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Spring-Summer 2017
FEATURE STORYCaptain Jack:
A Canadian
MS champion
ACTION ON MSChronic illness in
the workplace
LIVING WELLNutrition
and MS
RESEARCHBodies in
motion
MS Canada, Spring/Summer 2017
Multiple Sclerosis Society of CanadaSuite 500, 250 Dundas St W, Toronto, ON M5T 2Z51 800 268-7582 F: 416 [email protected] mssociety.ca/mscanadaCharitable registration no. 10 490 2523 RR0001Cover photo: Jack MacDuffISSN 0315-1131Canadian Publications Mail ProductSales agreement no. 40063383
President and chief executive officer: Yves SavoieEditor-in-chief: Jody FiorinoManaging editor: Meaghan Kelly
Editorial committee & contributorsAngelica Asis, researchCathy Nidoski, BC & Yukon DivisionCéline Patenaude, Quebec DivisionJenna D. Macdonald, Atlantic DivisionJon Waldman, Manitoba & Saskatchewan DivisionsJudith Kays, Atlantic DivisionJulie Crljen, Ontario DivisionJulie Kelndorfer, government relationsMegan Newman, Alberta & NWT DivisionNelson Augustin, BC & Yukon DivisionPam Seto, marketing & communicationsPeter Schwarz-Lam, researchSarah Olivieri, Alberta & NWT DivisionSylvie Bastien, Quebec Division
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O U R M I S S I O N : To be a leader in finding a cure for multiple sclerosis and enabling people affected by MS to enhance their quality of life.
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Spring-Summer 2017
FE ATURE
Captain Jack:
A Canadian MS champion
4
informRESE ARCH
Bodies in motion: Wellness research and MS
7LIVING WELL
Have your cake and eat it too: Nutrition and MS
9
relateMY MS JOURNEY
Life requires movement:
A physical therapist’s life with MS
by Jo-Anne Howe
11PR ACTICAL MAT TERS
Off the beaten path: Travelling with MS
13
actFUNDR AISER SPOTLIGHT
A very long ride to end MS
14 FLEE OR FIGHT
One step at a time
15ACTION ON MS
Chronic illness in the workplace
16
Message from Yves
18Notice of AGM and proxy
19
For more stories
like these, check blog.mssociety.ca or
find us on social media @mssocietycanada
MS CANADA Spring-Summer 20174
In 1976, Jack MacDuff led his curling team
from St. John’s, Newfoundland to number
one at the Brier – Canadian curling’s highest
honour. At only 26 years old, Jack was on top
of the world.
A couple of years ago, Jack spoke at a
sports awards dinner for youth. He stressed the
importance of staying in the game. “Keep your
head on straight and keep going – lean on your
teammates and your coaches and you will be
the best you can be.”
The best that Jack is everyday reveals a
strong-willed, thankful and witty man, who
just happens to live with primary progressive
multiple sclerosis.
Jack started curling around the age of 13
and as the sport grew, so did Jack’s desire to
play competitively. While he attended Acadia
University, he played for the school team.
In 1971, while visiting a friend and curling
adversary in St. John’s, he was invited to
curl for the Newfoundland team and study
at Memorial University. Young and carefree,
Jack eagerly accepted the offer.
The following year, that curling team went
to the Brier. Jack, playing third, was just 22.
Getting a taste for what winning on a national
stage could feel like, Jack began setting himself
up to get there again.
Four years later, he did just that. As the
skip, Jack got his young but enthusiastic team
to the Brier. They weren’t expected to do well.
Captain Jack A Canadian MS champion
5
Nevertheless, the rocks kept sliding their way and
they started winning, knocking other teams out.
“Then the underdog became the team
that the whole country was cheering for,” says
Virginia Kays – an avid curler and fan at the time.
“During that final game, the whole country held
its breath waiting for that last rock to slide from
one end of the rink to the other. Before the
Brier that year, no one really knew Jack MacDuff
or the ‘fellas from Newfoundland’, but by the
end of that final game, everyone knew their
names and everyone was cheering for them.
It was an unforgettable and legendary moment
in Canadian curling.”
The Newfoundland team’s success that
year has not been repeated for 40 years to date.
It is such an accomplishment that the Canadian
Curling Association invited Jack and his team-
mates to participate in the opening ceremonies
for this year’s Brier in St. John’s. For Jack, it’s a
thrill and gives him a chance to cheer for the
new kid. Brad Gushue and his team have been
favourites for the past few years and Jack is one
of many rooting for them to win and steal the
thunder back for Newfoundland and Labrador.
