Fall-Winter 2016

FEATURE STORYTaking a risk: Canadian Bone

Marrow Transplantation trial

by Jennifer Molson

ACTION ON MSRemoving

barriers

LIVING WITH MSDating

and MS

RESEARCHTechnology

solutions for MS

MS Canada, Fall/Winter 2016

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 from The Ottawa HospitalISSN 0315-1131Canadian Publications Mail ProductSales agreement no. 40063383

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

Editorial committee & contributorsNelson Augustin, BC & Yukon DivisionAngelica Asis, researchSylvie Bastien, Quebec DivisionLaura Hagglund, Ontario & Nunavut DivisionIlana Hirt, leadership givingJudith Kays, Atlantic DivisionJulie Kelndorfer, government relationsErin Kuan, Manitoba & Saskatchewan DivisionsSylvia Leonard, programs & servicesJenna D. Macdonald, Atlantic DivisionLee Nichols, leadership givingIlona Niemczyk, Manitoba & Saskatchewan DivisionsSarah Olivieri, Alberta & NWT DivisionCéline Patenaude, Quebec DivisionPam Seto, marketing & communicationsPeter Schwarz-Lam, research Rowena Veylan, BC & Yukon Division

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Fall-Winter 2016

FE ATURE

Taking a risk: Canadian Bone Marrow

Transplantation trial

by Jennifer Molson

4

informRESE ARCH

Technology solutions for MS

7LIVING WITH MS

Dating and MS: Creating an equal partnership

9

relateMY MS JOURNEY

Why are people having so much trouble getting help?

by Jennifer Sweeney

11PR ACTICAL MAT TERS

Sexual dysfunction: Managing a common symptom

13

actFUNDR AISER SPOTLIGHT

Finding a community to call your own

14 FROM THE COMMUNIT Y

You’ve got the Love

15ACTION ON MS

Removing barriers:

Accessibility from the ground up

16

Message from Yves

19

For more stories

like these, check out

the MS Society blog

at blog.mssociety.ca

ONTARIOEDITION

MS CANADA Fall-Winter 20164

Still, knowing what I know now, I would do it

all over again.

I won’t sugar coat this: the trial was hell.

For three years, between 2002 and 2005, my life

was a series of questions, tough decisions, and

uncertainties. My body didn’t feel like my own.

At one point I was taking 129 pills a day, and my

stomach lining was so eroded that I couldn’t

keep food down for a year. Destroying your

immune system is no easy feat.

But now, here I am: walking, skiing, kayak-

ing. Independent, working full time, married

after having danced at my wedding. I have been

living relapse-free for 14 years, and it’s because

of the Canadian Bone Marrow Transplantation

(BMT) trial conducted by Dr. Mark Freedman

and Dr. Harry Atkins at The Ottawa Hospital.

The BMT trial is responsible for a new

immunoablation and autologous hematopoietic

stem cell transplantation (IAHSCT) option for

people with an early, aggressive form of multiple

sclerosis, like the type I was living with in my

early 20s. Five years after being diagnosed with

MS at age 21, I had declined so rapidly that I

was living at The Ottawa Hospital Rehabilitation

Centre under constant care. Dr. Mark Freedman,

my neurologist and lead investigator of the

BMT trial, told me my MRI scan looked like a

cheese grater — there were so many lesions on

my brain that my nervous system looked like it

had been shredded by MS.

That was the moment I became eligible

for the trial, and I rallied my then-boyfriend

Aaron and my family to review the consent

But now, here I am: walking, skiing, kayaking. Independent, working full time, married after having danced at my wedding.

Taking a risk: Canadian Bone Marrow Transplantation trialby Jennifer Molson

5

form, line by line, risk by risk. Dr. Freedman

was straightforward about the difficulties

I would face at each stage of the trial, first

with the harvesting of my stem cells, then

with the chemotherapy to completely wipe

out my immune system, then with the

transplantation of my stem cells back into

my body (with a new consent form for each

stage!). I had made the decision to participate

in the trial expecting not that I would get

better, but rather that I wouldn’t get worse.

I wasn’t supposed to get better; even so,

I decided it was worth the risk to prevent

further progression of my MS.

