRTC
trainee, Dr. Metz introduced her to Dr.
Wee Yong of the University of Calgary
and director of the Alberta endMS RRTC.
After an interview, Brietta was offered the
Brietta Gerrard started volunteering with the MS Society
three years ago after her sister was diagnosed with MS
and is now working towards a degree in an MS-related
field.
position for an endMS grant.
Next fall Brietta will attend graduate
school to obtain an M.Sc. in Neuroscience
at the University of Lethbridge. She will
learn from Dr. Yong how to induce the
EAE model (animal model of MS) in
rats. Under the guidance of Dr. Metz
and Dr. Artur Luczak, Brietta will conduct
research involving imaging as well as
intracranial electrode stimulation to see
if this method can repair brain damage
in order to delay or halt the progression
of MS. This summer/fall Brietta and
her instructors will conduct a
pilot study before the actual
experiments start.
Brietta plans to pursue
a Ph.D. in Neuroscience or
Counseling, continuing to work
with multiple sclerosis. She is
uncertain whether or not she
wants to work from a patient or
research perspective.
The endMS Campaign
is a MS Society of Canada
$60 million capital campaign
designed to recruit young
researchers to the field of MS
research. Canadian scientists
have been world leaders in the
battle against MS, but with
veteran researchers nearing
retirement, new scientists must
be recruited if the battle is to be
won.
The Alberta endMS
RRTC has exceeded all
expectations in terms of
the numbers of researchers,
clinicians, trainees and institutions
brought together from across Canada. In
Alberta alone, the RRTC brings together
over 90 researchers and 140 trainees
from institutions in Calgary, Edmonton,
Lethbridge and Red Deer.
For more information on the Alberta
endMS RRTC, see the Fall 2010 issue
of MS Connections, available at http://
mssociety.ca/alberta/publications.htm.
MS Connections Summer 2011 7

Beat the heat and stay active
The summer heat will soon
be here. For people with
MS hot weather can often
bring additional challenges,
especially when it comes to being
physically active. Heat can cause
symptoms to appear or make the
ones you already experience feel
worse. A majority of people with MS
experience heat-related symptoms,
which have been known to cause
decreased cognitive functioning,
numbness in extremities, fatigue,
blurred vision, tremors and/or
weakness.
Fortunately, the effects of
heat are usually temporary.
People with MS need to
take time to assess their
sensitivity to heat and
find strategies that will
help ease the effects.
Cooling has been
shown to decrease
fatigue and improve
dexterity, mobility,
balance, and cognitive
function. It’s important
to note that cooling
should not only be
considered something
you do to beat the
heat, but as a lifestyle
strategy which can be
used no matter the
8 MS Connections Summer 2011
Don’t let the summer months interrupt
your workout schedule
activity or season.
There are many ways to beat the
heat and still be active. One option is to
try exercising or being active in a cool
environment. Pick cooler times
of the day, usually
early morning or evening, or use air
conditioning or a fan to help maintain
body temperature. On those extremely
hot or humid days, choose to be active in
an air-conditioned environment. Instead
of walking, golfing or biking outside, take
a walk in your local mall, hit the indoor
driving range or use a stationary bike at a
local gym.
When active, try to wear clothing
seasonally appropriate for the
temperature and activity. This would
mean wearing lightweight, light-coloured,
loose, breathable cotton or silk clothing
rather than man-made fibres like
polyester. If you are going to be outside,
wear a wide-brimmed hat to keep the
sun off your head and neck.
Another option is to use cooling
products (vests, neck wraps,
bandanas, etc.) during exercise or
outdoor activity or try making your
own personal cooling system
using thermal bags containing
‘blue ice’ gel packs. A simple
damp towel, a frozen water
bottle, or chilled hat can
also be helpful, inexpensive
options. Spraying yourself
with a hand-held spray bottle
or misting fan can also help to
keep you cool.
While exercising, to help
avoid increasing your body
temperature, make sure to
continued next page...

The Hay Lakes lunch stop, hosted by the Hay Lakes and District Lion’s Club, is buzzing with hungry cyclists on day two of
the RONA MS Bike Tour – Leduc to Camrose.
