MS Life Summer 2015

MSLIFE. SUMMER 2015

MS QUEENSLAND’S PREMIER MAGAZINE FOR PEOPLE LIVING WITH MS

grem’s ms journey:

Navigating the

health system with

Learning about love, honour, loyalty and respect

MS

Written by MS Clinic Nurse Kaye Hooper pg. 05

pg. 07

pg. 16

pg. 23

New regional Queensland offices

Annual Conference & AGM wrap up

MS Big Dinner Party is back

New ‘driving and MS’ resources

FROM THE EDITORS

MS Queensland’s

CHRISTMAS TRADING HOURS

Dear readers, We can’t believe Christmas is almost here again! As always, the year has gone so fast – during which we saw a massive record breaking year of fundraising, the introduction of online ‘MS Webinars’ and the development of the NeuroCare Network in Queensland – just to name a few! Last month we also hosted the third MS Queensland Conference and AGM which featured an exciting new panel discussion on ‘MS emerging treatments – hope versus risk’ – you can read more about the event on page 7.

This edition of MS Life features Grem Warrington on the cover who was diagnosed with MS in 2012 after suffering symptoms that date back to 2007. He knew “something wasn’t quite right” and in 2010 his MS symptoms had escalated. He started experiencing slurred speech, severe dizziness and dragging of his left leg. After spending months trying to self-diagnose his symptoms using ‘Dr Google’ Grem saw a neurologist for a solid diagnosis. Despite going through some trying times, he now has a positive attitude towards his MS and tries not to let MS run his life.

Other stories in this edition include a wrap up of our recent Conference and AGM, the announcement that Australia has joined other MS organisations from around the world in a global alliance to end progressive MS (page 4), tips to navigating the health system with MS (page 8), energy rebates for southeast Queenslanders (page 10) and new ‘Driving with MS’ resources (page 23).

MS LIFE – SUMMER 2015

2

As always, if you have any feedback about MS Life or have a story idea please get in touch by emailing us at mslife@msqld.org.au. Wishing you a Merry Christmas and Happy New Year.

The MS Queensland offices across the State will be closed over Christmas from midday Friday 19 December 2014 and will reopen on Monday 5 January 2015.

If you are having any issues or concerns with your MS during this period, please contact your local GP or closest hospital emergency department in the first instance. Our Psychologist Aart Simons will also be available for any urgent client support during this time.

Want an MS question answered?

If you have an MS-related question to ask Tim, our Manager of Specialist Education, please email Tim at mslife@msqld.org.au

If you’d like to stay in touch with MS Queensland’s activities, events and physiotherapy programs please visit our: www.facebook.com/msqld

youtube.com/user/MSAustraliaQ

www.twitter.com/msqld

www.msqld.org.au

Melanie and Cassie Editors, MS Life

www.msqld.org.au To make a donation to MS Queensland or for more information on what we do please email mslife@msqld.org.au or call 07 3840 0888 or visit www.msqld.org.au

CONTENTS SUMMER 2015

What an amazing 12 months it has been! Looking back, everyone at MS Queensland has been busy helping people living with MS to get the best out of life; to advocate for change; and to search for a cure. Highlights from the year include: • celebrating 56 years of service to the MS community; • supporting 2,140 people living with MS; • expanding MS InfoLine to deliver 2,080 hours of support; • delivering 9,449 physio and exercise therapy sessions; • conducting 37 MS workshops and information sessions and launching MS webinars; • announcing two exciting housing projects; • making 5 written advocacy submissions to government; • contributing $339,000 to MS research; and • breaking fundraising records with our MS Brissie to the Bay and MS Moonlight Walk.

The end of 2014 also signals that Queensland is one year closer to the start of the NDIS. If you don’t know what the NDIS could mean for you, I encourage you visit our website www.msqld.org.au/ndis Looking ahead, we’ll be working hard to deliver more housing solutions including trialing a new in-home support service and supporting the start of a Brisbane MS clinical trial that could potentially achieve ground breaking results for people living with progressive MS. Whatever 2015 brings be assured that the entire MS Queensland team is here, above everything else, to give you real hope – no matter what.

Best wishes,

Lincoln, CEO

COVER STORY PG 14 S ing with M rington, liv Grem War

Grem’s MS journey: learning about love, honour, loyalty and respect

PAGE 2–3 From the Editors From the CEO Australia joins global alliance to fight PAGE 4–5 progressive MS New MS Queensland offices Become a member Latest Annual Report now available PAGE 6–7 Annual Conference and AGM wrap up PAGE 8–9

Navigating the health system

MS affordable housing projects on track PAGE 10–11 Energy rebates More physio and exercise options coming to regions PAGE 12–13 MS fundraisers in the community Who is your local politician?

91 years young – Ron Grove’s MS journey PAGE 14–15 Grem’s MS journey PAGE 16–17 Events that help people living with MS PAGE 18–19 Building partnerships Mindfulness for MS Health and MS – Ron Vella New national MS advocate leads annual conference Client in focus PAGE 20–21 MS Support Group forum How Sian lives positively with MS Making waves in the Redlands Driving and MS: questions with Tim PAGE 22–23 MS Resources MS Support Groups update PAGE 24 2015 Calendar of events

Acknowledgement: We wish to thank Grem Warrington for the use of his image on the cover of this publication. Photo courtesy of Jason Henry, ‘Welcome to the Fold’ Photography.

MS LIFE – SUMMER 2015

FROMthe CEO

3

australia joins

GLOBAL

alliance to fight progressive ms MS Research Australia has joined other MS organisations from the USA, UK, Italy, Denmark, Spain and Canada in a global alliance to end progressive MS, making Australia the first alliance member in the southern hemisphere.

The International Progressive MS Alliance, coordinated by the MS International Federation, is the most ambitious collaborative project the global MS movement has ever embarked upon, with MS Research Australia pledging $1.1 million over the next three years.

Dr Matthew Miles, CEO of MS Research Australia said that “working in isolation on an issue such as progressive MS risks duplicating our efforts. By enabling global collaboration, the Alliance is dedicated to fast-tracking the type of discoveries that can truly change people’s lives.”

While ten approved disease-modifying therapy options exist for people with relapsing-remitting MS in Australia, people with progressive forms of MS have very limited treatment options and much less is known about this form of the condition.

To invest in further research, the Alliance has announced the first round of 22 research grants to investigators in nine countries. Australian MS researcher Dr Steven Petratos from Monash University has received funding to continue exploring methods to prevent the degeneration of myelin and nerve fibres in MS. This is an important area of research which should lead

nd G o!

PACK it up A and go!

MS LIFE – SUMMER 2015

4

Portable people movers for travellers who need transport when they reach their destination. By car or train, boat or plane; fold them up and you’re ready to go.

Literider PC • Entry level, lightweight powerchair • 5 easy to unclip sections • Compact and simple to use • Suitable for indoor or outdoor

to discoveries that could prevent MS progression and deterioration.

MS Research Australia joins the Alliance as a managing member, with a key role in the Executive Committee and contributing technical advice and expertise, and will also continue to fund the best progressive MS research here in Australia as has been the case over the last decade.

For more information please visit www.msra.org.au

The luggie • America’s top selling portable scooter • Folds up in seconds • Li-ion battery pack • Carries up to 140kg

VISIT scootersaus.com.au or CALL 1300 622 633

New OFFICES MS Queensland

Introducing our new Gold Coast and Central Queensland offices.

We know that our staff need to be ‘on the ground’ in local communities in order to fully understand the local MS issues and build the critical networks and partnerships with health and community service providers to best support your needs.

So in August we opened a new Logan and Gold Coast office based at Varsity Lakes and run by our RSC Sharyn Shields, and in October we opened a new Central Queensland office, run by our new RSC Lynette Ellison based in Rockhampton.

These two offices will bring a more personalised service to more than 550 people living with MS in their local areas.

The offices are already becoming a hub of activity for: • meetings of local MS support groups; • a place of belonging for our staff and clients; and • a venue to host information and educational sessions for people living with MS and other neurological conditions.

Did you know we receive little government funding for this particular service?

contributions of our wonderful fundraisers have made this happen – by both holding community based events and participating in our MS Big Dinner Party, MS Brissie to the Bay bike ride and the regional MS Swimathons (just to name a few).

To use our local RSC service you must be a registered client with MS Queensland. To enquire about our RSC service please contact our InfoLine on 1800 177 591 or email info@msqld.org.au

State and local government representatives with MS Queensland staff at the Gold Coast office opening.

LIFE

Autumn Edition 2009

LIFE

Queensland

MSLIFE. MS Life AUTUMN 2012

QUEENSLAND

QUEENSLAND’S PREMIER

Giving life back

MS

Volume 3 Spring Edition, September 2008

for brissie to the bay

LIVING WITH MS

LIFE

11 12

Autumn Edition 2009

LIFE

Queensland

MS Australia – QLD

Winter 2011

IN THIS ISSUE...

