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Annual meeting of members on June 15 – see notice of AGM and
proxy on page 10.
http://mssociety.ca/en/http://mssociety.ca/en/
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I am always thankful for the many opportunities I have to be out
in the community speaking to those living with multiple
sclerosis.
I speak to people with MS who are passionate about their work,
their families and their health. They strive to make informed
decisions that will enable them to have a better day with multiple
sclerosis. I see tremendous value in harnessing this passion and
using the voices and opinions of people with MS to inform the work
we do every day.
This year, for the first time, we included people with MS on our
independent research grant review committees. As these committees
review grant proposals submitted for MS Society research funding,
people with MS weigh in on the potential impact of each proposed
research project on their daily lives. In the fall of 2012,
research priorities discussion events across the country brought
together researchers and people living with MS to generate
impactful conversations about the future direction of MS research.
Over 6,000 people responded to the Listening to People Affected by
MS initiative, and the forthcoming results will inform our
programs, services and advocacy work across the country.
This issue of MS Canada focuses on what it means to live well
with MS. For some, physical activity plays a vital role in managing
the symptoms of MS. It’s in this context that we are pleased to
launch the forthcoming physical activity toolkit, which will help
guide people with MS who want to exercise but may not know where to
begin. Also in this issue is a special insert on occupational
therapy, a field focused on improving function in all areas of
life, whether social, professional, mental or physical.
A note of recognition and gratitude is extended to Genzyme, a
Sanofi Company, for their support of this edition of MS Canada
through an unrestricted educational grant. As MS Walk and MS Bike
events approach this spring and summer, I encourage you to join me
as a participant in the MS Walk or MS Bike tour closest to you.
These events offer a tremendous opportunity to be connected in your
community and to be physically active while raising funds for
people living with MS. ■
Yves Savoie President and CEO
President’s message
Yve
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Ms Canada, spring/summer 2013
Published by the Multiple Sclerosis Society of Canada175 Bloor
St. E., Suite 700, Toronto ON M4W 3R8
Tel: (416) 922-6065 • Fax: (416) 922-7538Toll free: 1-866-922-6065 • Website: mssociety.ca/mscanada
Charitable Registration no. 10774 6174 RR0001
Our Mission: To be a leader in finding a cure for multiple
sclerosis and enabling people affected by MS to enhance their
quality of life.
President and chief executive officer: Yves SavoieEditor-in-chief:
Tiffany Regaudie
Managing editor: Krysta Celestine ISSN 0315-1131
Canadian Publications Mail ProductSales Agreement No.
40063383
ON THe COVeR: Sherri Allen was diagnosed with MS
in February 2002. She is a mother of two in Surrey, BC,
where she lives an active life. Sherri volunteers with the MS peer
support program.
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Managing fatigue and sleep disorders in MS | 4
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CANADA
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Annual meeting of members on June 15 – see notice of AGM and
proxy on page 10.
http://mssociety.ca/en/information/msnewsletter.htm
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M atthew was diagnosed with MS just days before his 17th
birthday. “I kept to myself and closed everyone off,”
he says. “But as time went on I realized there was nothing to be
afraid of. MS doesn’t have to change your life.”
In 2012, while in high school, Matthew joined the MS Walk with
his cousins. Over 2,000 of Matthew’s school mates supported him by
donating as he raised funds for people with MS. His experience
helped him learn more about MS and let him know he was not
alone.
“MS made me more aware of how my body and mind work, and how I
can better cope with the disease,” Matthew says.
For Matthew, health is important when it comes to living well
with MS. He exercises regularly to manage his fatigue. The Canadian
Physical Activity Guidelines for Adults with MS, which will be
officially released in May, recommends that people with MS do at
least thirty minutes of moderate intensity aerobic activity and
strength training exercises (for major muscle groups), twice a week
each. Following the guidelines may help reduce fatigue, improve
mobility and enhance quality of life.