At each stage, the trial became more

and more difficult until the point of no return:

10 days of chemotherapy. I remember receiving

treatment on the leukemia ward at the hospital,

and needing to explain to others that I wasn’t

receiving chemotherapy because I was dying

of cancer. I began to feel undeserving of the

treatment, because it wasn’t meant to save my

life. I sank into a deep depression, and I was

prescribed anti-depressants to cope with the

unexpected mental effects of the treatment.

The worst thing that can happen in a

clinical trial did, in this case, happen: another

participant in the trial, John, died as a result of

a liver infection caused by the chemotherapy.

I met John before I was readmitted to the

hospital into isolation for shingles; I was in

the room next to him for two weeks, and we

chatted on the phone every day. I remember he

was from Toronto and a fan of the Maple Leafs.

Left to right: Dr. Mark Freedman, Dr. Harry Atkins, Jennifer Molson, and Dr. Marjorie Bowman at The Ottawa Hospital.Taking a risk: Canadian Bone

Marrow Transplantation trialby Jennifer Molson

MS CANADA Fall-Winter 20166

I can’t imagine what it was like for John’s

family, as I imagined he was perhaps having

the same conversations with them as I had

with mine — what sort of risk we were taking,

and whether that risk would be worth it in the

end. Dr. Freedman and Dr. Atkins stopped the

trial for a time to find ways to make the trial

safer for us.

A year after I completed the trial, I

started to see improvements: first I was able

to walk without a cane, then get through the

day without a nap, then make plans with my

friends without needing to cancel. Finally, in

2006, I had regained complete ability, was

able to return to work full time and feel more

independent than I had in years.

I’m currently living relapse-free, but I’m

also living with the after-effects of extreme

chemotherapy. My husband and I have had to

accept that we will never have children, as the

treatment triggered early menopause in my

body. I’ve had to get most of my childhood

vaccines again, but I need to live without the

MMR vaccination. I am very prone to infection,

and I developed a blood infection, shingles,

and bladder infections after the treatment.

But when I’m asked if it was all worth it,

I answer without hesitation: yes.

Dr. Freedman and Dr. Atkins stopped the trial for a time to

find ways to make the trial safer for us.

For more information on eligibility for IAHSCT, visit www.ohri.ca/newsroom/newsstory.asp?ID=584

QUICK FACTS

IAHSCT involves harvesting hemato-

poietic stem cells from a person’s

bone marrow, administering a strong

dose of chemotherapy to destroy

the immune system, and then

reintroducing the harvested stem

cells to grow a new immune system.

IAHSCT is available for people with an

early, highly inflammatory, aggressive

form of MS that has not responded to

other therapies.

In Canada, IAHSCT is currently only

available at The Ottawa Hospital for

people who meet the criteria and are

referred by a neurologist.

For those eligible, the cost of IAHSCT

is covered under the Canadian public

health system.

70 per cent of Canadian BMT trial

participants experienced a complete

stop in disease progression, and 40

per cent experience a lasting reversal

of symptoms.

Outside of the Canadian BMT trial,

approximately 15 Canadians have

been treated with IAHSCT.

7

PatientsLikeMe.com, an online community, partnered with

Biogen last year to design a survey-based study that equipped participants

living with MS with wearable activity trackers to take home. The trackers

collected data about the users’ habits and health, and many participants

found the devices useful for monitoring and managing their MS; several

continued to use the trackers after the study ended.

ResearchTechnology solutions for MS: Not just science fiction

Over the past two decades, advances in

multiple sclerosis research have ushered in 11

disease-modifying therapies and new knowledge

of the possible causes, progression, and physical

and emotional impacts of the disease. Yet ask

anybody about research breakthroughs in the

field of MS, and chances are they’re unlikely to

mention one area that’s making a tremendous

impact on society as whole — the integration of

technology into our daily lives.

The role of technology in the lives of people

with MS is rapidly evolving. While “traditional”

tools — assistive devices like scooters and

leg braces, to name a few — continue to

help those living with disabilities maintain

independence and carry out everyday tasks,

advances in robotics and digital media are

filtering into other dimensions of the MS

experience. In recent years, the health

sector has been trying to keep pace with

advancements in technological innovation

by working with tech industries to create

new symptom management and wellness

solutions for people living with MS.