Services to

support you

CEO’s Message Catherine’s Story Our New Website Life at Annerley Update Feature Articles MS Readathon 30th Birthday Fatigue Research MS Services

& taking control

2 3 3 4 6 8 9 10

QUEENSLAND’S PREMIER

MS

let MS hold her back EMPLOYMENT AND

pg. 8

pg. 12

Working with MS Workshops

MS

MS AWARENESS WEEK

See how Queensland took part in World MS Day celebrations this year

pg. 15

One man’s struggle Living Positively against the odds with MS

LIFE

MS AND SES

Read about the lip smacking campaign that had everyone talking about MS

for brissie to the bay

Multiple Sclerosis Society of Queensland 286 Gladstone Road Dutton Park QLD 4102 Locked Bag 370 Coorparoo DC QLD 4151

11 12

IN THIS ISSUE...

Services to

support you

CEO’s Message Catherine’s Story Our New Website Life at Annerley Update Feature Articles MS Readathon 30th Birthday Fatigue Research MS Services

& taking control

2 3 3 4 6 8 9 10

Lisa & Sandy tell...

Winter 2011

How a young mum won’t

MS Life

QUEENSLAND

pg. 8

BRISSIE TO THE BAY

Find out how you can take

The official launch

Bruce Milligan

LIFE

MS Life

QUEENSLAND

Spring 2010

TREVOR FARRELL: GIVING LIFE BACK

Meet one of the most inspiring people living with MS in Queensland, Mayor of Ipswich Paul Pisasale

A YEAR OF EMPLOYMENT AND MS

MS Life

QUEENSLAND

Giving life back

Kate finds her dream job CCSVI DEBATE Why MS organisations are proceeding with caution on new treatments

STORY

FOR THE CAUSE

A new framework to expand and strengthen the MS support group network

Multiple Sclerosis Society

of Queensland

286 Gladstone Road Dutton Park QLD 4102 Locked Bag 370 Coorparoo DC QLD 4151 ABN 56 731 473 412

Find out how you can take

MS AWARENESS WEEK

MS AND SES

Read about the lip smacking campaign that had everyone talking about MS

MS Australia – QLD

VIRAL MS CAMPAIGN

PwMS Josie Montano helps during Queensland’s floods and cyclones

Learn what Mayor of Ipswich Paul Pisasale feels about employment and MS

LIFE Queensland

“MS has been very challenging. Not one to

who are worse off. I love do my life things by halves, I will set and I look forward to everything off hiking the snowfields in that life offers.

NZ, snorkelling with sharks I look at MS as a rewarding and turtles in Port Douglas, challenge and not a disability. and cruising the Coast on a is an acceptance of whatever It Harley…as a passenger. cards are dealt to you in this Then without announcement, life. It is your choice on how you I can be back as the resident are going to manage that hand. celebrity in hospital learning I guess I look at life through to walk again. different eyes these days and tend to live in the moment.

I have managed this condition through positive Just before Sophia’s fifth birthday thinking, meditation, pilates, (she is 10 now), my Mum Sharon and Sophia Ball asked with swimming, diet and an her what her three birthday their puppy Millie amazing amount of love wishes were. She stated and that friendship. I had been totally she “would LOVE a violin, drug free for 7 years a opting for natural therapies. poodle puppy…but most of all Grandma I would However after much resistance, in 2001, I went love a cure for MS and that Mummy’s legs would on injection treatment which can lessen the severity work properly again”.

She received the violin of relapse. and recently Millie the poochon puppy, and is still waiting for the gift of a cure.

I am 41 now, lived with MS for and I am aware of the realitiesover 12 years of this condition, understanding that the time may come when it could worsen. Maybe through diligent management, it won’t. I am praying that it won’t.

When life hands you a bag of lemons – you simply go make lemonade!”

part

26 May - 4 June

Life at Annerley The official launch

I was totally needle phobic and now I inject myself daily: I am up to about 2000 injections so far! I have learnt to walk from scratch about 16 times and have been blind twice.

McKINNON HOUSE A new era of respite care in an idyllic setting on the Gold Coast

MS has been a gift to me as it has given me a sense of urgency about life, encouraging me not to procrastinate about what I would like to do one day.

I definitely do not want pity…there are many people

Jonathan Loraine and

Bruce Milligan

B_l_d] M_j^ CI 3P]PUN >P[O 4:

Summer Edition 2009

MS Australia – QLD

LIFE

MS Life

QUEENSLAND

Spring 2010

MS Australia – QLD

Questions about MS?

We’ve got the answers you’re looking for

Life at Annerley....

COMPLETED!

MS gene discovery BREAKTHROUGH MS RESEARCH

Phone: 07 3840 0888 Fax: 07 3840 0813 Email: mssociety@msqld.org.au www.msaustralia.org.au/qld

ORAL TREATMENT JOINS PBS

Scientists have identified the major common genetic variants that contribute to the cause of MS

Gilenya is the first oral treatment for relapsing remitting MS to become available on the PBS ®

TREVOR FARRELL: GIVING LIFE BACK

Giving back independence

Meet one of the most inspiring people living with MS in Queensland, Mayor of Ipswich Paul Pisasale

MS Life

QUEENSLAND

Giving life back

Kate finds her dream job CCSVI DEBATE

BOB AND KAREN’S LOVE

Winter Edition 2009

A YEAR OF EMPLOYMENT AND MS

and dignity

MS brought

us together!

Q&A WITH MAYOR PAUL PISASALE

We celebrate the end of an era as Executive Director Trevor Farrell prepares to retire after nearly 30 years

LIFE

MS Australia – QLD

Winter 2010

WHAT A YEAR IT HAS BEEN FOR MS WORLDWIDE

MS

See how Queensland took part in World MS Day celebrations this year

BH 6jhigVa^V XZaZWgViZh *% nZVgh d[ ZmXZei^dcVa hZgk^XZ id i]Z cVi^dc ^c '%%+

Beea_d] 7j B_\[ J^hek]^ :_\\[h[dj ;o[i >c &..(! a^[Z lVh \ddY# H]Vgdc 7Vaa! i]Zc '-! ]VY _jhi gZijgcZY [gdb ]Zg lZYY^c\ VcY ]dcZnbddc ^c i]Z <gZZ` >haVcYh VcY lVh ldg`^c\ Vh FjZZchaVcY BVcV\Zg [dg V gZXgj^ibZci XdchjaiVcXn# I]Zc Bjai^eaZ HXaZgdh^h higjX`# L^i]^c bdci]h d[ ]Zg [V^gniVaZ lZYY^c\! H]Vgdc lVh an^c\ ^c ]dhe^iVa jcVWaZ id bdkZ [gdb i]Z cZX` Ydlc#

>c i]Z nZVgh h^cXZ! H]Vgdc ]Vh ZcYjgZY cjbZgdjh hZg^djh BH ViiVX`h! Wji h]ZÉh cdi VWdji id aZi ]Zg BH \Zi ^c i]Z lVn d[ a^k^c\ a^[Z id ^ih [jaaZhi# =Zg edh^i^kZ djiadd` ]Vh ^che^gZY ]Zg YVj\]iZg Hde]^V! V NZVg * hijYZci Vi 6h]\gdkZ HiViZ HX]dda! id ZcXdjgV\Z ]Zg [Zaadl hijYZcih id eVgi^X^eViZ ^c i]Z BH GZVYVi]dc VcY ]Zae gV^hZ [jcYh id hjeedgi gZhZVgX] ^cid V XjgZ [dg Bjai^eaZ HXaZgdh^h#

Hde]^V ^h dcZ d[ FjZZchaVcYÉh ]^\]Zhi BH GZVYVi]dc [jcYgV^hZgh# I]^h nZVg! h]Z VcY ]Zg bdi]Zg \VkZ V heZX^Va egZhZciVi^dc id i]Z hX]dda VhhZbWan id ZcXdjgV\Z di]Zgh id _d^c ^c i]Z fjZhi id ÈgZVY [dg V gZVhdcÉ#

BRISSIE TO THE BAY Brisbane’s biggest charity ride celebrates 20 years and its biggest ever event

Giving life back

LIFE AT ANNERLEY...

MS SOCIETY OF QLD PURCHASES PARTIALLY COMPLETED TOWN HOUSES AS PART OF LIFE OPTIONS

PwMSQ

Meet the Queenslanders supporting MS research and regional services

MS Life

MS Australia – QLD

Summer 2011

GIVING LIFE BACK The ambitious program to provide integrated and dignified care

KdajbZ (! 6j\jhi '%%+

>c i]^h ZmXZgei [gdb ]Zg heZZX] id i]Z eg^bVgn hX]dda hijYZcih! H]Vgdc ZmeaV^ch l]Vi ^iÉh a^`Z id a^kZ l^i] BH Ä VcY ]dl BH ]Vh ^che^gZY ]Zg id a^kZ a^[Z id i]Z [jaa#

GET PHYSICAL The link between exercise and quality of life for people with MS

Spring 2011

Summer edition 2009

CEO’s Desk 2 Life Options 3 Ian’s Story 4 In Memory of John 5 Reading for the Family 6 Storming Parliament 8 Events 9 Research Breakthrough 10 MS Book Reviews 12

and dignity

BOB AND KAREN’S LOVE

pg. 15

Activities happening all around the world!

26 MAY 2010

MS Awareness Week

Australian of the Year WORLD MS DAY

MS Life

QUEENSLAND

Life at Annerley....

COMPLETED!

