Fall-Winter 2015

FEATURE STORYLiving fit

with MS

by Robyn Baldwin

ACTION ON MSFlexible

income supports

LIVING WELLWinter safety

toolkit

RESEARCHRisk

factors

MS Canada, Fall/Winter 2015

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ISSN 0315-1131Canadian Publications Mail ProductSales agreement no. 40063383

President and chief executive officer: Yves SavoieEditor-in-chief: Tiffany RegaudieManaging editor: Meaghan Kelly

Editorial committee & contributorsAngelica Asis, researchNick Dehod, Alberta & NWT DivisionIlana Hirt, leadership givingRebecca Horan, Manitoba DivisionJudith Kays, Atlantic DivisionJulie Kelndorfer, government relationsLisa McCoy, Ontario DivisionLee Nichols, leadership givingSylvie Rousseau, Quebec DivisionAndria Samis, programs & servicesPeter Schwarz-Lam, researchPam Seto, marketing & communications Carissa Trenton, Saskatchewan DivisionRowena Veylan, BC & Yukon 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.

Fall-Winter 2015

FE ATURE

Living fit with MS

by Robyn Baldwin

4

informRESE ARCH

Risk factors

7LIVING WELL

Winter safety toolkit

9

relateMY MS JOURNEY

I Could Keep Up,

Even Though I Have MS

11PR ACTICAL MAT TERS

Coping strategies for cognitive symptoms

13

actI CHALLENGE MS

Tammy Johnson’s Story

14 #WODTOENDMS

15ACTION ON MS

Flexible income supports

16

Message from Yves

19

Visit

mssociety.ca to

see content based

on your location,

and use our new

accessibility

features.

MANITOBAEDITION

MS CANADA Fall-Winter 20154

Living fit with MSBY Robyn Baldwin

It’s 5:00 am, and I’m awake and ready for the gym.

This isn’t unusual for me; I began competing

in fitness competitions in 2009, and one of my

goals is to grace the podium at an obstacle

course race. This day, though, two of my fingers

are tingling like they’ve fallen asleep. I’ve been

training for obstacle course races with a heavy

amount of weightlifting and running, which leads

me to assume I’ve pinched a nerve during a

training session. I go to the gym nonetheless.

The numbness snakes its way through my

upper body as the day progresses—first my hand,

then my arm, then my shoulder. I fight through

it. Later that week, the tingling moves down the

right side of my body. When my right leg and

foot go numb, I drive myself to the hospital for

answers.

Twelve hours later, I hear the doctor

saying, “There is an abnormality on the MRI.”

For a split second, my world stops. “Wait, did

you say abnormality?” I ask. He begins talking

about demyelination on the cervical spine,

“which is indicative but not conclusive of MS.”

Indicative but not conclusive? Why would

he plant such a seed of worry in my mind

without a firm diagnosis? Sleep doesn’t come

easily that night as I lie on a gurney in the ER,

under bright lights in the hallway by the nursing

station. I barely sleep, and I cry while coming

to terms with the impending diagnosis. In the

morning, with friends and my mother by my side,

I undergo another MRI, this time with a tracing

agent for more accuracy. Afterwards, I meet with

the on-call neurologist, and I am diagnosed with

multiple sclerosis.

My philosophy is that I can face MS head on as long as I’m living as

my healthiest self.

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Over the next six months, I go into what I

call “How I’ll Live My Best Life with MS” mode,

by first accepting MS as my new sidekick and

then working hard to stay on top of research

about managing MS symptoms holistically.

Half a year after my initial visit to the hospital,

my MRIs show no new lesions, and my existing

lesions are smaller than at the time of my diagno-

sis. It’s now high on my list of priorities to remain

well informed about nutrition and MS so that I

can modify my lifestyle with all of the information

available to me.

LEFT Robyn competing in an obstacle course. Photo by Richard Lee Yuen.http://facebook.com/athlete.richardleeyuen RIGHT Robyn training. Photo by Peter Salama. www.petersalamaphotography.com

MS hasn’t stopped me from living my life—it’s simply

become a part of it.