Keeping the cyclists happy, fed and energized
Hay Lakes Lion’s Club plays vital role in RONA MS Bike Tour
For over 10 years, The Hay Lakes
and District Lion’s Club has been an
extremely active volunteer group
with the MS Society of Canada. Working
with the RONA MS Bike Tour – Leduc
to Camrose, they’ve been the lunch site
sponsor along the route at the agriplex
in Hay Lakes, Alberta. “We try and have
keep yourself well hydrated by drinking
plenty of fluids, especially cold, icy drinks.
Water is the best option, unlike caffeinated
drinks as they act as a diuretic.
Probably the most recommended and
beneficial strategy to beat the summer
heat while exercising is to pre-cool. Precooling
increases the length of time it
takes for the core body temperature to
rise. One option is to get into a bathtub of
cool water that is comfortably lukewarm
to start and continue to add cooler
water over a period of 20 – 30 minutes.
Submersion of the upper body in cool
water will provide the ideal benefit. If
you do not like taking a bath, have a
cool shower instead. Also remember
about 15 to 20 volunteers out there,”
says William (Bill) Savorn, President of
the Hay Lakes and District Lion’s Club.
Bill is a dedicated volunteer with the MS
Society, not only because his family has
been affected by MS, but also because
he enjoys giving back to the community.
“Whenever a Lion’s Club gets together,
that once you are finished your activity
or exercise you should cool down. It’s a
known fact that a cold shower or a swim
in tepid water is a faster way of getting
your temperature down than sitting in
an air-conditioned room whether precooling
or post-cooling.
It is important to note that sensitivity
to heat does not just happen in the
summer. You can also overheat in the
winter if a room is too hot or humid. So,
the suggested strategies can be used
all year around. Remember, don’t be
discouraged by the heat of the summer
months. Find those strategies that work
best for you, because you can beat the
heat and be active now! For additional
ideas on beating the heat while being
active, contact the MS Society by phone
(1-800-268-7582) or email (active@
mssociety.ca).
problems get smaller and communities
get better,” says Bill. “That’s because we
help where help is needed – in our own
communities around the world – with
unmatched integrity and energy.”
Cyclists come to Hay Lakes for a
quick break after a grueling morning on
their bikes and the Hay Lakes and District
Lion’s Club enthusiastically greets the
bike tour participants and ensure that
the cyclists are well fed and having the
best day possible. “We help to set up the
lunch site, unload the food, and make the
lunch run as smooth as possible,” says
Bill. The Hay Lakes and District Lion’s
Club’s passion for helping others with a
smile is far from unnoticed.
The Hay Lakes and District Lion’s
Club has been the back bone for the
lunch stop on day two of the bike tour
year after year, going above and beyond
to help make this stop on the event
possible. “The Hay Lakes Lion’s Club
is an enthusiastic group that will help
with anything and everything on event
day,” says Keltie Tichkowsky, Bike Tours
Manager with the MS Society, Alberta
and Northwest Territories Division.
“They’re passionate about the cause and
we can’t thank them enough for all they
do.”
MS Connections Summer 2011 9

234 MS researchers and trainees in Alberta - more than 800 nationally
MS Researchers meet in Calgary
Success of endMS Research and Training Network continues
Last May, 45 MS researchers
from across Canada gathered
in Calgary as the Alberta
endMS Regional Research
and Training Centre (RRTC) hosted a
series of MS workshops and lectures.
(For more information on the Alberta
endMS RRTC, see the Fall 2010 issue
of MS Connections, available at: http://
mssociety.ca/alberta/publications.htm)
“The cause and
cure for this
dreaded disease
will be found.”
From May 23 to 27, 2011, the Alberta
endMS RRTC hosted the third annual
week-long series, with this year’s focus
being “Neuroprotection and Repair: From
Bench Research to Clinical Application.”
The study week began with a
welcome dinner on May 23, highlighted
by an address from Dr. V. Wee Yong,
Director of the Alberta endMS RRTC.
Dr. Yong spoke about the tremendous
strides that have been made in MS
research over the past few years, and
sincerely predicted that more important
information would be uncovered shortly
because of the increased number of
brilliant young researchers who were
joining the Canadian endMS Network.
He thanked the MS Society of
Canada for its dedication in funding the
Network, including significant support
from the Government of Alberta, and
from many individual donors. Dr. Yong
recognized Ms. Gayelene Bonenfant
of Calgary for her donation. Gayelene
was present during the evening and
10 MS Connections Summer 2011
From left, Dr. Wee Yong, Director of the Alberta endMS RRTC, Gayelene
Bonenfant, who was recognized for her generous donation to the endMS
Network, and George Jacob of the MS Society, Alberta and NWT Division.
also introduced Ms. Verlyn Leopatra, a
recipient of the MS Society Scholarship
Program.
