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Fall-Winter 2017 FEATURE STORY An act of recovery ACTION ON MS The cost of living with MS WHERE I CALL HOME Age-appropriate long-term care RESEARCH The ins and outs of clinical trials NOTICE : This is the second last edition of MS Canada. To ensure the needs of our members and other stakeholders are being met, if you are unable to access online content at mssociety.ca please let us know. Please call 1-800-268-7582 ext. 3055 and leave a voicemail with your name, address and any concerns you have about us moving away from print.
Transcript
Page 1: Fall-Winter 2017 - MS Society€¦ · MS Canada, Fall-Winter 2017 Multiple Sclerosis Society of Canada Suite 500, 250 Dundas St W., Toronto, ON M5T 2Z5 1-800-268-7582 ext. 3055 F:

Fall-Winter 2017

FEATURE STORYAn act of recovery

ACTION ON MSThe cost of living

with MS

WHERE I CALL HOME

Age-appropriate

long-term care

RESEARCHThe ins and outs

of clinical trials

N O T I C E : This is the second last edition of MS Canada. To ensure the needs of our members and other stakeholders are being met, if you are unable to access online content at mssociety.ca please let us know. Please call 1-800-268-7582 ext. 3055 and leave a voicemail with your name, address and any concerns you have about us moving away from print.

Page 2: Fall-Winter 2017 - MS Society€¦ · MS Canada, Fall-Winter 2017 Multiple Sclerosis Society of Canada Suite 500, 250 Dundas St W., Toronto, ON M5T 2Z5 1-800-268-7582 ext. 3055 F:

MS Canada, Fall-Winter 2017

Multiple Sclerosis Society of CanadaSuite 500, 250 Dundas St W., Toronto, ON M5T 2Z51-800-268-7582 ext. 3055 F: [email protected] mssociety.ca/mscanadaCharitable registration no. 10 490 2523 RR0001ISSN 0315-1131Canadian Publications Mail ProductSales agreement no. 40063383

Cover photo by Ana Catuneanu

Interim president & chief executive officer:

Sylvia Leonard

Editor-in-chief: Meaghan KellyManaging editor: Jessica RichardProduction: Gillian Robinson

FSC FPO

Editorial committee & contributors

Nelson Agustin, BC & Yukon Division

Maheen Ceizar, research

Julie Crljen, Ontario & Nunavut Division

Donna Czukar, programs & services

Jody Fiorino, marketing & communications

Judith Kays, Atlantic Division

Julie Kelndorfer, government relations

Isabelle Laplante, Quebec Division

Mary Long, Atlantic Division

Megan Newman, Alberta & NWT Division

Ilona Niemczyk, Manitoba & Saskatchewan Divisions

Sarah Olivieri, Alberta & NWT Division

Pam Seto, marketing & communications

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.

The Standards Program Trustmark is a mark of Imagine Canada used under licence by the Multiple Sclerosis Society of Canada.

Save a tree. Subscribe to the MS Blog! If you enjoy

the human-interest stories included in our bi-annual

issues of MS Canada, you’ll love the MS Blog.

Subscribe at blog.mssociety.ca to receive updates

via email.

Page 3: Fall-Winter 2017 - MS Society€¦ · MS Canada, Fall-Winter 2017 Multiple Sclerosis Society of Canada Suite 500, 250 Dundas St W., Toronto, ON M5T 2Z5 1-800-268-7582 ext. 3055 F:

Fall-Winter 2017

FE ATURE

An act of recovery

by Alastair Swann

4

informRESE ARCH

The ins and outs of clinical trials

7WHERE I CALL HOME

Age-appropriate long-term care

9

relateMY MS JOURNEY

Lessons learned:

Living together with MS

11PR ACTICAL MAT TERS

Knowledge is power:

The MS Knowledge Network

13

actSTAY INSPIRED

Just Jen:

A story about my story about MS

14 #TE AMFIGHT

Icons and activism:

Challenging perceptions through symbols

15ACTION ON MS

Beware of hidden fees:

The cost of living with MS

16

Message from Sylvia

19

Visit blog.mssociety.ca

to see content based on your location, and use our new

accessibility features.

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MS CANADA Fall-Winter 20174

An Act of Recoveryrecovery (noun) /rə’kəv(ə)rē/

The action or process of regaining possession or control of something stolen or lost.

Some people living with multiple sclerosis experience a feeling of losing control over their lives.

Depending on the severity of relapses and progression, MS can also cause a measurable loss of

control over one’s body. This disease, which affects the central nervous system, impacts each

person differently, occasionally making the process of diagnosis lengthy and confusing.