MS CANADA Fall-Winter 20156

Adapting my nutrition

For many people, one of the biggest choices

you have to make at the time of an MS diagnosis

is how you want to treat the disease. For me, it

was important to optimize my health holistically

through diet, vitamin supplements, stress reduc-

tion and sleep before I tried disease-modifying

therapies. I wanted to see if I could help my body

fight the effects of MS naturally before choosing

conventional forms of treatment.

I met with a naturopath to ensure I was

optimizing my supplements to manage MS symp-

toms. I’d been taking a vitamin D supplement

before my diagnosis, but when my blood work

indicated a deficiency, I increased my dose and

became much more diligent about taking it.

I also submitted a food journal to a registered

holistic nutritionist and adapted my meal plans

to reduce inflammation and fix digestion issues.

Fitness goals

I train in a variety of ways: I’m in the gym doing

weights for my legs, back and shoulders two to

three times a week. I also train at an obstacle

course gym, which consists of functional fitness,

circuit training and obstacle training. We climb

ropes, cross monkey bars and learn how to climb

over walls.

I have big fitness goals—by the time this

article goes to press, I will have competed in

20 races, including eleven obstacle course races

(two in the winter), a snowshoe race, three road

races and more. The last five races were the most

intense obstacle courses I have ever faced.

I am determined not to let MS slow me down.

Doing what’s right for you

The thing about MS is this: sometimes you need

to step back and give yourself time to recover.

After undergoing steroid treatment at the time of

my diagnosis, I spent three weeks resting before

I could train again.

Since that time, I’ve seen myself getting

stronger. I’ve regained and gained even more

endurance than before. As my first relapse fades

into the past, I’m seeing my symptoms decrease.

I’ve learned how to adapt my physical activity

to work around my symptoms. I still experience

hand tremors, tingling and numbness when I’m

overheated, but I wear cooling vests or towels

to bring down my core temperature. I’ve also

learned that resting is of utmost importance, and

I take extra steps to recover from my workouts.

I know that it’s important for me to take ice baths

after races and nap when I’m exhausted.

My philosophy is that I can face MS head on

as long as I’m living as my healthiest self. I docu-

ment my personal journey at RobynBaldwin.com,

where I write about training, races, food prep,

books, adventures in my city, experiences that I

love—and how MS fits in to all of that.

MS hasn’t stopped me from living my life—

it’s simply become a part of it.

Follow Robyn on Twitter and Instagram @RobynBaldwin

For more resources on fitness and MS, visit mssociety.ca/physicalactivity

Robyn’s lifestyle tips2

Invest in cooling technology

Cooling vests are helpful

before and after workouts.

During exercise, wrap cooling

towels around your neck to

prevent overheating.

3Reduce inflammation and stress

Every night, I take a five-minute ice bath,

followed by a 15-minute warm Epsom salt

bath. The ice bath is especially important

after a hard workout or race, and it sets

me up for a great sleep.

1Sleep eight hours

Sleep has become my priority

(even over morning workouts!),

as it ensures I’m functioning at

my best.

7

ResearchRisk factors

It’s no secret that Canada has the highest

rate of multiple sclerosis in the world. The

question that continues to elude researchers

is: Why Canada? Decades of observation have

revealed that people living in certain regions,

possessing certain traits and receiving exposure

to certain influences are more susceptible to MS.

Also — women are three times more likely to

develop MS than men. These variables, termed

risk factors, may tell us more about what causes

MS and why certain people are more likely to

develop MS than others.

Researchers are discovering that there

is probably no one cause of MS; instead, a

multitude of risk factors may influence a person’s

chances, or risk, of developing the disease.

Fixed risk factors, like age, sex or genetic

makeup, are predetermined and beyond our

control. Modifiable risk factors, like smoking and

vitamin D intake, are lifestyle and environmental

influences that may be controlled — although

trying to manage them can be a challenge.

Over the years, researchers have identified

a number of risk factors that, to varying degrees,

may play a role in triggering the disease.

FIXED RISK FAC TORS

MODIFIABLE RISK FAC TORS

MS CANADA Fall-Winter 20158 Remain informed on all things MS research

at mssociety.ca/msupdates

Nature vs. nurture—or both

The study of family members of people living

with MS can tell us whether MS is passed down

from one generation to the next through our

genes. Compelling evidence from genome

studies suggests that variations in dozens of

genes – particularly those involved in regulating

the immune system – can predispose a person

to developing MS; however, genetic inheritance

doesn’t appear to be the full story.

