Beat the Heat How to stay cool and

www.mssociety.org.au
The Official Magazine of MS Australia – ACT/NSW/VIC
Summer 2009
ISSN 1833-8941
Print Post Approved: PP 255003/08108
New-look
Magazine!
Beat
the
Heat
How to stay cool and
safe this summer
Gong Ride raises $3m for MS
Spotlight on: Physiotherapy
Welcome to our newest
MS Ambassadors
Oral medications in the pipeline
2009 Go for Gold
Scholarships
Smoking Linked with
Multiple Sclerosis
Winners announced
The facts revealed
Great
Prizes up
for Grabs
Editor: Rebecca Kenyon
Publisher: Multiple Sclerosis Limited
ABN: 66 004 942 287
Website: www.mssociety.org.au
Frequency: Published quarterly in March,
June, September, December
Advertising enquiries: Rebecca Kenyon,
Tel: (02) 9646 0725, Fax: (02) 9643 1486,
Email: [email protected]
Design: Byssus, (02) 9482 5116,
www.byssus.com.au
Photographs: The stock images appearing in
Intouch are sourced from iStockphoto
Printing: Webstar Print
MS Australia – ACT/NSW/VIC
ACT
Gloria McKerrow House
117 Denison Street
Deakin ACT 2600
Tel: (02) 6234 7000
Fax: (02) 6234 7099
NSW
Studdy MS Centre
Joseph Street
Lidcombe NSW 2141
Tel: (02) 9646 0600
Fax: (02) 9642 1486
12
10
VIC
The Nerve Centre
54 Railway Road
Blackburn VIC 3130
Tel: (03) 9845 2700
Fax: (03) 9845 2777
MS ConnectTM (Information and Services):
1800 042 138 (freecall)
Regional offices: Visit the ‘Contact Us’ page
at our website, www.mssociety.org.au
Privacy Policy: Visit www.mssociety.org.au for
our full policy document
ISSN: 1833-8941
Disclaimer: Information and articles
contained in Intouch are intended to provide
useful and accurate information of a general
nature for the reader but are not intended
to be a substitute for legal or medical
advice. Multiple Sclerosis Limited is not
recommending medical or legal advice and
readers must seek their own medical or legal
advice as may be appropriate.
24
06
11
Advertising disclaimer: Advertisements are
provided to assist consumers to locate and
purchase suitable products and services.
Multiple Sclerosis Limited does not endorse
any one product or service over another, nor
do we receive any commission on sale of
items. Consumers are encouraged to discuss
the options for exchange or return at time of
purchase with a particular supplier as Multiple
Sclerosis Limited is not liable in the event the
product is not satisfactory.
MS Australia – ACT/NSW/VIC is a not-forprofit organisation that has been supporting
and helping people with multiple sclerosis
(MS) since 1956. Through an extensive
network of centres, branches, support groups
and health services, the organisation provides
specialist programs to people with MS,
their families, carers, friends and healthcare
professionals.
© Multiple Sclerosis Limited 2009.
www.mssociety.org.au
36
summer 2009
Contents
CEO’s Message
FEATURES
Welcome to the Summer edition
of Intouch. As the temperature
increases I’m sure you will all find
the articles on managing heat
useful over the next few months.
In our efforts to assist you
keep your home cool in summer,
the MS Australia Advocacy team
has done an outstanding job
in negotiating with the NSW
Government to provide an
electricity rebate to those on low
incomes with a medical need.
This builds on the Victorian Government’s Medical Cooling
Concession which is already in place. Read more about the
recently launched NSW rebate in our News section.
Last issue we featured an article explaining how a recent
genetic discovery has moved global research a step closer
to unravelling the cause of MS. The discovery highlighted the
importance of Vitamin D in building and controlling the immune
system but we did not mention the impact that cigarette smoking
may have on the ability to gain any benefit from Vitamin D
supplementation. In fact, research has shown that smoking
may cancel any benefit, so it is timely that this edition of the
magazine reveals the impact smoking has, especially on people
with MS, while providing strategies and support options to assist
in kicking the habit.
I would like to congratulate the 51 people with MS who were
awarded Go for Gold Scholarships this year. Wholly sponsored by
the fundraising efforts of the 24-Hour Mega Swim, the scholarships
are awarded to those who display a great need and potential in
various aspects of life. This was the first year the ACT was involved
in the program. I am sure you will enjoy reading about this year’s
scholarships and may even be inspired to enter next year.
I am also pleased to report that the 2009 Sydney to Gong MS
Bike Ride was an outstanding success. Held on 1 November,
10,000 riders participated and raised close to an amazing
$3 million. This makes the ‘Gong’ ride the highest fundraising
bike ride in Australia and the best run event of its type. I had
the pleasure of riding the 90 kilometres to the Gong in perfect
weather and our small team raised more than $14,000.
Finally, the Annual General Meeting of Multiple Sclerosis
Limited (representing the MS Societies of the ACT, NSW and VIC)
was held at the Studdy MS Centre, Lidcombe on 29 October.
While we welcomed two new Board Directors, Carolyn White and
Garry Whatley, we also said farewell to two longstanding Board
members, Lynn Wood and Graham Tribe. Ms Wood served on
the MS Society of NSW Board and subsequently the MSL Board
for 12 years, and Mr Tribe was a member of the same Boards
for 36 years. On behalf of the Board of Directors and the entire
organisation I would like to thank Ms Wood and Mr Tribe for their
outstanding contribution to the MS community.
I hope you enjoy reading the Summer edition of Intouch and
that you find the information useful and relevant.
11 My Story: A New Beginning
On the eve of her 50th
birthday, Sally Townrow shares
her MS journey saying, ‘it’s
never too late to take a new
lease on life’.
12 Cover Story: Beat the Heat
Follow these practical tips to
help you keep cool, and stay
safe and active this summer.
16 Smoking & MS: The Facts
We reveal the latest evidence
on the dangers of cigarette
smoking for people with MS,
and provide practical solutions
to help quit the habit.
MS COMMUNITY
23 A Generous Bunch:
Community fundraising
highlights
24 Intimacy: A carer’s perspective
26 Destined to Achieve: Stories
from Peer Support Volunteers
27 Support Group Profile: Active
Inner West, Sydney
28 Volunteers in Action: Helping
to make a difference
29 Welcome to our new MS
Ambassadors
HEALTH & WELLNESS
30 A ‘Cool’ Diet: Keep cool from
the inside–out this summer
31 Be Informed: Resources
to accurately assess health
information
32 What’s New in Health
Promotion
34 Spotlight On: Physiotherapy
LIFESTYLE
36 Celebrating the 2009
Go for Gold Scholarships
38 Tap in to Your Creativity:
Calling all photographers
and writers...
REGULARS
5 Your Say
6 News
9 News: Advocacy
10 Q&A
18 Events
39 New Resources
summer 2009
Bill Younger
CEO, MS Australia – ACT/NSW/VIC
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www.mssociety.org.au
Editor’s Note
I love the long days, twilight barbeques, beach cricket, and festive
cheer that an Australian summer brings, but the heat can get overwhelming.
This is something that I am sure, many of you can relate to. Because of this,
the aim of this issue is to help you enjoy all the good things an Aussie summer
has to offer by providing you with practical solutions to help you keep cool, as
well as stay safe and active. Some helpful readers have also offered their own
pearls of wisdom, so I’d like to thank all of you who wrote in offering your own
tips to ‘beat the heat’.
Our Q&A this issue is also an insightful read. MS Connect has had many
enquiries regarding oral medications for treating MS, of which there are
currently none available in Australia. However, great progress is being made in
this area, giving us hope that oral medications will become a viable option for
people with MS in the near future.
Given the amount of information out there – some of which makes claims
about unsubstantiated miracle cures and treatments in MS – we’ve provided
some great resources on page 31 that will help you to more accurately assess
the health information you are reading and hearing about in the media.
You will again see that Intouch is evolving, especially in its design. The main
aim of this process is to provide you with a more reader-friendly, contemporary
and vibrant publication. We’d love to hear what you think!
The theme of the Autumn 2010 edition will be ‘Parenting and MS’. Why
not write in and share your stories about living with a parent with MS, being a
parent with MS, or parenting a child with MS.
Also, don’t forget that a text-only version of the magazine is available for
those who have difficulty reading the magazine in its current format. Send an
email to [email protected] or call me on (02) 9646 0725 to request
this version of the magazine.
Finally, I wish you all a safe, happy and ‘cool’ festive season!
Rebecca Kenyon
Editor
www.mssociety.org.au
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summer 2009
Your Say
Thank you for sharing your hints, tips and feedback.
We’d love to hear more!
Write to us at [email protected] or post your letter to ‘Intouch’ PO Box 210, Lidcombe NSW 1825
Handy Summer Hints
The heat of last summer here in Victoria was dreadful
and given we were warned that the next summer would
be worse, on went the thinking cap. This has resulted in
whirligigs replacing some tiles at either end of our roof
to take out the hot air between it and the insulation.
I have also had some white blinds put in to cover the
glass on the inside of westerly-facing windows. These
blinds reflect the heat back outside and are very easy to
operate. An added advantage in the cold weather is that
the blinds bounce the heat back into the lounge room,
and the gas space heater can be run at a lower setting.
This next summer will be the test for these latest ideas.
D. Young, Vic
More reader suggestions on how to beat the heat can be
found in our cover story on page 12.
Keeping us Informed
As I was reading the Spring edition of Intouch, I was over
the moon to read the Q&A about the current clinical trials
being undertaken for progressive MS. With [some of
these] being such ‘controversial’ treatments for MS, I am
so happy that they are now out in the MS public forum
for others to investigate and make choices about their
treatment. Well done Intouch for reporting on this.
K. Balloch
Read more about the progress and development of
oral medications in treating MS in our Q&A on
page 10.
A Special Thank You
As a husband of someone who has MS and who is
confined to a wheelchair, I would like to thank MS
Australia – ACT/NSW/VIC, and especially our Community
Support Worker Coral Price, for helping us to get some
carers in to help my wife. It is hard for me to juggle work
and looking after my wife, so when Coral rings up to see
how we are, it makes me feel that there are people out
there willing to help. I wish I could give something back
for all the help you have given us. Thank you.
G. Robinson
More Low-Care Hostels Needed
I am now 64 years old and I feel that I can make a
comment on young people in aged-care.
I have been in aged-care facilities since the 1990s and
I am treated as an aged-care resident, not as someone
with MS. Despite only needing low care, I am placed
with people who have dementia, which often makes me
depressed.
I am able to stay at the residential unit at the Studdy
MS Centre in Lidcombe two or three times a year but we
really do need more low-care hostels for young people
with conditions such as MS.
M. Connors, NSW
The issue of young people with MS in nursing homes
is a key policy issue being tackled by the MS Australia
Advocacy Team. We will keep you informed as more
progress is made on this key policy issue.
Write in to WIN!
Keep your feedback and stories
coming in. Next issue’s theme is
‘Parenting & MS’.
Each reader to have their letter published has won a Super Shady
Cooler Hat and a Neck Tie Cooler, worth a total of $41 per prize pack.
Cool Hats and Neck Tie Coolers provide a safe, economical way to
beat the heat. The Super Shady Hat has a variegated brim, which is
wider at the front than the back, is suitable for men and women of all
ages, is SPF 50+ and comes with a Cool Pad inside the double crown.
Contained within the Neck Tie Coolers are super absorbent food
grade polymer crystals that retain water when soaked and form a
cooling gel that assists the body’s natural cooling system.
Win yours to stay cool this summer or visit www.necktiecooler.com
summer 2009
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www.mssociety.org.au
NEWS
Office Closures
over Christmas
The MS Australia – ACT/NSW/
VIC offices will be closed from
1pm, Thursday 24 December
through to 9am Monday 4
January. However, the MS
Connect information line will
still be open, except on public
holidays, and our residential
units will operate as normal.
Team Macdog get into the fun team spirit of the
Gong Ride by all dressing up as Smurfs.
Governor-General
Becomes Patron
of MS Australia
Her Excellency Ms Quentin
Bryce AC, Governor-General
of the Commonwealth of
Australia, has accepted an
invitation to become a Patron
of MS Australia.
Following her support for
people with MS during World
MS Day on 27 May, Ms Bryce
says, “I am keen to do all I
can to be involved so that
I can make a constructive
contribution”.
We are delighted to now
have Ms Bryce fully involved
as an official Patron of MS
Australia, and look forward to a
rewarding relationship.
Her Excellency Ms Quentin Bryce with His
Excellency Mr Michael Bryce AM AE.
www.mssociety.org.au
A Top Gong
A God-sent tail wind and a bright
sunny Sunday complemented the
28th MS Sydney to the Gong Bike
Ride on 1 November.
With an ambitious fundraising
goal of $2.5 million in their sights,
10,000 cyclists gave their all to
pedal the 90km. Despite the number
of riders being restricted due to a
cap on entries, this group of cycling
enthusiasts managed to smash
the goal out of the water before the
event even started. Fundraising is
currently sitting at $2,778,527 and
the money is still rolling in thick and
fast. This is a record-breaking result
towards raising much-needed funds
for people with MS.
Thanks for making this year’s
Gong ride the most successful
fundraising event ever!
Cyclists began departing from
Sydney Park, St Peters at 6am with
the fast and furious rolling into
Stuart Park, Wollongong two hours
later. A steady stream of relieved and
victorious riders followed throughout
the day.
A special mention must go to the
Downer EDI Soft Cogs who have
raised a staggering $142,000 to
date. The Westpac Group was not far
behind raising more than $100,000.
Geoffrey Hilton was our top individual
fundraiser, raising an astonishing
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$42,000 to date. Congratulations to
each and every rider and thanks for
making this year’s Gong Ride the most
successful fundraising event ever!
The MS Australia – ACT/NSW/
VIC Events team would like to thank
our wonderful 500 volunteers, our
major sponsors, Subaru, the Sydney
Morning Herald and the RTA, as
well as the NSW Police, St John
Ambulance Australia and the NSW
Volunteers Rescue Association for
ensuring the ride ran smoothly and
safely. n
summer 2009
NEWS
Did you know?
Radio Documentary Tackles the ‘Taboo’
A radio documentary on disability and sexuality will air on 360 ABC Radio
National at 2pm on 12 December.
Produced by John Blades, who is disabled and has lived with MS for nearly
28 years, the program talks about his journey and broaches a topic that is so
often taboo.
As well as John’s story there are extensive interviews with the likes of Dr
Gary Fulcher, Senior Clinical Psychologist with MS Australia – ACT/NSW/VIC,
who gives a unique insight into the great importance of sexual expression for
those with disabilities.
Along with the radio documentary there will be extended interviews, lists
of music used in the program, and links to information about disability and
sexuality on the 360 website (www.abc.net.au/rn/360).