For Alastair Swann, experiencing the pain and discomfort of his undiagnosed MS symptoms

drove him to turn to drugs and alcohol as a coping mechanism. By the time he received his

diagnosis of relapsing-remitting MS in 2015, he was also struggling with addiction.

While addiction and MS are two vastly different issues, they both imply a loss of control –

one existing in the realm of the body, and the other existing in the realm of the mind.

Here’s Alastair’s story.

In May, I participated in the Jayman BUILT MS Walk as team captain of the Recovery Stars.

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5

I was 16 when my first MS symptoms appeared.

What started with frequent trips to the bathroom

quickly escalated into a two week period of

numbness in my legs. I was 19 and living in British

Columbia when I was referred to a neurologist

for my first MRI. Unfortunately, I up-and-moved

to Alberta before receiving the results.

Since that time, I’ve experienced numerous

relapses, each leaving me with new degrees of

disability. I began self-medicating with cocaine

and alcohol as a means of coping with some of

the more uncomfortable symptoms. It wasn’t

until I was losing control of my bodily functions

and in such pain that I could no longer walk, that

I was finally sent to the emergency department.

At 27 years old, I was officially diagnosed

with relapsing-remitting MS.

COPING I conveniently dismissed my frequent

urination by blaming it on my alcohol consump-

tion. The truth is I knew something wasn’t right

with my health and I was embarrassed about my

bladder issues, so I used harmful substances as a

coping mechanism.

I got clean for two months before beginning

work in the oil fields in late 2012. At the same

time, I began experiencing sciatic nerve pain –

like someone was squeezing a nerve inside my

leg that shot pain right through me like a current.

At this point in my life, I discovered that

using methamphetamine took the pain away.

It numbed my nerves enough that I didn’t feel

the pain in my leg anymore, and it boosted my

energy levels so I wasn’t aware of my chronic

fatigue. At the time, I believed these substances

were helping with whatever I was going through

in my body.

In the summer of 2014, I experienced my

first major relapse: I lost the ability to lift my right

leg and began dragging it behind me. I continued

to experience a lack of control over my bladder

and bowels.

That summer, I went back to my job at the

oil field after a week of using, and was overcome

with exhaustion. I was having a hard time walking

and it felt like I had to go to the bathroom every

five minutes. I quit that same day – I told them I

was leaving to seek treatment for my addiction

– I never mentioned that anything was going on

with my personal health.

HITTING BOTTOM I’ll skip ahead a bit here

and gloss over several months of detox treat-

ment, doctors appointments, drug relapses,

recovery attempts and more doctors appoint-

ments. I still wasn’t walking properly, and I was

in a lot of pain. I was eventually referred to a

physiotherapist who focused on my hips, which

improved things a little, but my fatigue was at an

all-time high.

In January 2015, I ended up back in detox.

By the time I was better, I had lost my place to

live. My only option was an emergency shelter

for men with little or no resources. Things went

from bad to worse when I woke up unable to

physically get out of bed and having lost all

control of my bladder and bowels. I was taken to

the hospital where I was assessed by a neurolo-

gist who started me on a round of steroids, which

dramatically improved my ability to function.

From there, I was referred to the Edmonton MS

Clinic. I went for one visit, which was followed by

another major relapse: this time, I was paralysed

from the waist down. It turns out I had quite a

few active lesions on my brain and spinal cord.

I was discharged from the hospital with a

treatment plan, which I started in September of

2015. I was prescribed muscle relaxants to help

with nerve pain, and pills to help me sleep at

night, but I was in such a bad depression and felt

so hopeless that I took a whole weeks’ worth of

my medication at once. I just didn’t care.

Ultimately, for me, my faith is what got me

through. I had to look for a higher power, some-

thing greater than myself, to help me overcome.

I realized I had nobody left in my life – my family

had backed off and I just didn’t want to live that

way anymore. I guess I hit my rock bottom.

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MS CANADA Fall-Winter 20176

REGAINING CONTROL My next MRI revealed

six new lesions on my brain and spinal cord.

I was given a new treatment plan, which helped

immensely. I’m now on a second-line disease

modifying therapy (DMT) and I’ve been relapse

free for over a year.

For anyone who struggles with addiction,

the idea of being prescribed muscle relaxants

or antidepressants can be scary. I’m continually

researching alternatives to medication in order

to manage my MS. I’ve found that weekly mas-

sage therapy has greatly reduced the tension

and stress on my muscles. I also use essential

oils and eat a healthy diet. Exercise is a natural

anti-depressant, so I took up swimming, which

allowed me to ween off my medication and also

served to cool me down and ease the tension

in my back. Swimming regularly helps me sleep

better too, so I no longer need all the sleeping

pills. It even helps with my energy by reducing

fatigue, so I don’t need to take medication for

that anymore either.

