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: 416 922-7538info@mssociety.ca 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 msnavigators@mssociety.ca

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

-----------------------------------------------------------------------------------------------------------------------

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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