MS Australia – ACT/NSW/VIC health professionals are also able to assist
with any concerns you may have around intimacy and living with MS. Call MS
Connect on 1800 042 138 for more information on our services. n
Public Lecture Reveals
the Latest in MS Research
MS Research Australia (MSRA) hosted its first public lecture series for people
with MS, carers and supporters on 17 October at Royal Prince Alfred Hospital
in Sydney, and by video conference to a Melbourne audience.
The two-hour lecture gave the 160 delegates great insight into the latest
advances in MS research, and current challenges towards prevention, better
treatments and a cure for MS.
Professor Graeme Stewart from the Westmead Millenium Institute opened
the lecture with a description of the current thinking on the causes of MS,
which was followed by a discussion on MS susceptibility and vitamin D by Dr
Sreeram Ramagopalan from the University of Oxford, UK.
Participants were enlightened on upcoming treatments by Dr Suzanne
Hodgkinson from Liverpool Hospital, and Associate Professor Richard Burt
from Northwestern University in the US provided an update on stem cell
treatments in MS.
MSRA and delegates were very fortunate to hear from these excellent
speakers, with the lecture series corresponding with MSRA’s 2009 Scientific
Conference ‘Progress in MS Research’.
“The feedback from the day has been excellent and encouraging enough
to consider more regular public lectures on research such as this one around
Australia,” reported Jeremy Wright, Executive Director of MSRA.
Read more about the scientific conference in MSRA’s Next newsletter,
delivered with this magazine. The public lecture will be available for download
from the MSRA website (www.msra.org.au) from December 2009. n
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MS Australia – ACT/NSW/VIC
provides an ‘Ask the Doctor’
email service for people
with MS, their family, carers,
and health professionals.
Through this service, our
Medical Directors, Dr Elizabeth
McDonald and Dr Garry
Pearce, will attempt to answer
your questions relating to MS.
This service does not take
the place of your family doctor
or your neurologist. It is an
information service to help
complement the treatment and
management of MS by general
practitioners and neurologists
and to help people with MS
better access the various
services of MS Australia –
ACT/NSW/VIC.
MS Australia – ACT/NSW/
VIC has strict protocols and
policies in place which will
ensure the confidentiality of
information. To contact our
Medical Directors, click on the
‘Medical Services’ tab at the
following page on our website:
www.mssociety.org.au/live/
living-with-ms.asp
2009 MS Art
Exhibition on Now!
The 2009 MS Art Exhibition is
on again this year, showcasing
the artistic talent of people
living with MS and other
neurological disorders.
Running from 28 November
to 12 December (11am to 4pm
daily), the Exhibition is being
held at Northcote Town Hall
in Melbourne. The Exhibition
will also be open during the
Town Hall Twilight Market on
Thursday 10 December from
6 – 10pm.
For any enquiries, please
contact the event coordinators
at the Confident Living Program
on (03) 9845 2700.
www.mssociety.org.au
NEWS
New PNI Resource
MS Australia – ACT/NSW/VIC
recently launched the PNIMS
e-Bulletin, which provides upto-date information relating to
psychoneuroimmunology (PNI)
in MS.
PNI in MS is a relatively
new field that considers
the interaction between
psychology, neurology, the
immune system and hormones
in the development and
progression of MS. Further
study in this area may
offer advancements in risk
minimisation and treatment
options for people with, or at
risk of developing, MS.
The PNIMS e-Bulletin is
an extension of the PNIMS
website (www.pnims.org), set
up by MS Australia – ACT/
NSW/VIC to provide PNI-related
information and updates to
people with MS, clinicians,
researchers and the general
public.
Published four times a year,
the e-Bulletin will highlight
current PNIMS issues and
related news and events, along
with articles of interest on the
topic of PNI and MS.
Distributed via email, visit
the www.pnims.org to sign up
for this new free resource.
MS Christmas Cards:
Don’t Miss Out!
Don’t miss out on ordering your
2009 MS Australia Christmas
cards to help support people
with MS, their families and
carers and to help fund
research. Our cards are priced
from just $9.95 per pack of 10
and you have until 17 December
to place your order. To view our
range visit www.mssociety.org.au
or call 1800 287 367 to place
an order.
www.mssociety.org.au
At the launch: (front) Jill Hodder, person with MS; and (back, L to R) Angela D’Amore MP,
Member for Drummoyne; the Hon. John Robertson MLC, NSW Minister for Energy; and Kate Young,
State Manager Services (NSW/ACT), MS Australia – ACT/NSW/VIC.
NSW Medical Cooling
Rebate Launched
In a win to keep cool this summer, people with MS in NSW who are heat
intolerant may now be eligible for a rebate on their electricity costs.
The NSW Government launched the annual $130 Medical Energy Rebate in
October to assist those on low incomes who experience problems as a result of
medical conditions, such as MS, when they get too hot or too cold.
This is the culmination of an 18-month campaign led by Dr Michael
Summers, Senior Policy Advisor at MS Australia, that involved many people
with MS as well as other organisations, such as Parkinson’s NSW.
“The NSW government’s new rebate will provide much-needed assistance
for people living with MS on low incomes who have to run their air conditioners
approximately 15 times more than average households,” says Dr Summers,
who also co-authored MS Australia’s Keeping Cool Survey.
“We know that 90 percent of people living with MS find their symptoms
increase dramatically when they get too hot,” he adds. “With rapidly rising
electricity prices, the cost of keeping cool at home has become a real problem
for those on low incomes. The new rebate will make a real difference in the
lives of many people living with MS in NSW.”
In addition, because the new rebate is for both cooling and heating, it will
also help those who have problems with the cold.
The rebate goes into effect on 1 January 2010, with electricity retailers
accepting applications in December 2009. The rebate is then paid quarterly
as part of your electricity bill.
Eligibility for the Rebate is based on:
l proof of heat (or cold) intolerance, signed off by a doctor; and
l the account holder must have one of the following concession cards:
– Pensioner Concession Card;
– Department of Veterans Affairs Gold Card; or
– Health Care Card.
The Medical Energy Rebate can be received in addition to other assistance
such as the Energy Rebate, the Life Support Rebate and the Energy Accounts
Payment Assistance (EAPA) scheme. Further information can be obtained from
the Department of Industry and Investment website (www.industry.nsw.gov.au/
energy/customers/rebates) or call MS Connect on 1800 042 138. n
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NEWS: ADVOCACY
Influencing Change
An update on how the advocacy team at
MS Australia is creating a better future for
people living with MS.
Disability Needs Documented
The Shut Out Report has been released and is an
important step in the development of the National
Disability Strategy being developed by the National People
with Disabilities and Carers Council (NPWDCC), along with
the Australian Government.
The Shut Out Report outlines the consultations for
the National Disability Strategy and documents the need
for substantial reform across the board for people with
disabilities. From employment to access to education,
Shut Out reveals that discrimination is still rife and people
with disabilities are still finding they are excluded from
many areas of community life.
The report also highlights the frustration people
experience with the disability services system due to its
fragmentation and underfunding.
Chair of the NPWDCC Rhonda Galbally addressed the
National Press Club in October 2009 with an impassioned
speech about the need for reform that was very well
received. She detailed the case for an entitlement
approach to the funding of services that would change
the way services are funded and delivered, and would put
an end to the rationing system – the National Disability
Accessible Housing Update
The case for improving housing access has been a
long-standing priority and was a strong point made in
the Shut Out Report, mentioned above.
MS Australia – ACT/NSW/VIC is a key player in the
Victorian Universal Housing Alliance (VUHA) which
involves more than 80 community agencies and local
governments. While regulation has improved access
in public buildings, there is nothing governing private
dwellings. The Alliance’s platform is to make at least 25
percent of Victoria’s housing stock ‘accessible’ by 2031.
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Policy Issues Statement Released
The MS Australia Policy Team has published its
Federal Policy Issues Statement for 2010/11, which
has been included as an insert with this magazine,
and is available for download from the MS Australia
website (www.msaustralia.org.au).
This edition of the Statement is especially
important because of the looming federal election
and, although it is ‘federal’, these issues also
play out at a state/territory level, giving them
considerable relevance for the Policy Team’s work
in ACT, NSW and Victoria. If you would like to get
involved and raise any of these issues with your
state or federal MP, contact Alan Blackwood,
Manager Policy and Community Partnerships,
on 0407 542 605 or via email at
[email protected]
Insurance Scheme concept. Copies
of the Shut Out Report and Rhonda
Galbally’s Press Club speech can be
downloaded from the Department of
Families, Housing, Community Services
and Indigenous Affairs website
(www.fahcsia.gov.au/sa/disability) or
by calling 1300 653 227.
The National Disability Strategy is
due for release in 2010. We will keep
you informed as more information
comes to light. n
The Alliance is working on changes to Victorian building
regulations that will hopefully see some universal design
features (e.g., level entry, wider doors, increased toilet
space and step-free showers) be mandated for all new
dwellings and major renovations. The central themes of this
campaign are:
l Making homes more accessible is an important
housing priority given our ageing population.
l Modifying existing homes is costly and is a factor in
many people having to leave their homes for aged-care
facilities.
l Only regulated standards will make housing
accessible. Market-based solutions (such as
encouraging builders and developers to incorporate
universal design principles in new housing) have not
worked to date.
l Accessible housing is not more expensive, nor will
it add significantly to housing costs if factored and
designed in at the beginning.
While Victoria is currently leading the way, moves are
afoot to create a nationally consistent approach to
universal design in all building codes. n
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www.mssociety.org.au
Q&A
Your MS-related, health and lifestyle
questions answered.
If you have questions about MS-related issues, please contact MS ConnectTM on 1800 042 138.
When will I be
able to access oral
medications to treat
my MS?
While there are currently no oral medications
available for the treatment of MS, there are
many clinical trials underway around the world
that are working towards making this possible.
In fact, there are a few international trials
which are nearing completion. This is a positive
sign that access to oral medications may not
be too far off.
For example, in September 2009, an
application was made to the US Food and
Drug Administration (FDA) for approval
of oral cladribine for relapsing MS. In a
large-scale phase 3 clinical trial, cladribine
tablets significantly reduced relapse rates
and other disease activity in people with
relapsing/remitting MS. Cladribine is a type of
chemotherapy that kills immune T-cells and
B-cells, both of which are thought to be involved
in immune attacks in MS.
The FDA has also agreed to fast-track its
review of the oral drug laquinimod. This should
speed up its future review by the FDA after the
www.mssociety.org.au
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applicant submits results of phase 3 trials
now underway.
In addition, positive results have been
announced from a phase 3 trial of the oral
FTY720 (fingolimod). Trial reports indicate that
fingolimod – an immunotherapy treatment –
has been able to significantly reduce relapse
rates and slow disability progression over two
years in a phase 3 trial involving 1,272 people
with relapsing/remitting MS. The company
producing the drug plans to submit applications
to drug regulatory agencies at the end of 2009.
Other oral agents being investigated include
teriflunomide and oral fumarate.
While oral medications offer increased
tolerability and appear to be effective as
potential treatments for MS, they will need to
be assessed in the longer term as to their
overall safety and side-effect profile.
Exactly when these oral medications will
be available in Australia is difficult to say as
any new medication needs to be approved
by the Therapeutic Goods Administration
(TGA) in Australia. The process of applying for
a TGA licence will often take many months,
sometimes longer. During this time, experts at
the TGA evaluate data to ensure that the drug is
safe and for what conditions it is effective. Once
a drug has TGA approval, a doctor can prescribe
the drug however, it will not automatically
be covered by the Pharmaceutical Benefits
Scheme (PBS). This means that many of these
drugs would cost several thousands of dollars
per month.
The company may decide to apply for a
PBS listing to have the drug subsidised. This
is a long and complex process. The drug is
reviewed by the Pharmaceutical Benefits
Advisory Council which consists of experts
who meet three times a year. They evaluate the
safety and efficacy of the drug. Consideration
is also given to whether the drug is good value
for money. For high-cost drugs, the Minister for
Health and Ageing or the Federal Cabinet may
need to give additional approval.
We will keep you updated as more information
becomes available on oral medications for the
treatment of MS. n
* Sources: www.nationalmssociety.org,
www.mscenter.org/, www.tga.gov.au, www.pbs.gov.au.
Thank you to Dr Elizabeth McDonald, Medical Director, MS
Australia - ACT/NSW/VIC, for assistance with this article.
summer 2009
My Story: A New Beginning
Diagnosed with MS 25 years ago, Sally Townrow simply says, “It won’t beat me”. She tells
Rebecca Kenyon how it’s never too late to take a new lease on life.
Feeling “better than ever” as she
approaches her 50th birthday,
Sally Townrow’s ‘can-do’ attitude,
determination, and love for life, her
family, as well as a good chat, is
contagious.
The last few years have been
particularly joyous for Sally, having
married her loving husband Phil and
acquiring an instant family with four
step-children in their twenties. As an
only child, Sally is now embracing
family. “My husband and his kids are
very supportive; they’d do anything
for me,” she says. “They don’t
mollycoddle me, but they’re always
there and they understand. It’s
wonderful.”
planning her days and incorporating
plenty of rest, Sally is able to enjoy a
full life as a housewife and mother,
and also makes time to help out in
her husband’s engineering business.
On the Move
Sally’s Journey
Sally recalls being grateful that her
MS was diagnosed fairly quickly. “I
went to my GP because I was having
double-vision,” she explains. “They
sent me to a neurologist straight
away who told me I either had a brain
tumour, SLE [Lupus] or MS. He then
organised for me to have a lumber
puncture, pathology tests, an MRI,
and within three months it came
back positive for MS. I was actually
relieved to know what it was.”
While initially treated with
prednisolone, Sally also dealt with
her diagnosis by doing what she loves
most – travel. She went on a group
tour around Europe with a friend,
and while she admits to being a
little naïve about the consequences
of over-doing it back then – landing
herself in hospital for a week when
she returned home – she takes much
more calculated risks now.
Sally was also told that the MS
Society (now MS Australia – ACT/
NSW/VIC) held regular dinners in her
local area where she could go along
and meet other people with MS. “I got
a lot of information from those events
and, through that, I also used to offer
support to other young people who
were newly diagnosed. I’m pretty good
at chatting,” she laughs.
Sally had worked as a secretary
for many years but soon after her
diagnosis, cut back her hours to
part-time, realising that over-doing
it would bring on MS attacks. “I did
have a really big attack in 1990,” she
recalls. “My hands went numb and
because I was a secretary, I couldn’t
work, so I thought, there’s more to
life than trying to get yourself better
to get back to work. Then the stress
puts you back into hospital again.”