For more information on the MS Walk, visit mswalks.ca. For
information on the Canadian Physical Activity Guidelines for Adults
with MS, visit mssociety.ca/physicalguidelines ■
MS Walk: We’re in this together
Matthew, MS Walk participant
B renda was working as a horseback riding instructor when she
was diagnosed with MS in 2011. As her symptoms progressed and the
job felt more physically demanding, she turned to the Government of
Manitoba’s services for people with disabilities for help with
searching for a new career.
“MS didn’t stop me from finding another job,” says Brenda, who
now works as a sales and marketing assistant. For Brenda, a
positive attitude is important for living well with MS. “Staying
employed and interacting with people on a daily basis definitely
helps with my attitude toward MS,” she says. “My employers are
pleased with my skills, and I think they’d be surprised to know
that I have MS.”
In 2012, the Government of Canada appointed a panel to consult
with Canadian businesses on employing people with disabilities. The
panel’s report, Rethinking disAbility in the private sector, found
that up to 795,000 of working-aged Canadians with disabilities are
unemployed, even though their disability
does not prevent them from working. The report stated that
leadership and effective community partnerships are important in
successfully hiring people with disabilities.
For more information on the panel’s report, visit bit.ly/MgigM5
■
Rethinking disAbility
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Help change lives for the better, join over 60,000 walkers and
volunteers across Canada in the movement to end MS.
Register at mswalks.ca or 1-800-268-7582
Lace up for someone
you love
National sponsors:
http://mswalks.ca/http://mssociety.ca/physicalguidelines/http://www.hrsdc.gc.ca/eng/consultations/panel/index.shtmlhttp://mswalks.ca/
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Dan says he feels lucky. After several attacks of double vision
and a diagnosis of multiple sclerosis, he remains healthy and
almost symptom free since 1985. “What has always been constant,
even after my double
vision attacks were over, was the symptom of fatigue,” he says.
“Over the years I’ve developed ways to manage my energy levels, but
I’ve definitely felt the effects of fatigue on my social and
professional life.”
Dan needs an average of nine hours of sleep every night, which
limits his time at late-night social gatherings. For him, staying
up late means scheduling time in the morning to sleep in. Regarding
work, he says, “I’ve been lucky enough in my career to have control
over my schedule. If I’m travelling for my
job, I make sure to never schedule meetings in the morning.” Dan
stresses the importance of asking for colleagues to accommodate a
schedule that allows for rest.
Dr. Daria Trojan, a physiatrist at the Montreal Neurological
Institute and Hospital, specializes in research on fatigue and
sleep disorders in MS. Dr. Trojan’s recent research found that
obstructive sleep apnea-hypopnea (OSAH), the intermittent closing
off of the upper airway during sleep, is the most common sleep
abnormality in people with MS. Her research team also found a
strong relationship between OSAH and higher fatigue scores in
individuals with MS. Preliminary results show that treatment of the
sleep disorders themselves, primarily OSAH, can markedly improve
fatigue and other symptoms in some people with MS.
For more information on managing MS-related fatigue,
mssociety.ca/fatigue ■
Donating to research helps Marie-Claude feel like she is part of
a team working towards finding a cure for MS. “Researchers have
come up with new therapies that can help you cope better and live
well with the disease – things that weren’t available
years ago when I was diagnosed,” she says. “Research has come a
long way.”
Marie-Claude admits that she was scared when she was diagnosed
with relapsing-remitting MS 16 years ago. “I didn’t know what to
expect,” she says. For her, research is a key factor in helping to
improve her quality of life and that of others living with MS.
Since her diagnosis, Marie-Claude, her husband Jason and their
family have donated funds for research that will benefit people
with MS. “We give what we can; no amount is too big or too small,”
she says.