Jack and his wife Janet relocated to New
Brunswick in the early 1980s, and settled into a
wonderfully normal life. Jack enjoyed a success-
ful career with General Motors and Janet worked
at home – looking after their house and three
young children. Always the athlete, Jack con-
tinued to stay fit: he curled, golfed, went to the
gym and he and Janet enjoyed cycling together.
Then one day in 1989, while golfing,
Jack noticed that he couldn’t focus on the ball.
He brushed it off at first, but when his golf scores
kept getting worse, he knew there was something
wrong. After two years of doctor’s visits and
trips to the neurologist, Jack got the news.
He remembers hearing the words, “We think it’s
multiple sclerosis.” At that time, that was the end
of the conversation. There wasn’t anything else
to talk about, no information about symptom
management, no details about the kind of MS he
may have, and no advice on what to do next.
This was common for people diagnosed
around this time. Treatment options were still in
trial stages and doctors were reaching to piece
together the MS puzzle and all of its complexities.
So, Jack got glasses and went on with his
life, golfing, working and being active. For the
next 10 years, he felt good.
As the world waited and worried about
Y2K, Jack worried about his health. Mobility
and balance issues began affecting him. He felt
unstable when he moved and found it difficult to
walk. Doctors concluded that Jack, now 50, had
primary progressive MS – the same disease that
would put his younger sister in a wheelchair a
few years later.
“I got the news – there were no medications
to help me, no cure in sight, so I thought –
okay, I can do this.” Jack’s positive attitude
towards life has helped him cope with having MS.
“My doctor used to say he loved seeing me in his
office because no matter what news he gave me,
I could make him laugh.”
At first, Jack needed a cane to walk. Then
he used two canes. He moved to a walker, and
now Jack uses a wheelchair or scooter to get
around. Jack’s day now consists of getting as
much exercise as he can by lifting weights and
wheeling himself around town. When asked
why he stays so active, he answers simply and
profoundly, “Because I can.”
Captain Jack A Canadian MS champion
Jack MacDuff (front left and then clockwise), Doug Hudson, Ken Templeton and Toby McDonald took home the title at the 1976 Brier in Regina.
MS CANADA Spring-Summer 20176
As part of Jack’s dedication to activity, he
got involved with the New Brunswick MS Bike
Tour about 12 years ago. While he couldn’t ride
a bike, he did just about everything else. Jack
captains the Slow Spokes team, cheering on
the participants, especially his teammates, who
make up the largest team in the event.
Jack has achieved the event’s top fundraiser
status for the past three years, raising more than
$66,000. He is also the creator of a raffle draw
that all Atlantic event participants can use to
fundraise. The raffle raises more than $20,000 a
year and Jack is thrilled every time he hears the
totals that always surpass his expectations.
While Jack has decided to retire from
being involved in MS Bike in 2016, he is ready
to be involved in other ways: “I’d like to do
the MS Walk in my wheelchair this year. When
you have limits, you just adjust your goals and
dreams accordingly.”
There’s no doubt that Jack is grateful for
the life he’s had. He’s seen and felt success in
@MSSocietyCanada
his play, work and family. “What more could a
person ask for, really,” he says. “I have a wonder-
ful and supportive wife and family; my children
are grown and living good lives and I have
tremendous friends and acquaintances who have
helped me along the way. I wouldn’t be where I
am without all of them.”
“Jack has this extraordinary positivity that
never gets him down,” says Kim Wilson, a close
friend of Jack’s and the chair of the board of
directors for the MS Society’s Atlantic Division.
She is also a loyal member of the Slow Spokes
MS bike team. “Jack’s courage and spirit inspire
us to keep going despite any challenges life may
throw our way.”
“If you want to do something, you try your
best to do it and you don’t give up,” he says.
“I know there are a lot of people, researchers and
doctors, trying very hard to find a cure for this
disease and I believe that someday, there will be
help. Probably not for me, but it may help the
next generation, and if that’s the difference that
I can help make, that goal is just fine with me.”
“What I’d like to say to anyone, whether
it’s a young athlete, an underdog at the Brier, or
someone newly diagnosed with MS, is to take
every day and do the best you can and remem-
ber, you are never alone on your journey.”
That day in 1976 when Jack and his team
won the Brier, he was on top of the world. Today,
40 years later, Jack stills feels like he’s one of the
luckiest men around.