With the ongoing support of her
Staying fit and active, and building
her strength is another priority for
Sally. While never the ‘athletic’ type
in her younger years, Sally is making
up for it now by going to the gym
and working with a personal trainer,
learning to swim, and cycling with
Phil on their tandem bike. “Since I
got married, I feel better than I ever
have,” she declares. “I never thought
I would be able to learn to swim or
go to the gym, but I’ve surprised
myself… I can actually do it!”
Sharing a love for adventure, Sally
and Phil travelled to Mexico last
year and are planning their next trip
across Australia for mid-2010.
“We walked a lot in Mexico, which
I didn’t think I’d ever be able to do,”
says Sally, “but because of the
exercise, I am now able to be more
active day-to-day.”
Like many people with MS, the
heat can exacerbate Sally’s fatigue,
so she was careful to manage this in
Mexico’s warm, humid climate. Being
fitter enabled her to do more, but
Sally was sure to plan in rest days.
Don’t think ‘I can’t’. Ninety percent
of this disease is staying positive
and not giving in
parents, Sally decided to leave work
to focus on her health.
Around the same time, Sally was
involved in a drug trial, which is
when she found out that she had the
relapsing/remitting type of MS. “To
me, though, if you’ve got MS, you’ve
got MS,” she says.
While immunotherapy treatment
now keeps major MS attacks at bay,
Sally still has to be sure to manage
her symptoms, especially fatigue. By
“I also had letters from my doctor
regarding my medication. I would
use freezer packs to keep it cool
when we were on the road and when
we stopped I would just ask to use
the fridge in the hotel kitchen. The
trip was well planned out, which is
important.”
“My advice is, don’t think
‘I can’t’. Ninety percent of this
disease is staying positive and not
giving in.” n
Would you like to share your story with other people living with MS? Contact the editor on (02) 9646 0725
or email [email protected]
COVER STORY
Beat
the
Enjoy the good things the festive season
has to offer by following these practical
tips to keep cool, as well as stay safe and
active this summer.
While the summer heat can be unwelcome for many
people with MS, there are solutions to minimise the
impact heat has on your ability to do what you need and
want to do.
Research indicates that even the smallest increase
in temperature can cause a pseudo exacerbation of
MS symptoms. In MS, damage to nerves causes the
messages which pass along them to slow and become
blocked. It is thought that when the myelin sheath around
a nerve is damaged – which is what happens in people
with MS – the nerve lacks insulation and becomes highly
sensitive to heat, causing MS symptoms to become
temporarily worse. An increase in body temperature of
just 0.5ºC is enough to have an effect.
Internal causes of increased body temperature
include fever and infection, having a very hot drink and
menstruation. External factors include hot weather and
hot showers or baths.
Symptoms usually settle again when the nerve returns
to its normal temperature by resting and cooling.
Some people with MS may not be aware that they are
sensitive to heat. To check this, ask yourself the following
questions: Do I feel more fatigued in the hotter weather?
Do I feel more fatigued after a warm/hot shower? Do
I feel more fatigued after doing the dishes with my
hands in hot water? If the answers are yes, the following
strategies can help you to minimise the affect of heat on
your symptoms.
www.mssociety.org.au
12
Exercise & Physical Activity
While it is tempting to avoid physical exertion altogether
in the warmer months, MS Australia – ACT/NSW/VIC
physiotherapists recommend staying active all year
round to maintain general health and fitness, manage
fatigue, improve your mood, and minimise the impact
of MS. Exercise is also important to avoid complications
associated with physical inactivity, such as further
muscle weakness, deterioration of cardiovascular
endurance, and chronic diseases such as stroke,
diabetes II, osteoporosis and heart disease.
Nevertheless, it is important to make a few
adjustments to any exercise regime in summer to avoid
overheating.
intouch
summer 2009
Stay hydrated
Drink plenty of fluids to replace
those lost through perspiration and
evaporation.
For more tips on consuming a ‘cool’
diet, read our feature article on page
30.
Plan ahead
Listen to the weather report and
plan your day or week. The Bureau
of Meteorology (www.bom.gov.au)
produces fairly accurate seven-day
forecasts.
Be flexible in your plans on really hot
days. Expect less of yourself on these
days and do whatever you can to
remain relaxed.
Plan rest periods during the warmer
part of the day.
Venturing outdoors
Choose to go out in the cooler part
of the day.
Fill a reusable drink bottle half way
and freeze it. Top it up with water
just before you head out.
If using a portable fan remember
that it will be more effective if
combined with moisture from
a cooling garment or water
spray. (Note: In extreme heat,
fans can actually make people
hotter. Avoid using them in these
circumstances).
These can include:
l Avoid exercising in the middle of the day; instead, try mornings
and evenings.
l Drink plenty of water and keep self-hydrated at all times.
l Exercise in the shade or places with air conditioning.
l Activities such as swimming, tai chi and yoga are more suitable
for warmer weather.
l Wear loose, comfortable clothing.
l Cool down and rest after exercise (i.e., have a cool shower).
l Use cooling scarves and/or have a water spray bottle handy
while exercising.
l Pace exercises so the body is not getting overheated.
l Consult with your physiotherapist about the best exercise
regime for you.
summer 2009
13
intouch
Enquire beforehand as to whether
locations are air conditioned.
Try to ensure that you have an airconditioned vehicle and have your
air conditioning checked on a
regular basis.
Park the car undercover, if
possible, or use a sun shield on the
windscreen to keep the heat out.
Consider alternatives, such as
doing your banking, paying bills or
shopping online.
www.mssociety.org.au
Keep your body cool
Wear lightweight, loose, ‘breathable’
clothing. Some people with MS
experience both heat and cold
sensitivity. If warm clothing is put
on in the morning, it is important
to monitor the temperature during
the day and adjust clothing to avoid
overheating as the day gets warmer.
Choose clothes and bed linen made
from natural fibres.
A ‘cool’ home
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Close the curtains before the summer sun has a chance to heat your
room/s. Window coverings such as thermal-lined curtains will help
provide insulation.
Seal off all cracks and gaps in doors and window frames.
Invest in air conditioning if you can.
If you don’t have air conditioning, keep the air moving with an
oscillating fan or open the windows when there is a cool breeze.
(Note: In extreme heat, fans can actually make people hotter. Avoid
using them in these circumstances).
Eat prepared cool foods or microwave meals instead of using the oven
and stove to cook meals.
Wear a wide-brimmed hat in the sun.
Use a spray bottle and/or small
personal fan to cool your face
and body.
Wet face washers/scarves can be
worn around the head and neck for
some cooling relief.
Take a cool bath or head
for the pool.
Wear cooling products such as
cooling neck ties, hats or vests**.
Consider obtaining a cooler bag
to keep your cooling vest, neck tie
and cool drink in when you go out
so that it stays cool until you require
it. The following websites have more
information on these products.
Neck Tie Coolers
www.necktiecoolers.com
Ferno Australia
www.ferno.com.au
Iceepak
www.iceepak.com.au
Cool Vest
www.coolvest.com.au
Personal Health Products
www.phpa.biz
SafetyQuip
www.safetyquip.com.au
Kool Tubes
www.kooltubes.com.au
Some new products on the market
include the Chillow Pillow – a fluidfilled flat memory foam cushion
(visit www.the-pillow.com.au for
more information), and the Lecky
Sleepform System Cooling Blanket,
available through Lifehealthcare
(www.lifehealthcare.com.au).
www.mssociety.org.au
Seek Support
Talk to your family and friends about the impact heat can have on you.
Perhaps give them this article to read!
Staying inside during the summer heat may contribute to feelings of
isolation and loneliness. Try to stay in contact with friends and family
or connect with one of the MS Australia – ACT/NSW/VIC Peer Support
Volunteers by calling MS Connect on 1800 042 138.
Financial Assistance
There’s no doubt electricity bills increase in the warmer months thanks
to energy-hungry air conditioners and fans, etc. Our main feature article
in the Spring 09 edition offered a range of tips to decrease energy
consumption in the home (and the subsequent cost) however, there are
energy concessions available in some states.
The Victorian Government’s Medical Cooling Concession provides a
17.5 percent discount off electricity costs over a six-month period (from
1 November to 30 April) for concession cardholders with MS and other
qualifying medical conditions. To be eligible, an application form must be
completed and the concession needs to be reapplied for annually. Forms
are available from your electricity retailer, or by contacting the Concessions
Information Line on 1800 658 521 or MS Connect on 1800 042 138.
The NSW Government also launched its annual $130 Medical Cooling
Rebate recently to help those on low incomes with a medical need to keep
Your Suggestions
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Here are some extra suggestions sent in by
people with MS on how they ‘beat the heat’.
Keep your feet cool by rolling a frozen bottle of water backwards and
forwards under your feet.
Make sure you have various sizes of cooler bags and bricks, suitable
for all occasions.
Personal misting fans are useful, as is a simple spray bottle.
If you don’t have insulation, take advantage of the government grant
to get it installed [see Intouch, Spring 09 edition]. It will reduce your
cooling costs in summer.
Have a cool shower in the hottest part of the day and another one just
before you go to bed.
Visit your local shopping centre, library or club during the hottest part
of the day… most public buildings are now air-conditioned and you’re
not paying for it like you do at home.
Watch a movie that is set in a cold climate, such as Alaska or Antarctica.
Have ceiling batts installed.
Enquire as to whether you can pay your electricity bill in instalments.
14
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summer 2009
COVER STORY
l
Visit friends or family who have air conditioning and
have not been affected by the power outage. Or, go to
an air-conditioned shopping centre or to the movies.
l Have an esky available and buy a bag of ice from the
local petrol station so that your drinks can remain icy.
l Take a cool shower and, other than your feet, don’t
fully dry yourself.
l Keep your feet and/or hands cool by soaking them in a
container of cold water. However, be careful – ensure the
floor next to you doesn’t get slippery and don’t carry the
water container if you have difficulty with balance.
cool. The rebate goes into effect on 1 January 2010, with
electricity retailers accepting applications in December.
A full report on this new initiative, with additional contact
details can be read in our ‘News’ section on page 8.
MS Australia – ACT/NSW/VIC also provides a needsbased Financial Assistance Scheme to support eligible
clients with the purchase of home air conditioners. For
eligibility criteria and more information, contact MS
Connect on 1800 042 138.
In an Emergency
Power outages and bushfires are major considerations
for all Australians in the hot summer months, but even
more importantly for people with medical conditions such
as MS. For those relying on electricity to keep cool, losing
power is a major concern, and we all know the effect
bushfires can have on the unsuspecting. While some
state governments (such as Victoria) are developing a
Heatwave Planning Guide for local councils, there are
some key things you can do to start planning in case of
an emergency.
Emergency planning
Let local emergency planners/services know that you
will need help in the case of an emergency. This is
especially important if you use mobility aids and you
need assistance evacuating the area.
Emergency service contact details:
l For emergencies: call ‘000’ (triple zero)
l ACT: (02) 6207 8444, www.esa.act.gov.au
l NSW: 132 500, www.ses.nsw.gov.au
l VIC: 132 500, www.ses.vic.gov.au
The Red Cross also has a Telecross service, which
provides a daily phone call to elderly or isolated
individuals to ensure they are safe and well. To register,
or for more information, call:
l ACT: (02) 6234 7629
l NSW: (02) 4941 3201
l VIC: (03) 8327 7753
In case of losing power:
Wet a hand towel, drape it over your shoulders, and try
to sit in an area where there is some air circulating.
l
summer 2009
15
In case of a bushfire or a high fire danger warning:
l It is recommended people with a disability, especially,
evacuate to a safe place the day before a forecast
catastrophic fire danger day.
l Discuss your plans with family, friends and neighbours.
l Use the bushfire preparedness checklist below. n
Bushfire Preparedness Checklist
Your Home:
l Have your gutters been cleared?
l Are your lawns regularly cut?
l Are there any branches overhanging your home?
l Are the outside walls of your home clear of anything
stacked or stored?
l Is your yard tidy and free of rubbish?
Yourself:
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Do you know the warning for high fire danger in
your area?
Have you organised with your family, friends and
neighbours to stay in contact on high fire danger
days?
Do you have transport to leave your home on high
fire danger days?
Do you know what you need to take with you?
Have you organised where you will go?
Do you know where your local community will
evacuate to if a fire occurs suddenly?
Have you organised how you will get there if a fire
occurs suddenly?
Source: Health & Community Services Bushfire Preparedness Kit, by
the Victoria State Government (www.health.vic.gov.au/bushfires)
* Acknowledgements: Special thanks to the MS Australia – ACT/
NSW/VIC occupational therapists and physiotherapists who
assisted with this article.
**Disclaimer: The information in this article should not be used
for individual medical advice, nor does Multiple Sclerosis Limited
endorse any one product over another. For more information
about the management of heat-related symptoms, or if you would
like to discuss personalised cooling strategies, please contact your
health professional or MS Connect on 1800 042 138.
intouch
www.mssociety.org.au
FEATURE
Smoking & MS:
The Facts
We all know the damage cigarette smoke can have on
our health however, recent research reveals smoking can
also increase a person’s risk of developing MS, as well
as disease progression. The good news is, smoking as a
risk factor is in one’s control.
By Dr Gary Fulcher, Senior Clinical Psychologist and PNI Consultant;
and Esther Summat, Clinical Psychology Intern, MS Australia – ACT/NSW/VIC
With evidence suggesting that smoking plays a role in MS
development and progression, now would be as good a
time as any to quit!
Recent studies reveal that avoiding smoking may not
only reduce newly developed cases of MS but also that,
quitting the habit is likely to result in reduced progression,
fewer relapses and higher remittance for those already
living with MS.
Studies that compare incidence and progression of
a trait or illness among groups of people or populations
(e.g., smokers versus non-smokers) are known as
epidemiological studies. They indicate the relationship
between the incidence (or severity) of the illness, such
as MS, and a particular environmental influence, such as
cigarette smoke.
In a general population-based study of 22,240 people
in Norway, the incidence of MS was double in smokers
compared to non-smokers, with the extra risk as high for
male and female smokers. Of the 65 smokers with MS,
63 had been smoking long before their MS diagnosis.
An even higher incidence of MS (60 percent) among
smokers versus non-smokers has been reported in a
study of 238,638 women in the United States. Other
factors, such as age, geography, alcohol intake, body
mass index, education and socioeconomic status could
not explain this relationship.
A smaller, more recent study showed that the risk of
converting from clinically isolated syndrome (a first
neurologic episode caused by inflammation/demyelination
in one or more sites in the central nervous system, lasting
at least 24 hours) to clinical definite MS is almost doubled
among smokers compared to non-smokers.
In another study of 201 previously-diagnosed cases
of MS, the risk of developing secondary progressive MS
among people with relapsing/remitting MS was three
times higher in smokers than non-smokers. This suggests
that transformation of MS into a progressive course is
likely to occur due to cigarette smoking.
Adding to this, a very recent study conducted in
Tasmania revealed that the more a person with MS
www.mssociety.org.au
16
smoked, the worse their levels of disability were over time.