Giving back independence

MS brought

us together!

Q&A WITH MAYOR PAUL PISASALE

We celebrate the end of an era as Executive Director Trevor Farrell prepares to retire after nearly 30 years

How you can help the global campaign on employment and MS

LIFE

MS Australia – QLD

Questions about MS?

We’ve got the answers you’re looking for

®

LIFE

Autumn 2010

Giving life back

26 MAY 2010

worldMSday

MS CLINIC CONVERSATIONS

Ambassador, National Panel Horse Judge and person with MS

B_l_d] M_j^ CI 3P]PUN >P[O 4:

Summer Edition 2009

Giving life back

In depth answers to the most frequently asked MS questions

Jenni

MS has been a gift to me as it has given me a sense of urgency about life, encouraging me not to procrastinate about what I would like to do one day.

I definitely do not want pity…there are many people

Jonathan Loraine and

MS Australia – QLD

JOIN THE GLOBAL MOVEMENT!

2nd Annual MS National Advocates Conference

Storming Parliament House for MS

I was totally needle phobic and now I inject myself daily: I am up to about 2000 injections so far! I have learnt to walk from scratch about 16 times and have been blind twice.

A new era of respite care in an idyllic setting on the Gold Coast

MS gene discovery ORAL TREATMENT JOINS PBS Gilenya is the first oral treatment for relapsing remitting MS to become available on the PBS

Winter Edition 2009

It’s true. These two new offices mark a $600,000 investment from MS Queensland over the next three years into regional Membership with us, which is just $33 a year, helps us to Queensland. provide more information and education about MS and leading MS And it’s the research. To become a member or renew your membership for the generous 2014–15 financial year please contact us at mssociety@msqld.org.au or

part

26 May - 4 June

Life at Annerley

McKINNON HOUSE

Brisbane’s biggest charity ride celebrates 20 years and its biggest ever event

Spring 2011

BREAKTHROUGH MS RESEARCH Scientists have identified the major common genetic variants that contribute to the cause of MS

One man’s struggle Living Positively against the odds with MS

LIFE

QUEENSLAND

worldMSday

“MS has been very challenging. Not one to

who are worse off. I love do my life things by halves, I will set and I look forward to everything off hiking the snowfields in that life offers.

NZ, snorkelling with sharks I look at MS as a rewarding and turtles in Port Douglas, challenge and not a disability. and cruising the Coast on a is an acceptance of whatever It Harley…as a passenger. cards are dealt to you in this Then without announcement, life. It is your choice on how you I can be back as the resident are going to manage that hand. celebrity in hospital learning I guess I look at life through to walk again. different eyes these days and tend to live in the moment.

I have managed this condition through positive Just before Sophia’s fifth birthday thinking, meditation, pilates, (she is 10 now), my Mum Sharon and Sophia Ball asked with swimming, diet and an her what her three birthday their puppy Millie amazing amount of love wishes were. She stated and that friendship. I had been totally she “would LOVE a violin, drug free for 7 years a opting for natural therapies. poodle puppy…but most of all Grandma I would However after much resistance, in 2001, I went love a cure for MS and that Mummy’s legs would on injection treatment which can lessen the severity work properly again”.

She received the violin of relapse. and recently Millie the poochon puppy, and is still waiting for the gift of a cure.

I am 41 now, lived with MS for and I am aware of the realitiesover 12 years of this condition, understanding that the time may come when it could worsen. Maybe through diligent management, it won’t. I am praying that it won’t.

When life hands you a bag of lemons – you simply go make lemonade!”

Activities happening all around the world!

26 MAY 2010

GET PHYSICAL The link between exercise and quality of life for people with MS

MS Life

Summer edition 2009

CEO’s Desk 2 Life Options 3 Ian’s Story 4 In Memory of John 5 Reading for the Family 6 Storming Parliament 8 Events 9 Research Breakthrough 10 MS Book Reviews 12

Phone: 07 3840 0888 Fax: 07 3840 0813 Email: mssociety@msqld.org.au www.msaustralia.org.au/qld

pg. 12

Working with MS Workshops

MS Australia – QLD

Autumn 2011

Giving life back

let MS hold her back EMPLOYMENT AND

pg. 8

Nominate your MS Hero

LIFE

Hde]^V ^h dcZ d[ FjZZchaVcYÉh ]^\]Zhi BH GZVYVi]dc [jcYgV^hZgh# I]^h nZVg! h]Z VcY ]Zg bdi]Zg \VkZ V heZX^Va egZhZciVi^dc id i]Z hX]dda VhhZbWan id ZcXdjgV\Z di]Zgh id _d^c ^c i]Z fjZhi id ÈgZVY [dg V gZVhdcÉ#

>c i]^h ZmXZgei [gdb ]Zg heZZX] id i]Z eg^bVgn hX]dda hijYZcih! H]Vgdc ZmeaV^ch l]Vi ^iÉh a^`Z id a^kZ l^i] BH Ä VcY ]dl BH ]Vh ^che^gZY ]Zg id a^kZ a^[Z id i]Z [jaa#

worldMSday

MS Awareness Week

Australian of the Year WORLD MS DAY How you can help the global campaign on employment and MS

LIFE

QUEENSLAND

of Queensland

Employment Power

LOUISA ON A MISSION

“We Have MS, But It Doesn’t Have Us!”

ABN 56 731 473 412 Phone: 07 3840 0888 Fax: 07 3840 0813 Email: mssociety@msqld.org.au www.msaustralia.org.au/qld

Spring Edition 2009

BH 6jhigVa^V XZaZWgViZh *% nZVgh d[ ZmXZei^dcVa hZgk^XZ id i]Z cVi^dc ^c '%%+

Beea_d] 7j B_\[ J^hek]^ :_\\[h[dj ;o[i >c &..(! a^[Z lVh \ddY# H]Vgdc 7Vaa! i]Zc '-! ]VY _jhi gZijgcZY [gdb ]Zg lZYY^c\ VcY ]dcZnbddc ^c i]Z <gZZ` >haVcYh VcY lVh ldg`^c\ Vh FjZZchaVcY BVcV\Zg [dg V gZXgj^ibZci XdchjaiVcXn# I]Zc Bjai^eaZ HXaZgdh^h higjX`# L^i]^c bdci]h d[ ]Zg [V^gniVaZ lZYY^c\! H]Vgdc lVh an^c\ ^c ]dhe^iVa jcVWaZ id bdkZ [gdb i]Z cZX` Ydlc#

>c i]Z nZVgh h^cXZ! H]Vgdc ]Vh ZcYjgZY cjbZgdjh hZg^djh BH ViiVX`h! Wji h]ZÉh cdi VWdji id aZi ]Zg BH \Zi ^c i]Z lVn d[ a^k^c\ a^[Z id ^ih [jaaZhi# =Zg edh^i^kZ djiadd` ]Vh ^che^gZY ]Zg YVj\]iZg Hde]^V! V NZVg * hijYZci Vi 6h]\gdkZ HiViZ HX]dda! id ZcXdjgV\Z ]Zg [Zaadl hijYZcih id eVgi^X^eViZ ^c i]Z BH GZVYVi]dc VcY ]Zae gV^hZ [jcYh id hjeedgi gZhZVgX] ^cid V XjgZ [dg Bjai^eaZ HXaZgdh^h#

26 MAY 2010

JOIN THE GLOBAL MOVEMENT!

MS CLINIC CONVERSATIONS

In depth answers to the most frequently asked MS questions

Ambassador, National Panel Horse Judge and person with MS

Multiple Sclerosis Society

286 Gladstone Road Dutton Park QLD 4102 Locked Bag 370 Coorparoo DC QLD 4151 ABN 56 731 473 412

LIVING WITH MS

How you can help spread the word about MS this May

2 3 4 5 6

8 9 10

Ambassadors Needed Notice of AGM

3800 CYCLIST PEDAL FOR A CURE!

Learn what Mayor of Ipswich Paul Pisasale feels about employment and MS

KdajbZ (! 6j\jhi '%%+

worldMSday Giving life back

7

Events An 11 year old’s idea...

MS Readathon

New Record

VIRAL MS CAMPAIGN

PwMS Josie Montano helps during Queensland’s floods and cyclones

LIFE Queensland

Autumn 2010

QUEENSLAND

MAGAZINE FOR PEOPLE

AWARENESS MONTH THIS MAY

THIS ISSUE CEO’s Desk Brissie to the Bay Introducing Facebook Portrait of Posterity Work of Aart

How a young mum won’t pg. 8

Nominate your MS Hero

MS Australia – QLD

Autumn 2011

Giving life back

Employment Power

LOUISA ON A MISSION

“We Have MS, But It Doesn’t Have Us!”

MS Life

QUEENSLAND

AUTUMN 2012

Giving life back

Volume 3 Spring Edition, September 2008

Lynette Walks Again

Lisa & Sandy tell...

ABN 56 731 473 412 Phone: 07 3840 0888 Fax: 07 3840 0813 Email: mssociety@msqld.org.au www.msaustralia.org.au/qld

LIFE

MSLIFE. MS Life

QUEENSLAND

How you can help spread the word about MS this May

2 3 4 5 6 7 8 9 10

Ambassadors Needed Notice of AGM

3800 CYCLIST PEDAL FOR A CURE!

NOT A MEMBER?