To find out how you can donate to MS research, visit
mssociety.ca/donate ■
Managing fatigue and sleep disorders in MS
Working towards a cure: Donating to research
Marie-Claude and her husband Jason contribute
to innovative research, bringing us closer to a cure for MS
Dan manages his fatigue through planning
http://mssociety.ca/en/information/symptoms_mng_fatigue.htmhttp://mssociety.ca/en/give/default.htm
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occupational therapy
Contents
SPECIAL fEAturE
What is occupational therapy?
According to the Canadian Association of Occupational
Therapists, occupational therapy is the art and science of enabling
people to engage with everyday living. While much of occupational
therapy focuses on the physical engagement required for day-to-day
activities, the practice works to assess and improve all that is
needed to live a balanced life – socially, mentally, professionally
and physically.
How can occupational therapy help with multiple sclerosis?
The symptoms of MS are vast and can vary radically from person
to person. One person’s occupational therapy needs may differ
significantly from someone else’s. Here are some examples of how
occupational therapy can help manage symptoms and overcome barriers
in daily life:
• Physical: Adapted utensils, clothing and other household items
for better accessibility in the home
• Cognitive: Use of virtual reality to walk people through
day-to-day tasks
• Social: Speech assistance technology for improved
communication
• Professional: Ergonomic assessments in the workplace followed
by adaptive furniture and technology
An occupational therapist’s first task is to listen to his or
her clients to discover their personal goals for living well. This
special feature will uncover the ways occupational therapists work
with the goals of their clients to maximize function and wellness
in all areas of life.
My life as an occupational therapist: Pearl Gryfe
Developing best practices in occupational therapy
Technology and occupational therapy
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My life as an occupational therapist: Pearl Gryfe
Pearl Gryfe, M.Sc., B.Sc.OT Reg. (Ont.) is the
founder of the Assistive Technology Clinic based at
Sunnybrook Health Sciences Centre and the Baycrest
Brain Health Centre in Toronto. She is also the clinical
director of the Elkie Adler MS Clinic and the Jeff and
Diane Ross Movement Disorders Clinic. She has been
practicing occupational therapy for over 30 years.
Occupational therapy is the holistic practice of
improving function in all day-to-day environments. People assume
many roles in life – they are mothers, fathers, spouses, coworkers
and friends. Occupational therapy works to remove barriers so that
people can assume their roles fully rather than being defined by
their disability.
The first thing I do as an occupational therapist
is listen. Multiple sclerosis can be degenerative and fluctuating, and it is a challenge to intervene at
the right time throughout the continuum of MS care. My teammates
and I work with people to
determine their goals and what living well may mean to them,
whether that is remaining in their
job or wanting to be more physically active. As people are given more independence, they gain more
confidence and are able to see that MS is
something they can live with.
If a person has trouble walking, we will give them a means to
mobilize using walkers, wheelchairs
and power devices. If they have trouble speaking, our team will give them a means to communicate. For example, MyVoice or TalkRocket Go (an application
for the iPad) works with GPS and cloud computing to speak phrases
associated with a person’s location. Tools like these allow us to
“match the technology with the pathology” – that is, we are able to
use the many tools
available to boost a person’s interaction with his or her
world.
People with MS are often able to continue working by adapting
their work station and using
alternative access methods. While technology can assist with using
a computer, we are also
able to improve someone’s work day by offering tips on how to
combat MS-related fatigue. Once the fatigue is physically
manageable, strategies can be implemented to modify the work
day.
Occupational therapy offers a means of accepting MS without
letting it define you.
To read more about technology and occupational therapy, turn to
page 8.
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Developing best practices in occupational therapyWhile new
technology offers occupational therapists more tools to help people
with
MS than ever before, occupational therapists are also working hard to develop best practices to assess individual needs. The
following section highlights research that enables the
customization of occupational therapy programs.
PRO assessment: A new measure“Methods and measures: what’s new
for MS?” by Nancy E. Mayo, Stanley Hum and Ayse Kuspinar was
published in the Multiple Sclerosis Journal in November 2012.