Equally worrying are the findings in several European
studies that passive smoking is associated with an
increased risk for MS. It has even been suggested that
smoke exposure may explain the higher incidence of MS
in women.
What’s the connection?
MS is a disease of the central nervous system (CNS – the
brain, the spinal cord and the optic nerves). In people with
MS, myelin, which encases the nerve fibres (axons) of the
CNS and assists in nerve function, becomes inflamed and
damaged (demyelinated). The nerve fibres themselves
may also be damaged.
The body’s immune system normally defends the
body from attack by viruses or bacteria. In the case of
MS, however, the body’s immune system attacks its own
myelin, causing problems with nerve transmission.
Studies have found that smokers have abnormally
high levels of peripheral blood leukocytes (white blood
cells that are responsible for the immune system) and
abnormally high levels of active inflammatory agents
in the body. Given MS is an inflammatory, autoimmune
disease, these smoking-related issues can add to the
effect MS has on the body.
Another association is that T-cells in smokers don’t
do their job well. T-cells are a type of white blood cell
that control the immune system’s response to diseased
cells. The job of T-cells is to find and attach themselves
to foreign agents in the body and to do this they must
be able to tell the difference between self-proteins and
foreign proteins.
In smokers, T-cells have trouble working out which
agents are foreign, and this may cause the immune
system to attack its own proteins, such as myelin.
Another critical finding is that nicotine increases the
ability of foreign invaders to enter the central nervous
system through the blood-brain barrier. The blood-brain
barrier is a layer of cells that help stop foreign invaders,
such as viruses and immune cells, from entering the CNS.
intouch
summer 2009
FEATURE
Quit the Habit
Breaking a habit can be hard for anyone
but given the evidence on the dangers of
smoking – especially for people with MS –
the strategies below may be able to help you
take control of your health:
01: Have a Plan
Smoking can have many roles in your life – a physical
addiction, a psychological addiction, a relaxation
technique, an activity, a social event and many more.
You will need to have a strategy for each of these
different roles. For example, have some sugar-free
gum available to chew, or a pen to tap like a cigarette
being ashed, to help distract you when you feel like
having a cigarette. Simple actions like these can help
manage the activity or relaxation roles smoking used
to fulfil in your life.
02: Seek Help
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Quitline can help you to make a plan and form
strategies to maintain it long-term. Call 131 848.
Online resources may be useful,
such as www.quitnow.info.au and
www.outsmartcigarettes.com.au
Visit a psychologist who has a specialised
program to help you quit.
Some medications are available. Speak with your
GP about the options.
Some complementary therapies may assist you
to quit smoking.
processes, that occurs in people with MS) they are easily
affected by highly reactive free radicals such as nitric
oxide. This can result in axonal (nerve fibre) degeneration
or blocked nerve conduction. Theories like this are helpful
because they may explain both the onset of MS and MS
progression.
Other theories suggest that the continuous increase
of the toxin cyanide in a smoker’s blood serum causes
widespread demyelination, and that smoking increases
a person’s general vulnerability to infection. This may
then allow entry to bacterial and viral agents that have
long been suspected in MS development. The results of
these findings are that people with MS who smoke have
more brain damage and more severe cognitive (mind)
impairment .
Physically, people who smoke often become dependent
on nicotine because there is a chemical connection
between nicotine and depression. Nicotine intake can
relieve a low mood in the short-term, but it can also cause
a low mood by restricting mood-lifting neurochemicals
in the body. Furthermore, the well-known impacts of
smoking, such as increased risk of cardiovascular
disease, cancers (particularly lung cancer), emphysema,
and so on, are equally increased for people with MS as
they are in the general population.
While the evidence is clearly mounting that smoking
plays a role in MS development and progression, some
smokers with MS or who are prone to MS (i.e., having
first-degree relatives with MS or other environmental risk
factors) may find it difficult to accept these outcomes to
be a result of cigarette smoke.
Theories like this may
help explain the onset of
MS and MS progression
03: Nicotine replacement therapy
This allows you to concentrate on breaking the
mental habit without having to deal with the nasty
effects of breaking a physical habit all at once. There
are a number of options (such as oral remedies and
patches) so speak with your pharmacist about their
differences and benefits.
04: Keep trying
Remember, having one cigarette after you have quit
does not mean you have failed. Go back to your plan
and implement a better strategy for the area you
may have had trouble with.
It has been suggested that leakage through this barrier
has something to do with the onset of MS, as it is thought
that toxins that come into the CNS attack myelin, exposed
nerve fibres or both.
In smokers, nerve fibres can be exposed to dangerous
levels of nitric oxide in their blood plasma. If nerve fibres
have been demyelinated (e.g., due to the autoimmune
summer 2009
17
People often experience cognitive biases, which are
ways of interpreting or paying attention to information so
that it fits in with one’s current belief system. Cognitive
biases are very common in people with addictions, such
as nicotine. In these cases, examples of common beliefs
may be, ‘smoking makes me feel good so it can’t be bad
for me,’ and ‘I enjoy smoking so it’s not worth stopping
unless there is a really solid reason that I should stop’.
For people who are having difficulty accepting what the
research is telling us, ‘Quit’ programs or psychological
counselling may be able to assist with seeing the bigger
picture and forming strategies to change dangerous
habits, such as smoking.
Given the strong evidence presented to date, it is
difficult to hold on to the idea that smoking isn’t doing any
damage. n
* Disclaimer: Information in this article should not be used for
individual medical advice.
** For a list of references for this article, please contact the editor
at [email protected]
intouch
www.mssociety.org.au
EVENTS
A Record $30,000 to Celebrate 30 Years
2009 National Top Fundraiser Cameron Cox
with the Hon. Julia Gillard MP.
Celebrating its 30th year, 2009 was always going to be significant for the MS
Readathon however, 10-year-old Cameron Cox was determined to make it all
the more special.
“I thought that it would be really cool to raise $30,000 in the MS
Readathon’s 30th year,” says the year-four student from Radford College in the
ACT. “I didn’t know if I could, but I did it.”
Following last year’s achievement as the ACT’s highest fundraiser (raising
$16,097.95), Cameron has broken the fundraising record for the MS
Readathon, even beating his own target by raising $30,025!
Cameron has now been participating in the MS Readathon for five years,
having raised an amazing $61,232.95 to date for people with MS.
“I really love books,” Cameron says. “I get to do something that I enjoy and
at the same time I get to help people with multiple sclerosis. Last year a friend
of our family was diagnosed with MS. I used to raise money just to help MS
Australia, but now I have seen how MS affects a person and their family.”
Cameron’s Reading Reward will include a trip to Melbourne and a visit to
the set of Network Ten’s Neighbours. n
Top School for 30 Years Running
When it comes to the MS Readathon,
stories such as that of Sydney
Grammar Edgecliff Preparatory
School are never short of amazing.
Ever since the MS Readathon
began, the school has been one of
the front-runners; always achieving a
high level of students completing the
program and funds raised. Pictured
below are students who have
participated for five years or more.
In 2009, the Edgecliff Preparatory
School continues the story with
www.mssociety.org.au
an incredible $31,331.83 raised
for people with MS. It also has
the highest number of completers
at 113. “It seems fitting that we
celebrate the MS Readathon’s
30th year with Sydney Grammar
Edgecliff Preparatory School in the
top place,” says Anne Foubister,
MS Readathon ACT/NSW Manager.
“For 30 years they have shown such
amazing support for people living
with MS. Special thanks must go
to teacher Martin Rossleigh, and
congratulations to the students for
their wonderful community spirit in
achieving this fantastic result.”
Congratulations must also go to
NSW’s top fundraiser Michael Joseph
Smith. Fourteen-year-old Michael is
currently home-schooled and with
a very supportive family has raised
an amazing $10,325 for people with
MS. What a fantastic result! n
18
intouch
Just Rewards
It’s not every day that Bosko
turns up at your school assembly
to surprise you and say ‘thank
you’ with a tonne of Reading
Rewards. But, on 9 October that
is exactly what happened to
11-year-old Hayden Loader at
Geelong South Primary School.
As Victoria’s top fundraiser,
Hayden raised a fantastic $5,011.
“The look on Hayden’s face when
he saw Bosko was priceless,”
recalls Tina Price from the MS
Readathon Victorian office.
Bialik College (Primary) in
Hawthorn East is Victoria’s
highest fundraising school
for 2009, with their students
raising an amazing $7,687.01.
Congratulations and thank you
to Hayden and Bialik College for
your wonderful support!
summer 2009
EVENTS
Become
an Angel
in Disguise
The MS Readathon is looking for angels
(disguised as humans) to help students
raise funds for people living with MS.
In the Spotlight: Julie Quinn
Julie Quinn from Sydney’s Northern Beaches became
involved in the MS Readathon program in 2009, and is
truly an angel in disguise! We put Julie under the spotlight
to find out what inspired her to get involved.
What did you do before the MS Readathon?
I was a hairdresser for 35 years until a frozen shoulder
meant I had to change my profession. I enjoy working
with people, so I worked in retail for seven years before
recently retiring.
What motivated you to volunteer for the
MS Readathon?
I was lucky enough to be approached by the NSW/ACT
State Manager Anne Foubister to join the MS Readathon
team. At that time I was already thinking of getting
involved in a charity and this provided a great opportunity.
It didn’t take me long to agree – I completed the training
and off I went!
Do you remember your first school visit?
The first school is always the most nerve racking, but it
was made easier because of the lovely librarian (and the
fantastic training I received). The kids were well behaved
and I got a real buzz out of getting the MS message out
there and encouraging the students to read.
How many schools did you visit in 2009? 29.
What is the best part of the job?
Most of the schools I have visited have been welcoming
and the children are great. It is fabulous to answer
the kids’ questions and get them involved through the
hands-on activities we do. I am able to show how living
with MS affects people when doing everyday tasks, such
as tying up a shoe lace.
What is the most challenging part of the job?
There are not many downsides to being an MS Readathon
Community Representative. I think the most challenging
part was the Sydney traffic at times! I always allow extra
time to get to a school visit, ensuring I arrive relaxed and
ready to present.
What was the biggest highlight for you in 2009?
It was an absolute privilege to visit the schools this
year. I recently visited a school to give out awards for all
their hard work – what a delight! The librarian was just
fabulous and the kids were wonderful. n
summer 2009
19
Each year the MS Readathon calls on volunteers
around the country to donate their time to spread the
MS message and visit schools, explaining to students
how they can make a difference by raising funds
through reading.
Many wonderful people volunteer each year. Some
have MS, others know someone with MS or they
simply want to help raise funds for people living with
MS. Without these community-minded individuals
many students would not have the opportunity to learn
about this mysterious disease.
However, there is a shortage of volunteers for 2010,
particularly in the ACT, NSW and Victoria. “We need
more people to get involved and donate some of their
time to visit schools in their local area,” says Anne
Foubister, MS Readathon State Manager NSW/ACT.
Get Involved!
If you like the sound of becoming an MS
Community Representative, or would like
to volunteer in the MS Readathon office,
we would love to hear from you!
The essential qualities required by
Community Representatives are:
confidence in public speaking;
l enthusiasm; and
l being organised.
l
You will also need to be available during the school
visit period (April/May 2010).
We require Community Representatives in
metropolitan and regional areas across ACT, NSW
and Victoria. To join this inspiring team, call
1300 677 323 to speak to Anne Foubister (NSW),
Belinda Gaskin (ACT) or Jessica West (VIC).
intouch
www.mssociety.org.au
For bookings or more information please call MS Connect on 1800 042 138
Information Sessions
Health Management
Newly Diagnosed Information Teleconference
An opportunity to ask questions and learn more
about MS and MS Australia services.
17 Feb 2010, 7 – 8.30pm
Call MS Connect for dial-in details.
Fatigue Self-Management Program
A 6-week program to help you manage fatigue
and conserve energy. Offered as a research
project at selected locations and via the
internet.
Dates TBC, contact MS Connect for
upcoming program dates
Gloria McKerrow House, Deakin
ACT
EVENTS
Physical
Activity
Groups
Dru Yoga Classes
A gentle form of yoga where postures are
modified so that people with various levels of
ability can fully participate, either from a sitting
position or lying down.
l 1st term: 28 Jan - 9 Apr 2010
l 2nd term: 27 Apr - 2 July 2010
Held weekly, 5:30 – 7:30pm
Gloria McKerrow House, Deakin
Cost: $15 (waged participants); $10 (non-waged)
Continence Care in MS – Teleconference
Learn about bladder and bowel problems,
causes, assessment and treatment options.
9 Mar 2010, 7 – 8:30pm
Call MS Connect on 1800 042 138
for dial-in details
Managing Fatigue Teleconference
Receive information on how to manage
MS-related fatigue.
16 Mar 2010, 6.30 – 8pm
Call MS Connect on 1800 042 138
for dial-in details
MS Horseride:
A Galloping Success
www.mssociety.org.au
Despite gusty winds and red dust storms, the
2009 MS Horseride was a huge success!
More than 200 riders and their four-legged
companions enjoyed great entertainment,
undulating countryside and amazing, historic
properties kindly donated to the event. All this,
combined with record-breaking fundraising
activity, was the perfect recipe for a successful
event.
The 13th Annual Horseride was held in
Cassilis, in the Upper Hunter Valley, NSW. With
an abundance of property to trail through, the
participants and their horses spent each day
experiencing everything the area has to offer.
Once the sun went down the entertainment
kicked in and participants exchanged their
riding boots for dance shoes!
Due to the unending generosity of the
participants and their families and friends, the
event auction has raised $110,047 to date, and
the money is still rolling in!
We would like to offer a very special thank
you to all of our tireless volunteers and
generous land owners and sponsors. The event
wouldn’t have been possible without your
support. n
intouch
summer 2009
20
EVENTS
NSW
For bookings or more information please call MS Connect on 1800 042 138
Information Sessions
Health Management
Newly Diagnosed Information Teleconference
An opportunity to ask questions and learn more
about MS and MS Australia services.
17 Feb 2010, 7 – 8.30pm
Call MS Connect for dial-in details.
Fatigue Self-Management Program
A 6-week program to help you manage
fatigue and conserve energy. Offered as
a research project at selected locations
and via the internet.
3 Mar – 7 Apr 2010 (weekly), 10am – 12pm
Phillips MS Centre, Chatswood
Contact Naomi Quinn, Occupational
Therapist on (02) 9646 0737 or
[email protected]g.au
Newly Diagnosed Information Session
Meet others, ask questions and learn more
about MS and MS Australia services.
6 Mar 2010, 10am – 3pm
Studdy MS Centre, Lidcombe
Working With MS
Explore your rights and responsibilities at work,
as well as super, insurance and finance matters.
