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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.
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: 416-922-7538info@mssociety.ca 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.
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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.
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.
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.
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 msnavigators@mssociety.ca.
My team included my father (who traveled from Penticton), my brothers Cameron and David, and my sister-in-law Bev.
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
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.
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.
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 msnavigators@mssociety.ca,
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.
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.
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.
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 msnavigators@mssociety.ca.
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.
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
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.
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
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
peersupportprogram@mssociety.ca
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:
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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