Looking back, what has benefitted me the

most in my MS journey, is being completely

honest with doctors no matter how embarrass-

ing it may be – they’ve heard it all. Doctors can’t

read our minds, so letting them know what’s

helping and what isn’t is essential. I realized I

needed to be my own health advocate.

FINDING A COMMUNITY Following my diag-

nosis, I joined a support group through the

MS Society of Canada, and I now lead it as a

volunteer facilitator. The group is geared at

young people who are newly diagnosed, and it

has been a really strong support system for me.

When it comes to addiction, the saying goes

that one addict can best help and understand

another addict. I believe the same thing applies

with MS. Nobody really knows what something is

truly like unless they experience it themselves.

More recently, I’ve taken on the role of MS

Ambassador, through which I’ve begun working

to educate and inform others about what MS

is and how it affects me on a daily basis. I like

to make sure people know there are support

systems out there.

It’s important to me to be involved in the

MS community because MS is a disease we have

a good chance of beating in this lifetime, and I

want to be a part of that. Not just for me, but for

the people that come after me.

Today, Alastair is substance-free, an avid swimmer and an involved member of the MS community. Through his journey, he’s come to appreciate the art of slowing down and taking things one day at a time. He feels strongly that we need to be our own advocates – within the healthcare system and beyond. We hope that his story has provided some comfort to others who may be facing similar strug-gles. If you’re looking for additional information and support, MS Navigators are available Canada-wide, Monday to Friday, 8 a.m. to 8 p.m. Eastern time.  Navigators will assist you with getting information and support tailored to what you need, including connecting you with your local MS Society repre-sentatives. You can reach an MS Navigator by phone at 1-844-859-6789 or by email at [email protected].

My team included my father (who traveled from Penticton), my brothers Cameron and David, and my sister-in-law Bev.

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7

The Ins and Outs of Clinical TrialsPerforming a clinical trial requires a great deal

of resources. Namely, time, money and people.

The cost associated with running a clinical trial

depends on a variety of factors including disease

type, trial design and trial operations. Some trials

are longer than others, require different numbers

of participants and trial sites, collect different

types of samples and data, and involve varying

numbers of patient visits. Depending on where

these numbers fall, the costs to conduct a trial

increase as the number of years, people, sites

and visits increase, and can be in the millions of

dollars.

Facilities, equipment and staff are needed

to set up and carry out a clinical trial. Costs

associated with regulatory and ethics approvals,

patient recruitment, personnel (physicians,

nurses, clinical trial coordinators, technicians

and administrative staff) and data collection and

analysis are all important factors to consider

when budgeting for a clinical trial.

The cost to conduct a clinical trial will also

depend on the type of clinical trial; a phase I

clinical trial that involves less people and is often

shorter in duration is less expensive than a phase II

clinical trial, which is less expensive than a phase III

clinical trial, which usually includes up to thousands

of patients and multiple treatment arms.

Today’s clinical research landscape has

become more complex than ever before, and

clinical trials are increasingly more complex in

terms of design and operations. Experts have noted

that, in order to demonstrate that newer treatments

are safer and more effective than what is already

out there, researchers must conduct even larger

clinical trials that show significant improvements,

which raises costs. In addition, they emphasize that

regulatory bodies such as Health Canada often

require additional clinical trial data on safety and

efficacy, which also influences trial duration and

cost. Finally, trials involving new multiple sclerosis

treatments are often longer, more complex and

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MS CANADA Fall-Winter 20178

require multiple measures (clinical, imaging,

biomarkers, patient-reported outcomes, etc.) to

understand if a treatment is beneficial and safe

for a chronic disease.

Clinical trials aren’t simple, straight-

forward research studies, which means that

a tremendous amount of time and resources

are needed to undertake such an initiative.

Nevertheless, a clinical trial is a vital step to

making effective treatments available for

people with MS and other diseases. Clinical

trials inform everyday health decisions made

by clinicians, patients, their families and health

care policy makers. They make us aware of side

effects, unexpected benefits and the patients

who would benefit most from such treatments.

How do clinical trials impact people living with MS? An important breakthrough in MS research

was announced this spring when Dr. Luanne

Metz’s study was published in the New England

Journal of Medicine. The promising results

show that minocycline – a drug that’s been

around for decades – has the potential to

reduce the risk of developing MS in individuals

with early signs of the disease.

An MS neurologist, and professor at the

University of Calgary, Dr. Metz began her work

with minocycline in 2008 when she launched a

phase III, double-blinded, randomized, placebo-

controlled clinical trial with funding from the

Multiple Sclerosis Scientific Research Founda-

tion (the Foundation). The candidate drug?