20 Mar 2010, 10am – 12pm
Studdy MS Centre, Lidcombe
Physical Activity Groups
Maximising strength, flexibility and aquatic
exercise groups are held throughout regional
and metropolitan NSW. For exact locations and
times call MS Connect on 1800 042 138.
Continence Care in MS –
Teleconference
Learn about bladder and bowel problems,
causes, assessment and treatment options.
9 Mar 2010, 7 – 8:30pm
Call MS Connect on 1800 042 138 for
dial-in details
Managing Fatigue Teleconference
Receive information on how to manage
MS-related fatigue.
16 Mar 2010, 6.30 – 8pm
Call MS Connect on 1800 042 138
for dial-in details
Wellness Day
Sydney Olympic Park
Explore various health promotion activities relating to mind–body
medicine, stress management and lifestyle.
28 Mar 2010, 9am – 4pm
Soka Gakkai International, Sydney Olympic Park
Speakers: Dr Craig Hassed, GP and senior lecturer at Monash University;
and Sandy Davidson, practicing naturopath, nutritionist and educator.
Cost: $25/person for catering (incl GST)
Contact Sharon Valks, NSW Health Promotion Officer on (02) 9646 0728
or [email protected]
Sydney Spring Cycle
Raises $35K for People With MS
The wind was bellowing on 19 October for the Sydney Spring Cycle, but
that didn’t stop the 10,000 cyclists riding for a reason. MS Australia
– ACT/NSW/VIC were one of the benefiting charities for the third year
running and received a fantastic $35,000 for people living with MS.
Neil Lithgow and The Scooby Gang were the top fundraising team,
raising a fantastic $4,810. Thank you to Bicycle NSW for letting us be a
part of such a great event! n
summer 2009
21
intouch
www.mssociety.org.au
For bookings or more information please call MS Connect on 1800 042 138
Information Sessions
Health Management
Working With MS
Explore your rights and responsibilities at work,
as well as super, insurance and finance matters.
l Part 1: 16 Feb 2010, 6 – 8pm
l Part 2: 23 Feb 2010, 6 – 8pm
Caroline Springs Library, Caroline Springs
Get Active with MS
Led by physios, you will receive advice on ways
to get more physically active, increase fitness
and build strength.
4 Mar 2010, 6 – 8pm
The Nerve Centre, Blackburn
Newly Diagnosed Information Teleconference
An opportunity to ask questions and learn more
about MS and MS Australia services.
17 Feb 2010, 7 – 8.30pm
Call MS Connect for dial-in details
Continence Care in MS – Teleconference
Learn about bladder and bowel problems,
causes, assessment and treatment options.
9 Mar 2010, 7 – 8:30pm
Call MS Connect for dial-in details
VIC
EVENTS
Physical Activity Groups
Maximising strength, flexibility and aquatic
exercise groups are held throughout regional
and metropolitan Victoria. For exact locations
and times call MS Connect on 1800 042 138.
Wellness Day
Benalla
Explore various health promotion activities
relating to mind–body medicine, stress
management and lifestyle.
March 2010
Date and location TBC
Cost: $25/person for catering (incl GST)
Contact Jon Adams, Health Promotion
Officer (Vic) on (03) 9845 2840 or
[email protected]
Thinking and Memory
Led by a neuropsychologist, explore common
MS-related thinking and memory changes, and
their management.
11 Mar 2010, 6 – 8.30pm
The Nerve Centre, Blackburn
Managing Fatigue Teleconference
Receive information on how to manage
MS-related fatigue.
16 Mar 2010, 6.30 – 8pm
Call MS Connect for dial-in details
Other
Mega Swim
Raising funds for the Go for Gold Scholarships.
l Shepparton: 8 – 9 Jan 2010
l Fitzroy: 26 – 27 Feb 2010
For more info, visit www.megaswim.com
On Ya’ Bike for the
Melbourne Summer Cycle!
Join in the Melbourne Summer Cycle
(MSC) on Sunday 21 February 2010
and enjoy the unique opportunity to
explore Melbourne, on your bike!
The event provides a valuable
experience where participants can unite
and share a deep sense of community
as they ride for people living with
MS. This year we’re aiming to raise
$650,000!
People with MS can also be partnered
with an MSC participant who will ride on
their behalf. We encourage friends and
www.mssociety.org.au
22
intouch
family of people living with MS to ride
on their behalf or ride by their side. A
fundraising web page can be set up to
allow the both of you to fundraise online
and share the glory together!
Register online now at www.
melbournesummercycle.org.au, or call
1800 287 367 for more information.
If you aren’t able to participate but
still want to be part of the action, why
not volunteer to help out at the event!
Apply online at the website or call
(03) 9845 2770. n
summer 2009
MS COMMUNITY
A Generous Bunch
Thank you to the wonderful community events that have
helped raise much-needed funds for people living with MS.
Riding for Wheels
Having raised more then $57,000
to date, the AllTrails Riding for
Wheels project is raising money to
provide wheelchairs for people that
would otherwise have no access to
a mobility aid. Congratulations to
the AllTrails cyclists and crew who
have just completed three epic
journeys around Australia – Alice
to Darwin, Darwin to Broome and
Perth to Adelaide.
During the event, more than
140,800 kilometres were cycled
on road bikes, over 50,000
photos were taken, 6,510 meals
consumed, and a lifetime of happy
memories were created for all.
Thanks to a fantastic
fundraising effort, MS Australia–
ACT/NSW/VIC has been able
to provide three wheelchairs to
people that would otherwise have
no access to a mobility aid.
Our sincere thanks go to Phil
and Sue McDonald, the team at
AllTrails, and all the cyclists for
being involved, and creating such
an amazing opportunity to allow
this fundraising to occur. n
Community Fundraising Roll of Honour
l
City 2 Surf Running Festival –
participants raised $22,662.
Top fundraisers were Andrew
McLennan (NSW), $6,222; and
Denis Reid (ACT), $5,000.
l Blackmores Sydney Running
Festival – participants raised
over $9,000
l Nationwide Hire, Rutherford –
Cheeseburger Eating Contest
raised $9,268
l Myer Eastland Community
l
l
l
l
l
l
Group – raised over $5,500
Danielle Forster – afternoon tea
event raised over $5,000
Sabrina Moda – Gala dinner
dance raised over $3,000
Ritchie’s community benefits
cards for Aug/Sept raised $1,400
Matthew Allen Bowcock – cut his
waist-length hair to raise $650
Lions club – raised over $500
Marie-Christine Taylor – event at
LPR fitness studios raised $240
Ghina Salhab (left) celebrates with
friend Rayanne Mussa.
Festival Raises $5,000
On 22 September Malek Fahd
Islamic School in Sydney’s Greenacre
hosted the Festival of Eid, a three-day
celebration at the end of Ramadan,
during which the students raise
much-needed funds for charities.
This is the second year that MS
Australia – ACT/NSW/VIC has been
invited to attend and participate in
the festival. More than 500 people
attended including students, family
and the community. Students
presented a concert and their
artworks, and funds were raised by a
variety of food, art, jewellery and craft
stalls – $5,000 of which was donated
to MS Australia – ACT/NSW/VIC.
Thank you to the Malek Fahd
Islamic School for sharing this event
with us and helping to raise money to
support people with MS. n
Would you like to become a community
fundraiser for people living with MS?
Contact the following representatives
from our Events Team:
ACT/NSW: Kerry Hill on (02) 9468 8341
VIC: Heather Rendell on (03) 9845 2710
6 Years for Local Cycling Event
This year was another huge success for the Shepparton – Murchison –
Heathcote Bike Ride in regional Victoria, raising more than $7,000 for
people with MS. The weekend ride, held on 3 – 4 October, saw 125
participants enjoying the cycling course, stopping for a gourmet lunch in
the country and sampling all the goodies on offer at the Heathcote Wine
and Food Festival.
This is the sixth year that Jill Pinner has organised the Shepparton –
Murchison – Heathcote Bike Ride. Thank you to Jill for all your efforts and
ongoing commitment to helping people with MS. n
summer 2009
23
intouch
www.mssociety.org.au
MS COMMUNITY
Intimacy – A Carer’s Perspective
John, a loving partner and carer of a person living with MS, shares the
importance of talking about an often taboo topic – intimacy.
While I have had plenty of experience
in caring for someone with MS, I
am still just a normal human bloke
who is now talking about the most
sensitive of subjects – sex.
Despite being a natural part of life,
intimacy can often be a challenging
topic for people with MS and their
partners. While a happy, healthy sex
life is still achievable, the symptoms
experienced by people with MS can
change things, and it’s often difficult
to talk about.
Over the decades women have
gathered in groups to talk, chat
and giggle their way through life’s
issues. Inevitably, at times, the
subject may get around to what
happens in the bedroom, or what
goes on in front of the fire on a
cold night…
The fact is, most women seem
to be able to talk quiet freely on the
subject of intimacy – and almost
anything else for that matter. They
have the ability to turn a dirty joke
into an in-depth discussion and, of
course, when some wine is thrown
www.mssociety.org.au
into the mix, discussion can get even
more fun.
We males, on the other hand, have
great difficulty in talking to each other
about such things. Sure, we gather
at football games, the pub or around
the barbeque and ‘chew the fat’,
but our own relationships are rarely
broached. Sharing a dirty joke might
be one thing but if we even dare ask
another how often he has sex with
his partner, it is best to duck.
So how can we, as carers and
people with MS, break down this
barrier and begin talking about
this most sensitive and important
subject?
The article ‘Relationships, Intimacy
and Sexuality’ published in Intouch
Summer 2008 was a good indication
that someone is on the right track in
bringing this subject to light.
If you don’t feel comfortable
talking with your partner, perhaps
talking to someone anonymously over
the phone will make you feel more at
ease. If so, the Peer Support Program
run by MS Australia – ACT/NSW/VIC
24
intouch
could be a wonderful place to start.
Those involved in the program are
volunteers who either have MS
or are carers of people with MS,
and all have some connection and
experience with dealing with some (if
not most) of the issues that can arise
when living with MS – including sex.
Overall, the important thing is to
talk and if a Peer Support Volunteer
can’t help, they can certainly put us
in touch with someone who can.
So, perhaps we aren’t as alone as
we all thought we were. Whether it’s
to do with intimacy, or anything else
around living with MS, you should
never feel far from the support you
need. n
John (The Watcher), regional NSW
MS Australia – ACT/NSW/VIC
health professionals are also able
to assist you with any concerns
you may have around intimacy
and living with MS. Call MS
Connect on 1800 042 138 for more
information on these, or our Peer
Support Program.
summer 2009
MS COMMUNITY
A Helping Hand
Living with MS can be challenging but for Irene and Ron
West, the opportunity to go on a holiday and rekindle
their relationship has made all the difference.
Since Irene was diagnosed with MS
in 1982 she has always required a
certain level of care, but her loving
husband Ron gave up work eight
years ago to look after her full-time.
While this husband and wife make
a great team, Irene and Ron admit
that MS has made life challenging at
times. Due to physical and emotional
stress over concern for Irene, Ron
experienced a nervous breakdown
at one stage and the couple realised
taking time out for respite would be
important.
In the early days, Irene would
spend a week at a time in various
facilities, until the residential unit
opened at the Studdy MS Centre in
Lidcombe in 1985, where Irene now
spends two weeks, three times a
year. “I don’t know who enjoys it the
Irene and Ron have since been
approved for a second FlexiRest grant
to go towards a trip to New Zealand in
February next year (2010).
“We’re going over for 10 weeks
to see our daughter and her family
who we haven’t seen for three years,”
says Ron. “We’re going to do a lot
of bonding over there and we’ll get
to see our grandchildren, one of
which we’ve never met who is 18
months old.”
“It makes a big difference knowing
that financial help is available,” adds
Irene. “Now, even the lead-up to the
holiday is exciting and it motivates us.
“I would really recommend that
anyone with MS and their carer
who is looking for some time out,
just use FlexiRest, if you can. When
something like that is available, why
not use it when it can make such a
difference?”
FlexiRest is a NSW Government
funded program so it is only available
to registered clients in NSW. However,
there are other respite programs
and services available in Victoria
and the ACT. Contact MS Connect
on 1800 042 138 for more
information. n
their respite needs, particularly
where these can’t be met by existing
community services.
FlexiRest provides funding for a
range of respite solutions, ranging
from in-home respite through to
support for a holiday, transport
support, services that cover regional
and remote areas, and much more.
Irene and Ron were granted
$1,000 to put towards a week’s
holiday on the NSW South Coast in
November 2008. “It was great just
to get away from home,” recalls Ron.
“We spent the time bonding again,
which was just really good for us.”
“We spent the week in a beautiful
spot, in a lovely apartment, which
gave our relationship a real boost,
and the change of scenery was
great,” Irene adds. “Often you need
It was great just to get away from home
... we spent the time bonding again,
which was really good for us
most, me or Ron,” she laughs.
Ron is quick to admit that he
enjoys taking the time to read, fish
and relax, while Irene goes home
exhausted after two weeks of
catching up with friends and going
on outings.
While respite was one way for the
couple to take time out and recoup,
going on a holiday was something
they had never considered. However,
Irene’s Community Support Worker
from MS Australia – ACT/NSW/
VIC identified a need for the couple
to get away and spend some real
quality time together, out of their
home environment. Knowing it
wasn’t something they could afford
to do on their own, she helped them
apply for a grant through the NSW
government’s FlexiRest program.
FlexiRest provides people with
MS, their families and unpaid carers
options and choice to help meet
summer 2009
that more than anything because
you’re together 24–7 in the same
surroundings… just to get away and
see something new can make a big
difference.”
Supporting families and unpaid
25
carers of people living with muscu
intouch
Making time for you
lar dystrophy, motor neurone diseas
e and multiple sclerosis.
www.mssociety.org.au
MS COMMUNITY
Destined to Achieve
Chris’ Story
While our Peer Support Volunteers are constantly ‘giving’
to help others with MS, we ask how some of them are
notching up their own personal achievements.
Mandy’s Story
As a Peer Support Volunteer with
MS Australia – ACT/NSW/VIC, I
provide support to other people
living with MS, over the telephone
and as a Group Facilitator.
For the past year I have also
been involved in the Leadership
Plus Program at RMIT University,
which has been both challenging
and extremely rewarding.
I have always had a thirst
for knowledge – the kind which
could be of benefit to others –
so I have undertaken different
forms of study throughout my life.
This program has enabled me to
gain skills and confidence that I can
now take into the wider community
However, in more recent years,
certain tasks have become more
challenging due to the effect MS
has had on my cognition.