Some interesting observations of MS

risk factors come from studies of migrating

populations. First-generation immigrants who

migrate from certain countries with low MS

rates (particularly in the Middle East and South

Asia) to countries with high MS rates appear to

retain the low risk of their native country if they

migrated after early adolescence. In contrast,

people who migrate during childhood and early

adolescence appear to take on the higher risk of

their new home, although certain studies have

found that all age groups are vulnerable. These

studies suggest that certain people are born

with a genetic predisposition to MS and that,

when exposed to certain environmental factors,

they are caught in a “perfect storm” that trig-

gers the harmful autoimmune reaction that is a

hallmark of the disease.

Things we can control: Modifiable risk factors

Researchers have been studying lifestyle and

environmental MS risk factors for many years.

Dr. Helen Tremlett, an expert in population

health studies at the University of British Col-

umbia, and doctoral candidate Kyla McKay

recently published an exhaustive and critical

systematic review of MS risk factors. “A lot of

research has been done exploring the modifi-

able risk factors for MS; however, there are still

gaps in our knowledge” says Dr. Tremlett. “Most

of the research to date has focused on the more

common relapsing-remitting form of MS, so

much less is known about the risk factors for

primary progressive MS.”

Dr. Tremlett and Ms. McKay have reviewed

and compared a number of factors that may

play a role in triggering all forms of the disease.

Prior infection with the Epstein-Barr virus

(EBV) has emerged as a strong contender; EBV

is responsible for infectious mononucleosis

during adolescence. While the EBV infection

is widespread around the world and is mostly

asymptomatic, nearly every person living with

relapsing-remitting MS tested to date is posi-

tive for EBV antibodies. A history of infectious

(symptomatic) mononucleosis pushes the risk

for relapsing-remitting MS especially high,

although an association with primary-progres-

sive MS is less clear.

Other modifiable factors have also been

linked to MS risk. Vitamin D, the “sunshine

vitamin” that is synthesized in the skin through

exposure to the sun’s rays, is thought to pro-

tect against MS. This knowledge may partially

explain the higher rates of MS in countries

further from the equator, where sunlight expos-

ure is too low for people to produce vitamin D

for half the year. As more information on the

link between vitamin D and MS is uncovered,

the Canadian guidelines for vitamin D intake

may change.

Finally, cigarette smoking has historic-

ally been associated with an increased risk of

relapsing-remitting MS, although Dr. Tremlett

insists that more studies are needed to examine

how smoking affects disease progression and

primary-progressive MS onset since that link is

far less certain.

Dr. Tremlett and Ms. McKay agree that

mapping out risk factors for MS is a critical area

of research. “People who may be at a higher risk

of MS can be mindful of the known modifiable

risk factors and adapt their behaviour to hope-

fully reduce their risk of MS.”

9

Living WellWinter safety toolkit

Canadian winters can make daily life

especially challenging for people living with

a disability. Weather-related limitations can

present barriers to participation in everyday

activities, and people living with MS may feel

removed from their community during the

winter months—which could exacerbate the

physical and psychological symptoms of MS.

For people living with both relapsing-

remitting and progressive forms of MS, ice,

snow and uneven surfaces can mean an

increased risk of falling, heightened fatigue

and difficulty getting around, among other

challenges. While our municipalities have a

responsibility to ensure people living with dis-

abilities can remain mobile during our winters,

there are also things you can do to stay safe. Kat

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The toolkit

PNEUM ATIC TIRES

If you rely on a wheelchair

to get around, make sure your tires have good

traction so you can travel

safely over icy surfaces.

CHAINS , CLE AT S OR NON-SLIP

S TUDS Ensure your

footwear has good traction. Winter boots

should have soles with grip for

ice, but not so thick as to lose

your connection to the ground

surface.

ICE G RIPPERS ON MOBILIT Y

C ANES AND WALKERS These can

provide stability on uneven and

slippery surfaces

like snow and ice.