MS CANADA Fall-Winter 20168

REFERENCES

McIninch J et al. Neurology. 2015. 84(4): Supp P3.209Schwartz I et al. Mult Scler. 2012. 18(6):881-90Feys P et al. J Neuroeng Rehabil. 2015. 12:60Taylor PN et al. Arch Phys Med Rehabil. 1999. 80(12):1577-83Tyler ME et al. J Neuroeng Rehabil. 2014. 11:79

Hack4HealthThis year the MS Society awarded

a $15,000 grant to a team of

students at University of Waterloo

and their supervisor to develop

a wearable sensor system and

accompanying smartphone app

custom-made to capture the

symptoms and experiences of

people living with MS. The pro-

ject was borne out of last year’s

Hack4Health “hackathon” hosted

by University of Waterloo, and

underscores the importance of

engendering teamwork across

disciplines to develop real-world

technological solutions aimed at

improving health and quality of

life. A prototype of the product

is currently in development and

being tested by people living

with MS.

Robot rehabilitationAn entire field of healthcare

engineering research is dedicated to

rehabilitation strategies to enhance

the independence of people living

with disabilities, and many of these

solutions have been adapted for

MS. Using technology that might

as well be lifted straight out of a

science fiction movie, researchers are

studying robot-assisted rehabilitation

approaches for gait training and

upper-limb motor coordination in

people living with MS who experience

severe motor impediments. These

powered exoskeletons have shown

potential to have lasting benefits; by

using focused and carefully directed

repetitive practice, robot-assisted

rehabilitation can train the nerves

and muscles to improve mobility and

motor coordination, to make daily

life easier for people living with MS.

Functional electrical stimulationOther strategies seem to be rooted

even more deeply in science fiction.

Although the field of functional

electrical stimulation — using low-

level electrical currents to train

the body’s nerves — is hardly new

to the field of MS rehabilitation,

some researchers are looking to

strange but fascinating directions.

A recent pilot study at University of

Wisconsin evaluated the Portable

Neuromodulation Stimulator (PoNS™)

device as a potential therapy for

people living with MS who have

difficulty walking. Results of the

small study showed that the device,

which delivers stimulation to the

brain via the tongue, promoted

neural plasticity — “rewiring” of brain

connections — and improved gait

impairments in participants with MS.

For people living with MS, innovative technological solutions are carving

out a niche as a tangible and important accompaniment to disease-

modifying therapies and other symptom management strategies that

are a mainstay for MS clinical care today.

Robot-assisted rehabilitation can train the nerves and muscles to improve mobility and motor coordination. Picture: Hocoma, Switzerland

9

Living with MS Dating and MS: Creating an equal partnership

One time a date saw my phone reminder

to take my medication. I hadn’t told them

yet that I had MS, and wasn’t planning on

telling them then. Even though I’m very public

about having MS, situations where I have not

intentionally decided to mention it can be very

jarring for me. My date didn’t react negatively

to it, but it stayed with me because it felt

like I had something to hide from them and I

had been found out. Having MS — an invisible

disease part of the time for me — makes it

hard to know when or how to tell new people

and dates. — JUAN, DIAGNOSED IN 2012

When you live with a disease or disability,

dealing with other people’s inaccurate assump-

tions about you can (sadly) be a part of daily life.

When it comes to dating with a disease or dis-

ability, those inaccurate assumptions can turn into

imbalances in your relationship.

MS CANADA Fall-Winter 201610

For advice and support, contact an MS navigator at 1 844 859-6789 or by e-mail at msnavigators@mssociety.ca

When to tell someone about your MSDeciding when to talk about your MS is an entirely personal choice, one that can feel difficult when

meeting new people and entering the dating scene.

The reality is this: it’s entirely up to you. When you do feel ready to talk about your MS with a

romantic or sexual partner — whether you’re new to dating or starting over after the end of a mar-

riage or long-term relationship — here are a few tips to help you assert yourself and ensure you are

establishing roots for an equal partnership.