Minocycline – an antibiotic that’s most com-

monly known for treating bacterial infections

such as acne. Early discovery research done

by Dr. Metz’s University of Calgary colleague,

Dr. Wee Yong, showed that minocycline had

anti-inflammatory and neuroprotective proper-

ties. This work, also funded by the Foundation,

eventually propelled Dr. Metz into leading a

clinical trial to see if minocycline could reduce the

chance that people who experienced symptoms

suggestive of MS called clinically isolated syndrome

(CIS) would progress to a diagnosis of MS.

The clinical trial consisted of 142 participants

from 12 Canadian MS clinics, who were randomly

selected to receive either 100mg of minocycline

twice a day or placebo for up to 24 months. Jill,

a participant from Calgary, shares her experience

and results from participating in the trial, “The

rate of people going from CIS to MS is very high,

and I’m so fortunate that this drug seems to have

stopped any further progression in its tracks. I’m

still undiagnosed and I strongly believe that it’s

because of this drug.”

The exciting results of this clinical trial show

that minocycline reduces the risk of developing MS

in individuals with early signs of the disease. It also

shows that treating MS, or early events predictive

of MS, as early as possible with a readily available,

affordable treatment like minocycline, is essential.

In Canada, the generic form of minocycline costs

around $1 per dose. Based on two doses a day,

this works out to around $500 to 600 per year,

which is considerably cheaper than other treat-

ments available.

The results from the trial are very encouraging

and position minocycline as a viable treatment

option for people with early signs of MS given its

availability, established safety profile and cost.

In addition, the study will help inform decisions

made by neurologists and people with MS around

early treatment and whether minocycline can be

considered as part of one’s treatment plan.

The journey of minocycline is a successful

example of “bench to bedside,” where researchers

translate findings from early laboratory studies into

clinical applications. The results of these efforts

will help to mobilize more options for people living

with MS, and contribute to the growing movement

to treat as early in the disease as possible.

Remain informed on all things MS research at mssociety.ca/msupdates.

The rate of people going from CIS to MS is very high, and I’m so fortunate that this drug seems to have stopped any further progression in its tracks.

I’m still undiagnosed and I strongly believe that it’s because of this drug.

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9

Where I Call HomeAge-appropriate long-term care

Do you or a loved one affected by MS have experience dealing with long-term care facilities? Tell us on Twitter @MSSocietyCanada.

Remain informed on all things MS research at mssociety.ca/msupdates.

The rate of people going from CIS to MS is very high, and I’m so fortunate that this drug seems to have stopped any further progression in its tracks.

I’m still undiagnosed and I strongly believe that it’s because of this drug.

“A huge problem when you are 45 years

old and living in a long-term care facility is that

everything is geared to a very different and

much older population. The food, programming

and activities, excursions, the gym equipment,

bathing, security and visiting regulations,

they’re all geared at people much older than

me. The policies are still designed for a differ-

ent generation – people who are closer to an

end-of-life stage.

Like most people, I enjoy spending time

with my peers – people who get the same

references as me and relate to my experiences,

people who get my jokes, who understand my

issues. I’m consistently surrounded by people

who are thinking about death and dying and I’m

just not there. I am forced to create friendships

with people who I know won’t be around as

long as me. That’s hard. It hurts to lose so many

friends. For those of us whose illness is affected

by stress, losing friends and seeing death can

be dangerous to our health. I understand that

multi-generational relationships can be a good

thing and the exchange of wisdom and youth-

fulness is positive, but not when it’s forced on

someone.

I want the government to rethink the word

‘disability’ so they can redefine the disability

supports they currently offer. As a person living

with multiple sclerosis in Canada, I don’t even

receive the same level of financial support as

seniors. This affects my ability to do things

and to be a valued member of my community.

Melanie Gaunt is 45. She loves going to her

local coffee shop for her favourite dark roast.

She works part-time and co-founded a volun-

teer advocacy group. She has lots of friends

she likes to spend time with. Melanie lives with

multiple sclerosis and her home is a long-term

care facility outside Halifax, Nova Scotia.

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MS CANADA Fall-Winter 201710

I’m physically, financially and socially isolated

and this makes everything harder. Purpose and

meaning play a big role in dignity and qual-

ity of life. I want to live in a place that I can

happily call home. That’s why I co-founded

Independence Now Nova Scotia – an advo-

cacy group for young adults living in long-term

care facilities. We want to share our voices with

the policy and decision makers so that they

can lead the changes that will allow us to live

more independently, no matter where we call

home.”