As the impact of multiple sclerosis varies with each person,
it’s important that symptom
management outcomes are expressed in a person’s own voice. This study recognizes that the
results of symptom management therapies cannot only be measured by
collecting biological data. By using what’s called
“patient-reported outcomes” (PROs), occupational therapists can ask
specific questions to
receive an accurate long-term view of how therapies are working for
the person with MS. For example, with regards to fatigue, the
study states,
… impact is the most problematic to
measure because over time, people with a
high degree of fatigue are likely to limit
their activities so fatigue no longer interferes
with certain activities because they have been
dropped. So, without a positive improvement
in fatigue intensity, frequency, duration or
time, the person paradoxically may report a
lower degree of fatigue impact. “How much
or how often has fatigue interfered with social
activities?” may change over time if the person
has reconceptualized “social activities” over
time. Thus, impact needs to be assessed with
respect to standard activities “going out to a
restaurant for dinner with friends,” not against
what the person now does.
From this premise, the research team recommends that people with
MS assign numerical values to areas of function (e.g. fatigue)
impacted by MS in their
lives, so that occupational therapists can measure the effectiveness of symptom management
techniques.
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Nintendo Wii and balanceThe Nintendo Wii is an interactive
gaming console that uses sensor devices to mimic physical movement
on screen. The system is frequently used for physical
rehabilitation; the term “Wiihab” has recently been coined to
describe this therapeutic method.
“Effects of Wii exercises on balance in people with multiple
sclerosis” by Irene Guidi, Tiziano Giovannelli and Matteo Paci was
published in the Multiple Sclerosis Journal in October 2012.
Researchers assigned a small sample of people living with MS with
balance impairment to either the Wii exercise group or the non-Wii
group. They found that those who used the Wii as physical therapy
experienced improved balance versus those who did not use the Wii.
This small study shows that more research is warranted for use of
the Wii in physical or occupational therapy.
Speech recognition softwarePeople living with MS often find it
difficult to type due to loss of function in their hands. Speech
recognition software allows people to use computers by speaking
instead of typing. Recently, software manufacturers are focusing on
what’s called “continuous speech products”, which allow for a more
natural way of speaking as opposed to slower software that requires
a pause between words. While the software sometimes makes mistakes
in recognition, occupational therapists can provide training so
that a person can become familiar with ways to correct errors.
“I’ve used speech recognition software as a way to allow people
to remain in their jobs,” says Pearl Gryfe, occupational therapist.
“I remember working with a computer programmer with MS who could
not use his hands to type. Speech recognition allowed him to keep
working by voicing his commands instead of typing them.”
Visit caot.ca for more information on technology and living
well. ■
technology and occupational
therapyAdvancements in technology have enabled occupational
therapists to offer more options than
ever to people living with disability. According to the Canadian
Association of Occupational Therapists,
“assistive technology [is] any device or product, either custom made or commercially available, which
augments people’s function or reduces an
environmental barrier.” Assistive technology may include software,
such as speech recognition and
MyVoice with GPS, or hardware, such as electric beds and phones for
people with disabilities.
http://www.caot.ca/
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Self-help groups: understanding MS with others
W hen Debbie was diagnosed with relapsing-remitting MS in 1991,
she felt alone and depressed. “I felt like I was by myself,” she
says. “I didn’t know anyone else who had MS.” Soon after her
diagnosis, she joined an MS self-help
group, where she was able to talk to others who were newly
diagnosed with MS. The group provided a safe place to discuss her
MS and helped her to better cope with the disease.
Today, Debbie volunteers as a facilitator with the Kildonan MS
self-help group in Winnipeg, Manitoba, where she provides emotional
support to 15 people with MS. “We open our group to everyone,”
Debbie says. The group,
which meets once a month, consists of people with MS who are
newly diagnosed and live with progressive and relapsing-remitting
forms of the disease. “We talk about all aspects of MS symptoms,
medication and how it’s affecting our family life. We laugh, cry
and share our fears.”