Dating can sometimes be intimidating, but living with MS can make it even more so. Your priority

is feeling safe, heard, and respected. Take the time to be sure you are with someone you trust. You

deserve nothing less.

Equip yourself with

information about

MS to share with

your partner. In some

cases, you’ll be put

in the position of

educating someone

about MS, and having

resources to share

with them can help

drive an informed

conversation.

Determine what

your boundaries are

before entering a

dating situation.

MS and its myriad

effects on you and

the ones you love

will be different than

someone else’s, as

will your experiences

dating with MS.

That’s why it’s impor-

tant to determine

your own set of

needs, boundaries

and desires.

Practise self-care.

Take a step back from

dating if you become

overwhelmed or

discouraged. Focus

on the things in your

life that make you feel

good. Practising self-

care is a habit worth

forming, and it will

carry over as a useful

skill when it comes to

maintaining a healthy

relationship.

Find a source of

support. Whether it’s

an online or offline

community, sharing

your experiences and

discussing dating

with other people

living with disabilities

can help bolster

your morale and

confidence, which

will help you assert

yourself in romantic

relationships.

11

My MS JourneyWhy are people having so much trouble getting help?BY JENNIFER SWEENE Y

There are two ways that a hospital is obliged to

admit you: if you’re suicidal or if you have chest pain. So after repeatedly being

refused care, I walked into the ER one night and told

them I was suicidal.

About 12 years ago, the left side of my face

suddenly went numb, but it went away just

as quickly and I didn’t think much of it. I

experienced a gradual loss of energy, but I’d

been working long hours and trying to build

a charitable organization; I figured I was just

burnt out. Everything changed in 2010.

When I first started experiencing nerve

pain on the right side of my face, I was terri-

fied. I didn’t know I had multiple sclerosis yet,

but I had looked up trigeminal neuralgia, and

I knew people called it the suicide disease.

When I looked at what my options were –

constant pain or major surgery that involved

opening up my skull – I knew why. I was think-

ing to myself, “My life is over.”

I worked in a rehab facility with people

who suffer from brain injuries, including some

people with MS, so I was quite comfortable

looking at images of the brain. I was able to

recognize that I had MS when I looked at my

own MRI scans. I brought this information to my

neurologist who repeatedly told me that I did

not have MS. He never pulled up my images so

MS CANADA Fall-Winter 201612

we could look at them together. I was furious.

You need a diagnosis in order to get help.

There are two ways that a hospital is

obliged to admit you: if you’re suicidal or if

you have chest pain. So after repeatedly being

refused care, I walked into the ER one night

and told them I was suicidal. I was so close to

starving to death that I needed to be put on a

feeding tube, so I had to behave like the patient

they wanted me to be to access the care I

needed.

While I was in the hospital in late 2011,

I realized that nobody was going to help me.

My husband was completely confused because

the doctors kept telling him nothing was wrong

with me. I lay there thinking to myself, “All right

Jennifer, you’re on your own here.”

I had to dip into an inheritance from my

mother to pay for new specialists through the

private system. Fortunately, my new GP was

willing to refer me to the MS clinic where the

diagnosis was quick and easy, and my neurologist

there helps me tremendously. When I realize that

I’m one of only 20 people in Canada who neuro-

surgeon Dr. Kaufmann has treated using the

particular procedure I underwent, I realize that

my pain really was that bad, and I feel validated.

The point is, you are the expert on what’s

happening to you. If you’re being denied

the care you need then you have to fight for it.

Ask for more tests. Find a second opinion.

Do whatever you need to do to be heard. Over

the last six years, I was forced to learn the hard

way how to get the help I needed.

Somewhere between 2-4 per cent of people

living with MS suffer from a rare condition called

trigeminal neuralgia (TN), , a severe chronic pain

condition that affects the trigeminal nerve, which

carries sensation from your face to your brain.

Left: Jennifer was unable to eat without pain and was admitted to hospital weighing only 109lbs. Right: Jennifer and her husband Daniel.