We are committed to improving quality of life

for Canadians affected by MS. As part of this

mission, we develop various programs and

services to connect people and we support

advocacy at all levels, including those who find

ways to advocate for themselves and others.

Staff and volunteers of the MS Society of

Canada also advocate to provincial and

federal governments about age-appropriate

long-term care. If you, or a loved one, are affected

by MS and are experiencing issues with living

independently in long-term care facilities,

tell us about it on Twitter @MSSocietyCanada,

send us a message at [email protected],

or call us at 1-844-859-6789.

Melanie, seated on the tandem wheelchair bicycle, took part in a local parade with some special friends. 

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11

My MS JourneyLessons learned: Living together with MS BY MICHAEL DALLE Y

My journey is our journey! MICHAEL DALLE Y S T. JOHN ’ S , NL

I’d like to tell you about my family’s journey with

multiple sclerosis. MS plays a large role in my

family – my mother, my sister and I have all been

diagnosed with this disease. We each live with

different symptoms but together we’ve learned a

lot about MS and about ourselves. And along the

way, we’ve learned some valuable lessons.

The year our family’s lives would start to

change forever was 2007. My sister, Kayla, was

having some mobility issues when she was

referred to the first specialist. She became para-

lyzed and spent the next two years in and out of

the hospital, not being able to walk. The many

treatments she tried weren’t helping her and in

the meantime, she sustained permanent

damage to parts of her body. She finally saw

a local neurologist who diagnosed her with

MS and put her on a new drug designed for

people with aggressive forms of the disease.

Three months later, at the age of 13, Kayla

took her first steps in two and a half years.

Lesson #1 – Never give up.

Three years later, the next diagnosis

would start to take shape. My family had

their hands full with Kayla’s diagnosis when

my mom started to feel numbness along

with pins and needles in her body. To most

people, that symptom could be chalked up to

Siblings Michael and Kayla both live with MS, as does their Mom, but the disease affects everyone it touches in different ways.

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MS CANADA Fall-Winter 201712

a number of minor ailments, but in my family,

it was a trigger. While waiting to see a neurolo-

gist, a doctor noticed that her optic nerve had

some lesions, prompting an MRI. Not long

after that, she received her own diagnosis of

MS. Because of her unique MS symptoms,

such as heat sensitivity and muscle cramps, my

mom has only recently found a treatment that

works for her. Lesson #2 – Everyone’s MS is

different.

Now to my role in this journey: I had just

started my final year of high school when my

hands started to feel numb. While waiting to

see a specialist, I lost most of their use – I

couldn’t hold a pencil or a fork or even brush

my teeth. I was supposed to be having one

of the best years of my life – grade 12 – the

end of one chapter and the beginning of new

chapters I’d yet to discover. I didn’t know it at

the time, but this was actually the beginning of

a chapter I didn’t expect or want. This was my

first MS attack.

My issue was diagnosed as ‘stress-related’ and I

moved on with my life, without the use of my hands.

I graduated high school writing my final exams with

a scribe, someone who wrote while I dictated my

answers. It was one of the hardest things I’ve ever done.

It was a full year before I regained the use of my

hands. I was then able to work steadily in customer

service for about two years when, one night, I had a

near fall and a bladder accident at work. The next day,

I was referred to a neurologist. My legs got worse and

I started using a walker to get around. I soon received

the news that I also had MS. I was told to forget

any more customer service work, and that full time

employment in general was unlikely.

I started chemotherapy right away to give my

immune system a ‘fresh start’ and worked hard at

physiotherapy, and graduated to walking with a cane.

The aggressiveness of my disease was similar to my

sister’s so our neurologist put me on the same drug

therapy as soon as he could.

I have been fortunate that my diagnosis came more

quickly than my sister’s, and I was able to start treatment

sooner, avoiding significant permanent damage to my

body. The tremors in my hands and my drop feet, which

require me to wear braces on both legs, are a small

price to pay for what I can do. Lesson #3 – Gratitude

is a powerful motivator.

Despite my doctor’s predictions, I currently have

a full-time job, and I share my story because I want

people to know that everyone’s journey is different.

I am inspired when I prove to myself and others that I

can do things I shouldn’t be able to do. My family has

been through a lot, but we’ve been through it together.

My journey is our journey and our journey is my jour-

ney. We will continue to be ambassadors for the MS

Society. We are thankful to have been recipients of

funding for equipment, such as Kayla’s wheelchair and

my leg braces, and for the therapies that have come

from research. These things allow us to live a better

quality of life and to continue our journeys, together.

Michael and Kayla have been through a lot, but have stuck together and walked together, raising funds at the St. John’s MS Walk.