MS self-help groups are created to provide support,
encouragement and hope to people affected by MS. Groups are led by
facilitators who share the same experiences as group members. “It’s
wonderful to have a safe place where you can connect with people
who know what you’re going through,” Debbie says. “It’s sometimes
difficult to talk to someone about MS who doesn’t know what it’s
about. With the self-help group, you don’t have to worry about
that. We listen and we understand.”
For more information on self-help groups in your area, visit
mssociety.ca/selfhelp ■
Debbie, self-help group facilitator
Q: Is fatigue only present during MS exacerbations, or can it be
continuous? I am experiencing fatigue and want to know if it will
stop when my attack is over.
A: Fatigue is sometimes only present during a relapse, but it is
also often seen during remissions as an ongoing symptom. Fatigue
should be addressed and managed as a specific symptom. MS fatigue
is best managed through a multi-disciplinary approach, which may
include physiotherapy in addition to occupational therapy for
energy conservation and workplace or home modifications.
Medications that address MS fatigue are available and most
effective when used in combination with other lifestyle
adjustments. ■
Ms Answers is now mobile
MS Answers is a website that allows people affected by MS to
submit questions and obtain accurate answers to MS-related
questions. The website posts new questions and answers every
week.
We are pleased to announce that MS Answers is now mobile
enabled. To experience the website on your smartphone, visit
msanswers.ca
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http://mssociety.ca/selfhelp/http://www.msanswers.ca
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MS Society bylaws up for revision at 2013 aGMBy law, the MS
Society of Canada must transition its incorporation from the Canada
Corporations Act to the Canada Not-for-profit Corporations Act
(CNCA). Industry Canada has mandated that this transition take
place before October 2014.
For the MS Society, this means going through a series of steps
to ensure it remains legally incorporated. These steps include
submitting to Industry Canada Articles of Continuance and updated
bylaws that conform to the legislation. It is also an opportunity
for us to make other adjustments to our bylaws, including those
that resulted from the MS
Society’s Renewal Initiative (mssociety.ca/renewal) process.
Both the Articles of Continuance and the bylaws require approval
of the MS Society’s membership before submission to Industry Canada
and will therefore be on the agenda at the MS Society’s annual
general meeting taking place on June 15, 2013 in Toronto.
Beginning May 30, you can visit mssociety.ca/AGM2013 to see
copies of the relevant documents. You can also call 1-866-922-6065
x3151 to have a copy mailed to you. ■
MulTiPle ScleROSiS SOcieTy Of cANAdA NOTice Of AN ANNuAl ANd
SPeciAl MeeTiNG Of MeMbeRS
NOTICE IS HEREBY GIVEN that an Annual and Special Meeting of the
members of Multiple Sclerosis Society of Canada will be held at the
Marriott Bloor Yorkville, 90 Bloor Street East, Toronto, ON M4W
1A7, on Saturday, June 15, 2013 at 1:00 p.m. (Eastern Standard
Time) for the following purposes:i) Receiving the report of the
members of the National Board of Directors and the audited
financial statements for the year January 1, 2012 to December 31,
2012; together with the report of the auditors thereon;ii) Electing
members of the National Board of Directors;iii) Appointing
auditors;iv) Authorizing the continuance of the MS Society of
Canada under the Canada Not-for-Profit Corporation Act and in
particular, approving the Articles of Continuance of the MS Society
of Canada;v) Approving a new general operating by-law under the
Canada Not-for-Profit Corporations Act; andv) Such further and
other business as may properly be brought before the meeting.
We have surpassed our $60 million
goalThanks to the support of our donors and volunteers, we have raised over $60 million for the endMS campaign. Funds from the campaign have supported MS research and the endMS Research
and Training Network.