The 2017 Canadian Brier took place from March 6-10. For an updated version of this story including results from the competition, head to our blog at blog.mssociety.ca/2017/03/jackmacduff.
Canadians continue to wait for news on Ocrevus, the first disease-modifying therapy for adults living with progressive MS. For up to date information on its availability, visit mssociety.ca.
The federal government recently completed public consultations on accessibility in Canada. Follow us on social media for results on these surveys and more.
7
ResearchBodies in motion: Wellness research and MS
One of our goals is to increase engagement
from the MS community in driving our research
investments. To help achieve this goal we con-
ducted a survey to gain a deeper understanding
of what wellness means to people living with MS.
The survey results showed that there is
a strong desire for more information around
wellness, including nutrition, physical activity,
and emotional wellbeing. Multiple sclerosis can
have enormous impacts on a person’s ability to
carry out everyday tasks, perform on the job,
engage in social relationships and live life to its
fullest potential. While for some managing MS
is possible with medication, there is growing
interest in other approaches to dealing with
symptoms and leading a healthy lifestyle.
Some of the results of our MS Wellness Survey under the physical activity section included:
To help address the need for more
information around wellness in MS, we
launched the Hermès Canada | MS Society
Wellness Research Innovation Grant (WRIG),
with a goal of translating research findings into
innovative wellness solutions that will improve
health and quality of life for people with MS.
Additionally, WRIG projects aim to engage
people affected by MS throughout the research
process. By engaging members of the MS
community, researchers are better equipped
to identify specific questions that are relevant
to the community. Through these studies, an
immediate impact can be delivered that can be
translated directly to people affected by MS in
the clinic, at home and in the community.
32%WHAT’S THE BEST
TYPE FOR MY ACTIVITY LEVEL?
23%WILL IT HELP DELAY
PROGRESSION OF MY DISEASE?
30%HOW WILL IT
AFFECT/MANAGE MY SYMPTOMS?
30%CAN’T ACCESS FACILITIES FOR
PHYSICAL ACTIVITY
For a full breakdown of the results of the MS Wellness Survey visit mssociety.ca/ms-wellness-survey
MS CANADA Spring-Summer 20178
Dr. Charity EvansImpact of a Pilates program
in multiple sclerosis
Pilates is a form of physical activity focused on movement and fostering a mind-body connection. Dr. Evans (University of Saskatchewan) will lead the first study in Canada to examine the impact of Pilates in MS. In collaboration with community co-investigator Jana Danielson, owner of multidisciplinary health and wellness studio, Lead Integrated Health Therapies, Dr. Evans will conduct a 12-week, single-blinded, randomized placebo-controlled study in 30 people living with MS to evaluate the effects of two 50-minute Pilates classes twice weekly, plus weekly one hour massage therapy, compared to massage therapy alone. The impact of the Pilates treatment will be assessed by comparing walking ability between the two groups. Measures of balance, flexibility, independent mobility, muscle strength and quality of life will also be looked at.
Dr. Katherine KnoxWeb-based physiotherapy
in moderate to severe MS
People living with MS can find it challenging to participate in regular physical activity for a number of reasons: exercise programs tailored to individuals with mobility impairments may be difficult to find, and exercise facilities such as gyms may be inaccessible due to geographic, economic, and/or mobility factors.
Dr. Knox (University of Saskwatchewan) will lead an interdisciplinary team of physio-therapy specialists, community health providers and people living with MS to address wellness through a web-based physiotherapy program for people with moderate to severe disability. The study will assess the adherence, acceptability and safety of the web-based exercise program in 45 people living with MS over six months. The study will also seek to answer questions such as: how do MS symptoms, emotional wellbeing, activity levels, and physical function compare over six months following web-based physiotherapy compared with usual care? A web-based approach may provide wellness benefits for persons with MS by being more widely accessible to people with disability.
Dr. Ann YehDevelopment of a mobile app
to increase activity levels in
teens with MS
Previous studies show a relation-ship between increased physical activity and lower levels of fatigue and depression in children and adolescents living with MS. Young people with MS tend to be highly inactive due to social, psychological and environmental barriers, which can prevent them from partici-pating in group-based exercise programs.