With a lack of understanding
by various educational bodies,
I found myself losing hope and
could not see a way forward
in continuing my study. Then,
along came the Leadership Plus
Program, tailored for people of
‘all abilities’. I was nominated
by the MS Australia – ACT/
NSW/VIC Peer Support Program
staff. The course is run over 12
months and promotes people
with disabilities as leaders within
the community. It provides a
supportive learning environment
tailored to the learning needs of
people of all abilities. It delivers
a range of accredited leadership
competencies and skills, including
chairing; facilitating; round table
discussions; advocating for self
and others; conflict management;
knowledge of policies, procedures,
protocols and governance; and
supporting and guiding the
development of others.
This program has enabled
me to gain skills and confidence
that I can now take into the
wider community and be a
voice for others to help ‘make a
difference’.
For all enquiries relating to the
Peer Support Program, contact
MS Connect on 1800 042 138.
www.mssociety.org.au
26
intouch
When I was diagnosed with MS at
the age of 26, I was shocked. I didn’t
plan for this and all of a sudden I
didn’t know how I could still achieve
my goals – and I had lots of them.
Since my diagnosis I have been in
some pretty dark places, but I have
since taken control of my MS and,
five years later, I now know that (with
a few adjustments) these goals are
still achievable.
Through the help of MS
Australia – ACT/NSW/VIC, health
professionals, treatment and a
more positive attitude, my biggest
achievement at the moment is
that I haven’t had an ‘episode’
in 1.5 years and that the MS has
stopped progressing. I’ve got more
confidence now and my attitude and
perception on MS has changed quite
a lot. I have a newfound belief that, I
may not be able to get rid of the MS,
but I’m going to do as much as I can
to fight it, and win!
I’ve realised that keeping fit and
positive will help because when they
find a cure, at least I’ve kept my
body up and running. I’ve started
going to the gym three times a week
– whereas I couldn’t exercise at all
before – so I’m moving a lot better
now and getting my strength back.
I now feel like I’m part of society
again.
I have also started a graphic
design course and would like to
think that I could start my own
business working from home one
day. I have a lot of goals… I’d love
to travel around Australia and go to
Greece. There was a time when I
never thought that was possible, but
now I can see that it is, and I’d really
just like to enjoy life with my son.
I got involved in the Peer Support
Program this year because I know
how I felt when I was first diagnosed
– it was frightening at times because
a lot of information was delivered to
me via phone, in person, mail and
internet, and I felt lost. So, I’m glad
I can now offer my support and hope
to others that are diagnosed
with MS. n
summer 2009
M
Y
M
Y
Y
MY
K
Support Group Profile
Support Group Facilitator Patrick offers an insight into the
Active Inner West Support Group in Sydney.
Disclaimer: Multiple Sclerosis Limited does not endorse any one product over another, nor do we receive commissions on sale of items. Consumers are encouraged to consult with their health professionals on the most suitable product for their needs.
C
MS COMMUNITY
How did the support group
start, and when did you become
involved?
Meg Alwyn, a person with MS,
established the Inner City Fringe
Support Group in 1994, with the
support of MS Australia – ACT/NSW/
VIC Community Support Workers.
Now called the Active Inner West,
the group works together to arrange
speakers and social activities, and
provides support and information
to one another; it’s friends helping
friends.
When I first gave up work in April
2007, I felt a support group would
provide me with new friends and
things to do, so I joined the group.
While there are about six of us who
band together to organise things,
myself and Craig are now the main
facilitators. Meg, recently returned
from overseas, is still involved and
is actively planning the group’s
Christmas party.
Centre. Throughout 2010 we will
be meeting on the second Tuesday
of each month from 4.30 – 6pm.
We alternate meetings between a
speaker presentation and a general
support meeting. When Dr Gary
Fulcher (Senior Clinical Psychologist
at MS Australia – ACT/NSW/VIC)
spoke at our September meeting, we
had 55 people turn up! About 10 to
15 people come along to the general
meetings.
We had a Christmas-in-July party
at Burwood RSL with a packed room,
and plan to have our Christmas party
on 12 December at the same venue,
in conjunction with the ‘Directions’ –
Top Ryde support group.
What are the benefits to
being involved?
Our members enjoy getting together
to share their positive experiences
and to enjoy the friendships and
Active Inner West Support Group Facilitators,
Patrick (left) and Craig .
social life the group has to offer. We
are focused on encouraging each
other in the ‘here and now’ with
strategies and solutions to ensure
a great quality of life.
How can people join the group?
We welcome anyone who is
affected by MS, including family
members, friends and carers.
You can email me on
[email protected] to request
more information on the group’s
activities, or contact the Active Inner
West Support Group via MS Connect
on 1800 042 138. n
There are a number of MS support groups operating throughout
Where and when do you meet?
ACT, NSW and Victoria. To find one near you, contact MS Connect
Active Inner West meets in Glebe
on 1800 042 138.
at the
St. Helen’s
Community 1 25/02/09 2:55 PM
LIB1161
Advert ApprovalV2.pdf
summer 2009
27
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www.mssociety.org.au
MS COMMUNITY
Volunteers in Action
How volunteers are helping to make a difference
for people with MS.
Giving Something Back
A team effort: (L to R) Joe Micaleff, MS Australia – ACT/NSW/VIC Volunteer; Sharon Eacott,
MS Australia – ACT/NSW/VIC Board Member; Senator Gary Humphries; and Mark Anania, member
of the National Student Leadership Forum.
Garden Makeover
MS Australia’s Gloria McKerrow House in the ACT now has a new and
improved garden thanks to the help of ACT Senator Gary Humphries,
MS Australia – ACT/NSW/VIC volunteers, and members of the National
Student Leadership Forum.
Corresponding with Canberra’s Floriade Festival, the group volunteered their
time for the MS Spring Gardening Day to help rejuvenate the Remembrance
Gardens at the MS Australia – ACT/NSW/VIC regional office in Deakin, ACT.
“This garden will provide a sanctuary for people to relax in and enjoy the
fresh air with their family members and carers,” says MS Australia’s ACT
Regional Manager Gail Everard.
MS Australia would like to thank all the volunteers who helped to create
such a special place for people living with MS. n
Christmas Wrapping Volunteers Needed
MS Australia is partnering with Borders again this Christmas, offering gift
wrapping services for a gold coin donation to raise much needed funds
for people living with MS. The service will be available at all Borders
bookshops during 16 – 24 December. Volunteering for this event is
easy, fun and full of Christmas cheer. Your tireless efforts will go towards
fundraising for people living with MS. If you would like to volunteer for this
activity please contact:
ACT: Lisa Duke – (02) 6285 2999, [email protected]
NSW: Sarsha Sherriff – (02) 9468 8366, [email protected]
VIC: Cheryl McGarvin – (03) 9845 2770, [email protected]
www.mssociety.org.au
28
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Who am I, you ask? Well, I am the
mother of two wonderful daughters, I
live in the lovely Macedon Ranges in
Victoria and work in the city.
I have worked for a large corporate
company for many years but I find
it is often clinical, profit-driven and
soul-less.
I needed to do something
more meaningful so, a few years
ago I decided to get involved in
volunteering. Not only am I able to
give something back, it is also very
enjoyable.
I used to volunteer with Bicycle
Victoria when they assisted with
the first MS Melbourne Summer
Cycle. Since then, I have volunteered
directly with MS Australia – ACT/
NSW/VIC as a regular volunteer
assisting with events such as the
Melbourne Summer Cycle, the Walk
and Fun Run, the bi-annual Charity
Works Ball and anything else going!
Three years on I am still involved
and having a wonderful time.
I will often help out with event
setup, volunteer check-in, course
marshalling, registration, the
information tent, signage, and so on.
I see many of the same volunteers
time and again, so it feels like a bit of
a family, and the staff are a fantastic
bunch to work with.
As volunteers, we are often
profusely thanked for the contribution
we make but I truly think we’re
accepting this under false pretences!
I get so much pleasure out of
doing volunteer work that it seems
unreasonable to take praise for doing
something I enjoy so much.
Volunteering really is the thing to
do. If you want to make a difference,
and have a great time doing it, I
encourage you to give it a go. n
– Kaye Montebello, Events Volunteer
Team Leader
summer 2009
MS COMMUNITY
Welcome to Our New MS Ambassadors
By openly sharing their journey of living with MS, these positive and inspiring people will
help increase public awareness and educate the community about MS. We welcome them
all to the MS Ambassador team!
ACT Region
VIC
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Alex Jacobs works full-time as a Senior
Communication Advisor at the Australian Taxation
Office in Canberra.
l Beth Wurcker works full-time for the Red Cross in
Canberra in a role that enables her to assist people
with varied chronic conditions, including MS.
l Dianne McGaw lives in Goulburn and is a primary
school teacher at a local Catholic school.
l Lauren Kish works full-time in a customer service
role for one of the faculties at the Australian National
University in Canberra.
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New recruits to the MS Ambassador Program: (L to R) Beth Wurcker,
Lauren Kish, Dianne McGaw and Alex Jacobs.
NSW
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Amber Paisley-Topp is a full-time mother-of-three and
lives in the Eurobodalla region on the South Coast.
Irish born Andrew Graeme-Cook used to run surfing
and camping tours along the NSW coast but is now a
full-time, stay-at-home dad to his two young sons.
Twenty-year-old Jessica Sheaffe is from the Southern
Highlands but is currently based in Wollongong while
she studies a Bachelor of International Studies.
Karen Davies is a former high school teacher who now
teaches ‘English as a second language’ to adults in
Wollongong.
Newly married Melinda Zanello lives on Sydney’s
North Shore and is a business development
professional in the corporate arena.
Rachael Rees lives near Wagga Wagga in regional
NSW. The current Miss World NSW, Rachael’s passion
for raising the awareness of MS has come from
watching her aunty live with the challenges of MS.
summer 2009
29
Career-minded Kate Macaulay believes life is full
of challenges and MS is just another one to add to
the list. Her role as an MS Ambassador will be a new
challenge for Kate in 2010.
Having travelled the world, effervescent mother of two
teenage boys Voula Koumouris has learnt that life
never hands you anything you can’t deal with. Voula
is looking forward to embracing her new role as an
MS Ambassador.
Paula Allison resides in the outer north/west suburbs
of Melbourne and works full-time in information
technology training. “As long as I can, I will” is the
upper-most thought in her mind.
Nekita Camilleri is a university student from ‘bayside’
in Melbourne. With the support of family and friends,
and a healthy sense of humour, she is “dealing with
the cards I have been dealt”.
Kristina McMenneman is an ambitious, motivated
young woman working full-time in an exciting event
management position. She finds a positive in every
situation.
Carolyn Smith is a busy single mum working
full-time in the beauty industry. She believes quality,
not quantity, provides optimum health and wellbeing.
Carolyn is the face of the 2010 Melbourne Summer
Cycle.
Become an MS Ambassador
If you are a person with MS, family member or carer;
enjoy public speaking and networking; and have the
capacity to volunteer your time to raise awareness for
MS in your local community, we would love to hear
from you.
If selected, you will participate in two days of training
(including a public speaking workshop) and receive
ongoing support from the MS Ambassador Program
team.
For more information on the program, or to book an
Ambassador for your next event, contact:
ACT/NSW: Stephen Papadopoulos on (02) 9646 0600,
or email [email protected] and
include your telephone number.
VIC: Trish Mifsud on (03) 9845 2700 or email
[email protected]
intouch
www.mssociety.org.au
HEALTH+WELLNESS
A Cool Diet
Keep cool from the inside-out
this summer with these
nutrition hints and tips.
As the thermostat increases, along
with fatigue levels, cooking may
seem like the last thing you want
to do this summer. So how do you
ensure you’re still getting the right
amount of nutrition and hydration,
without breaking a sweat? The
secret is to select light, simple foods
and fluids capable of hydrating and
providing energy.
While eating or drinking something
that is cooler than actual body
temperature will initially produce
a cooling effect, the digestion,
absorption, transportation and
metabolism of nutrients all require
energy, which creates heat. This is
known as the Thermic Effect of Food.
The body is physiologically
programmed to respond to energy
(heat) loss by increasing blood flow
to the part of the body being cooled
and bringing the temperature back
to normal. Eating cold foods alone
will not necessarily lower your body
temperature for a prolonged period.
However, a meal that combines
lean protein foods (lean meats,
poultry, fish, eggs, legumes or
nuts) with the right amounts and
types of fats (mono-unsaturated
and polyunsaturated), plenty
of vegetables and just the right
amount of wholegrain carbohydrates
(wholegrain breads and cereals,
pasta and rice), will keep your
nutrition levels up, and won’t
over-work the body during
digestion.
Overall, it’s important not to skip
meals. If your appetite is affected by
the heat try to have small, frequent
meals. Some ‘cool’ snacks include
smoothies, fruit and sorbets, or,
for an ice cold snack, freeze some
grapes or berries. And, if you don’t
feel like turning the oven on, try
different salads and sandwiches.
Choose Liquids Wisely
It is very important to keep hydrated
during summer as core body
temperature can be affected by
how much water you have in your
muscles, blood and cells.
Many symptoms of excess summer
heat (e.g., dizziness, fatigue) can be
attributed to chronic dehydration, so
aim for eight glasses (or two litres) of
fluid per day.
Tea and coffee may count for some
fluid intake however, sport beverages
(laden with sodium and sugar) can
actually make dehydration worse, as
can alcohol. To make water a bit more
interesting, try adding a quarter of a
cup of fruit juice or a dash of cordial. n
* By Samantha Krupp, registered dietitian and
Information Officer, MS Connect.
Staying Hydrated & Continence Care
Staying hydrated through increased fluids may seem a little daunting to those with MS who have challenges with
bladder urgency and/or incontinence. MS Nurse Yanitza Uzabeaga offers the following advice on managing these
symptoms effectively, while keeping hydrated.
The need to urinate frequently, or incontinence,
is discouraging to an individual with MS and
he/she may restrict their fluid intake due to
embarrassment or fear of having an accident.
However, staying hydrated is very important
and proper management is essential to prevent
urinary tract infections, dangerous urinary
retention that may damage the detrusor (the
primary bladder muscle) and damage to
kidneys due to back-up of urine in the kidney.
Below are some practical strategies to help
manage these symptoms:
l Avoid sipping fluids all day. Try to drink most
fluids with meals and go to the toilet 60–90
minutes later.
www.mssociety.org.au
l
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30
Avoid caffeinated and carbonated beverages as these irritate
the bladder and make you pass more urine.
Incontinence products are available and are a discreet way of
providing that additional peace of mind.
Plan ways to use regular toileting when you’re out.
If incontinence is a regular problem, a review by an urologist
is recommended. They can help you with treatment options to
help cure the incontinence.
Pelvic floor muscle exercises and bladder training can
improve symptoms of urinary incontinence. Your MS Nurse
will be able to assist you more with this.
Daily living self-management involves strategies for people
to manage symptoms themselves. For example, adapting
an exercise regime and being a healthy weight can improve
incontinence, especially in women.
intouch
summer 2009
HEALTH+WELLNESS
Be Informed
The media is rife with information on the latest miracle cures and alternative treatments
for diseases such as MS. But how accurate and relevant is this information to you? Here, we
outline some resources that can help you to correctly assess the information being presented.