Visit endms.ca to view the endMS Impacts video, and find out
how the endMS campaign has supported the MS research community.
http://endms.ca/endms_stopsp/default_20130306.htmhttp://mssociety.ca/AGM2013
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1At the Annual and Special Meeting, members will be asked to
pass the following special resolutions:
1. “The Directors of the Corporation are hereby authorized and
directed to make an application under section 297 of the Canada
Not-For-Profit Corporations Act to the Director for a Certificate
of Continuance of the Corporation;
2. The Articles of Continuance (transition) of the Corporation,
in the form in which they have been submitted to this meeting are
hereby approved;
3. The General Operating By-law No. 1 of the Corporation (as
amended) is repealed and replaced by a new General Operating By-law
No. 1 under the Canada Not-For-Profit Corporations Act in the form
in which it has been submitted to this meeting; and
4. Any one of the Officers and Directors of the Corporation is
authorized to take all such actions and execute and deliver all
such documentation, including the annexed Articles of Continuance
(transition), the notice of registered office and of directors in
the forms fixed by the Director, which are necessary or desirable
for the implementation of this resolution.”
On May 30, 2013, the audited financial statements, details of
changes to the bylaws of the Corporation and the Articles of
continuance will be made available on our website
www.mssociety.ca/AGM2013 or by calling 1-866-922-6065 x3151 to
request a copy be mailed to you.
Three or four positions for director-at-large will stand for
election at the AGM. Any member wishing to nominate a candidate as
a director-at-large must do so on or before Friday, June 07, 2013,
in accordance with the bylaws of the MS Society of Canada.
Biographies of candidates standing for election will be made
available on www.mssociety.ca/AGM2013 on June 12, 2013 or
earlier.
Membership in the MS Society of Canada is held through
individual chapters or divisions of the MS Society. Each chapter or
division has the authority to make and amend membership rules and
regulations including stipulating a waiting period for new members
to be eligible to vote at members’ meetings. In light of this,
members attending the AGM will be confirmed in good standing and
provided with voting cards as appropriate in keeping with the
governing rules and regulations of the chapter or division of which
they hold membership. Members in attendance at the AGM will be
required to provide valid photo identification.
Members who are unable to attend the meeting in person are
requested to date and sign the form of proxy below, detach and
return it to the head office of the MS Society, 175 Bloor Street
East, Suite 700, North Tower, Toronto, ON M4W 3R8 by Monday, June
10, 2013. Attention: Rosanne Portelance.
YOU HAVE THE RIGHT TO VOTE BY PROXY. A COPY OF THE FORM OF PROXY
IS SET FORTH BELOW.
DATED at Toronto, Ontario this 11 day of April 2013, David A
Garton,
Secretary--------------------------------------------------------------------------------------------------------------Multiple
Sclerosis Society of Canada Proxy for Annual Meeting of Members,
June 15, 2013
The undersigned hereby appoints Jim Casey, or failing Charles
Ford, François Coupal or David A. Garton or
_________________________ as proxy with power of substitution, to
attend and vote for the undersigned at the Annual Meeting of
members to be held Saturday, June 15, 2013 and at any adjournment
or adjournments thereof and to vote and otherwise act thereat for
and on behalf and in the name of the undersigned in respect of all
matters which may come before the meeting in the same manner the
undersigned would do if personally present thereat.
DATED this _____ day of ________________, 2013 SIGNATURE:
_________________________
Please print clearly your name, address and phone number
Surname: _____________________ Middle Initial: ____ Given name:
_____________________
Street Address: ___________________ City/Town: _________________
Province/Territory: ____
Postal Code: _______________ Chapter/Unit: ______________
Telephone No: ______________
Please date, sign and return this proxy to the Secretary,
Multiple Sclerosis Society of Canada, National Office, 175 Bloor
Street East, Suite 700, North Tower, Toronto, ON M4W 3R8 by Monday,
June 10, 2013. Attention: Rosanne Portelance.
http://mssociety.ca/AGM2013http://mssociety.ca/AGM2013
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Fall 2007
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To view this publication
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