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
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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
Getting to the heart of MS
11PR ACTICAL MAT TERS
Sexual dysfunction: Managing a common symptom
13
actFUNDR AISER SPOTLIGHT
Inflamed in the membrane:
Ending MS one word at a time
14 FROM THE COMMUNIT Y
Something to look forward to: A lifelong friendship
by Sarthak Sinha & Harla Bergmann
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
SA SK ATCHEWANEDITION
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 [email protected]
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 JourneyGetting to the heart of MS
I tried to put my challenges on the sidelines but I definitely would have benefited from somebody
asking me, ‘Are you okay?’
At 16, Sheena was diagnosed with relapsing-
remitting multiple sclerosis. “I woke up one
morning and I couldn’t hold a pen in my left
hand,” she says. The skill and precision she
had gained through her classical piano train-
ing and self-taught guitar skills vanished for
one life-altering month after her first album
was released. She worked for many years to
overcome her fear of the physical decline
that can come with MS, and spent most of
her creative energy exploring the underlying
challenges and demands of living with MS.
From the song You’ll Feel It or You Won’t written and performed by Sheena Grobb, diagnosed with MS at age 16
Yah, I’m scared.
Oh, I’m so scared.
Scared of losing myself again.
And I’m tired.
Oh, I’m so tired.
Tired of carrying all I’ve been.
Ph
oto
by
Ju
lie E
pp
.
MS CANADA Fall-Winter 201612
Although her initial symptoms did not stop
her from becoming a musician and teacher,
she found it difficult to cope with the physical
and emotional aspects of MS. “I tried to put
my challenges on the sidelines but I definitely
would have benefited from somebody ask-
ing me, ‘Are you okay?’” says Sheena. It was
this experience that led the Winnipeg-based
singer-songwriter to lend her voice to support
others affected by MS.
Recovering and maintaining her health
remains Sheena’s main priority, which means
keeping touring to a minimum, but that hasn’t
stopped her from getting the attention of
recording studios, event planners, choreog-
raphers and videographers alike. In 2011, she
was approached by a couple who were so
deeply impacted by her performance at the
Winnipeg Folk Festival that they offered to
organize an event to fund her next album. The
gesture is what kept Sheena anchored to her
music, despite her own reluctance to continue.
Now 32, Sheena devotes her life to reach-
ing out to young people with MS. Sheena joined
in the planning of an MS conference called The
Heart of It, for people in their 20s and 30s who
live with MS or are caring for someone who has
MS. She led a songwriting session for people
to express their thoughts. “I wanted to offer a
vehicle for people to express things that are
weighing on them and transform it with art,”
explains Sheena. “MS can be a very challenging
topic but also something we can transcend
together.”
Photo (left) by Julie Epp. Sheena offers Health Coaching (right) with an emphasis on emotional wellness, helping others with MS to gain tools to express and resolve their feelings, alleviate stress on the body, and restore a sense of authenticity and fulfillment. For more information visit www.sheenagrobb.com.
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 Inflamed in the membrane: Ending MS one word at a time
Just after the birth of her son in 2011, Shannon
Bachorick was diagnosed with multiple sclerosis.
Almost immediately, she formed her MS Walk
team. Shannon’s lifelong work in the field of
linguistics helped her come up with her team’s
clever name: Inflamed in the Membrane. In 2015,
after three years of walking and raising more than
$10,000 for MS research and programs and servi-
ces dedicated to improving the lives of Canadians
living with MS, the team decided to take on an
extra challenge. They signed up on a whim for
their first MS Bike just because it “sounded like
fun.”
Shannon and her team like to think outside
the box when it comes to fundraising for their
ride. It only seemed fitting, given Shannon’s
background in linguistics, that they host a spelling
bee! Overwhelmed by the positive response
from the community, the team surpassed their
fundraising goal and generated lots of buzz and
awareness in the community. Teams of four
compete for prizes and word-nerd glory. Other
fundraising tactics at the event include raffle
prizes, a 50-50 draw, and the ability to purchase
buzzigans, allowing teams who have spelled a
word incorrectly to remain in contention.
Shannon appreciates that a portion of the
funds raised stay in Saskatchewan and support
local programs and services.
“I ride to raise awareness and money, and for
the fun of it! I still don’t know what has made me
so lucky to have such a great team riding with me,”
says Shannon. Inflamed in the Membrane’s Adult
Spelling Bee has raised more than $6,000 to date,
and everyone is looking forward to participating
again next year.
Shannon formed her MS Walk team, Inflamed in the Membrane shortly after being diagnosed in 2011.
1 5
From the CommunitySomething to look forward to: A lifelong friendshipBY SARTHAK SINHA & HARL A BERGM ANN
One year into my MS research I realized I was
missing a fundamental element: the human
aspect. I reached out to the MS Society to
inquire about programs that would connect me
with people who live with MS, and so began my
involvement with the Friendly Visiting program,
and my lifelong friendship with Harla.
I was so nervous on the day we met that
I prepared a list of questions to fill potential
awkward silences. Harla was also quite nervous,
but getting to know and appreciate each other
turned out to be effortless.
In no time at all, we knew each other’s
In a world run on tight schedules and hard deadlines, our visits are a chance for us to pause and enjoy the moment.
— HARLA , DIAGNOSED WITH MS
IN 1992 AT AGE 18
routines, interests, and family histories, and
discovered our mutual love for the show
The Big Bang Theory! The memory we both
agree holds a special place in our hearts is the
surprise birthday party I threw for Harla. It was
such a special occasion, and a chance for the
two of us to finally meet the people we had
talked and heard so much about.
In a world run on tight schedules and hard
deadlines, our visits are a chance for us to pause
and enjoy the moment. Harla put it best when
she said our visits “give us something to look
forward to all week.”
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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GIFT IN YOUR WILLEvery year, generous Canadians
like Jim and Diane help people
living with MS and their families
by creating a gift in their will to
support MS research and services.
This year, consider creating a gift
in your will to support Canadians
living with MS.