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1 3

Practical Matters Knowledge is power: The MS Knowledge Network

MS Navigators represent the MS Society’s com-

mitment to providing the best possible quality

service for people affected by MS. One phone

call or email links a person to an MS Navigator,

who can provide carefully curated information

that is national in scope. The service is always live

during business hours, with multiple navigators

working together to ensure full coverage.

The MS Navigators are experts in MS

supports from coast-to-coast, as well as being

able to field general inquiries on topics like

medication, professional healthcare, symptom

MS NAVIGATOR SERVICE BY THE NUMBERS

Average number of telephone inquiries received per month since the service launched.

Average number of email inquiries received per month since the service launched.

Hours per day MS Navigators take phone calls or answer emails: 8 a.m. to 8 p.m. Eastern time.

Number of hours of training the MS Navigators receive before they begin taking inquiries.

Number of days in which the majority of inquiries are handled and resolved by MS Navigators.

PEOPLE ASK ABOUT.. .

Research

Income support

Drug and medication information

Peer support

management and MS research.

The idea of providing Canadians with a central

hub for accessing MS information emerged after

our community identified two clear needs: the need

for reliable access to quality information about MS,

and the need for assistance in navigating the web

of medical, community and government supports

available to people affected by MS.

The MS Navigator’s job is to be ready to assist

Canadians on whatever path MS takes them, and

to help provide clarity to individuals living with an

often-complex disease.

“My name is Laura and I’m an MS Navigator. Every day, I speak with people from all over the country. I’ve learned so much about healthcare, and government and community supports across the country. It’s such an important service because of our scope. We’ve been reached by people, often living in rural locations, who have lived with multiple sclerosis for some time but have never connected with anyone about it before. And it’s a very accessible service. A woman I spoke to was very hesitant – she wasn’t trusting she would get good information because she had been rushed off the phone by doctors’ offices and agencies. We provided her the support she needed, and she was surprised by how available and comprehensive we were. She’s reached back out to us from time to time. My mom has relapsing-remitting MS, so I can understand why people need quality, fast information and that definitely shapes my work with the MS Society and the MS Navigators.”

Contact an MS Navigator at 1-844-859-6789 or [email protected].

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MS CANADA Fall-Winter 20171 4

Stay InspiredJust Jen: A story about my story about MS Jen Powley is 39 years old and lives with primary progressive multiple sclerosis. She recently toured Canada promoting the release of her first book, Just Jen, a novel about her experience living with multiple sclerosis, which was written by dictation because her MS doesn’t allow her to type. Diagnosed at 15, she has seen her MS progress steadily ever since. At 22, she used her first manual wheelchair. At 27, she moved to a power wheelchair. From there, she got a head controlled power chair. Today, she relies on somebody else to drive it. Still, through all of it, she remains just Jen.

Where does your story begin? When I was first

diagnosed, I was ashamed. I thought there was

something evil growing inside me that would one

day rear its ugly head. I eventually came to terms

with the fact that I have MS, mostly because I just

couldn’t avoid it anymore. I’m careful to make sure

my life isn’t defined by my MS.

How has MS changed you as a person? Fresh out of

high school, I was accepted into the physiotherapy

program at the University of Alberta, but I was soon

told that my balance wasn’t good enough to practice,

so I quit and did a degree in journalism instead. When

I could no longer take pictures or drive due to my

MS, I became an urban planner. My life thus far has

been a series of re-adjustments, perpetually finding

new things I can do within my level of ability.

So when and how did writing a book enter the

plan? When I was looking for books about MS

after I was diagnosed, all I could find were medical

texts, and that became something I wanted to

change. I’ve also learned a lot about living with MS

through my own experiences, which I never want

to lose sight of. What better way to hold onto the

things I’ve learned than to write them all down?

The people I was dictating to were all very

patient, which taught me a lot about my own

patience. I quickly learned that what I may think is

obvious may not be to other people. I also learned

not to be afraid to say what I want to say. There

isn’t any room for hesitation when you’re dictating

your book to someone, you can’t backspace and

pretend the thought never happened. It’s out there,

and somebody else has already heard it.

I got an early review from a blogger who also

lives with primary progressive MS, who gave my

book a favourable review. He praised the fact that

no matter how my disability impacts me, I’m still

Jen, first and foremost. So after everything is said

and done, I feel great about my decision to share

my story. I want to show the world that people

with disabilities are just that: people.

ph

oto

by

An

a C

atu

ne

anu

Jen Powley (centre) surrounded by her Walk team at the Jayman BUILT MS Walk in Edmonton.