MAGAZINE FOR PEOPLE

AWARENESS MONTH THIS MAY

THIS ISSUE CEO’s Desk Brissie to the Bay Introducing Facebook Portrait of Posterity Work of Aart Lynette Walks Again Events An 11 year old’s idea...

MS Readathon

New Record Multiple Sclerosis Society of Queensland 286 Gladstone Road Dutton Park QLD 4102 Locked Bag 370 Coorparoo DC QLD 4151

Spring Edition 2009

2nd Annual MS National Advocates Conference

Storming Parliament House for MS

Jenni

LIFE AT ANNERLEY...

MS SOCIETY OF QLD PURCHASES PARTIALLY COMPLETED TOWN HOUSES AS PART OF LIFE OPTIONS

Why MS organisations are proceeding with caution on new treatments

STORY

FOR THE CAUSE

PwMSQ

Meet the Queenslanders supporting MS research and regional services

MS Life

MS Australia – QLD

Summer 2011

GIVING LIFE BACK The ambitious program to provide integrated and dignified care

Winter 2010

A new framework to expand and strengthen the MS support group network

MS Australia – QLD

WHAT A YEAR IT HAS BEEN FOR MS WORLDWIDE

Vitamin D

The First Official

World MS Day

are you getting enough?

Our New MS Ambassadors LEIZA’S STORYp.3

MCKINNON HOUSE FOR RESPITE p.6

Lisa’s story of motherhood and MS

Educate, Motivate & Advocate

OUR PATRON

PREPARING FOR THE SUMMER HEAT p.7

Her Excellency Ms Penelope

LIFE

COMEBACK KID

Wensley AO

JOIN TODAY!

LET’S CRUISE Helen Emery takes on the high seas in style with husband Graham

A GLOBAL MOVEMENT

P3

How the world united with a common goal: to raise awareness of MS

QUEENSLAND’S PREMIER

MS

MAGAZINE FOR PEOPLE

COOLING REBATE

P5

State Government introduces a new electricity rebate for low-income Queenslanders with multiple sclerosis

FEATURE STORY

P10

Debbie Smart was diagnosed with MS, but it didn’t stop her from moving to Africa to help vulnerable children

LIVING WITH MS

Winter 2011

RESEARCH NEWS

11 12

IN THIS ISSUE...

Services to

support you

CEO’s Message Catherine’s Story Our New Website Life at Annerley Update Feature Articles MS Readathon 30th Birthday Fatigue Research MS Services

& taking control

2 3 3 4 6 8 9 10

MCKINNON HOUSE FOR RESPITE p.6

Autumn 2011

Lisa’s story of motherhood and MS COMEBACK KID

Wensley AO

let MS hold her back EMPLOYMENT AND

pg. 8

pg. 12

Working with MS Workshops

MS

MS AWARENESS WEEK

See how Queensland took part in World MS Day celebrations this year

pg. 15

One man’s struggle Living Positively against the odds with MS

LIFE

MS Australia – QLD

MS AND SES

Read about the lip smacking campaign that had everyone talking about MS

for brissie to the bay

Multiple Sclerosis Society of Queensland 286 Gladstone Road Dutton Park QLD 4102 Locked Bag 370 Coorparoo DC QLD 4151

11 12

worldMSday

GET PHYSICAL The link between exercise and quality of life for people with MS

BRISSIE TO THE BAY Brisbane’s biggest charity ride celebrates 20 years and its biggest ever event

MS Life Spring 2011

Find out how you can take

The official launch

I was totally needle phobic and now I inject myself daily: I am up to about 2000 injections so far! I have learnt to walk from scratch about 16 times and have been blind twice.

MS has been a gift to me as it has given me a sense of urgency about life, encouraging me not to procrastinate about what I would like to do one day.

I definitely do not want pity…there are many people

Jonathan Loraine and

LIFE

QUEENSLAND

of Queensland

Phone: 07 3840 0888 Fax: 07 3840 0813 Email: mssociety@msqld.org.au www.msaustralia.org.au/qld

Spring 2010

2 3 3 4 6 8 9 10

MAGAZINE FOR PEOPLE

ORAL TREATMENT JOINS PBS Gilenya is the first oral treatment for relapsing remitting MS to become available on the PBS ®

TREVOR FARRELL: GIVING LIFE BACK We celebrate the end of an era as Executive Director Trevor Farrell prepares to retire after nearly 30 years

Q&A WITH MAYOR PAUL PISASALE Meet one of the most inspiring people living with MS in Queensland, Mayor of Ipswich Paul Pisasale

MS Life Autumn 2011

Giving life back

LIFE

QUEENSLAND

MS Life Summer 2011

MS Australia – QLD

FOR THE CAUSE

PwMSQ

Meet the Queenslanders supporting MS research and regional services

MS Life Winter 2010

A new framework to expand and strengthen the MS support group network

MS AWARENESS WEEK

P5

FEATURE STORY

P10

Debbie Smart was diagnosed with MS, but it didn’t stop her from moving to Africa to help vulnerable children

MS AND SES

Read about the lip smacking campaign that had everyone talking about MS

RESEARCH NEWS

P15

MS Research Australia provides you with the latest updates on MS research

MS Australia – QLD

VIRAL MS CAMPAIGN

PwMS Josie Montano helps during Queensland’s floods and cyclones

Learn what Mayor of Ipswich Paul Pisasale feels about employment and MS

LIFE Queensland

KdajbZ (! 6j\jhi '%%+

BH 6jhigVa^V XZaZWgViZh *% nZVgh d[ ZmXZei^dcVa hZgk^XZ id i]Z cVi^dc ^c '%%+

Beea_d] 7j B_\[ J^hek]^ :_\\[h[dj ;o[i Giving life back

>c &..(! a^[Z lVh \ddY# H]Vgdc 7Vaa! i]Zc '-! ]VY _jhi gZijgcZY [gdb ]Zg lZYY^c\ VcY ]dcZnbddc ^c i]Z <gZZ` >haVcYh VcY lVh ldg`^c\ Vh FjZZchaVcY BVcV\Zg [dg V gZXgj^ibZci XdchjaiVcXn# I]Zc Bjai^eaZ HXaZgdh^h higjX`# L^i]^c bdci]h d[ ]Zg [V^gniVaZ lZYY^c\! H]Vgdc lVh an^c\ ^c ]dhe^iVa jcVWaZ id bdkZ [gdb i]Z cZX` Ydlc#

>c i]Z nZVgh h^cXZ! H]Vgdc ]Vh ZcYjgZY cjbZgdjh hZg^djh BH ViiVX`h! Wji h]ZÉh cdi VWdji id aZi ]Zg BH \Zi ^c i]Z lVn d[ a^k^c\ a^[Z id ^ih [jaaZhi# =Zg edh^i^kZ djiadd` ]Vh ^che^gZY ]Zg YVj\]iZg Hde]^V! V NZVg * hijYZci Vi 6h]\gdkZ HiViZ HX]dda! id ZcXdjgV\Z ]Zg [Zaadl hijYZcih id eVgi^X^eViZ ^c i]Z BH GZVYVi]dc VcY ]Zae gV^hZ [jcYh id hjeedgi gZhZVgX] ^cid V XjgZ [dg Bjai^eaZ HXaZgdh^h#

26 MAY 2010

Hde]^V ^h dcZ d[ FjZZchaVcYÉh ]^\]Zhi BH GZVYVi]dc [jcYgV^hZgh# I]^h nZVg! h]Z VcY ]Zg bdi]Zg \VkZ V heZX^Va egZhZciVi^dc id i]Z hX]dda VhhZbWan id ZcXdjgV\Z di]Zgh id _d^c ^c i]Z fjZhi id ÈgZVY [dg V gZVhdcÉ#

>c i]^h ZmXZgei [gdb ]Zg heZZX] id i]Z eg^bVgn hX]dda hijYZcih! H]Vgdc ZmeaV^ch l]Vi ^iÉh a^`Z id a^kZ l^i] BH Ä VcY ]dl BH ]Vh ^che^gZY ]Zg id a^kZ a^[Z id i]Z [jaa#

MS Awareness Week

Find out how you can take

of Queensland

Phone: 07 3840 0888 Fax: 07 3840 0813 Email: mssociety@msqld.org.au www.msaustralia.org.au/qld

The official launch

I was totally needle phobic and now I inject myself daily: I am up to about 2000 injections so far! I have learnt to walk from scratch about 16 times and have been blind twice.

MS has been a gift to me as it has given me a sense of urgency about life, encouraging me not to procrastinate about what I would like to do one day.

I definitely do not want pity…there are many people

Jonathan Loraine and

Bruce Milligan

B_l_d] M_j^ CI 3P]PUN >P[O 4:

Summer Edition 2009

MS Australia – QLD

LIFE

MS Life

QUEENSLAND

Spring 2010

MS Australia – QLD

Questions about MS?