KIT T Y LIT TER Rock salt is commonly

used on ice in winter, but it can melt the

snow and make surfaces even more slippery. Kitty litter is a

good alternative for your own

walkways.

CELLPHONE Remember to take your

cellphone with you whenever

you leave the house.

REFLEC TIVE G E AR

Wear bright colours and

add reflective gear to your winter coat to stand out against the snow or in the dark.

MS CANADA Fall-Winter 201510

Staying safe during extreme weatherPeople with disabilities are disproportionately affected by winter storms,

whether they are outdoors or in their homes. It’s important to have a plan in

place for winter emergencies like power outages, floods, blizzards or ice storms.

Here’s a basic to-do list to make sure you’re prepared for an emergency situation.

Remember—support groups are a good place to share information and connect

with people who share a similar experience. Join a support group to gain more

strategies for getting around in winter from other people living with MS.

For more information on local support groups or adapted activities offered

in your area, call your local MS Society chapter at 1-800-268-7582

(programs may vary according to location).

Did we miss any safety tips you use to help you manage your MS in winter? Tweet @MSSocietyCanada to let us know.

Build a support network of people you

trust who will check on you in the event of

an emergency.

Plan an escape route in case a home evacuation is necessary, and include

details about how you will call for help if it is needed.

Secure backup power sources for medical

equipment that requires electricity or

batteries.

Stock up on medications and other

supplies in the event of an interruption of homecare services.

Stock your pantry with enough canned goods and other non-perishables to

last a week.

Keep a flashlight and extra batteries in an easily

accessible place in case of a power outage.

Keep blankets, warm clothing and first aid supplies stocked and

handy.

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My MS JourneyI Could Keep Up, Even Though I Have MS

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When you get MS, you think, wow, I can’t do the things

I like to do anymore. Winter Bike let me do something that I thought I couldn’t.

— BRENDA, DIAGNOSED IN 2011

On February 7, 2015, 34 cyclists geared up to

end MS in the first ever Winter MS Bike in Clear

Lake, Manitoba. Despite heavy snow-falls and

chilly temperatures, the event was a success,

raising more than $10,000 to improve the lives

of people affected by MS and fund important

research about the disease.

For Winter Bike Ambassador Brenda

Giesbrecht, the decision to participate in

Winter Bike was easy. Brenda, who has been

living with MS since 2011, finds her symptoms

intensify in hot weather, causing numbness,

tingling, and increased blurriness in her vision.

The cool weather of February gave her the

freedom to be active outside.

“Winter Bike is something that I can parti-

cipate in with my symptoms,” Brenda said

about deciding to participate. “And, especially

over winter time, you have less energy, your

moods are lower, it gets darker earlier. Training

for the MS Bike got me out of the house, got

me active. Last year, I was – and still am – off

work because of a relapse, and I was just sitting

around, looking for something to do.”

Brenda first geared up to end MS when

she participated in the 2006 Biking to the

Viking MS Bike. Five years later, following her

30th birthday, she woke up to a grey blob in

her left eye. Thinking it was a scratch on her

glasses, Brenda wasn’t concerned until the blob

started growing. Her eye doctor immediately

sent her to the Misericordia General emergency

room, where the on-call ophthalmologist

referred her to a neurologist. Brenda had already

determined that MS was a possibility thanks to

her online research. But, finding out that she

MS CANADA Fall-Winter 201512

had been referred to the MS Clinic still came

as a shock.

An MRI revealed lesions consistent with

MS, and Brenda was diagnosed with Clinically

Isolated Syndrome (CIS). She then joined a

research study, where she was closely monitored

with blood tests, MRIs, and physical exams.

Her diagnosis of Relapsing Remitting Multiple

Sclerosis (RRMS) came as she reached the end

of the study, when another lesion was found.

Before MS, I cycled around Riding Mountain

in the summer. I knew, even though it was cooler

out, Winter Bike would be a challenge, not just

for me, but for my husband, who doesn’t have

to deal with MS - other than dealing with me, at

least,” Brenda joked. “But he was at a disadvan-

tage, because he wasn’t experienced in winter

cycling. This made me feel good. I could keep

up, even though I have MS.”

Brenda encourages people with MS and

other chronic illnesses to stay as active as

possible, as active as their body will allow.