Dr. Yeh (University of Toronto) proposes to address this important issue by providing an accessible and sustainable alternative to group-based programs. By taking advantage of widespread access to internet and mobile devices among youth, Dr. Yeh and her team will develop a physical activity mobile app tailored to youth with MS and evaluate the usability of such an app. The app will include the ability for users to directly monitor their physical activity coaching features to help youth overcome barriers to activity; and social networking features to give youth with MS an opportun-ity to connect and support one another.
About the studies:
9
Living WellHave your cake and eat it too: Nutrition and MS
For more detailed information about nutrition and MS visit www.mssociety.ca/hot-topics/diet.
Research investigating the effects of diet on
the cause and treatment of MS is challenging,
as these types of studies are difficult to design
and control for. Nutritional clinical trials have too
many variables, unlike studying a specific drug
that researchers can control for different chem-
ical reactions. It is also difficult to find a large
cohort of participants willing to follow a strict
elimination diet for an extended period of time
without cheating.
Despite this, we know from listening to
people affected by MS that eating or eliminating
certain foods appears to be helpful in manag-
ing symptoms, and as new research methods
are developed and refined, we are learning more
about the impact of diet on MS.
Living with certain MS symptoms can make
regular tasks like shopping and meal preparation
more taxing. For example, trips to the grocery
store can make you tired or tremor can make
chopping vegetables difficult. An occupational
therapist can suggest energy-saving tips and
helpful equipment or adaptations. With careful
planning and with the support of your healthcare
team, you can adapt your diet to best suit your
MS symptoms and circumstances – even if they
change over time.
MS CANADA Spring-Summer 201710
Bowel dysfunction Dietary changes are often suggested as the first line of treatment for people with MS who experience constipation. Good fluid intake can help regulate bowel function, as can
a diet with plenty of insoluble fibre. A well-
balanced diet with plenty of fruit and vegetables can
provide this fibre.
Bladder problems Some people with bladder
dysfunction drink less to reduce their need to use the toilet;
however, drinking less can also lead to more concentrated urine, which can irritate the bladder and
increase the chance of urinary tract infections. Drinking six to eight
cups (about 1.5 litres) of water per day is generally recommended.
It is best to avoid large quantities of caffeine and alcohol as these
irritate the bladder.
Fatigue Try opting for smaller meals or frequent snacks rather than a
large, hot meal to help maintain energy levels. Protein or complex carbohydrates such as wholegrain bread can also help keep energy levels up. Eating too many sugary foods for energy can make fatigue
worse, as they cause energy peaks followed by lows. The same goes for drinks that contain a lot of caffeine, such as tea, coffee
and soda.
Tremor Moderate to severe tremor uses
up calories, so high-energy foods and drinks between meals might be
necessary to avoid weight loss or worsening fatigue. If tremor affects
holding or reaching for things, certain foods may be easier to eat
than others. A sandwich, for example, is easier to manage than spaghetti or soup. Specially designed cutlery, dinnerware and kitchen utensils can make the preparation and eating of
food more manageable.
Swallowing problems Modifying food textures may help, since some foods are swallowed
more easily than others. For example, nuts should be limited because they can stick in the throat and may be
irritating. Semisolid food is the easiest to swallow. In more difficult cases,
food may need to be puréed. If none of these techniques are effective, a feeding tube can be inserted into the stomach through the nose or
directly into the stomach, surgically, to maintain adequate nutrition.
Here are some ways you can be mindful of diet based on certain symptoms of MS.
11
My MS JourneyLife requires movementBY JO -ANNE HOWE
MS sets limits on what you can do on a moment-to-
moment basis. My overall goal in living with MS is to work
around those limits, and still have a satisfying life.
Throughout my 20s and 30s, I experienced numb-
ness, tingling and an episode of optic-neuritis.
My doctors weren’t able to confirm that it
was multiple sclerosis, but being a physiotherapist
specializing in neurological disorders, I was suspi-
cious. Since there were no available treatments
for MS at the time, I didn’t see the point in pushing
harder for a diagnosis.
As time went on, my ability to walk changed
and my left arm became less cordinated. In my
early 40s, I was diagnosed with MS.
Everything you do in life requires a
degree of movement. MS sets limits on what
you can do on a moment-to-moment basis.
My overall goal in living with MS is to work
around those limits, and still have a satisfying
life.
Now, in my mid-60’s, I walk with two
canes when I’m out, and without aids when
I’m in the house. With my background in
dance and physiotherapy, I try my best to
make exercise a regular part of my daily life.
Jo-Anne has worked as a physical therapist most of her life. She also lives with MS.