We’ve got the answers you’re looking for

MS gene discovery BREAKTHROUGH MS RESEARCH Scientists have identified the major common genetic variants that contribute to the cause of MS

ORAL TREATMENT JOINS PBS Gilenya is the first oral treatment for relapsing remitting MS to become available on the PBS ®

TREVOR FARRELL: GIVING LIFE BACK We celebrate the end of an era as Executive Director Trevor Farrell prepares to retire after nearly 30 years

Q&A WITH MAYOR PAUL PISASALE Meet one of the most inspiring people living with MS in Queensland, Mayor of Ipswich Paul Pisasale

LIFE

Winter Edition 2009

MS Australia – QLD

A YEAR OF EMPLOYMENT AND MS

part

26 May - 4 June

Life at Annerley

McKINNON HOUSE A new era of respite care in an idyllic setting on the Gold Coast

Giving life back

LIFE AT ANNERLEY...

Multiple Sclerosis Society

“MS has been very challenging. Not one to

who are worse off. I love do my life things by halves, I will set and I look forward to everything off hiking the snowfields in that life offers.

NZ, snorkelling with sharks I look at MS as a rewarding and turtles in Port Douglas, challenge and not a disability. and cruising the Coast on a is an acceptance of whatever It Harley…as a passenger. cards are dealt to you in this Then without announcement, life. It is your choice on how you I can be back as the resident are going to manage that hand. celebrity in hospital learning I guess I look at life through to walk again. different eyes these days and tend to live in the moment.

I have managed this condition through positive Just before Sophia’s fifth birthday thinking, meditation, pilates, (she is 10 now), my Mum Sharon and Sophia Ball asked with swimming, diet and an her what her three birthday their puppy Millie amazing amount of love wishes were. She stated and that friendship. I had been totally she “would LOVE a violin, drug free for 7 years a opting for natural therapies. poodle puppy…but most of all Grandma I would However after much resistance, in 2001, I went love a cure for MS and that Mummy’s legs would on injection treatment which can lessen the severity work properly again”.

She received the violin of relapse. and recently Millie the poochon puppy, and is still waiting for the gift of a cure.

I am 41 now, lived with MS for and I am aware of the realitiesover 12 years of this condition, understanding that the time may come when it could worsen. Maybe through diligent management, it won’t. I am praying that it won’t.

When life hands you a bag of lemons – you simply go make lemonade!”

Activities happening all around the world!

26 MAY 2010

MS SOCIETY OF QLD PURCHASES PARTIALLY COMPLETED TOWN HOUSES AS PART OF LIFE OPTIONS 286 Gladstone Road Dutton Park QLD 4102 Locked Bag 370 Coorparoo DC QLD 4151 ABN 56 731 473 412

WHAT A YEAR IT HAS BEEN FOR MS WORLDWIDE

MS

See how Queensland took part in World MS Day celebrations this year

pg. 15

Autumn 2010

worldMSday worldMSday

BRISSIE TO THE BAY Brisbane’s biggest charity ride celebrates 20 years and its biggest ever event

Spring 2011

Summer edition 2009

GIVING LIFE BACK The ambitious program to provide integrated and dignified care

COOLING REBATE

State Government introduces a new electricity rebate for low-income Queenslanders with multiple sclerosis

Employment Power EMPLOYMENT AND

pg. 12

One man’s struggle Living Positively against the odds with MS

LIFE

QUEENSLAND

JOIN THE GLOBAL MOVEMENT!

GET PHYSICAL The link between exercise and quality of life for people with MS

MS Life

CEO’s Desk 2 Life Options 3 Ian’s Story 4 In Memory of John 5 Reading for the Family 6 Storming Parliament 8 Events 9 Research Breakthrough 10 MS Book Reviews 12

Kate finds her dream job CCSVI DEBATE Why MS organisations are proceeding with caution on new treatments

STORY

P3

let MS hold her back

pg. 8

Working with MS Workshops

MS Australia – QLD

Australian of the Year WORLD MS DAY How you can help the global campaign on employment and MS

LIFE

QUEENSLAND

and dignity

BOB AND KAREN’S LOVE

A GLOBAL MOVEMENT

Winter 2011

How a young mum won’t pg. 8

Nominate your MS Hero

Giving life back

MS CLINIC CONVERSATIONS

In depth answers to the most frequently asked MS questions

Ambassador, National Panel Horse Judge and person with MS

Life at Annerley....

COMPLETED!

Giving back independence

MS brought

us together!

Debbie strives despite MS

MOONLIGHT WALK Over 1300 people take a stroll through Brisbane to raise money for MS

LIVING WITH MS

LOUISA ON A MISSION

“We Have MS, But It Doesn’t Have Us!”

QUEENSLAND

2nd Annual MS National Advocates Conference

Storming Parliament House for MS

Jenni

MS Australia – QLD

We’ve got the answers you’re looking for

MS gene discovery BREAKTHROUGH MS RESEARCH Scientists have identified the major common genetic variants that contribute to the cause of MS

Winter Edition 2009

A YEAR OF EMPLOYMENT AND MS

B_l_d] M_j^ CI 3P]PUN >P[O 4:

MS Life

Questions about MS?

CEO’s Desk 2 Life Options 3 Ian’s Story 4 In Memory of John 5 Reading for the Family 6 Storming Parliament 8 Events 9 Research Breakthrough 10 MS Book Reviews 12

Multiple Sclerosis Society

Bruce Milligan

Summer Edition 2009

MS Australia – QLD

Giving life back

LIFE AT ANNERLEY...

286 Gladstone Road Dutton Park QLD 4102 Locked Bag 370 Coorparoo DC QLD 4151 ABN 56 731 473 412

part

26 May - 4 June

Life at Annerley

McKINNON HOUSE A new era of respite care in an idyllic setting on the Gold Coast

Summer edition 2009

MS SOCIETY OF QLD PURCHASES PARTIALLY COMPLETED TOWN HOUSES AS PART OF LIFE OPTIONS

“MS has been very challenging. Not one to

who are worse off. I love do my life things by halves, I will set and I look forward to everything off hiking the snowfields in that life offers.

NZ, snorkelling with sharks I look at MS as a rewarding and turtles in Port Douglas, challenge and not a disability. and cruising the Coast on a is an acceptance of whatever It Harley…as a passenger. cards are dealt to you in this Then without announcement, life. It is your choice on how you I can be back as the resident are going to manage that hand. celebrity in hospital learning I guess I look at life through to walk again. different eyes these days and tend to live in the moment.

I have managed this condition through positive Just before Sophia’s fifth birthday thinking, meditation, pilates, (she is 10 now), my Mum Sharon and Sophia Ball asked with swimming, diet and an her what her three birthday their puppy Millie amazing amount of love wishes were. She stated and that friendship. I had been totally she “would LOVE a violin, drug free for 7 years a opting for natural therapies. poodle puppy…but most of all Grandma I would However after much resistance, in 2001, I went love a cure for MS and that Mummy’s legs would on injection treatment which can lessen the severity work properly again”.

She received the violin of relapse. and recently Millie the poochon puppy, and is still waiting for the gift of a cure.

I am 41 now, lived with MS for and I am aware of the realitiesover 12 years of this condition, understanding that the time may come when it could worsen. Maybe through diligent management, it won’t. I am praying that it won’t.

When life hands you a bag of lemons – you simply go make lemonade!”

Activities happening all around the world!

26 MAY 2010

MS Awareness Week

Australian of the Year WORLD MS DAY How you can help the global campaign on employment and MS

LIFE

QUEENSLAND

LET’S CRUISE

How the world united with a common goal: to raise awareness of MS

QUEENSLAND’S PREMIER

CEO’s Message Catherine’s Story Our New Website Life at Annerley Update Feature Articles MS Readathon 30th Birthday Fatigue Research MS Services

Lisa & Sandy tell...

LIFE

Hde]^V ^h dcZ d[ FjZZchaVcYÉh ]^\]Zhi BH GZVYVi]dc [jcYgV^hZgh# I]^h nZVg! h]Z VcY ]Zg bdi]Zg \VkZ V heZX^Va egZhZciVi^dc id i]Z hX]dda VhhZbWan id ZcXdjgV\Z di]Zgh id _d^c ^c i]Z fjZhi id ÈgZVY [dg V gZVhdcÉ#

>c i]^h ZmXZgei [gdb ]Zg heZZX] id i]Z eg^bVgn hX]dda hijYZcih! H]Vgdc ZmeaV^ch l]Vi ^iÉh a^`Z id a^kZ l^i] BH Ä VcY ]dl BH ]Vh ^che^gZY ]Zg id a^kZ a^[Z id i]Z [jaa#

JOIN THE GLOBAL MOVEMENT!

MS CLINIC CONVERSATIONS

In depth answers to the most frequently asked MS questions

Ambassador, National Panel Horse Judge and person with MS

Helen Emery takes on the high seas in style with husband Graham

AUTUMN 2012

MS

IN THIS ISSUE...

