FEATURE STORY An act of recovery 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. Fall-Winter 2017 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
Transcript
FEATURE STORYAn act of recovery
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.
Fall-Winter 2017
ACTION ON MSThe cost of living
with MS
WHERE I CALL HOME
Age-appropriate
long-term care
RESEARCHThe ins and outs
of clinical trials
MS Magazine, Fall-Winter 2017
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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
Story of a caregiver
11PR ACTICAL MAT TERS
Knowledge is power:
The MS Knowledge Network
13
act
The ECHO Approach
A technique to feel better!
14
Physical Activity to
Live Better with MS
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 MAGA ZINE 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 MAGA ZINE 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.
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 MAGA ZINE 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.
“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.
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.
MS MAGA ZINE 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
Melanie, seated on the tandem wheelchair bicycle, took part in a local parade with some special friends.
11
My MS JourneyStory of a caregiverBY CHANTAL JOUBERT
In the early 1980s, Roger experienced
several episodes of numbness, loss of
balance, muscle weakness and constant
fatigue. After a meeting with a neurologist,
the verdict was handed down: Roger had
multiple sclerosis. Right from the start,
the disease progressed insidiously. It soon
became clear to Roger, an athlete and a
professional with high ambitions, that his
life wouldn’t be exactly the way he had
imagined. At that time, there was no known
drug to treat MS. The only thing to do was
to live and hope things would improve.
When I chose to unite my life with his, I had some idea
of what I was getting into, even though there was very little information on MS.
MS MAGA ZINE Fall-Winter 201712
It was only a few years later that I first met
Roger. I was working full-time for the Rimouski
municipal police force, days, evenings, nights
– that’s life for a patrol officer! As for Roger,
he had to stop working. When I chose to unite
my life with his, I had some idea of what I was
getting into, even though there was little or no
information on MS, its causes, its effects and
especially the kinds of medications that might
cure it. I dedicated my love and energy to my
boyfriend and I remained by his side through
thick and thin. For us, there was no possibility
of playing sports as a couple or hiking in the
great outdoors. However, we could enjoy good
restaurants, going to the movies, short trips
and, most of all, our life together.
Over the years, Roger’s autonomy
declined. We had to adapt the house to make
it easier for him to get around and reduce the
risk of falls. Gradually, we had to abandon our
trips to sunny climates. And we also made a
difficult decision: not to have children. This was
another heartache but, since we didn’t know
what the consequences of the disease might
be or if it was hereditary, we didn’t want to take
unnecessary risks.
Since I retired, in April 2015, I’ve been with
Roger full-time. I’m responsible for everything
to do with the maintenance of the house and
cottage and Roger’s mobility (he uses a three-
wheeled scooter to move around). I’m nurse,
caregiver, psychologist, therapist, friend, coun-
sellor, wife, etc. Both Roger and I have to make
constant adjustments. We have some problems
related to the disease, and I have to admit that
sometimes I get impatient and wish I could get
away! But I also know that I love my husband
deeply and we always get over the problems. We
always find help and a solution. I have an excep-
tional husband – generous and understanding
– and I know he’s aware that sometimes it’s very
hard for me to fill my role of full-time caregiver.
We’ve been together for more than 32 years.
We’ve had some wonderful times and we’ll
experience many more of them together.
To cope better with MS, I started to get
involved with the Multiple Sclerosis Society of
Canada in 2010. In fact, my first contact with
the MS Society was in 2009, when I decided
to participate in the Quebec City Chapter’s MS
Walk. I really enjoyed the experience so, when
I was approached the next year and asked to
be honorary chair of the Bas-Saint-Laurent
Chapter’s first MS Walk, I was happy to agree.
Since 2013, I have been a member of the Bas-
Saint-Laurent Chapter’s board of directors,
whose chair I became in 2015. I have also been
a member of the Quebec Division’s council of
chairs since 2016.
When I chose to make a life with Roger, I
knew it would be full of challenges. We’ve had
our ups and downs – moments of fear but also
of profound joy. But it’s the life I chose and I
wouldn’t change it for anything in the world.
Because Roger is worth much more than every-
thing I could ever do for him.
I’m nurse, caregiver, psychologist, therapist, friend, coun sellor, wife, etc.
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.”
For more information on the ECHO Approach and the related training, visit uqtr.ca/fc.mieuxetre (in French).
1 5
Physical Activity to Live Better with MS
We all know it: regular physical activity has
positive effects on both physical and mental
health. And no, there’s no exception for people
with multiple sclerosis. Indeed, current research
shows unequivocally that physical activity is
beneficial for people living with MS. Doctors
even go so far as to say that it is now considered
as an indispensable component of the overall
management of this disease.
It’s true that the symptoms associated
with MS can make it complicated to engage in
physical activities. In that case, it’s important to
adjust to people’s abilities, rather than focusing
on their disabilities. As a matter of fact, numerous
physical activity programs have been set up for
people with MS.
More specifically, aerobic activities, such as
swimming and rapid walking, along with muscle
building exercises, can enhance intestinal function,
muscle strength and balance, while consider-
ably lessening fatigue, which is often extreme in
people with MS. As for stretching exercises, they
make muscles more flexible and therefore increase
mobility, as well as reducing anxiety.
Véronique Dallaire, who has MS, has
been doing yoga for almost six years. She is so
convinced of the benefits of this physical activity
for her disease that she opened her own studio,
Yoga Dandelion, in Quebec City, where courses
are offered for people with limitations, such as
reduced mobility or chronic pain. “I want to make
yoga accessible to people with disabilities,” she
announced. She tells us that her acceptance
of her diagnosis is almost entirely due to yoga.
“Yoga enables you to accept things as they are.
It’s a connection between body and soul. What’s
more, the benefits are rapid and long-lasting,”
she added.
To sum up, it doesn’t matter what kind of
physical exercise you do – the important thing
is to keep moving. Keep moving to reduce the
symptoms of the disease but also to improve your
mood and quality of life. And don’t forget to focus
on your abilities!
For more information on the ECHO Approach and the related training, visit uqtr.ca/fc.mieuxetre (in French).
Check out the toolkit on fitness for people with MS here: http://bit.ly/2ypai3B.
MS MAGA ZINE Fall-Winter 201716
Action on MSBeware of hidden fees: The cost of living with MS
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.
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.
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 MAGA ZINE 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.
There are programs we’ve put in place to assist you and your family as you navigate the
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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