The endMS Research and Training
Network consists of five Regional Centres
across Canada. The Alberta Centre is
based at the University of Calgary, with
researchers and research trainees also
working at the University of Alberta and
the University of Lethbridge. There are
now 234 MS researchers and trainees in
Alberta, and more than 800 nationally.
As Dr. Yong said, “the cause and cure for
this dreaded disease will be found.”
Husky Community Rebate Program
The Husky Community Rebate Program is an easy way to raise funds for the
MS Society by purchasing gas! Husky sends a rebate to the MS Society of 2%
of the purchases cardholders make at Husky or Mohawk stations or Husky
House Restaurants. In one quarter over $23,000 in gas was purchased and
we’ve received nearly $2500!
Call now to get your Husky Community Rebate Card! Contact Jill Opalka by
email at jill.opalka@mssociety.ca or by phone at 780-463-1190.

My
MS
A personal account of one person’s
challenge living with MS
Sandi Arnold
Red Deer, AB
Imagine not being able to go
outside on a hot sunny day, ride
a bike on a trail among the trees
and streams, go for a long walk
among the crunchy autumn leaves or
dance to your favourite song. These
are some of the things I miss the most.
“If you are
wondering if your
donation will be
put to good use,
I’m here to tell
you that it will.
Not only for me
but for many
others like me.”
People say “Oh, but you look so good”,
not knowing that you had to take a
2-hour nap prior to going out, and they
don’t see you collapse on your bed in
pure exhaustion when you get home.
When you have MS you learn
to appreciate all the little things you
can do such as bathing, dressing
yourself and brushing your own hair
before someone has to do it for you.
You pose for pictures standing up
before you’re permanently in a wheel
chair. You smile as much as you can,
remembering the time when half your
Story
face lost all feeling and drooped for 3
weeks. You tell your friends and family
that you love them every day for the
times when you lose the ability to speak,
and you take in all the beautiful views and
colours in case you lose your sight again.
A sense of humour also helps, especially
when I was learning to walk again.
The MS Society helped me when I
had chemotherapy; they supplied me
with a vest so I could go outside in the
summer. They also helped me get a
portable air conditioner to stop me from
overheating and getting sick indoors.
Watch a SHAW TV newsclip
of Sandi on YouTube. Search
RRSANDIMS.
Sandi Arnold (right) at the 2011 Red Deer Enerflex MS Walk with some of her
teammates from her Walk Team, “Sandi’s Angels.”
These are just a few examples of
the help I have received due to the
kindness and donations from people.
They have made it all possible! I am so
very thankful.
If you are wondering if your
donation will be put to good use, I’m
here to tell you that it will. Not only for
me but for many others like me. A cure
is on its way and it is my wish that no
one will ever have to suffer from this
disease again.
Much Love, Sandi Arnold
MS Connections Summer 2011 11

U of A medical research discovery demonstrates
potential MS therapy could kill brain cells
MS Society funds innovative research project
Researchers with the Faculty
of Medicine & Dentistry at
the University of Alberta
have discovered that some
“protective” T-cells can kill neurons. This
finding is significant because a specific
type of T-cell therapy is being touted in
Dr. Fabrizio Giuliani, seated, and his post-doctoral
fellow, Yohannes Haile, discovered that a specific
type of T-cell kills neurons. The finding is significant
because some people in the medical community had
talked about using T-cell therapy for MS patients.
the medical community as a potential
treatment for MS and other autoimmune
conditions.
Dr. Fabrizio Giuliani and his postdoctoral
fellow, Yohannes Haile,
both from the Division of Neurology,
collaborated on this research which
was recently published in the Journal
12 MS Connections Summer 2011
of Leukocyte Biology, a peer-reviewed
medical journal.
“Using T-cells has been seen as a
potential treatment for autoimmune
diseases,” says Dr. Giuliani. “But these
cells that are supposed to be regulatory,
when activated, they can kill. In our
hands, at least, they were
able to kill neurons. So
this is very important.