Services to

support you

& taking control

ABN 56 731 473 412 Phone: 07 3840 0888 Fax: 07 3840 0813 Email: mssociety@msqld.org.au www.msaustralia.org.au/qld

Spring Edition 2009

BH 6jhigVa^V XZaZWgViZh *% nZVgh d[ ZmXZei^dcVa hZgk^XZ id i]Z cVi^dc ^c '%%+

Beea_d] 7j B_\[ J^hek]^ :_\\[h[dj ;o[i >c &..(! a^[Z lVh \ddY# H]Vgdc 7Vaa! i]Zc '-! ]VY _jhi gZijgcZY [gdb ]Zg lZYY^c\ VcY ]dcZnbddc ^c i]Z <gZZ` >haVcYh VcY lVh ldg`^c\ Vh FjZZchaVcY BVcV\Zg [dg V gZXgj^ibZci XdchjaiVcXn# I]Zc Bjai^eaZ HXaZgdh^h higjX`# L^i]^c bdci]h d[ ]Zg [V^gniVaZ lZYY^c\! H]Vgdc lVh an^c\ ^c ]dhe^iVa jcVWaZ id bdkZ [gdb i]Z cZX` Ydlc#

>c i]Z nZVgh h^cXZ! H]Vgdc ]Vh ZcYjgZY cjbZgdjh hZg^djh BH ViiVX`h! Wji h]ZÉh cdi VWdji id aZi ]Zg BH \Zi ^c i]Z lVn d[ a^k^c\ a^[Z id ^ih [jaaZhi# =Zg edh^i^kZ djiadd` ]Vh ^che^gZY ]Zg YVj\]iZg Hde]^V! V NZVg * hijYZci Vi 6h]\gdkZ HiViZ HX]dda! id ZcXdjgV\Z ]Zg [Zaadl hijYZcih id eVgi^X^eViZ ^c i]Z BH GZVYVi]dc VcY ]Zae gV^hZ [jcYh id hjeedgi gZhZVgX] ^cid V XjgZ [dg Bjai^eaZ HXaZgdh^h#

26 MAY 2010

A look at new oral treatments for MS that offer more options

MSLIFE. MS Life AWARENESS MONTH THIS MAY How you can help spread the word about MS this May

2 3 4

7 8 9 10

Ambassadors Needed Notice of AGM

3800 CYCLIST PEDAL FOR A CURE!

Learn what Mayor of Ipswich Paul Pisasale feels about employment and MS

KdajbZ (! 6j\jhi '%%+

worldMSday Giving life back

5 6

Events An 11 year old’s idea...

MS Readathon

New Record

VIRAL MS CAMPAIGN

PwMS Josie Montano helps during Queensland’s floods and cyclones

LIFE Queensland

Autumn 2010

QUEENSLAND

TABLET TALK

Geoff Huegill lends his support to MS, fresh from taking gold in Delhi

Autumn Edition 2009

LIFE

Giving life back

THIS ISSUE CEO’s Desk Brissie to the Bay Introducing Facebook Portrait of Posterity Work of Aart

MS Life

Educate, Motivate & Advocate

Her Excellency Ms Penelope

QUEENSLAND Volume 3 Spring Edition, September 2008

How a young mum won’t pg. 8

Nominate your MS Hero

Giving life back

Employment Power

LOUISA ON A MISSION

“We Have MS, But It Doesn’t Have Us!”

QUEENSLAND

OUR PATRON

PREPARING FOR THE SUMMER HEAT p.7

LIFE

Queensland

MS Australia – QLD

Lynette Walks Again

Lisa & Sandy tell...

ABN 56 731 473 412 Phone: 07 3840 0888 Fax: 07 3840 0813 Email: mssociety@msqld.org.au www.msaustralia.org.au/qld

LIFE

are you getting enough?

Our New MS Ambassadors LEIZA’S STORYp.3

P15

MS Research Australia provides you with the latest updates on MS research

AWARENESS MONTH THIS MAY How you can help spread the word about MS this May

2 3 4 5 6 7 8 9 10

Ambassadors Needed Notice of AGM

3800 CYCLIST PEDAL FOR A CURE!

Vitamin D

The First Official

World MS Day

Debbie strives despite MS

MOONLIGHT WALK Over 1300 people take a stroll through Brisbane to raise money for MS

AUTUMN 2012

Giving life back

THIS ISSUE CEO’s Desk Brissie to the Bay Introducing Facebook Portrait of Posterity Work of Aart Lynette Walks Again Events An 11 year old’s idea...

MS Readathon

A look at new oral treatments for MS that offer more options

MSLIFE. MS Life

QUEENSLAND Volume 3 Spring Edition, September 2008

for brissie to the bay

TABLET TALK

Geoff Huegill lends his support to MS, fresh from taking gold in Delhi

Autumn Edition 2009

LIFE

Queensland

New Record Multiple Sclerosis Society of Queensland 286 Gladstone Road Dutton Park QLD 4102 Locked Bag 370 Coorparoo DC QLD 4151

Spring Edition 2009

2nd Annual MS National Advocates Conference

Storming Parliament House for MS

Jenni

Giving life back

QUEENSLAND

Life at Annerley....

COMPLETED!

Giving back independence

and dignity

Kate finds her dream job

MS brought

us together!

BOB AND KAREN’S LOVE

MS Life Summer 2011

CCSVI DEBATE Why MS organisations are proceeding with caution on new treatments

STORY

MS Australia – QLD

GIVING LIFE BACK

FOR THE CAUSE

The ambitious program to provide integrated and dignified care

PwMSQ

Meet the Queenslanders supporting MS research and regional services

MS Life Winter 2010

A new framework to expand and strengthen the MS support group network

MS Australia – QLD

WHAT A YEAR IT HAS BEEN FOR MS WORLDWIDE

The First Official

World MS Day

Vitamin D

are you getting enough?

Our New MS Ambassadors LEIZA’S STORYp.3

MCKINNON HOUSE FOR RESPITE p.6

PREPARING FOR THE SUMMER HEAT p.7

OUR PATRON

Her Excellency Ms Penelope

Educate, Motivate & Advocate

Lisa’s story of motherhood and MS COMEBACK KID

Wensley AO

Geoff Huegill lends his support to MS, fresh from taking gold in Delhi

TABLET TALK A look at new oral treatments for MS that offer more options

LET’S CRUISE Helen Emery takes on the high seas in style with husband Graham

The First Official

World MS Day

Debbie strives despite MS

MOONLIGHT WALK Over 1300 people take a stroll through Brisbane to raise money for MS

A GLOBAL MOVEMENT How the world united with a common goal: to raise awareness of MS

MEMBERSHIP: JOIN US

P3

COOLING REBATE

P5

State Government introduces a new electricity rebate for low-income Queenslanders with multiple sclerosis

FEATURE STORY

P10

Debbie Smart was diagnosed with MS, but it didn’t stop her from moving to Africa to help vulnerable children

RESEARCH NEWS

P15

MS Research Australia provides you with the latest updates on MS research

Vitamin D

are you getting enough?

Our New MS Ambassadors LEIZA’S STORYp.3

MCKINNON HOUSE FOR RESPITE p.6

PREPARING FOR THE SUMMER HEAT p.7

OUR PATRON

Her Excellency Ms Penelope

Educate, Motivate & Advocate

Lisa’s story of motherhood and MS COMEBACK KID

Wensley AO

Geoff Huegill lends his support to MS, fresh from taking gold in Delhi

TABLET TALK A look at new oral treatments for MS that offer more options

LET’S CRUISE Helen Emery takes on the high seas in style with husband Graham

Debbie strives despite MS

MOONLIGHT WALK Over 1300 people take a stroll through Brisbane to raise money for MS

A GLOBAL MOVEMENT How the world united with a common goal: to raise awareness of MS

P3

COOLING REBATE

P5

State Government introduces a new electricity rebate for low-income Queenslanders with multiple sclerosis

FEATURE STORY

P10

Debbie Smart was diagnosed with MS, but it didn’t stop her from moving to Africa to help vulnerable children

RESEARCH NEWS

P15

MS Research Australia provides you with the latest updates on MS research

TODAY

Are you a member of the

HAVE YOUR SAY!

Help support MS Queensland and it’s good work!

call 07 3840 0888.

On behalf of all Queenslanders living with MS, we look forward to your help in creating a future free from MS and its devastating impact.

MS Queensland?

Membership with us, which is just assists us in providing information $33 a year, and education about MS and leading edge MS research to find a cure for multiple sclerosis.

This includes the information you receive through publications such as MS Life, MS Insight and our Online Resource Centre on our website.

We regularly receive very positive feedback about the information content of our flagship client-focused magazine, MS Life. We are committed to continuing to provide this valuable information resource to anyone who has an interest in MS and as such we do not restrict its circulation to MS Queensland members only. But this comes at a substantial cost and we need your support. It currently costs us $30,000 per year to produce and distribute MS Life and current membership subscriptions provide $12,000 per year – a significant shortfall each year.

So if you value the publications and services MS Queensland provides then please show your support by joining the Society today.

For a fee of just $33 you can join us for a year, or you might consider becoming a Life Member for just $330 to avoid worrying about paying your membership ever again! The strength of MS Queensland is in its active and committed members and we would welcome your contributio n to our vital work.

As a financial member you’ll also have the opportunity to have your say on the exciting future plans of MS Queensland at the Annual General Meeting (AGM) in November.

To become a member, simply complete the form overleaf and return it to MS Queenslan possible. On behalf of all Queenslan d as soon as ders living with MS, we look forward to your membership support for a world free from MS and its devastating impact.