1 3

Practical MattersSexual dysfunction: Managing a common symptom

Intimacy and sexuality are important compon-

ents of a healthy and contented life. Multiple

sclerosis can affect sexual functions both directly

and indirectly, and can impact quality of life.

Symptoms can be broken down into the follow-

ing three categories:

PRIMARY SEXUAL EFFEC TS are physical

symptoms of MS caused by damage to nerve

fibres in the central nervous system.

SECONDARY EFFEC TS can arise as a result

of other MS symptoms or the medications used

to treat those symptoms.

The TERTIARY EFFEC TS on sexual feel-

ings and responses result from psychological,

social, and cultural attitudes and issues.

Everyone deserves intimacy. All

relationships need proper communication

and trust. The most important thing

I learned while dealing with sexual

dysfunction is that it’s okay to be

vulnerable. Intimacy doesn’t come from

functionality of your parts but the trust

you have with another person.

— AMANDA , DIAGNOSED IN 2007

Steps to managing sexual problemsThe good news is that primary and secondary

effects are, for the most part, treatable with

medication or other therapies. Since no two

people experience symptoms in exactly the

same way, we encourage you to speak with

your MS nurse or other healthcare professional

about which course of treatment is right for you.

Tertiary effects are less physiological and are

often managed with counselling, so don’t be

afraid to ask for a referral to a therapist.

Although sexuality can feel like a more

sensitive issue than many other MS symptoms,

sexual dysfunction often requires a similar

degree of adaptation and acceptance. Redefining

intimacy and sexuality within your life and finding

new ways of experiencing them can be incredibly

rewarding.

Communication is key: If you’re with a long-term partner, one of the most important steps in dealing with sexual dysfunction is having an open and honest conversation about it. Involving your partner in the process of seeking treatment can help equip you with the information you both need to properly communicate. In some cases, individual or couples counselling can be beneficial.

Learn more about sexual dysfunction and MS visit blog.mssociety.ca/2016-08/sexualdysfunction

MS CANADA Fall-Winter 20161 4

Fundraiser Spotlight Finding a community to call your own

“It’s been a challenging year of ups and

downs and adjustments,” says Samara. Proud

mother to three young boys, Samara was diag-

nosed with multiple sclerosis last fall. “I was

angry for a while, but I have a life to live and a

family to take care of. It was important to me to

push through and be positive.” What helped a

lot was finding a community. “I was amazed to

find out that I knew a lot of people affected by

the disease. So many people want to connect

and be helpful. Some people even reached out

to me. Finding a community to connect with

and ask for help is so important.”

Taking part in the Mandarin MS Walk is

one of the ways Samara was able to connect

with and return support to the MS community.

“It’s important to me that I do as much as I can

to raise awareness and help find a cure. If I can

turn something bad that’s happened to me into

something positive, I will.”

After registering for MS Walk she sent

messages to friends and family. “I thought,

I’ll put this on Facebook and see what happens.”

The messages of support and donations

were more than Samara could have imagined.

“I remember we raised $3000 in one day, and I

felt so overwhelmed.” By the day of the event

Team Bleiwas had 70 team members and had

raised more than $60,000. “Walking with 70

people on my team is an incredible memory.

Despite the rainy weather everyone was there.

It meant a lot to me. My kids walked with smiles

and didn’t complain. We were wet and cold,

but we had fun.”

For Samara being part of MS Walk and

having others to talk to about her MS was very

important. “It’s a matter of accepting it yourself

and being ready to talk about it. I know someone

who’s been recently diagnosed, and when she’s

ready to talk about it, I’ll be here for her.”

Samara Bleiwas was blown away by the support and sense of community she gained by participating in her first MS Walk.

1 5

From the CommunityYou’ve got the Love

Multiple sclerosis became a cause close to the

hearts of Nancy and Jon Love when their son

Jason was diagnosed with relapsing-remitting

MS in 2011. “He was 29 and it was our first

experience with MS. When I realized MS was

going to be an issue we had to face as a family,

I decided this was going to be the focus of my

charitable and volunteer career. I had a friend

sitting on the board of the Multiple Sclerosis

Scientific Research Foundation (MSSRF) and she

asked me if I would be interested in joining.”