In MS literature, they were
starting to talk about using
the infusion of these cells as
treatment. This area needs
to be studied more before
these cells are used as a
therapy for MS patients.”
The finding was
serendipitous, says Giuliani.
“We were using some
of the cells that we have
described here as a control
in our project. And then
the T-cells did something
interesting, something we
weren’t expecting. In fact,
we were expecting the
exact opposite response
with these cells.
“We were looking
at how a specific type
of T-cell could prevent
neuronal death and then we
found out they were doing
the killing…These are the
best findings – when you
are expecting something
different and then you
observe an amazing
phenomenon.”
T-cells are very important – their
primary role is to attack foreign viruses
or bacteria and to regulate or maintain
immune system tolerance. However,
when T-cell tolerance is disrupted, they
can cause autoimmune diseases.
Researchers in the medical community
have thought if they could carefully
collect regulatory T-cells and inject them
into patients with autoimmune diseases,
these T-cells could keep autoimmune
diseases under control. Work with lab
models that had MS and were treated
with T-cells was promising. However,
recent studies of human cells have shown
“Using T-cells has
been seen as a
potential treatment
for autoimmune
diseases. But
these cells that
are supposed to be
regulatory, when
activated, they can
kill.”
humans have different subpopulations
of T-cells – some of which do not have a
regulatory function.
Giuliani and Haile worked with
different subpopulations of T-cells and
discovered some were toxic to neurons.
Giuliani and his colleague are the first
medical researchers to demonstrate that
activating a specific type of T-cell can
kill brain cells. They want to continue
their work in this area to determine what
causes some T-cells to behave this way.
“We want to take the research
further. We want to continue this story in
an attempt to try and solve the mystery.”
Their research was funded by: the MS
Society of Canada, the University of
Alberta Hospital Foundation and the
Canadian Institutes of Health Research.

St. Paul man
makes huge
impact in Lakeland
MS diagnosis requires
making changes
Gerald McCormack was diagnosed
with MS in 2007 but doesn’t let it
get him down. On the contrary, he makes
the best of the situation. “I have changed
my life around totally,” he says. “I have
different wants and needs now.” Gerald
lives in Cold Lake with a supportive wife
and his three children (one is married
and not living at home anymore) whom
he says, “have given me a phenomenal
amount of support.”
Gerald has been involved with the
Lakeland Regional Office of the MS
“I have changed
my life around
totally. I have
different wants and
needs now.”
Society since the office opened in 2009
and has met many new friends along the
way. “It’s not what the MS Society does
financially, but how it is so personable,”
he says. In the last two years, Gerald
has been extremely involved with the
Lakeland Enerflex MS Walk and even
captains his own team, Team Mac. “I do
the walk for two reasons: #1 is to raise
money to try and help others with MS; #2
is to raise money for research. Someday
I want to know what has caused MS for
me,” he says. Team Mac has raised over
$16,000 since 2010!
Gerald and his team plan on walking
again next year, and Gerald himself
will continue to eagerly participate in
the programs offered by the Lakeland
Regional Office.
Walking for Mom
Diane Mottl and her husband Rick at the Enerflex MS Walk in Calgary.
Diane and Rick were walking for Diane’s mom, Bernice, who lives in Peace
River and has MS. Diane’s dad, Ed Roski, volunteers with the North Peace
region of the MS Society and plays a large part in organizing the North
Peace MS Trail Ride.
MS Support Groups in Alberta
Battle River /Wainwright — call Teresa at 780-755-2226.
Brooks — call the Southeastern Chapter office at 403-529-6797.
Calgary — call 403-250-7090 for further information.
Drumheller — call Karen at 403-820-7863.
Edmonton — call 780-471-3034 for further information.
Fairview — call 780-835-4868 for further information.
Hinton — call Geke at 780-740-5692 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 403-328-7002 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 Brenda at 780-645-3441 ext 226 for further information.
MS Connections Summer 2011 13

AMBASSADOR PROFILE
Reaching out to the Drumheller-and-area
community
A United Voice for the
Cause and Cure
In 1994, while lying in the hospital
after her recent diagnosis of multiple
sclerosis, Deb Wynia of Drumheller
was visited by Colleen Harris from
Deb Wynia (right), here with Doug Tokaryk of the
MS Society, and Dr. Penny Smyth at the 2010 MS
Awareness Event in Drumheller.