MS Connect were recently inundated
with calls in response to an article
in a popular women’s magazine
regarding an (unsubstantiated) ‘cure’
for MS. Such responses suggest
that we should all be cautious about
assessing the truth and accuracy of
what we see and read in the media,
ensuring there is medical evidence to
support any new claims.
Evidence-based medicine (EBM)
is defined by the Department of
Health and Ageing as “the process
of systematically finding, appraising,
and using contemporaneous
research findings as the basis for
clinical decisions”. Following the
principles of EBM means using the
best available scientific evidence to
support your health choices.
Useful Resources
The Cochrane Reviews. As one of
the key resources for the practice of
EBM, these reviews look at a wide
range of studies on a particular topic
and compare them looking at the
quality of the study design and a
number of other features in order to
produce a summary of the available
scientific evidence. Quite a number
of reviews are available about
treatments and therapies for MS.
These reviews are freely available
online at www.cochrane.org/reviews/
en/topics/79_reviews.html
Discern Online. Provided by the
University of Oxford in the UK, this is
a helpful online resource for people
wanting to know more about EBM,
or for people wanting to learn how
to evaluate information according to
the principles of EBM. Access this at
www.discern.org.uk/index.php
Red Flags, Green Lights:
Accessing reliable health
information. Produced by the MS
Society of Canada this publication
summer 2009
can help you to evaluate information
specifically about MS
and apply the principles of EBM in
a very practical way. Access this
at www.mssociety.ca/en/pdf/
redFlags.pdf
“I’ve got nothing to lose by trying
it”: Weighing up claims about
cures and treatments for longterm conditions. Produced by the
MS Society UK and Sense About
Science, this book is especially useful
for all persons with MS, as well as
their families and carers, as it is an
antidote to the seduction of claims of
miracle cures and breakthroughs in
the media.
While the ‘quick fix’ may seem
attractive, it can also create false
hope. This book explains that
untested treatments can lead to
even worse outcomes, such as
HIV infection, in addition to the
existing long-term condition. Given
this risk, people need to be armed
with at least some information on
how to assess claims in relation to
unconventional treatments.
I’ve got Nothing to Lose by
Trying It explains why the media
may emphasise unconventional
treatments and reports of early
research (for sensationalism), why
some unproven therapies may seem
to work (the “placebo effect”), an
explanation of why clinical trials are
so important, and a list of additional
resources.
Given the book was published
in the UK, it does leave out the
dominant centres of MS research
and information in Australia. As such,
it is worth including the resources
below in your search for accurate
health information about MS:
1. MS Research Australia –
www.msra.org.au
2. Making Decisions about Tests
and Treatments (2006) – a
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booklet by the National Health
and Medical Research Council
on how to communicate with
health professionals. For a copy,
phone (02) 6269 1000 or visit
www.nhmrc.gov.au/publications
3. MS Australia – ACT/NSW/VIC
website – www.mssociety.org.au
4. MS Australia – ACT/NSW/VIC
Information Line – MS Connect
– 1800 042 138.
Contact MS Connect on 1800 042
138 to be emailed a copy of I’ve Got
Nothing to Lose by Trying It. n
*Special thanks to Marina Etherington,
Registered Nurse, MS Australia – ACT/NSW/
VIC, and Cathy Milne, Information Officer, MS
Connect for their assistance with this article.
www.mssociety.org.au
HEALTH+WELLNESS
Get Active
How our Health Promotion
Team is helping you to
stay active.
Strength Program
Celebrates 5th Birthday
MS Australia – ACT/NSW/VIC
recognises the importance of
physical activity and, as such, has
developed a number of exercise
programs, specifically for people
with MS.
In fact, 2010 marks the five-year
anniversary of the Maximising Your
Strength Program in Victoria, and the
MS Exercise classes in NSW have
been running for a similar amount
of time.
This milestone is testament to
the success of such groups, as more
and more people with MS realise the
benefits of physical activity.
Danny McAllister from McAllister
Fitness started the Maximising Your
Strength program five years ago
when he identified a real need. “The
idea came about from a conversation
I had with someone from the MS
Society (a McAllister’s client at the
time),” recalls Danny. “We were
talking about how very few trainers
or gyms catered for people with MS.
We developed the program as a pilot
to see if there was enough interest. It
was a success from the start.”
The Maximising Your Strength
program is now run at 12 locations
across Victoria and, essentially,
works with an individual’s needs,
capability and functionality, explains
Danny. “Activities range from building
strength through weight resistance
work to using wobbleboards, bosu
and/or stability balls to work on
improving balance. We focus on
functional exercises that will help
improve quality of life.”
Likewise, the NSW MS Exercise
and Hydrotherapy classes operate
in a group environment covering
all facets of functional exercise.
These classes are offered in various
www.mssociety.org.au
In training: Danny McAllister works with Christine Wagner
during a Maximising Your Strength session in Victoria.
locations across NSW and are just
some of the many physical activity
groups run for people with MS
throughout Victoria, NSW and the ACT.
The best news is that people with
MS of all abilities can get involved in
physical exercise. As Tracy Martinuz,
Exercise Therapist (NSW) at MS
Australia – ACT/NSW/VIC, says,
the benefits of physical exercise for
people with MS are far-reaching.
“Regular exercise improves heart
and lung function, flexibility, muscle
strength and muscle tone,” says
Tracy. “Improved heart and lung
function can lead to better circulation
to the feet, legs and hands. Being fit
can also improve quality of sleep and
assist a regular bowel routine.”
L.E. Ohman has participated in
the Maximising Your Strength
program since it started in 2005.
“I have primary progressive MS and
medicine doesn’t have a lot to offer,
so I’m always on the lookout for
non-medical ways to maintain and
improve my physical and mental
health,” explains L.E. “I believe that
exercise can help with both.
“Several of us have also developed
a social support and networking
group where we share information
and learn from each other.”
“Anyone can benefit from the
program as it’s all about getting
active and involved,” says Danny.
“Exercise is not and should not be
scary. As the group have proved, it’s
good fun.”
For more information on these
programs, contact MS Connect on
1800 042 138. n
Expressions of Interest – New Physical Activity Groups
Thanks to the fantastic response from people wanting to get involved in
physical activity groups, a number of new groups have been launched to
help people with MS to improve their health and fitness.
In NSW, Heartmoves for People with MS will start in Campbelltown,
Maitland and Newcastle in early 2010. And, in Victoria, a new physical
activity and peer support group has started at Swan Hill. New strength
maximising programs have also been launched at Cheltenham,
Heidelberg, Mornington, Hastings and Tuerong.
We are now calling on expressions of interest for new physical activity
groups to start up in the following locations:
ACT/NSW: Canberra, Blue Mountains, Sydney Inner West, Bathurst,
Central West NSW.
Victoria: Geelong, Brunswick, Wodonga and Echuca.
A minimum of six to ten people are required for these classes to go
ahead. Venue, day and time are flexible and will be confirmed.
To express your interest please contact the Health Promotion Officer in
your state through MS Connect on 1800 042 138.
32
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summer 2009
The following MS Australia – ACT/NSW/VIC Wellness Days are tabled
for 2010. Come and learn from experts in integrated health, stress
management, relaxation, nutrition and complementary therapy. You
will have an opportunity to experience a number of different activities,
including Heartmoves, strength maximising, tai chi, yoga, qi gong,
meditation and more.
NSW/ACT:
• Sydney Metro, 28 March 2010
• Nowra, June 2010
• Central West NSW,
November 2010
VIC:
• Benalla, March 2010
• Mornington Peninsula,
May 2010
See our Events section on pages 20-22 for more details, or contact MS
Connect on 1800 042 138.
Photo courtesy The Heart Foundation
Heart Foundation and MS Australia
Join Forces to Get People Moving
The Heart Foundation and MS
Australia – ACT/NSW/VIC have
teamed up to provide greater access
to exercise groups for people with MS.
In addition to the 300 existing
Heart Foundation Heartmoves
classes in NSW, ACT and Victoria,
specific classes for people with MS
will begin to roll out in 2010, starting
with Campbelltown, Newcastle and
Maitland.
Heartmoves is a fun, social and
safe activity program that has been
developed for people with stable
long-term health conditions such as
heart disease, diabetes and bone or
joint problems, as well as MS.
The program focuses on delivering
safe, low-to-moderate intensity
exercise incorporating gentle aerobic
activity, weight-bearing or resistance
exercise and stretching – all of which
help to build strength and fitness, as
well as improve balance.
“The Health Promotion team at MS
Australia actively seek opportunities
to promote the benefits of a healthy
lifestyle to all people with MS,” says
Robyn Faine, General Manager Client
Services for MS Australia – ACT/
NSW/VIC. “Physical activity plays
an important role in assisting to
minimise the symptoms of MS, which
is why we are delighted to be working
with the Heart Foundation to offer
Heartmoves to people living with MS.
“Joining a Heartmoves program
and participating regularly can make
an important contribution, not only
summer 2009
to increased muscular strength and
endurance, but also toward reducing
fatigue and stress levels,” she adds.
“We are very excited to see
Heartmoves being made available for
people with MS,” says Tony Thirlwell,
Heart Foundation CEO – NSW. “It’s a
fantastic program that can offer great
health benefits to people who may
have previously felt worried about
exercising or unable to exercise.”
Heartmoves allows you to exercise
at your own pace in a friendly
atmosphere, and the social aspect
of the program also helps keep you
motivated.
Intouch will keep you informed as
new Heartmoves for MS programs
are rolled out. For more information
or to find a general Heartmoves
class near you, call MS Connect on
1800 042 138. n
CAAS is
changing
• From July 1, 2010
CAAS becomes CAPS
(Continence Aids Payment
Scheme)
• The new scheme allows
eligible clients* to buy
continence products from
a supplier of their choice
• CAPS funds will be
provided as a direct
payment into a nominated
bank account
• Medicare will handle
the funds transfer of the
CAPS scheme
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Heartmoves Ambassador and Leader
John Morrall (former Biggest Loser contestant).
33
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*For eligibility people must apply and meet specific
CAAS/CAPS criteria, following assessment by an
authorised healthcare professional.
www.mssociety.org.au
Disclaimer: Multiple Sclerosis Limited does not endorse any one product over another, nor do we receive commissions on sale of items. Consumers are encouraged to consult with their health professionals on the most suitable product for their needs.
Upcoming Wellness Days
HEALTH+WELLNESS
What services are offered by
MS Australia – ACT/NSW/VIC?
Spotlight On: Physiotherapy
In this new regular column, Intouch describes the role that
various allied health professionals play in helping people to
manage their MS symptoms. We kick-start this new series
with the important role played by physiotherapists.
What is physiotherapy and how can it help people with MS?
Physiotherapy is a clinical health science and profession that plays a key role
in helping people with MS to alleviate and manage their symptoms. While most
of these symptoms are primarily caused by the MS disease itself, they could
become worse or lead to more complications if neglected or not managed
properly on a daily basis.
Physiotherapy plays a preventative and rehabilitative role throughout
one’s MS journey, helping them to maintain and improve quality of life in all
stages of MS.
During the early stage of the disease, physiotherapists can help prevent the
secondary consequences of inactivity, and help slow down the progression
of disability. By encouraging activity and prescribing appropriate exercises,
physiotherapists can help people with MS to improve their fitness, strength
and flexibility.
When problems due to a relapse or progression of MS start affecting
one’s confidence and ability to sit, stand, or walk, physiotherapists can
help with a person’s rehabilitation or recovery. Through functional training,
physiotherapists can help people with MS regain their awareness of proper
posture and their control of movement and balance. They can also suggest
strategies to complement the medical management of complex MS symptoms,
such as spasticity, pain and tremor.
Physiotherapists can offer advice on appropriate mobility aids, and can
help and maintain a person’s quality of life when the progression of MS has
severely restricted their mobility. For example, physiotherapists can educate
people with MS on positioning regimes, and can educate and support
caregivers on how they can help prevent serious complications of immobility by
training them to do passive stretches and motion exercises.
The Federal Government recognises the importance of ongoing consultation
with health professionals for people with chronic conditions, such as MS. As
a result, it has put in place the Enhanced Primary Care (EPC) program. When
arranged through a GP, EPC allows for up to five subsidised visits to various
health professionals every year, including physiotherapists.
www.mssociety.org.au
34
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Physiotherapists are integral
members of our community
teams. They promote the
understanding and management
of physical symptoms in MS by
providing:
l Physical assessment.
l Advice on symptom
management.
l Provision of individualised
programs or referral to group
exercise programs.
l Referral to local or community
physiotherapists.
l Education sessions for clients
and health professionals.
l Information resources.
l Liaison with one’s health team.
l Collaboration with external
researchers to expand
scientific evidence to support
clinical practice.
Physiotherapy assessments
are conducted at the various
metropolitan centres of MS
Australia – ACT/NSW/VIC, or
consultations can be arranged
in regional areas when linked
with a rural consultation program
(which we are looking to arrange
more of). Assessments may be
for physiotherapy only, or be part
of a team assessment with other
members of the allied health
team.
Telephone consultations are
also an integral part of our service,
providing convenience and easy
access for all clients, their carers
and other community groups.
Additionally, our physiotherapists
provide consultation to local
physiotherapists regarding advice
on client care, via the phone or
centre visits.
MS Australia – ACT/NSW/
VIC also runs (and is affiliated
with) gym-based and group
exercise programs operating in
various locations. Classes are
led by trained professionals and
sessions vary according to the
needs of each group.
For more information, call
MS Connect on 1800 042 138.
summer 2009
How often will I need physiotherapy?
Given that MS is different for everyone and can be quite unpredictable, the
need for physiotherapy may be sporadic or ongoing, depending on the needs
of the person.
During major relapses, or when MS has progressed to the point that it is
starting to affect the ease and safety of performing daily tasks, a burst of
intensive physiotherapy is helpful to restore some (or all) of one’s function. For
example, physiotherapists are skilled in setting up a training regime to help
improve specific aspects of walking, such as speed, balance and endurance.