Today, Nancy is the newly elected chair of the

MSSRF, has been on the board of the Toronto

Community Foundation, and is a council mem-

ber of Pathways to Education.

“I sat in on a focus group with caregivers,

doctors, and people with MS, and listened to

what’s important to them. It was really eye

opening to see the emphasis being put on

quality of life. It ended up being a really pivotal

moment for me to learn more about what that

means to people in terms of lifestyle, exercise,

diet, and access to treatments and care.

As board members of the MSSRF we

are acting as trustees and fundraisers for the

research funds. Ultimately, the research projects

are chosen by the medical advisory committee,

but my responsibility is to raise funds and

oversee the strategic deployment of those funds

into research. It’s been very gratifying, recently

to hear the exciting news concerning different

treatments and knowing that I can play a role in

facilitating research that has a lasting impact on

people with MS. It makes me feel driven to keep

fighting to end MS. I will do whatever it takes to

help find and facilitate the discovery of a cure

for this disease. It’s an exciting time in terms of

research. We feel that there is real hope.”

Jason is now in remission, and Nancy is

grateful to the people on #TeamFight – the

volunteers, fundraisers, and researchers – who

have made that possible.

To learn more about the Multiple Sclerosis Scientific Research Foundation (MSSRF) visit mssociety.ca/multiple-sclerosis-scientific-research-foundation

When I realized MS was going to be an issue we had to face as a family, I

decided this was going to be the focus of my charitable

and volunteer career.

MS CANADA Fall-Winter 201616

Action on MSRemoving barriers: Accessibility from the ground up

What does true accessibility look like?

The ability to access one’s surroundings is

crucial to living a life without barriers, but true

accessibility is more than just a physical issue.

Timely and flexible access to employment and

income supports; quality medical care and

treatments; reliable public transportation;

education and counselling; support for family

members and caregivers; workplace accom-

modations; and advancements in MS research

leading to better symptom management and

quality of life are all part of the access puzzle

for a person living with multiple sclerosis.

If living with a disability means experiencing

restrictions that put you at a disadvantage, then

achieving true accessibility means removing

those barriers that are restricting access in the

first place. While the burden of removing such

barriers should not fall on the person living with

a disability, it can be energizing for some people

to work towards effecting positive change in

their communities.

Karen Scott was diagnosed with MS in

2010 and has successfully advocated within her

neighbourhood to make space more accessible

for people using wheelchairs and mobility aids.

Through her grassroots approach to advocacy, Karen has successfully made her neighbourhood more accessible through the addition of curb cuts to sidewalks and an increase in the length of crossing signals.

17

I thought a wheelchair would mean the end

of independence.

Admitting that you need a wheelchair is

hard. Very hard. But once you come to terms

with it, a wheelchair provides the same heady

feeling of freedom that a driver’s licence gives

a teenager — you can go anywhere, anytime,

without asking anyone.

Or so you imagine. Reality hits when you

can’t cross the street because there’s no curb

cut in the sidewalk. When you have to sit in your

chair in the rain or snow because the bus stop

shelter is not wheelchair accessible. When you

realize a construction zone means going around

the block to get to where you’re going. When

you have to ask a complete stranger to push you

over a snowy sidewalk — not once, not twice,

but 30 times in one winter. The list of disabling

obstructions can be incredibly marginalizing.

When I began to consider putting Public

Works on speed dial, I knew something had

to be done. As a volunteer with the pedestrian

subcommittee of the Ottawa council on aging,

I had taken part in the development of a walk

audit tool that assessed the quality of the

pedestrian infrastructure in my hometown of

Ottawa. Through the MS Society’s social action

committee, a few other people living with MS

and I applied the audit to my neighbourhood,

and I liaised with Public Works and OC Transpo

for rehabilitation.

I was delighted with the results. A new

bus stop was added to a dangerous area, the

bus shelter closest to my home was put on the

list for curb cuts and a short crossing light was

lengthened.

It was energizing to see change happen,

and encouraging to note that it was the result of

the independent actions of a few people living

with MS. The process highlighted the need for

audits in other parts of the city and we therefore

formed a committee under the Ottawa Disability

Coalition and tweaked the audit to address our

needs more fully.