14 MS Connections Summer 2011
the MS clinic who provided her with
information about MS and the MS
Society of Canada. At that time no
MS Society services were available in
Drumheller, so Deb joined the Calgary
Chapter to get information and found
that “there are ways to manage some
of my MS symptoms, and I might never
have to be in a wheelchair.”
Drumheller started an MS Walk
in 1999, laying the foundation for the
creation of a Drumheller chapter of the
MS Society, which
opened in 2000. Since
the walk’s formation,
Deb has held various
positions on the chapter
board and served on
provincial committees
to spread MS Awareness
throughout her
local community,
including publishing a
newsletter six times per
year on behalf of the
Drumheller & Area MS
Society. The newsletter
is available to people
in the Drumheller
area who live with
MS. “It seems to be
well received,” says
Deb. “I try to ensure
at least one joke is
in every issue, as I
believe laugher is good
medicine.”
Recently, Deb
has been involved with
the MS Society’s Reada-Thon
program as a
presenter at school
assemblies, which has
been a very positive
experience for her.
“I realized that I love
talking to children about MS. They are so
interested and have so many questions,
and most importantly they are nonjudgmental.
This is the age where MS
Awareness should start!”
“I became an
Ambassador...to be
the local face for
people to approach
to discuss their
day-to-day
challenges....”
Deb is dedicated to promoting MS
Awareness and is an MS Ambassador
who has been involved in the program
since it began in 2007. “I became an
Ambassador when I realized that there
was a need in my rural community to
spread awareness about MS, and to be
the local face for people to approach
to discuss their day-to-day challenges
or lending a shoulder for them to vent
on!”
Deb’s key to success in spreading
awareness in Drumheller is her
relationship with the local media. “They
are very supportive of the cause and vital
in the quest to inform and teach people
about this disease.”
While Deb says she has learned a
lot about MS through the MS Society,
another crucial source is the other
wonderful MS Ambassadors across the
province. “I would encourage anyone and
everyone interested in MS to become an
MS Ambassador. The more people we
have spreading the word, the closer we
come to achieving the mission of the MS
Society of Canada, to END MS.”

Ask
Jeannine
When do I need an
indwelling catheter?
Answer: If you are having a lot of bladder
infections you need to find out if you
are actually emptying your bladder
when voiding. This can be determined
by having a bladder scan at the MS
Clinic or by ultrasound at a radiology
department. At the clinic you will be
scanned before voiding and after voiding.
For someone with MS the usual residual
of 100cc’s means you need to learn to
intermittent catheterize. That means you
insert a small tube (catheter) into your
bladder 3-4 times daily. This is the best
treatment for residual urine resulting in
bladder infections. If you are unable to
Jeannine Christopherson, a MS nurse and retired
Outreach Coordinator with the MS Society, Edmonton
Chapter, will answer your questions about MS.
If you would like to ask Jeannine a question, email it to
info.alberta@mssociety.ca or call the editor,
Angie Mah, at 780-463-1190 or 1-800-268-7582.
self catheterize someone else can be
taught to do this. If your residual urine is
200cc’s or more and you are unable to
self catheterize you may need to have an
indwelling catheter.
Are there problems
due to an indwelling
catheter?
Answer: Possible side effects include
infections and bladder stones; if you drink
approximately 3000cc’s (6 – 500 cc
bottles) of fluids per day, infections will
be held to a minimum. Without infections
the likelihood of bladder stones is quite
small. If an infection does occur you need
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 find 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 office for
many years. Jeannine has worked with the MS Clinic as the Nurse Coordinator
and at the Edmonton Chapter on their Client Services team.
medication quickly as someone with
MS becomes very weak with a bladder
infection. When one has an indwelling
catheter it can become blocked by
sediment, particularly if fluid intake is
restricted. If this occurs someone with
MS gets infected quickly and this can
lead to sepsis. Sepsis means a blood
infection that is systemic and the person
needs hospitalization for IV antibiotics.
The conclusion is that enough fluids need
to be ingested to keep the urine clear.
Many people do very well with indwelling
catheters. Your doctor will advise you
what method you need to use to manage
infections. Sometimes increasing fluid
intake is all that is required.