Lincoln Hopper, CEO

MS1192_MembershipD

LJul13_Art01_sd.indd

1

7/07/13 3:39 PM

MS LIFE – SUMMER 2015

In recent months we’ve had two major additions to our Regional Service Coordinator (RSC) service and opened not one, but two, new offices in Queensland.

5

Latest Annual Report now available “Today 4 more ausTralians will be Told They have mulTi ple sclerosis. iT’s The mosT common neur ological condi Tion affecTing young adulT s, wiTh 3 ouT of 4 people diagnosed being women.

2013–14

GIVING hope oN our jourNey

aNNual repo

rt

MULTIPLE SCLER OSIS

2014 MULTIPLE OF QUEEnSLAnDSCLEROSIS SOCIETy ABn 56 731 473 412 286 Gladstone Road, Dutton Park Locked Bag 370, Q 4102 Coorparoo DC Q 4151 Phone: 07 3840 0888 Fax: 07 3840 0813 InfoLine: 1800 177 591 mssociety@msq ld.org.au www.msqld.org .au www.facebook. com/msqld www.twitter.com /#!/msqld www.youtube.co m/user/MSAust raliaQ

ms queeNslaNd

D FREE FROM

An e-version of the report can be downloaded from our website www.msqld.org.au If you would like a hard copy posted to you in the mail (within Australia) please call us on 07 3840 0888.

journey TOWA RDS A WORL

©

MS1259_AR2014_Co

2013 –14 AnnU AL REPORT

But we think this year’s annual report is our best yet – if it’s even possible! Themed ‘giving hope to people with MS on our journey’ the report details how we raise our money and how we spent it during the year. It also shares the stories of six young people living with MS, at various

stages of their MS, and highlights our commitment to continuous funding of MS research in Australia.

giving hope on our

MS LIFE – SUMMER 2015

We’re proud to share that our 2013–14 MS Queensland Annual Report is now available. Last year’s report took out the top prize in the $5million to $30million revenue category of the national PwC Transparency Award for our excellence in annual reporting – an award program recognising the Australian charities with the most rigorous and transparent reporting on finance, governance and strategy.

verSpine_Art04_sd.ind

d 1

5/11/2014 9:48 pm

6

& AGM

annual

conference

wrap up

University and person with MS, Gary Allen who discussed a number of new treatments that are being developed to potentially help treat MS. Watch our ‘Year in Review’ video and guest presentations are now available on our website at www.msqld.org.au We’re already looking forward to planning next year’s AGM and Conference. To help us improve next year please provide your valuable feedback to us by email at mslife@msqld.org.au

Thank you Jon At the AGM we bid farewell to our outgoing Chair Jon Loraine, after serving on our Board for 12 years and Chair for the last five.

In this time Jon has always been a great supporter, leader and champion of the MS cause and we deeply appreciate his passion and commitment to the work of MS Queensland. We especially thank Jon for his pivotal role as Chair in preparing, guiding and strengthening our organisation for the road ahead.

MS LIFE – SUMMER 2015

This year’s program featured special guest presentations from the University of Queensland’s Professor Ken Pakenham on ‘enhancing resilience for people with MS’ and former National Disability Services manager Valmae Rose on ‘the NDIS coming to Queensland’. This year’s program also included an exciting new panel discussion on ‘MS emerging treatments – hope versus risk’ facilitated by MS Research Australia CEO Dr Matthew Miles. Our guest panelists were Assoc. Professor Megan Munsie from StemCells Australia, Professor Simon Broadley from Griffith

7

NAVIGATING the HEALTH SYSTEM when you have MS

This edition’s guest writer is Kaye Hooper, Clinical Nurse Consultant at the MS Clinic at the Royal Brisbane and Women’s Hospital. Kaye has 20 years of experience in providing clinical healthcare for people with MS. Kaye has co-authored an Encyclopaedia of Multiple Sclerosis and authored MS related articles and booklets for the National MS Society in America. Over the next four editions of MS Life, Kaye will cover a number of MS topics ranging from initial diagnosis, how to manage milestones and the role of specialists.

MS LIFE – SUMMER 2015

8

Receiving a MS diagnosis can be life changing and everyone will have their own unique MS journey. Often your diagnosis can be the first time a serious medical condition has affected you and you will need to work out who to speak to and what to do. Knowing how to navigate the healthcare world can be very overwhelming! Below we answer some of the most commonly asked questions for newly diagnosed people with MS and their families.

Where should I go for my specialist healthcare?

Which neurologist should I see?

Should I choose public or private medical care?

All neurologists have specialist training in diseases of the central nervous system, including MS, however there are some neurologists who have a particular interest in MS. Neurologists with a special interest in MS will be up to date with diagnosis, management and treatments.

The public health system gives people with MS healthcare free of charge, whereas there will be an out-of-pocket payment for services from neurologists in private practice (with some refund from your private health fund). When seeing a neurologist privately you will need to call ahead of your appointment to find out the out-of-pocket costs.

Do I need a GP who knows all about MS? No, it’s not necessary to find a GP who specialises in MS. Your GP will be directed on MS care from detailed letters which will be sent to them after all consultations with your neurologist. Support for your GP can also be provided by MS nurses and other MS health professionals.

There are specialty MS Clinics available in a number of large city hospitals around Queensland that are free of charge for the diagnosis and management of MS. There are also neurologists who have private practice rooms for consultations and these doctors will admit patients to a private hospital for necessary procedures or treatments.

My family is worried too – what can they do?

It’s often said that when a person receives a MS diagnosis so does the family. Many resources are available for families and loved ones by contacting MS Queensland’s InfoLine (1800 177 591) and other MS healthcare providers are a good place to contact for help.

MS Clinic Nurses Kaye Hooper (left) and Bernie Gazzard

How often do I need to see my neurologist?

What can local healthcare services do for me?

This will vary on the individual but in the early days, when diagnosis and treatment decisions are being made, there may be frequent contact with your neurologist. After this time, it is usual to see a neurologist for a review every six to 12 months to check how things are going. If there are new problems or worsening of previous symptoms you may need to see a neurologist sooner – just give your neurologist, GP or MS nurse a call.

Local healthcare services are the network of support for all people in communities around Queensland. GPs and other community service providers can offer a range of services. MS Queensland offers a Regional Service Coordinator (RSC) service providing personalised care across the State.

Many MS services are delivered through local healthcare professionals under the direction of a neurologist.

Some symptoms of MS can be managed locally (e.g. physiotherapy, urologist, speech pathologists etc.) as they have the expertise in these specialised areas. For people living in rural and remote areas in Queensland there is also a patient transport subsidy scheme that supports travel to see a specialist MS neurologist.

What part do I play in deciding about my healthcare?

All decisions made about healthcare and treatment options are made together by you and your neurologist. Concerns and preferences should be discussed and having an open and frank discussion about any issue is a good approach.

There are many aspects of a person’s daily life that will shape the decisions made and it is important to make the best choice and treatment plan suited to you.

How do I link with my MS healthcare specialists and other community services?

Having your own ‘support team’ is good. It will help you know who to call when there is a problem or query about something of concern. You will learn how to discern problems and remember, not everything that affects you is linked to your MS. Contact your GP, MS specialist, MS nurse or MS Queensland so that you can talk through things.

If you have a question about MS or navigating the healthcare system please call our InfoLine on 1800 177 591 or email info@msqld.org.au

MS LIFE – SUMMER 2015

What if I live in a regional or remote location?

Note: To access this service you must be a registered client of MS Queensland. Call 1800 177 591 for more information.

9

MS

affordable housing PROJECTS ON TRACK

We are working on a 10 year plan to create many more opportunities for people living with MS and other neurological diseases to remain in their own homes, for as long as they can. But if a person’s condition progresses to needing a high-care age-appropriate housing solution, the available options are extremely limited. For young people living with progressive forms of MS this is especially true and aged-care accommodation is often the only option.

BHC CEO David Cant with MS Queensland Board Member Wendy Lovelace and CEO Lincoln Hopper

To help alleviate this situation from happening, MS Queensland is investing in a number of alternative housing options around south-east Queensland. The first of many projects is ‘Spectrum Apartments’ at Lutwyche.

north. The BHC development was made possible by the provision of 4,370 square metres of prime state-owned land on Lutwyche Road.

In early September Brisbane Housing Company’s (BHC) CEO David Cant and the Deputy Premier and Minister for State Development, Infrastructure and Planning Jeff Seeney turned the first sod on Spectrum Apartments in Brisbane’s

The $13million development will deliver a total of 60 affordable and private apartments and retail spaces, of which MS Queensland will purchase four purpose-built adaptable apartments, providing quality affordable housing for people living with MS in the area.

We are proud to be partnering with BHC on this project.

Construction of Spectrum Apartments is scheduled to start early next year and expected completion is 2016.

Energy rebates

for south-east Queenslanders

MS LIFE – SUMMER 2015

10

For more information please contact our Director of Services Karen Quaile at karen.quaile@msqld.org.au On 8 November this year we turned another ‘sod’ for a second housing development at Albany Creek in partnership with Youngcare and the Queensland Government. A total 11 units will be built – eight for people with a disability with ageing parents who are unable to continue to care for them at home.