“For those of us with MS, we might have

to make great modifications to be able to do

some of that activity, but having a physically

and mentally healthy body really helps to

improve quality of life,” Brenda says. “A cure

would be great. It would mean that I could go

back to doing everything I love. But it isn’t just

about curing this disease, it is about improving

the quality of life for people living with this

disease. And that is why exercise (and fundraising

for events like Winter Bike!) is so important.”

Winter Bike will be back on February 28,

2016, colder and better than ever!

1 3

For more practical tips on living well with MS, visit msanswers.ca

KEEP YOUR LIFE CONSIS TENT.Assign specific places in your home for frequently used things, like keys or glasses, so that you know where to find them.

When I was first diagnosed with MS, I developed little tricks to help me cope with cognitive symptoms. I’ll set alarms on my cellphone or text myself to remember things. The act of putting pen to paper has always helped me commit things to memory, so I keep a day planner.

Expressing what’s on my mind is sometimes hard for me. Thoughts will be clear in my head, but they just won’t come out the same way when I try to articulate them. Thinking out loud to myself feels reassuring and helps me work through that. I also read a lot to keep my mind sharp. — LIZELLE, DIAGNOSED IN 2007

S TAY COOL . Besides the physical effects of heat sensitivity, many people living with MS report heat as a trigger for their cognitive changes. Keeping your core temperature down may help you keep a clear head. Cooling clothing, air conditioning and cold drinks are good ways to prevent overheating.

IDENTIF Y YOUR TRIG G ERS . Become aware of the environmental factors that may trigger your cognitive changes. If you’re sensitive to background noise, find a quiet space to focus on your work. Fatigue and cognition appear to be inter-related, so make sure to get lots of rest—and know when to take a break!

For more information on coping with cognitive changes, visit mssociety.ca/cognition

AT TEND A SUPP ORT G ROUP.MS support groups are communities that connect people with shared experiences to emotional support and practical information. Learning how others cope can lead you to more resources and remove the feeling of stigma that often comes with the invisible symptoms of MS.

For some people, multiple sclerosis is an invisible illness. Cognitive impairments such as short-term

memory loss, difficulty concentrating and altered moods can have a large impact on quality of life

for people living with the disease and their loved ones.

Research on treatments for cognitive impairment is ongoing, but cognitive rehabilitation with

an occupational therapist is a great way to develop compensatory strategies for people who live

with these symptoms. While coping strategies may not reverse the symptoms themselves, they can

provide efficient alternative ways to perform tasks that have become difficult.

Here are a few tricks for managing the cognitive changes due to MS.

Practical MattersCoping strategies for cognitive changes

SE T REMINDERS YOU C AN ’ T AVOID.Leave sticky notes on your front door or bathroom mirror to remind you about appointments or taking medication.

MS CANADA Fall-Winter 20151 4

I Challenge MSTammy Johnson’s Story

The only thing I could think about when I was

diagnosed with MS in November 2007 was

whether or not I would be able to go deer hunt-

ing with my father on our annual trip.

My first episode was on Hallowe’en. I was

sitting at my desk at work when, out of the blue,

the left side of my face started to go numb. I

knew right away that something was wrong with

me. I went to the hospital and it was there I heard

the words “multiple sclerosis” for the first time.

There were so many things running through

my head, my thoughts were spinning. The only

thing I cared about was how important it was

for me to go on this hunting trip with my dad.

My neurologist told me that I could go, but to be

careful not to push myself. I was so happy! These

trips and my relationship with my dad are so

incredibly important to me. It was then I decided

that I was not going to let MS control me.

That was also when I made the decision to

manage my MS without medication.

I’m a strong believer that the mind is an

incredibly powerful tool for healing. After dis-

cussing this with my neurologist, he advised me

to stay as active as possible. I took that advice

and ran with it – literally. In 2008, I finished my

first ever half-marathon. Keeping my body strong

really helps make the disease less of a challenge,

and so far, none of my episodes have been as

bad as the first one was.

Being fit and having a positive attitude has

helped me so much, and managing my symp-

toms holistically has worked very well for me.

My friends sometimes worry about me, but

ultimately, it is my decision, and it is working

for me. And this November, my dad and I are

going on our ninth trip since my diagnosis.