MS CANADA Spring-Summer 201712
While the evidence that supports the
importance of being physically active is
crucial, exercise, for me, means more than
that. It helps me feel in control of my MS
and I think of it as therapeutic me-time.
Exercise has a way of lifting my spirits and
even completely turning my mood around.
Physical activity doesn’t have to be part
of a regimen – dancing when I hear a song
I like on the radio, for example, is a way I
integrate activity into my daily life. I ride a
tricycle and I find the sense of speed and
movement liberating, especially since the
effects of MS have slowed my usual pace
of mobility considerably.
I have also noticed a big impact on my
energy level. I see exercise as a natural way of
combating fatigue, when done regularly.
After sitting and working at the computer
for long hours, I feel the urge to get up and get
moving. I take my walker out so I can walk more
quickly around the block, get some fresh air and
energize myself.
After my diagnosis, I worried about how MS
would affect my career, but in time, I appreciated
having a firsthand perspective on what people’s
needs might be – a perspective that was invalu-
able in developing programs that benefit people
with MS and other neurological conditions in
Canada and beyond.
Left: Jo-Anne in her 20’s as a dancer; Right: Jo-Anne accepting an award for professional contribution from the Ontario Physiotherapy Association in 2013
Jo-Anne’s program, TIME – Together in Movement and Exercise is
available in Ontario & British Columbia. Prince Edward Island TBC.
www.uhn.ca/TorontoRehab/PatientsFamilies/Clinics_Tests/TIME
http://bit.ly/1xXUZbd
1 3
Practical Matters Off the beaten path: Travelling with MS
I would go places and there would be stairs. My MS makes it very difficult to use stairs. If this was affecting me, I kept thinking, it’s got to be affecting other people, too. I started my accessible travel company to let people know: from going on a wheelchair accessible gondola ride in Venice, to experiencing Machu Picchu or visiting Nepal, you can! — TARITA , DIAGNOSED WITH MS IN 1996
The thrill of the unfamiliar is what makes us want to travel – the newness of experiencing other
cultures, architectural styles, histories and ways of life. The same unfamiliarity we crave can
make the unpredictability of an episodic illness like MS risky and challenging. Living with MS
doesn’t mean you can’t see the world, it just means you may have to plan your vacations more
thoughtfully. Knowing how important travel is to some people’s mental and physical well-being,
we’ve put together some tips for accessible travel:
For advice and support, contact an MS navigator at 1 844 859-6789 or by e-mail at [email protected]
Injectable medications: Have a letter from your doctor and keep all medications in original packaging showing the prescription label.
Baggage limits: The bag you use for medical supplies or assistive devices is not usually counted in the limit of one carry-on bag and one personal bag.
Plan ahead: Let the airline know about any devices you use or assistance you require when you book your flight. It also doesn’t hurt to confirm that your accommodations will be truly accessible before booking. Not everyone’s definition of accessible is the same.
Insure yourself: Purchase travel insurance when you book your trip. In the event of a relapse, or any other medical emergency, you’ll be very glad to have it.
Gear: Depending on where you are flying, certain types of cooling vests may be cause for alarm at airport security. Look into local restrictions. Battery packs can also cause problems, using a manual wheelchair when flying can reduce the risk of problems.
MS CANADA Spring-Summer 20171 4
Fundraiser SpotlightLeaving comfort behind in the name of MS“Life begins at the end of your comfort zone.” – Neale Donald Walsch
Starting along the Atlantic coast of France
and ending just shy of the Black Sea in Romania,
longtime MS Bike participant, Ahmed Nassrat,
took to his bike on his own journey to end MS.
Planning to cycle 4500 kilometers, through eight
countries, over 55 days with a goal to raise
$1 for every kilometer he rides, he explains why
this trek was so important to him:
“This ride was an opportunity to spread the
word that Canada has the highest rate of MS in
the world, and to raise funds for MS research. As a
Canadian, it’s my place to help end our country’s
disease and I hope to inspire others to join me.”
Ahmed had never been on a long distance
cycling trip before. Nor had he ever travelled by
himself, let alone in a series of countries where
he doesn’t speak the language. His reasons for
going on this ride were three-fold: as a means
of self-discovery; to spread awareness about MS
and raise funds to help find a cure for the disease;
and to inspire others to take action for the causes
close to their hearts.
“I raced against cruise ships on the canal,
I raced against tractors on the ground, and I even
raced against a 70-year-old man I met along
the way,” he explains on his YouTube channel.