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1 5

#TeamFightIcons and activism: Challenging perceptions through symbols

At first glance, the Forward Movement cam-

paign may seem as simple as changing a

graphic. For co-founders Dylan Itzikowitz and

Jonathan Silver, the change in imagery means

so much more.

“Changing the symbol itself means a lot to

a lot of people, but the change is also a conver-

sation starter. We need a cultural shift,” Dylan

says, “The symbol is a catalyst.”

When Dylan spent eight months in a

wheelchair as a result of being a pedestrian

victim in a car crash last year, he says he real-

ized how inaccessible the world around him

was. Some buildings have the accessibility icon

on the door, but no push button to open the

door. Or some elevators lack the width and lane

space for a wheelchair to maneuver in and out

of them. Many businesses have stairs outside of

their entrances.

He also learned a lot about cultural atti-

tudes toward disability. When strangers offered

help, Dylan says he was grateful, but sometimes

that help came with comments like, “You’re so

inspirational,” or, “Good for you,” and he felt like

he was being pitied.

While he was recovering from the accident,

he heard about the Accessible Icon Project,

based out of the US, and ordered stickers show-

ing the dynamic icon. By showing a person in

motion on a wheelchair, the emphasis is shifted

to the person and the action, says Dylan, rather

than being on the wheelchair itself.

The Forward Movement officially began in

Canada when Dylan met Jonathan in November of

last year. They were both advocates for the dynamic

icon, but they quickly realized that they want to do

more than hand out stickers; they want to advocate

for real systemic change.

Reaction to the new symbol in Ontario has

been positive. The City of Stratford has adopted

the new icon for its city-owned accessible parking

spaces. In May, MPP Bill Walker tabled a resolu-

tion calling for the province to adopt the new

symbol. The next step is to get the resolution to the

stage where it is debated and voted on – and to do

this, they’ve been collecting endorsements from

organizations, including the MS Society of Canada.

While the Forward Movement recognizes that

no single icon can represent everyone with mobility

issues, they still believe the dynamic symbol is a step

forward in challenging perceptions of disability. It’s

a conversation that Dylan hopes will go beyond the

every day, and get to the point where it’s influencing

policy at the federal level.

Accessibility advocates are working hard to effect change at all levels of government. Do you have an advocacy project you think will improve #LifeWithMS for Canadians? Let us know @MSSocietyCanada

To get involved…

#TheForwardMovement

www.theforwardmovement.ca

theforwardmovement

@theforwardmove

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MS CANADA Fall-Winter 201716

Action on MSBeware of hidden fees: The cost of living with MS

Yes, I would say that having MS definitely does

cost money. It’s the equipment people need to

have their life back that costs the most money.

You pay for the wheelchairs, the walkers, the

canes, the hand controls in vehicles and the

lifts in your home.

For me, it all started when I was admitted

to the hospital for a bladder infection a while

back, and ended up being there for a whole

month. Before that, I was able to transfer from

my chair to my bed and my toilet on my own.

After my hospital visit though, I couldn’t do

that anymore, so I had to have a lift installed

in the bathroom and in the bedroom to get

on the bed. Those two lifts, as well as some

rimmed plates and specialized cutlery ended

up costing upwards of $9,000. Four years ago,

I had to stop driving and as a result we spent

nearly $20,000 on daycare because I couldn’t

drive the kids to school and pick them up.

The financial burden of MS all depends

on how fast you deteriorate. I mean, 10 years

ago I could still walk and now I’m in a wheel-

chair. I stopped working as an electrician 12

years ago at 26 years old. I have an excellent

support system, my wife helps out with so

many of the daily chores and errands, and I

have neighbours and family who help with

lawn care and that sort of thing. Those things

would all cost money if I didn’t have their help.Andrew was diagnosed with relapsing-remitting multiple sclerosis in 2003. He now lives with secondary progressive MS. He lives with his wife and three boys in British Columbia.

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17

If you live with MS in Canada, you may face

difficult financial decisions in your everyday life,

including decisions about home adaptations,

medical supplies and equipment, rehabilitation

services, child care, homemaking and medica-

tions, among other things. For some, this may be

compounded by no longer being able to work

due of the unpredictability of the disease and the

barriers that exist in our support systems.

The unpredictability and episodic nature of

MS poses a challenge to maintaining an adequate

quality of life. This, along with the challenges of

living with a disability that has both visible and

invisible symptoms, and the barriers in our sup-

port programs across all levels of government,

can lead to immense financial challenges for

Canadian families trying to manage the realities

of living with MS.