Just a call or email away
Alvina Hughes
780-475-8255
alvina.hughes@mssociety.ca
Jeannine Christopherson
jeannine.christopherson@mssociety.ca
MS Connections Summer 2011 15

Renovating a bathroom space
to be accessible can get quite
complicated. If an existing
bathroom is too small for individuals with
disabilities, especially those who use
wheelchairs, then a major modification
is often required. Constructing a larger
barrier free bathroom requires plumbing,
electrical, and often structural changes.
It also means that other spaces, such as
bedrooms, are compromised to make
room for the larger bathroom. Sometimes
there is simply no extra space to allow for
this to happen.
Most residential
bathrooms are designed
and constructed with little
thought towards future
renovation work, especially
when this work would be
required for a person with a
disability. The following are
the key concepts required in
the design and construction
of new or renovated
residential bathrooms.
1. Bathroom size
2. Framing
3. Showers
4. Bathtubs
5. Toilets
6. Counters and Sinks
7. Faucets
8. Grab Bars
9. Mirrors
10. Interior Finishes
Ron Wickman
BA, BEDS, M. Arch.,
Architect, AAA, MRAIC
16 MS Connections Summer 2011
Accessibility
THE RESIdENTIAL BATHROOM
Obviously, the home must be designed
to provide access to the bathroom door
and the door must be wide enough
for a person with a disability to get
through; a door that is 3’-0” wide is
best. A bathroom and bedroom directly
connected by a door allows persons with
greater mobility limitations, and persons
who use a ceiling transfer lift to move
from bed to bathtub, shower, or toilet to
function more independently and easily.
1. Bathroom Size: In most cases, a
bathroom should be large enough to
allow a person in a wheelchair to turn in a
5’-0” diameter. For some individuals who
use larger wheelchairs or scooters, this
turning diameter could be up to 8’-0”.
Generally, a bathroom that measures
8’-0” x 8’-0” will be large enough to
house a 5’-0” x 5’-0” wheel in shower
plus a toilet and sink – 10’-0” x 8’-0” if
you would also like to house a bath tub.
2. Framing: In new house construction,
framing a universally designed bathroom
is easy. Framing all of the bathroom walls
and ceiling with 3/4” plywood, floor to
ceiling, allows for the future installation
of grab bars, handrails, and ceiling lifts.
Framing the floor of the bathroom with
joists shorter than the rest of the home
allows for the construction of a curb-less
wheel-in shower. All of this framing is
significantly more difficult and expensive
to complete in a house renovation.
3. Showers: The custom built curb-less
wheel-in shower is the best
design to accommodate as
many people as possible.
One very useful product for
a bathroom renovation and
shower area is a water dam.
This is a flexible “sponge
like” product that is fixed
to the floor at the entrance
to the shower area. It is
one inch high to keep the
water in the shower area,
and easily flattens when
stepped on or wheeled
over.
4. Bathtubs: In most
cases, persons who use
wheelchairs either use a
bathtub seat or ceiling lift.
However, these accessories
often require assistance to
afford access in and out of
the bathtub for the person
in a wheelchair. Another

option is to use a bathtub with a door.
Most of these types of bathtubs can fit in
the same space as a typical existing tub,
making renovations work much easier. A
bathtub with a door cannot be used by
someone in a wheelchair; however, it can
be very useful for persons with mobility
limitations including our rapidly aging
population.
5. Toilets: The recommended height
for a toilet is to be the same height of a
wheelchair used by a person wanting to
transfer. The most common height of a
toilet is 14 inches, and the tallest toilet is
18 inches; toilets also come in heights of
15, 16, and 17 inches. Existing toilets can
be modified by adding a two to four inch
base piece or a two to four inch raised
seat. An extremely useful item that can
be added to an existing toilet is a bidet
seat. Toilets should be elongated and
provide sufficient space, at least 3’-0”,
on one side of the toilet to afford for a
parallel transfer for an individual in a
wheelchair.
6. Counters and Sinks: The key to proper
height placement of the countertop
is to keep the counter to a minimum
thickness. This maximizes the ability
to keep the countertop low enough for
those users in wheelchairs to reach into
the sink; the countertop can also be
high enough to allow the same users
in wheelchairs to get underneath the
counter. Sinks should be shallow enough
to allow persons in wheelchairs to get in
underneath. Also, it is important to keep
users’ legs from coming into contact with
exposed hot pipes. To prevent potential
burns to legs, the pipes can be insulated
or a protective panel can hide exposed
pipes. A third, and my preferred, option is
to set the sink pipes as far back up against
the wall, where one’s legs could never
come into contact with exposed pipes.