I can’t wait.

1 5

#WODtoendMS

The key to a successful fundraiser is often its

simplicity. This was true in April, when eight

CrossFit gyms from Brandon, Kenora, Niverville,

Steinbach, and Winnipeg hosted a province-

wide Active for MS event, raising more than

$1,500.

“We’d run small fundraising events

before, but nothing on this scale. When the

MS Society approached us to see if we would

be interested in running an event like this,

from an organizational standpoint it was an

easy decision,” says CrossFit Steinbach owner

Colin Darling. “I had to put in some effort to

make the event a success, but nothing like

organizing a charity walk, where you have to

deal with tons of different venues, people,

and organizations. We made sure we had our

workouts lined up, put the word out, invited

our CrossFit friends to join in, and watched

them show up on event day.”

CrossFit Rocked in Brandon came up with

the idea, but it was because of Colin’s vision

and dedication to the community that

#WODtoendMS grew to encompass eight gyms.

“We suggested reaching out to the differ-

ent Crossfit gyms and communities,” Colin

expanded. “And hosted the CrossFit Niverville

community in our gym to really maximize the

event. We were really impressed with how well

it turned out.”

CrossFit gyms have daily #WODs (workout

of the day) for gym members to follow, posted

online and in their gyms. The pre-existing

#WOD system made even the event name easy

to decide on: #WODtoendMS.

“I’m dedicated to giving back and contri-

buting to the community at large,” Colin

explained. “I didn’t know that MS was Canada’s

disease before this event. It felt really good to

be able to help run a fundraiser for such a great

cause. Especially now that I know that Canada

has the highest rate of MS in the world.”

Have an Active for MS event you want to hold? Contact us at info.manitoba@mssociety.ca

Action on MSFlexibility: Changing income and employment supports for people affected by MS

An episodic illness is a condition characterized

by fluctuating periods of disability and wellness.

Multiple sclerosis is a chronic, progressive and

episodic illness that affects 100,000 Canadians,

many of whom are struggling to remain in the

workforce. Canada’s sickness benefits often do

not cater to people with episodic illnesses, who

may not qualify for benefits because they are

not “sick enough” to remain permanently out

of the workforce. The fact is, many Canadians

with MS can work—except when they are

experiencing a relapse and need support. And

people with MS who can’t work have trouble

getting by on the limited financial assistance

offered under current government programs.

Today in Canada, when you are diagnosed

with a chronic or episodic illness and need

to take time off work, your options vary

depending on where you live. If you’re living

in Quebec, you can take 26 weeks off work to

recover—but the leave is unpaid. If you’re living

in Alberta, British Columbia or Nunavut, your

employer has no obligation to grant sick leave at

all. Employers in most provinces and territories in

Canada provide just 10 days of sick leave or less,

and only 60 per cent of Canadian employers offer

arrangements that are above these requirements.

When someone gets sick, however, the reality is

that they are away for an average of 10 weeks.

Short-term benefits do not allow for

the unpredictability of a chronic or episodic

illness like MS—if your relapse persists past the

maximum duration rate for short-term benefits,

you’re forced to remain off work to access long-

term disability or draw on your own savings to

ride out your relapse.

SICK LE AVEUnpaid, length varies by province

PRIVATEINSUR ANCE

Varies by insurerAverage 33% drop in earnings

Short-term max duration:17–26 weeks

EMPLOYMENTINSUR ANCE

Two-week waiting period40% decrease in earnings Short-term max duration:

15 weeks

short-term

supports

long-term

supports

THE S TANDARD SUPP ORT S FUNNEL

When a relapse persists:

SOCIAL A SSIS TANCE

Varies by province,

50% decrease in

earnings

CPP -D/QPP -D

$465.84 / month +

75 % of the retirement

pension, dependent

on previous

contributions16

17

Steps toward change:

Institute for Research on Public Policy

On June 17, 2015, 33 key influencers repre-

senting some of Canada’s best thinkers on social

policy met to discuss the current landscape of

employment and income supports in our coun-

try. The MS Society, along with the Canadian

Cancer Society and the Canadian Caregiver

Coalition, sponsored the discussion hosted by

the Institute for Research on Public Policy, who

subsequently released a comprehensive paper

entitled “Leaving Some Behind: What Happens

When Workers Get Sick”.