“The truth is, I was afraid of being lonely, but I
never once felt alone.”
In his final video from abroad, Ahmed
thanks the long list of people who took him in
and made him feel welcome along his journey.
He describes a night spent in a total stranger’s
house, something he never would have thought
of doing prior to this trip. “What started as a
personal challenge, became a truly eye opening
experience for me,” says Ahmed.
His advice for others? “Get out of your
comfort zone, you will be rewarded. I met
amazing people and learned about so many
countries. I also learned that despite all of our
differences, we are all seeking the same things:
a happy life surrounded by people we love.
I’m proud that I was able to raise awareness
about Canada’s disease in places so far away.”
Ahmed participated in MS Bike for eight years prior to embarking on his long distance journey to end MS. To learn more about his ride, visit his fundraising page: www.ichallengems.ca/ahmed.
1 5
From the CommunityOne step at a time
Jennifer Angus is 49. Prior to being diagnosed
with MS four years ago, she was an active artist,
athlete and amateur bike competitor. She valued
her independence immensely and the onset of
MS symptoms significantly impacted her well-
being, not only physically, but emotionally and
mentally as well.
“To not have the ability to care for myself
is the worst nightmare of all,” says Jennifer.
Physically, Jennifer is no longer able to
use her left hand, and the loss of balance she
experiences because of MS affects her ability
to move around, even within her own house.
She now uses a scooter to get around, which
was donated to her by the MS Society in 2015.
Jennifer experiences a symptom called
foot drop in her right foot which leaves her
unable to walk unaided. With the help of a grant
from the MS Society of Canada, she is renting
a leg brace called the Bioness L-300 Functional
Electrical Stimulation Brace – affectionately
known to Jennifer as her bionic leg. The device
goes around her calf, has a sensor under her
heel, and can be controlled by a small remote
control. It helps Jennifer walk by stimulating her
leg muscles with electricity.
“My bionic leg has increased the quality
of my gait, and helps me walk” says Jennifer.
“I initially took 30 steps on my own, and grad-
ually it has gone up to 50, and slowly to 200,”
Jennifer added. “Every day it gets a little bit
better. I am slowly learning to trust my legs not
to collapse under me. The difference it makes
in my daily life is incredible. I consider myself
very lucky. The MS Society has been incredibly
helpful to me.”
The brace has even impacted Jennifer’s
hopes for the future, “I concentrate on taking
one step at a time now. You just keep breathing.
The support of my friends is a massive gift.
All you can do is keep moving forward, and
hope and do the best for yourself.”
Jennifer’s brace helped her gain her mobility back, and by extension, her independence and hope for the future.
If you would like to know more about our equipment provision program, call 1-800-268-7582.
MS CANADA Spring-Summer 201716
Action on MSChronic illness in the workplace
Living with multiple sclerosis can make us feel
helpless sometimes. It can wear down our
physical abilities and our personal agency to
shape and take control of our lives. Sometimes
in more progressive manifestations of the
disease, a person can quite literally become
physically weak and helpless. MS can deprive
us of the peace of mind that predictability and
security bring. It can steal the simple joy of play.
It can erode the satisfaction that comes with
working on something we love – the feeling of
a job well done.
We are fortunate to live in a society where
many people and organizations do in fact treat
our vulnerable citizens with dignity and respect.
Individuals are recognized and celebrated for
their intrinsic humanity and are valued members
of society.
MEG Energy – a company based in Calgary,
Alberta – are leading by example when it comes
to workplace flexibility and adaptability. Coriann
lives with MS and is an employee there.
17
I was diagnosed with MS in August 2015. I had
some initial anxiety about informing my employer
so I reached out to a colleague first for support
and guidance. She reminded me that we work for
a good company and that I would be supported.
I suppose I could have kept it a secret but felt that
eventually the doctor’s appointments and need
for accommodations would give it away. I also
wanted to see what kind of support was available
to me through my company.
With her encouragement, I decided to tell
my supervisor, Charles. His supervisor, Steven
happened to come into Charles’ office at that
moment, so I told them both at the same time.
I feel lucky that they were immediately so under-
standing and accommodating.
This employee-focused approach is echoed
throughout my organization. When I told the
senior vice president of resource management
about my diagnosis, he responded, “How can we
help? Whatever you need, let us know”.
One of the challenges of living and work-
ing with MS is the episodic nature of the disease.