7. Faucets: Single lever handle, as
opposed to two (hot and cold) faucets
make it easier to turn the water on
and off; people who lack strength in
their arms, people with arthritis, and
people with artificial limbs often cannot
grasp a round faucet. Thermostatically
controlled faucets are also important for
those individuals with limited feeling in
their hands. Faucets controls can also
be mounted at the side of sinks to allow
for easier access for those people who
cannot reach very far. Offset controls
should be provided for bathtubs and
showers. Hand-held faucet heads with
flexible hoses attached to a vertical wallmount
bar should be used in bathtubs
and showers.
8. Grab Bars: Grab bars are fixtures
that assist persons to transfer onto and
back off a toilet. They can also be used
around bathtubs, shower areas, counters,
and walls to assist those persons with
balance issues. A good rule is to that too
many grab bars is better than not enough.
Today, grab bars are designed to fit in
with any décor of a residential bathroom
9. Mirrors: The preferred solution for
bathroom mirrors is to bring the mirror
right down to the top of the countertop;
this allows both individuals who are
standing or who are in a wheelchair to
effectively use the mirror. A magnifying
mirror located in a bathroom is especially
useful for persons with visual limitations.
10. Interior Finishes: Floor finishes in
residential bathrooms should be level,
non-slip, and durable. A color contrasting
border on the wall and floor assist
those persons with visual limitations
understand the boundaries of the room.
Floor and wall finishes must be nonglare
and non-pattern. Color contrast
improves accessibility for person with
visual limitations; countertop edges, door
handles, grab bars, and light switches
should contrast in color to surrounding
surfaces. Color contrast bands should
also be used around accessories such as
toilet paper dispensers, light switches,
and towel racks. Towel racks should
be mounted as securely as grab bars
to support people should they lose
their balance. General lighting should
be combined with well positioned task
lighting.
MS Connections Summer 2011 17

MS Yoga one of many programs in
Lakeland area
In the last few years the MS Society
– Lakeland Regional Office has
introduced a variety of programs
and services to St. Paul and Bonnyville
and plans to expand its reach to Cold
Lake. “Our current programs are very
successful,” says Brenda Hamm, Client
Services Coordinator with the Lakeland
Regional Office. “I’m excited to be
involved in the Lakeland Chapter and
about starting new programs this coming
fall.”
The Yoga program in Bonnyville is
accessible to all mobility and age levels.
The program helps participants focus
on breathing as well as stretching and
strengthening to improve circulation
and flexibility. “I really enjoy the
Yoga program because it gives me an
opportunity to be with other people
who have MS,” said Lil Batke, a regular
participant. “We get to work together and
I find it very helpful in strengthening my
muscles.” The Yoga program runs once
a week and they are always looking for
more people to come and join.
Once each month the Brown Bag
Lunch group gets together for a short
information session with a guest
speaker, followed by a community group
18 MS Connections Summer 2011
Local residents listen to a guest speaker at the Bonnyville MS Brown Bag Lunch
while enjoying a homemade meal.
atmosphere where people can talk about
anything on their minds. In one meeting,
local resident Faye Paul expressed the
need for a place where people could
find information on services beyond the
MS Society that are offered for people
with MS. “Nobody knows where to go,
nobody’s knowledgeable about what
is offered. For example, if I wanted to
have someone wash my walls, is there
somebody I can hire that could come in
and do them? I don’t mind paying, but I
don’t know where to access it.” This is an
extremely important topic for people who
have MS that the MS Society has been
investigating.
The MS Society – Lakeland Regional
Office also has a Gabba and Java
(formerly Coffee Time) program and is
working at bringing more programs and
services to the entire Lakeland Region.
“I really enjoy coming to the Bonnyville
and St. Paul MS Society because it’s the
people that I meet and interact with,
they’re really great and they’ve sort of
broadened my horizons about MS,” says
Bonnyville resident Gerald McCormack.
For more information about these
programs or other
programs offered by
the Lakeland Regional
Office, please call the
office at 780-645-
3441.
The Bonnyville
MS Yoga program
provides a stressfree
experience
where people of all
levels of mobility
can participate
in a muscle
strengthening
exercise.

!
!
!