The report calls for action, from long-

term directions to immediate reforms the

federal government can establish to help

Canadians with episodic and chronic illnesses.

The following are some of the action items

we will be advocating for as part of the IRPP

collective, whose goal is to make sure Canadians

with episodic and chronic illnesses don’t get

left behind.

Above all, our governments need to revisit

the definition of “disability”—with 1.2 million

Canadians living with an episodic disability or

other forms of debilitating chronic illness, it’s

time our benefits caught up to the reality that

“disability” doesn’t necessarily mean “permanent”.

We also need to create equity in providing access

to broader insurance coverage for all Canadians.

Not only are we pressing for Canada’s

governments to improve the income support for

people affected by MS who are unable to work,

we are asking them to accelerate MS research

by investing in the development of therapies for

people living with progressive MS.

1.2million

working-age Canadians who live with an episodic or chronic illness or

disability

Up to

80%Canadians with MS

who will be unemployed

95,000people who left the labour force entirely

because of a disability (2014)

For more information and to access the IRPP report in full, please visit http://bit.ly/1JDrORl

Short-term reforms1 Extended duration of EI benefits and creation of a flexible work-sharing program,

so that a person can reduce work hours while receiving EI income

2 The expert dissemination of information and hands-on support to employers on

roles, best practices and resources available when an employee is diagnosed with an

illness and may require time away or accommodations so they can continue to work

Long-term directions1 The standardization of program parameters across the disability support system

2 The enhancement of disability insurance coverage within the labour market to

account for people with episodic and chronic illnesses

3 The general improvement of disability insurance coverage in amount and length

of time accessed, to cover both short and long-term insurance needs

MS CANADA Fall-Winter 20151 8

19

Message from YvesThis year, we remember an important mile-

stone in the MS research narrative: twenty

years ago, Canadians gained access to the first

disease-modifying therapy for relapsing-remit-

ting MS. Since 1995, Canadian MS research has

broadened its scope and answered many ques-

tions about the complexity of MS, its symptoms

and ways to improve quality of life. One question,

however, continues to elude us: why are Can-

adians at such a high risk for developing MS?

While the exact cause of MS remains a

mystery, our growing knowledge of risk factors is

carving a path to concrete answers. Research is

revealing that there is no one cause of MS; rather,

a combination of factors contribute to a person’s

likelihood of developing the disease. While we

know that factors beyond our control, such as

genetics, influence the development of MS, we

also have solid evidence that factors we can

control—such as vitamin D deficiency, salt intake

and smoking—play an important role in MS.

Research developments on risk factors

allow us to enhance our role as a trusted com-

municator about MS and its possible prevention.

Specifically, this research guides the expansion of

our education and awareness initiatives, so that

we may provide those Canadians identified as

“high risk” with more information on the pos-

sible causes of MS. More information translates

to more informed choices, and we embrace the

opportunity to further educate Canadians about

MS and empower those living with the disease.

Robyn Baldwin, featured on the cover of

this issue of MS Canada, writes about taking

control of her own life through exercise and

lifestyle choices that empower her throughout

her journey with MS. Last summer Robyn took

further action against her disease by hosting an

I Challenge MS event. Working with her local

gym, Robyn hosted an obstacle course race that

raised nearly $4,000 for Canadians living with

MS. We were pleased to launch the I Challenge

MS platform this year to enable Canadians to

fundraise for research and services in a way that is

most convenient for them. Visit IChallengeMS.ca

to start your own event or get some inspiration.

As this issue of MS Canada went to press,

the results of the federal election were unknown.

What we do know, however, is that our current

government has a responsibility to improve

employment and income supports to Canadians

with MS, as recommended by a recent report

by the Institute for Research on Public Policy.

The report calls for supports that are more

flexible and inclusive of people with episodic

and chronic illnesses, and we are active

members of a collective that is working to

transform these recommendations into reality

for Canadians affected by MS. To take part in

this advocacy work, visit mssociety.ca/advocacy

to become an MS Ambassador and press

government officials to effect change in ways

that matter most to you.

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