Relapses come and go with no warning making
it difficult, if not impossible, to abide by a rigid
schedule. A few months ago I had a relapse that
lasted nearly two weeks. Not only were my feet
and hands numb, I was also numb from the waist
down. All my muscles tightened and it was difficult
to walk. It was tough walking from the C-Train to
the office. I told one of my supervisors about my
relapse and he told me to take it easy. He offered
some extra help if I needed it. I was also experien-
cing neck pain at the time and was able to adjust
my office furniture so it didn’t put so much strain
on my neck.
Our company has a flex-time policy for its
employees, so I’m able to start and finish my day
according to when I feel strongest and healthiest.
I still have to put in my eight hours, but I can
schedule the time that works best for me.
Organizations can really support employees with
chronic illnesses like MS when they allow some
flexibility.
I was fortunate to have my first private MRI
costs covered by the company benefits program.
The sooner my neurologist could get a clear
picture of my MS, the sooner I was able to work
with my healthcare team to choose a treatment
plan. My plan also covers the cost of my disease-
modifying therapy – an expense which can
amount to $1,500-$1,600 per month. I can also take
advantage of physiotherapy and massage through
my benefits. Additionally, I can take advantage of
physical fitness options through a GetFit account.
MS is by no means limited to the workplace,
it follows me home from the office too. The Alberta
Aids to Daily Living (AADL) program allowed me to
make some necessary modifications to my house.
My corporate benefit program would also have
covered a portion of the costs that were not covered
by AADL had it been needed.
My employer knows that I care about supporting
the MS Society. Through their community investment
program, my employer celebrates and supports a
volunteer commitment by a staff person by making
a donation to the staff person’s charity of choice.
Last year, MEG Energy donated $1,500 to the
MS Society as a result of my volunteer hours. I am
hoping to do even more this year. Last year, MEG
Energy donated $1,500 to the Calgary & Area Chapter
of the MS Society as a result of my volunteer hours,
and I am hoping to volunteer even more this year.
The flexibility and accommodations offered by
my employer have been so central to my well-being
and quality of life. I know that my story does not
reflect reality for so many others who are affected
by MS. I wish other employers could see how easy
it is to offer support to their employees the way
MEG Energy has supported me. There is value in
valuing your employees. My story is an example
of that.
Get involved in the Canadians with Disabilities Act consultation. Learn more at www.Canada.ca/Accessible-Canada
MS CANADA Spring-Summer 20171 8
Message from Yves
In conversations I have had with people
affected by MS across Canada, I have often heard
of the desire for more information about well-
ness in MS – in short, people want to know how
to live better with MS. For this reason, through
2017 MS Canada will focus on living well with
multiple sclerosis (MS). The information and
stories you will find in the pages of our magazine
this year will focus on topics such as exercise,
diet and nutrition, as well as issues that surround
emotional and mental wellbeing. Living with MS
can be tough, but today with increased research
efforts and new and innovative tools to better
manage symptoms, we are more hopeful than
ever that you can live and live well with MS.
In the research world, the highlight of 2016
for me was the announcement of the results
of the bone marrow transplant trial, which we
highlighted in our last issue of MS Canada.
Just recently, I had the pleasure to hear Jennifer
Molson speak passionately about how participa-
tion in that trial changed her life – in fact, she
described the date of her treatment with BMT as
her second birthday. Our important work serv-
ing people with MS and increasing the pace of
MS research will continue in 2017. This year we
look forward to once again hosting our research
priorities discussions with people across the
country. The goal of these gatherings is to build
a bridge connecting those who are studying MS
and those who live with the disease, helping to
ensure that our research investments are meet-
ing the needs of people impacted by MS. For
more information about these discussions visit
mssociety.ca/researchpriorities.
At the time of writing this, we are anxiously
awaiting the United States Food and Drug
Administration’s (FDA) approval of Ocrevus,
the first treatment option for adults living with
progressive MS, as well as those living with
relapsing-remitting MS. This announcement
will mark a historic moment in the story of MS
treatments, since never before have we had a
treatment for progressive MS. While Ocrevus
represents a very important breakthrough, we
must continue to be vigilant in the pursuit of
progress in the field of treatments, as we know
that no single therapy is effective for everyone.
For updates on the FDA’s approval of Ocrevus,
I encourage you to keep your eye on our social
media channels.
In closing, a thank you to Hermès Canada,
whose contribution to wellness research will
help us increase the knowledge we have about
exercise and MS. Working together we can
find the answers you need to live, and live well,
with MS.