Safeway Pharmacy
MS Connections Conference 2011
A Conference for Albertans Affected by MS
Registration Form
Name: Address:
September 30 & October 1, 2011
Courtyard by Marriott Edmonton West, 10011 - 184 St. Edmonton
City: Prov: Postal Code:
Day Phone: Other Phone:
Email:
Cost per person (Lunch provided on Saturday) * Subsidies available
MS Society member: $ 50 Non-member: $ 75
Payment Options Cash Cheque (Payable to “MS Society Edmonton Chapter”) Visa Mastercard Amex
Credit Card Number Expiry
Signature
KEYNOTE PRESENTATIONS
Inspiration: The Biology of Hope
Maureen Manley
STARKY MEMORIAL LECTURE
Origins of MS
Dr. Amit Bar-Or
Building Inclusive Communities for All
Dr. Al Condeluci
29 Gifts: How a Month of Giving
Can Change Your Life
Cami Walker
Hotel Information:
Booking Codes:
MSCMSCB - Double Queen Rooms
MSCMSCA - King Rooms
Accessible Rooms - Guests
requiring accessible rooms should
call Sarah Curran at 780-638-0125.
Enter the appropriate code at:
http://cwp.marriott.com/yegew/
mssociety/ Or call Marriott
reservations at: 1-888-281-1242.
TRACKS - October 1
10:15 am - 11 am - CHOOSE ONE
Track A -1
Understanding the Research Process:
Clinical Trial Participation
Dr. Penny Smyth
Track B -1
The Case for a Provincial MS Strategy
Neil Pierce and Dr. Garry Wheeler
11:15 am - 12 pm - CHOOSE ONE
Track A -2
New Therapies an overview
Dr. Fabrizio Giuliani
Track B -2
Vitamin D and Nutrition in MS: Bones,
Bowels and Beyond
Heather Hanwell
2:15 pm - 3 pm - CHOOSE ONE
Track A -3
Status of CCSVI Research (a balanced
perspective)
Dr. Katherine Knox
Track B -3
Cultural Shifting – Break Out Session
Dr. Al Condeluci
Registration deadline:
September 23, 2011
Please send form and payment to:
MS Society of Canada
Edmonton and Capital Region Chapter
150, 9405-50 Street
Edmonton, AB T6B 2T4
For more information:
Phone: 780-471-3034
Toll Free: 1-800-268-7582
Email: info.alberta@mssociety.ca
Register online at:
www.mssociety.ca/alberta/
connections
MS Connections Summer 2011 19

Our role in a changing political landscape
Alberta politics are about to change,
as members of the Conservative,
Liberal, and Alberta Parties go to
the voting booth to choose new leaders.
A provincial election is also coming soon.
What is our role in the election process?
First, we must ask ourselves: what do we
want from our elected officials? What
are the issues that are important to us?
How will each candidate impact these
issues? It is a good idea to research
what politicians stand for and the issues
they plan to address in the legislature if
they are elected. By understanding each
campaign, we will be able to determine
which candidate best represents our
vision for the province’s future.
Alberta’s political parties have their
own rules regarding membership and
voter eligibility for party leadership
elections. Memberships cost between
$5 and $10, and they allow people some
involvement in a party’s decision-making
processes. To learn more about the
province’s political party leadership races
and voter eligibility, visit the following
websites:
• Progressive Conservative Association
of Alberta - www.albertapc.ab.ca
• Alberta Liberal Party - www.
albertaliberal.com
• Alberta Party - www.albertaparty.ca
As party leadership campaigns
develop, a provincial election is also
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
20 MS Connections Summer 2011
building. The proposed date for the
provincial election is March 2012, with
some suggesting that it could occur
earlier. It is important that the disability
community learns about all of the
parties that are seeking leadership of
the province. We encourage people with
disabilities and their families to speak
with candidates who want to represent
the communities where we live. In order
for our voices to be heard by those whose
decisions impact our lives, we must talk
to candidates and let them know our
vision for Alberta’s future. After all, the
voice of an elected official is the voice of
the people whom he or she represents. In
this way, politicians come to understand
our unique perspectives on a variety of
important issues that affect our lives.
In Alberta, every person of legal
voting age has a say, and we express
our views by voting. So let us educate
ourselves and take an interest in the
political process by casting a vote for the
person with a strong vision for Alberta.
Reprinted with permission from Alberta
Committee of Citizens with Disabilities.
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