Beyond the financial impact these barriers

to income can have, MS can also be a costly

disease to live with in its own right: medications

and therapies not covered by insurance providers

including wellness activities such as yoga,

pilates, exercise classes and CAMs (e.g. massage,

acupuncture and nutrition); late fees or charges

for missed appointments due to difficulty with

memory as a symptom of MS, or transportation

issues; the extra costs related to booking

accessible travel; and the cost of hiring someone

to help out with things around the house that

you are no longer able to perform. These, among

other expenses, can add up quickly and become

very costly, especially once you factor in the

ways MS can limit one’s ability to work full time

or at all.

Potential costs of living with MS include, but are

not limited to the following:

For more information on our advocacy efforts, visit mssociety.ca/get-involved/take-action.

Delivery fees

Accessible

parking

Late fees

Medical supplies and

equipment

Rehabilitation

Meal preparation

Wellness programs

Help around

the house

Home and vehicle

adaptations

Taxi fare

Medications

Child care

Homemaking

Time investment

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MS CANADA Fall-Winter 20171 8

Our goal is to ensure that Canadians affected by MS have the opportunity to participate

fully in all aspects of life. Through in-person meetings with more than 80 members of

parliament this past spring and our annual e-action campaign, we continue to advocate

on behalf of Canadians affected by MS for the following three key items:

1Make work … work by including more flexible employment to allow

people with MS and episodic disabilities to remain in the workforce.

2Make ends meet by improving income and disability supports for people

with MS who are unable to work or can only work on an intermittent basis.

3Make access a reality by implementing accessibility legislation,

increasing access to treatments and investing in comprehensive home care.

MS PEER SUPP ORT PROG R A M

Sometimes the best person to talk

to is someone who understands

exactly what you’re going through.

Peer Support Program volunteers

are people from across Canada

who live with MS and are

provided with extensive training

to ensure they have the skills to

best support you. To take part in

this program, send an email to

[email protected]

or call 1-800-268-7582 ext. 3149

and request an application.

MS NAVIG ATORS

The MS Navigators are

here to provide you with

information and support

tailored to your needs.

They can be reached by

email at msnavigators@

mssociety.ca or by phone

at 1-844-859-6789

between 8 a.m. and 8 p.m.

Eastern time.

VOLUNTEER LEG AL

ADVOC ACY PROG R A M ( VL AP)

This program is designed to

provide information and resources

to assist you in accessing legal

and advocacy supports, and

advocacy and/or legal challenges

in the areas of disability rights,

housing, employment, income

security and more. Through

this program, we are also able

to provide support in filling out

applications for Canada Pension

Plan Disability (CPP-D) benefits

and other income security

applications.

There are programs we’ve put in place to assist you and your family as you navigate the

costs and financial barriers associated with MS:

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19

Message from Sylvia

It’s been a big year for the multiple sclerosis

community, including the launch of the MS pro-

gression study, the growth of the MS Knowledge

Network and the 14th disease modifying therapy

coming to market, among many other great

successes. I am happy to report progress on our

journey to end MS.

The Canadian MS Progression Cohort will

serve as a unique pan-Canadian opportunity, to

answer critical questions about MS and why the

disease progresses for some but not for others.

The goal of the cohort is to collect biological,

clinical and real world findings to address various

MS questions and create a comprehensive

picture of progression in the disease. In early

2018, the team selected to lead the study will be

named and begin their work. We look forward to

the cohort getting underway so that we can get

closer to the answers we need.

As with all journeys the road has not always

been smooth, and today as I write this, we are

still awaiting a decision from Health Canada on

the approval of Ocrevus for primary progressive

MS. We remain hopeful that we may soon see the

approval of the first drug treatment for primary

progressive MS in Canada, as progressive MS

remains a priority for us, both from a research

and awareness perspective.

This year has also seen the significant growth

of our MS Knowledge Network, including great

strides in our MS Navigator program, which

responds to people looking for information and

support about MS. This year, we are tracking to

assist with more than 4,000 inquires on topics

that include medications, health services,

symptom management and income support,

to name only a few. We are receiving positive

feedback about this program and look forward to

its continued growth to support people affected

by MS across Canada.

This past August, we partnered with

A&W Canada to host our Burgers to Beat MS

campaign for the ninth year in a row, and

welcomed the team captain of our national

women’s soccer team and two-time Olympic

medalist Christine Sinclair to join our fight.

Christine’s mom Sandra lives with MS, so the

cause is close to her heart. With Christine’s help,

this was our most successful year to date and

we raised over $1.8 million towards programs,

services and innovative MS research initiatives.

We thank Christine, A&W Canada and the nearly

900 franchisees that helped make this year a

truly unforgettable experience.

Best wishes to everyone as we head into

the holiday season, and Happy New Year to you

and yours.

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