This year — if all goes according to plan —

we intend to complete three audits throughout

the spring and winter, submitting an audit report

to be shared with the city and other relevant

organizations around Ottawa, and developing

an advocacy checklist so that others may seek

change in their community.

I feel more independent now, and

not just because my neighbourhood is easier

to navigate without help — it’s because

I believe I can personally resolve at least

some of the problems that come my way.

Get involved in the Canadians with Disabilities Act consultation. Learn more at www.Canada.ca/Accessible-Canada

We have made considerable progress in making our society more inclusive, but there

is still work to do. Canadians with disabilities continue to face barriers in their daily lives.

What does an accessible Canada mean to you? Please take the time to participate in our online

consultation or to attend one of our public sessions in person. Together, we will make history.

— THE HONOURABLE CARLA QUALTROUGH, MINISTER OF SPORT AND PERSONS WITH DISABILITIES

MS CANADA Fall-Winter 20161 8

ACCESS TO SUPPORTS

Income & employment supports

Workplace accommodations

with employers

MS in the Workplace report

Institute for Research on

Public Policy (IRPP) report

ACCESS TO C ARE

Ongoing MS research into new treat-

ment options for all types of MS

Age-appropriate long term care

Caregiver supports

Peer-to-peer support

PHYSIC AL ACCESS

Accessibility audits

Workplace accommodations

with employers

Barrier-Free discussion paper

Canadians with Disabilities Act

We advocate on behalf of Canadians living with MS. Here are some of the areas of focus and tools

we are using to raise awareness of various accessibility issues across Canada right now to effect

change across the country.

Learn more about how Karen took action at blog.mssociety.ca/2016/07/removingbarriers/

19

Message from Yves

Last May for MS Awareness Month, we asked

people living with multiple sclerosis what

independence means to them. We received

many thoughtful answers that add to a rich

narrative of what it’s like to live independently

with MS, and to fight for that independence every

day (see our YouTube channel for our World MS

Day 2016 video series).

People living with MS often find themselves

in situations where it is necessary to advocate

to achieve independence, whether in securing

coverage for the newest MS treatment, negotiat-

ing accommodations to continue to do a job

one loves, or ensuring accessible public transit

to get around in one’s town or city. When we

raise awareness of what it’s like to live with MS

among community leaders and elected officials,

we are ultimately working to change the country

to accommodate people living with MS—so that

people living with the disease are able to live

independently in a barrier-free Canada.

In June we announced the publication

of the results of the Canadian Bone Marrow

Transplantation trial in The Lancet, which has

led to a new personalized treatment option

for those with a highly aggressive form of MS.

This treatment option remains a risky one, as is

evidenced by the death of a study participant

from serious infections following large doses

of chemotherapy to ablate the immune system.

The death serves as a reminder: the 23 partici-

pants who completed the trial accepted

significant personal risks and made an important

contribution to science, which today yields very

exciting conclusions.

In this edition of MS Canada, Jennifer

Molson shares her personal reflections on the

decision to embark on a trial of this kind, as well

as highs and lows she experienced throughout

the many years of follow-up. She also explores

the difficult decision to continue to participate in

the trial when it resumed following the death of

a fellow participant.

When we think about barriers to independ-

ence, we often overlook the barriers people face

within their own relationships. People living with

chronic illnesses and disabilities such as MS are

often in a position of asserting their autonomy

within romantic relationships, whether they are

dating someone new or attached for several

years. In this issue of MS Canada, we provide

some tips on how to navigate the sensitivities of

creating equality within relationships, from the

decision to come out about MS to a new partner

to overcoming the common MS symptom of

sexual dysfunction.

You are not alone. We are here for you. If

you have questions about how you can maintain

your independence, please call an MS navigator

at 1 844 859-6789.

Yves Savoie

President and CEO

The ability to make choices to look after ourselves. — EUGENE, SK

Being able to get around in my wheelchair. — MARIE, ON

The freedom to just live my life the way I want to live it. — JULIE, AB

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This year, consider creating a gift

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