Sincerely,
Yves Savoie
YOU HAVE THE RIG HT TO VOTE BY PROX Y. A COPY OF THE FORM OF PROX Y IS SE T FORTH BE LOW.
DATED at Toronto, Ontario this _ day of April 2017 Gayelene Bonenfant, Secretary
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Multiple Sclerosis Society of Canada Proxy for Annual Meeting of Members, June 9, 2017[PLEASE PRINT]
The undersigned hereby appoints Valerie Hussey, or failing, François Coupal, John Folka, or Gayelene Bonenfant or: _(any other individual may be designated as a proxyholder) as proxyholder with power of substitution, to attend and vote for the undersigned at the Annual Meeting of members to be held Friday, June 9, 2017 and at any adjournment or adjournments thereof and to vote and otherwise act thereat for and on behalf and in the name of the undersigned in respect of all matters which may come before the meeting in the same manner the undersigned would do if personally present thereat.
DATED this day of April 2017
SIGNATURE
Surname Middle Initial First Name
Street Address
City/Town Province/Territory Postal Code
Chapter/Division Telephone No
NOTE TO PROX Y1. The person named in this proxy intends to [check one] vote for or against the resolutions set forth in the notice
of meeting, other than the appointment of a public accountant and the election of Directors.2. The person named in this proxy intends to [check one] vote or withhold from voting in respect of the appointment
of a public accountant or the election of Directors.3. The person named in this proxy is to vote or withhold from voting in accordance with the instructions of the Member,
on any ballot that may be called for with respect to any matter to be acted on, 4. This Proxy also confers authority for the above named person to vote in his/her discretion with respect to amendments
or variations to matters identified in the notice of meetings or other matters which may properly come before the meetings or any adjournments thereof.
Please date, sign and return this proxy to the Secretary, Multiple Sclerosis Society of Canada, National Office, 250 Dundas St W, Suite 500, Toronto, ON M5T 2Z5 by Friday, June 2, 2017 at 4:00 p.m. Eastern Standard Time. Attention: Rosanne Portelance.
NOTICE IS HEREBY G IVEN that an Annual Meeting of the members of Multiple Sclerosis Society of Canada will be held at the Marriott Bloor Yorkville, 90 Bloor St E, Toronto, Ontario M4W 1A7, on Friday, June 9, 2017 at 2:00 pm (Eastern Standard Time) for the following purposes:
i) Receiving the report of the members of the MS Society Board of Directors and the audited financial statements for the year January 1, 2016 to December 31, 2016; together with the report of the public accountant thereon;
ii) Electing members of the MS Society Board of Directors;
iii) Appointing the public accountant;
iv) Approving amendments to the Articles of Continuance and to the general operating by law of the MS Society of Canada;
v) Such further and other business as may properly be brought before the meeting.
On May 26, 2017, the audited financial statements and the proposed amendments to the Articles of Continuance and to the general operating by law will be made available on our website www.mssociety.ca\AGM2017 or by calling 1-866-922-6065 x3003 to request a copy be mailed to you.
One or two positions on the Board of Directors of the MS Society of Canada will become vacant at the AGM. Any member wishing to nominate a candidate as a director will
MULTIPLE SCLEROSIS SOCIET Y OF CANADA NOTICE OF AN ANNUAL MEETING OF MEMBERS
be required to provide biographical information about the said nominee before Friday, May 26, 2017 at 4:00 p.m. Eastern Standard Time. Biographies of candidates standing for election will be made available on www.mssociety.ca\AGM2017 on June 5, 2017.
Pursuant to the bylaws of the Society, there is one class of Members of the Society. Membership in the Society is available to individuals who wish to further the purposes of the Society and is administered by the Divisions and Chapters in accordance with the Membership Policy. Members attending the AGM will be confirmed in good standing and provided with voting cards as appropriate in keeping with the governance rules and regulations of the Society. A Member will be considered to be in good standing if the Member was admitted to membership at least ninety (90) days before the AGM. Existing Members may renew their membership immediately before the AGM if their membership has not been lapsed for more than one year. Members in attendance at the AGM will be required to provide valid photo identification.
Members who are unable to attend the meeting in person are requested to date and sign the form of proxy below, detach and return it to the head office of the MS Society, 250 Dundas St W, Suite 500, Toronto, ON M5T 2Z5 by Friday, June 2, 2017 at 4:00 p.m. Eastern Standard Time Attention: Rosanne Portelance.
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