For those with mild to moderate disability, physiotherapy can be ongoing
on a consultative basis. Physiotherapists may initially assess your suitability
to participate in various exercise programs and give recommendations or
precautions when exercising. Individualised programs, such as home and
gym programs, or participation in group exercise classes can then form part
of the overall self-management routine. The advice and guidelines given by
physiotherapists can enable people with MS to manage their exercise regime
themselves. n
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Freecall: 1800 042 138
New Resource for Health Professionals
MS Australia recently launched MS Practice, a free, online educational series,
designed to support allied health professionals in the symptom management
of people with MS. The series discusses various symptoms associated with
MS and provides health professionals with evidence-based information
and clinical practice recommendations to enhance the quality of care and
outcomes for people with MS. To download a copy of the resource, visit
www.msaustralia.org.au
Call now and mention
this advertisement
“CAAS Promotion” to
receive $10 off your next
BrightSky order*
 1300 88 66 01
 1300 88 66 02
 [email protected]
www.brightsky.com.au
Community Teams
Physiotherapy is just one of the health services provided by MS Australia
- ACT/NSW/VIC. Physiotherapists work alongside the following MS health
professionals in our community teams:
l
l
l
l
Clinical Psychologists
Community Health Nurses
Community Support Workers
Exercise Therapists
l Neuropsychologists
l Occupational Therapists
l Social Workers
If you would like more information on any of these services, please contact
MS Connect on 1800 042 138.
summer 2009
35
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*Minimum order value $150 (ex GST). Offer valid for
customers until 30/06/2010. Offer can be redeemed only
once per customer. Offer is for the purchase of product
through BrightSky Australia only and cannot be exchanged for
cash. Cannot be used in conjunction with any other offer.
See our full terms of trade at www.brightsky.com.au
www.mssociety.org.au
Disclaimer: Multiple Sclerosis Limited does not endorse any one product over another, nor do we receive commissions on sale of items. Consumers are encouraged to consult with their health professionals on the most suitable product for their needs.
CAAS is changing
LIFESTYLE
2009
Go for Gold
Scholarships
The MS Australia –
ACT/NSW/VIC Go for Gold
Scholarships grow bigger and
better every year. In 2009,
the scholarships have been
able to help change the lives
of 51 people living with MS.
Erica Reeve was one of the first ever recipients of a Go for Gold Scholarship in the ACT. A former
triathlete, Erica will use her scholarship to buy a new racing bicycle to suit her MS needs.
The MS Australia – ACT/NSW/VIC Go
for Gold Scholarships are awarded to
people with MS across ACT, NSW and
Victoria who display a great need and
potential in various aspects of life,
including employment, sport, travel,
education and the arts.
Most of this year’s 51 scholarship
winners received a $3,000
scholarship and four winners
were thrilled to receive special
scholarships of $5,000 to fulfil
their dreams. For all recipients, the
scholarships have the potential
to significantly change their lives.
Agnes Tsetinis received a scholarship
towards her strength exercise
program in Victoria. “Without this I
could not have continued going to
the gym and helping myself to have
a better quality of life,” she says.
“Some of the money will also go
towards childcare at the gym. Thank
you again and please pass on my
gratitude to all involved.”
Whether it’s being able to attend
an exercise program, purchase
equipment, undertake a course, or
travel, the scholarships are awarded
to people with MS with a wide range
of goals and dreams.
Wholly sponsored by the
fundraising efforts of the 24-Hour
Mega Swim, this year’s scholarships
were presented at special luncheons
held in each state.
This was the first year the ACT took
part in the Go for Gold Scholarship
program. Sixty people attended
the inaugural ACT Go for Gold
Presentation held at the Vikings Club,
Erindale on 14 October.
Six people with MS were presented
with their scholarships, followed by
2010 Go for Gold Scholarships
With the Go for Gold Scholarship program growing each year, this is
your chance to reach your goals and dreams. Applications for the 2010
scholarships will be open in March 2010, so mark it in your calendars. For
more information on how to apply contact MS Connect on 1800 042 138
or visit the ‘Living with MS’ section on our website at www.mssociety.org.au
www.mssociety.org.au
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an afternoon tea and a presentation
featuring biographies of the winners,
as well as slides from the Mega
Swim that was held at the Australian
Institute of Sport in April 2009.
The Victorian Go for Gold
Scholarship presentation was held on
13 September at The Fitzroy Victoria
Bowling Club where 110 people,
including scholarship winners,
family and friends, sponsors and MS
Australia – ACT/NSW/VIC staff came
together to celebrate.
The luncheon was run by Carol
Cooke, the founder of the Mega Swim
program, and included a delicious
lunch catered for by the Bowling Club
and assisted by the Rotary Club of
Fitzroy.
CEO of MS Australia – ACT/
NSW/VIC Bill Younger opened the
proceedings, with MC Lex Ross
announcing the inspiring stories
behind each scholarship recipient.
Following a DVD presentation of the
Mega Swim, Carol Cooke presented
the Victorian Bovis Lend Lease group
(and major sponsor) with an inaugural
cup for highest fundraising team.
Scholarship recipient and MS
Australia Ambassador Mark Fisher
completed the day with a thank you
summer 2009
Congratulations to
This Year’s Winners
The Arts
Helen Dyer, ACT
John Paul Dzirba, ACT
Jayne Wilson, NSW
Christopher Scollen, NSW
Lynne Smith, NSW
Iva Marsden, NSW
Caroline Larcombe, NSW
Gary Norton, NSW
JulieAnne Hayes, NSW
Elizabeth Kilian, NSW
Nektaria Kalpakidis, VIC
James Pevitt, VIC
Education
Kati Reeves, ACT
Michaelie Castles, ACT
Katrin Rochford, NSW
Kandiah Seevaratnam, NSW
Sonja Collett, NSW
Marina Kostis, NSW
Janette Windsor, VIC
Kaylene Carney, VIC
Elaine Howard, VIC
Elizabeth Jones, VIC
Randa Magdi, NSW
Travel
Mia Lyons, ACT
Kerry Brooks, NSW
Kelly Ryan, NSW
Ruth Hamilton, NSW
Kathryn Anne Nielsen, NSW
Karen Vernon, NSW
Sally Tugwell, NSW
Sonia Zyntek, VIC
Susan Heeps, VIC
Nasif Karadeniz, VIC
Adam Stevenson, VIC
Julie Whitehead, VIC
Mark Fisher, VIC
Anna Dalessandro, VIC
Fred Stone, VIC
Amanda Warmuth, VIC
Employment
Fiona Gye, NSW
Janet Campbell, VIC
Brooke Tweedly, VIC
Sport
Erica Reeve, ACT
Carolyn Nelson, NSW
Bianca Christie, VIC
Roberto Mignano, VIC
Catherine Walton, VIC
Anonymous, VIC
Maximising Your Strength
George Boyens, VIC, $1,000
Elva Hocking, VIC, $1,000
Agnes Tsetinis, VIC, $1,000
summer 2009
LIFESTYLE
speech on behalf of all scholarship
recipients.
A similar celebration was held
for the 2009 NSW Go for Gold
Scholarships with a luncheon held
on Sunday 11 October at Bankstown
Sports Club. One hundred people
joined in to congratulate the 19
scholarship recipients, including their
families and friends, volunteers from
the Sydney Rotary Club, Mega Swim
team leaders and staff from MS
Australia – ACT/NSW/VIC.
The function began with lunch
and an opportunity for everyone to
meet and form new friendships.
Each scholarship was presented
by a Mega Swim team leader, a
volunteer or staff member, as the
audience heard a short biography of
each recipient.
“This scholarship has changed
my life,” said one recipient, which
was a sentiment echoed throughout
the day. Another scholarship winner
announced, “I had almost lost
confidence in myself, but now feel
that I can achieve anything”.
A list of all the winners and their
profiles can be found on our website
at www.mssociety.org.au
Again, we would like to
congratulate all of this year’s
winners, and thank everyone who
helped make the 2009 Go for Gold
Scholarships such a success. n
Thank You Mega Swim!
MS Australia – ACT/ NSW/VIC
gratefully acknowledges the generous
full sponsorship of the Go for Gold
Scholarships by the 24-Hour Mega
Swim. This is the ninth year that the
Mega Swim has sponsored the Go for
Gold Scholarship program.
Carol Cooke, who was diagnosed
with MS in 1998 conceived the
24-Hour Mega Swim idea in 2001.
The Mega Swim is a fun team
event whereby each team must have
one swimmer in the water for the
entire 24 hours. It is up to the team
how they swim it.
Swimmers are then asked to
raise money through sponsorship.
This can be a one-off donation or by
sponsoring the swimmers based on
the number of laps they do.
The first ever event was held at the
City of Yarra’s Fitzroy Pool, where 10
teams raised more than $22,000.
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Due to continued support from a
wide range of MS supporters and the
success of the event itself, the Mega
Swim has continued to expand both
in size and fundraising capacity – in
2008 more than $165,000 was
raised by 28 teams.
The 24-Hour Mega Swim is fast
becoming a prominent event on the
national calendar of sporting and
community events with expansion
across Australia. For dates and
locations of upcoming Mega Swims,
visit www.megaswim.com
If you are interested in running a
24-Hour Mega Swim please contact
Carol Cooke by emailing her at
[email protected]
MS Australia – ACT/NSW/
VIC would like to thank all Mega
Swim organisers, swimmers and
supporters for your generosity and
support.
www.mssociety.org.au
LIFESTYLE
Tap in to Your Creativity
Disclaimer: Multiple Sclerosis Limited does not endorse any one product over another, nor do we receive commissions on sale of items. Consumers are encouraged to consult with their health professionals on the most suitable product for their needs.
The annual MS Australia – ACT/NSW/VIC Photography
and Creative Writing Competitions are still open to all you
budding photographers and writers.
Now with great prizes on offer, we’re also giving this year’s competitions a
theme – ‘Crossing Boundaries’. With so many ways to interpret this theme,
we’re eager to view your entries and reward the most captivating and creative.
Photo Finish
Enter this year’s Photography Competition for your chance
to win an ultra-zoom digital camera from Samsung valued
at more than $500!
The Samsung WB500 digital camera features a
10x optical zoom, a 24mm ultra-wide lens, is equipped
with 10.2 mega pixels, a 2.7-inch LCD screen for easy
editing, and records high definition film. Add this to your
arsenal of photographic tools to capture high quality
images anytime, anywhere.
Using the theme ‘Crossing Boundaries’, photographers
may enter one photograph into the following categories:
Portrait, Landscape, Travel and Action. Only hard copies
will be received and should be no smaller than 6” x 4”
and no larger than 12” x 18”.
The winners of each category will be featured in
Intouch and on our website, and the overall winner will
receive the grand prize from Samsung, valued at $529.
For more information on Samsung’s product range visit
www.samsung.com.au
Words of Wisdom
The winners of this year’s Creative Writing Competition will
score themselves a great prize pack from Borders Books.
Using the theme ‘Crossing Boundaries’, enter your
writing piece into one of the following categories: Poetry,
Historical or Social Research, Short Stories (fiction), or
Short Stories (non-fiction). Submissions must be no longer
than 1,000 words.
Prizes will be awarded to each category winner, and
the overall winner. The category prize pack, valued at
$100, includes a copy of two new-release books, Seasons
by Donna Hay and MasterClass by the judges and
contestants on MasterChef, plus your choice of one of
over 100 of Australia’s favourite Penguin classic novels.
The major prize, valued at $200, includes the same
great titles as the category pack, plus the winner’s choice
of 11 Penguin classic novels.
The entry chosen as the overall winner will be
published in Intouch, and the best three entries of each
category will be placed on our website.
Subscribe to Borders’ Shortlist email newsletter and
receive weekly updates and offers on the hottest books,
music and DVDs. Visit www.borders.com.au
The Photography and Creative Writing Competitions
are open to people with MS and have been extended
until 30 January 2010. Send your entries to Fern
Linden at MS Australia – ACT/NSW/VIC, PO Box
210, Lidcombe NSW 1825. For more information,
conditions of entry and submission requirements,
contact Fern on (02) 9646 0600 or email
[email protected]
www.mssociety.org.au
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summer 2009
WHAT’S NEW: MS-RELATED RESOURCES
Check out the latest resources, sourced by the MS Library.
Women, Work and
Autoimmune Disease:
Keep Working, Girlfriend
by Joffe, R. and Friedlander, J.,
Demos Publishing
This well-written and easy
to read book focuses
on the positive reasons
why women with an
autoimmune disease
should stay in the
workforce.
The authors identity the
factors that make working
particularly difficult for
women with autoimmune
diseases, and then offer
examples and advice on
how to do so.
The book covers a range
of topics including;
l why you should keep
working;
l disclosure and talking
about your chronic
illness;
l making adjustments in
the workplace;
l workplace challenges;
and
l career development.
Featuring personal
accounts from women
with a chronic illness, this
book would be of interest
to all women with MS, as
well as their families and
carers.
Mental Sharpening
Stones: Manage the
Cognitive Challenges
of Multiple Sclerosis
The Art of Symptom
Management – MS in
the 21st Century
by Gingold, J.,
Demos Publishing
MS Association of America
www.msassociation.org/
programs/videos/
This latest work from
Jeffrey Gingold aims to
assist in managing the
cognitive challenges of
MS. The book features
interviews with three
well-known Americans who
have MS – author and
journalist Richard Cohen,
talk-show host Montel
Williams, and Chief Justice
Mary Mullarkey – each
discussing the effect of
cognition challenges in
their daily lives.
Each chapter offers
hints and tips from a
different perspective,
including that of people
with MS, a neurologist, an
MS nurse, a psychologist
and an occupational
therapist. Each chapter
concludes with a list of
mental sharpening stones
and perspectives, as well
as further reading and
references.
This book is an ideal
resource for people with
MS, as well as their
families, carers and
friends.
The MS Association of
America website offers a
host of information about
MS, including a range of
on-demand videos.
The Art of Symptom
Management is a series
of six recorded doctorto-patient presentations
on key MS symptoms,
with accompanying slide
presentations. Running from
20 minutes to two hours,
topics covered include:
l depression, clinical
trials and stem cells;
l injection site reactions,
progressive MS, and
managing symptoms
that affect intimacy;
l fatigue, pain/trigeminal
neuralgia, gait
mechanics, spasticity,
bowel/bladder and
sexual function;
l new MS diagnosis
techniques, nystagmus,
and MS therapies;
l MS, your bladder and
sexual dysfunction; and
l understanding
stress and learning
stress management
techniques.
TheBrainMatters.org
American Academy of
Neurology Foundation
www.thebrainmatters.org
This website is aimed at
people with a neurological
disorder and their families.
It provides comprehensive
information about more
than 250 disorders,
including MS, outlining
the disorder, treatment,
prognosis, research
and a list of relevant
organisations with
links to their websites.
Links to the American
Academy of Neurology
patient guidelines and
press releases are also
included, along with useful
information about working
with your doctor, and a
description of the common
tests used in the diagnosis
of neurological disorders.
The website also
provides access to the
organisation’s magazine,
Neurology Now, which
focuses on advances in the
diagnosis and treatment of
neurologic diseases, expert
advice on wellness and
disease prevention, new
medications and therapies,
and strategies for coping
effectively with neurologic
disorders.
To borrow books or for assistance in accessing online resources, please contact the MS Library
on (03) 9845 2809 or [email protected]
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www.mssociety.org.au