Construction starts early 2015 and will be completed mid-2016.

This time of the year the days are long and hot, often having a significant impact on people with MS. We are continuing to work with Government to share your heat-related issues and the affect the heat has, and in-turn on your energy costs.

Here’are some tips to consider that could save you money: connect to the Economy Tariff 33 – you could save hundreds of dollars and receive a financial rewards (certain items are great to run outside of peak times, like your pool pump). replace your hot water system – connect your existing or new system to an economy tariff and you could claim up to $200 and up to 53% on your hot water bill.

MORE

PHYSIO EXERCISE options coming to regions

&

Earlier in the year we were fortunate to be awarded a Cecilia Kilkeary Foundation grant to help initiate and support two new exercise groups in regional Queensland for people living with MS.

For more information on these new initiatives and regional MS exercise options, please contact Linda Wilson-Marks from our Physiotherapy Department on 07 3840 0841.

Since then, our physiotherapy team have partnered with local exercise service providers in both Rockhampton and Hervey Bay to start up the groups and details will be released in early 2015. Specific exercise options for people living with MS are limited in many regional areas.

It is hoped these groups will go some way towards addressing the need for these services.

Note: please check with a healthcare professional before commencing any new exercise or movements that your body is not familiar with.

replace your air-conditioner with a new, energy efficient PeakSmart air-conditioning unit – you could receive a rebate of up to $500 from Energex. PeakSmart helps reduce peak demand without affecting your airconditioner’s performance.

For more information on how to access these energy saving methods please contact your energy retailer.

You can also check rebates for pensioner concession card and healthcare card holders at www.dews.qld.gov.au by searching ‘electricity rebates’. Some of these include: Electricity Rebate; Medical Cooling and Heating Electricity Concession Scheme; Home Energy Emergency Assistance Scheme; and Electricity Life Support Concession.

If you would like to discuss energy rebates that may be applicable to you contact our Advocacy Manager Natalie Walsh on 07 3840 0823 or email natalie.walsh@msqld.org.au

MS LIFE – SUMMER 2015

Our physiotherapy team are excited to be growing our presence in regional areas and are planning several regional visits in the near future. As part of these visits, the team plans to provide more educational opportunities and undertake consultations with our registered clients where it’s needed. We’re also planning to work closely with local service providers to increase their capacity and confidence to support some of the physiotherapy needs of people living with MS.

11

MS FUNDRAISERS IN THE COMMUNITY

Earlier this year we were chosen as the Gold Coast Titans charity of choice for a month. The Titans invited members of the Gold Coast MS Support Group to join their Strength and Conditioning Coaches, Physiotherapist and Titans fullback Will Zillman for a special ‘Exercise Training for MS’ session inside the Titans gym.

The session started off with a warm-up walk around the stadium, followed by a stretching session, strength work and circuit drills. Head Strength and Conditioning Coach, Dan Ferris, said regular exercise in the daily routine of people living with MS was vital in managing the condition.

Gold Coast MS Support Group with Titans players

challenge. I’ve now found myself excited about a new challenge – boxing. It’s great for my upper body strength!”

“There seems to be a common misunderstanding that exercise can be damaging for people living with MS, where actually it’s the total opposite – studies have shown physical exercise is well tolerated by those living with MS. In fact it improves both physical and mental functioning,” he said.

Following the session, the support group were joined by other Titans players and staff for a morning tea. Gail said “they treated us like we were part of the family which is what the Titans are – one big family”. A big thank you to the Titans who have been, and continue to be, great supporters of MS Queensland.

It was a hard exercise session but support group member Gail Harbott said “I found it exhilarating and a great

If you’d like to fundraise in your community please call 07 3840 0887 or email events@msqld.org.au

I know that many people have already proactively contacted their elected member and I would love to share your experiences with the wider MS community.

Our MS Ambassador, Gary Allen, recently met with his local members and was very pleased with the outcome. Both Gary’s State member and opposition member were very interested in what he had to share, including the impact that energy and its associated financial costs has on the lives of people with MS and issues regarding the NDIS coming to Queensland in 2016. As a passionate MS Ambassador, Gary has offered to help you with contacting your local member, should you want his help. Simply contact me for his details.

MS LIFE – SUMMER 2015

12

Who is your local politician?

Our world is shaped by decisions made by Government.

You may not care about politics or even politicians but everyone cares about the decisions made by Government on our behalf.

What do you want from your elected member?

With only months until the next State election now is the time to let them know.

Just like MS, no two meetings with politicians will be the same. Everyone has different issues that they want to raise and every opportunity that you take to engage with your local member will be invaluable. So if you have an opportunity to meet, please get in contact with me to discuss some common issues faced by people with MS across Queensland that are important to mention.

If you have any questions or would like assistance to write or meet your member of Government please contact Natalie on 07 3840 0823 or email natalie.walsh@msqld.org.au

91

YEARS YOUNG

RON GROVE’S MS JOURNEY

Spend ten minutes with Ron Grove and you’ll be mesmerised by his stories. We recently spent a morning chatting with Ron, who has been living with MS since the early 1940’s – long before MS was able to be clearly diagnosed.

It wasn’t until the 1970’s when Ron’s work colleagues made remarks about his clumsiness and ‘wobbly walk’ that it led him to visit his GP. “My doctor, unable to find a cause, referred me to a neurophysician who, after extensive diagnostic tests and almost two years, revealed that MS was the most likely cause of my problems.”

“Thinking back over the events of my life soon made me realise that the optic neuritis I’d experienced in my early teens was the first appearance of MS.” Unable to let negativity and indecision run his life, Ron came to the realisation that the most important thing in life was his family and a commitment to his wellbeing and health.

“MS has taught me about the natural way of living. It’s made me change my outlook on life and reprioritise.”

Husband to his beautiful wife Lorna – who sadly passed away earlier this year – and father to John, Theresa and Paul, Ron decided that if he had to live with MS, he would do so under the best conditions available.

So he went on to lead a natural lifestyle with the mindset “if it doesn’t grow on a tree, I won’t eat it.”

Embracing this positive and can-do attitude towards life, Ron also used

our physiotherapy and hydrotherapy services at our Dutton Park Clinic twice a week for 25 years; enabling him to remain mobile until he moved into a nursing home five years ago.

But the ever spirited 91-year old remains optimistic as he talks about his life with MS. “As I travel along life’s way I am consoled by the satisfaction of my past achievements and have the impetus to continue from faith and hope of even better things to come.”

“I’d had MS in a ‘dormant state’ throughout my war service and working life and didn’t even know it.”

MS LIFE – SUMMER 2015

Prior to his MS diagnosis in 1976, Ron served our country in Papua New Guinea during World War II. He was just 17 years old and attending Nudgee College when his vision became affected and he was given glasses to manage his optic neuritis.

13

Grem’s MS journey For Lionel “Grem“ Warrington being a self-employed fibreglass boat builder and the State President of a bike club in Queensland was keeping him active and busy. That was until MS stopped him in his tracks.

MS LIFE – SUMMER 2015

14

A multitude of tests later, Grem was told he had MS. At the time he said “it just confirmed what I already knew. It was the cherry on the top that I had actual confirmation it was multiple sclerosis. Now I just needed to deal with it.”

Grem had spent months trying to self-diagnose his symptoms using ‘Dr Google’ and was overwhelmed by the amount of information on the web. He decided to see a

neurologist for a solid diagnosis. Two years on and despite going through some trying times, Grem now has a positive attitude towards his MS and tries not to let MS run his life.

“Aart just understood me and was a channel for me to talk to. He’s so supportive and encouraging and has done what a support network should have done.”

But this wasn’t always the case.

Two years on and Grem’s consultations with Aart are less regular, but he knows that Aart is there whenever he needs him.

Having someone to talk to from MS Queensland where he could be himself has positively impacted how Grem views his future with MS.

Up until last year Grem was angry at his situation to the point where he was becoming self-destructive. He felt that MS had robbed him.

In those early stages for Grem, life with MS was tough and lonely.

Two days after being diagnosed his long-term girlfriend left him. He has had some support from his parents but they’ve been reluctant to fully educate themselves about his MS. Grem found himself in a bad place where his MS was significantly affecting his life and he felt like an “emotional wreck”.

Grem made the decision to spend time with others with MS and it was here where he found some solace; confiding in another bike club member living with MS. It was at this time Grem turned to MS Queensland and contacted our Psychologist Aart Simons.

“Don’t stick your head in the sand – MS doesn’t mean the end of the world. It means you get to create a new you, a better you.”

Now retired, Grem spends most of his time doing work for his bike club.

He also hopes to be an example for others and has set up a ‘MS and other incurable diseases’ support page on Facebook. This group gives people the opportunity to connect with others who can relate to what they’re going through. Grem has had to deal with MS mainly on his own and he wants to avoid this from happening to other people.

“I believe you CAN get on with life with MS. Since being diagnosed I have learnt to value four key things; love, honour, loyalty and respect.”

“Yes I am 41 and I do have MS – but I’m still riding a 400kg bike and I am not afraid to do so.”

To find out more about our counselling and psychology services contact our InfoLine on 1800 177 591 or info@msqld.org.au For a full list of the services we offer please visit our website www.msqld.org.au

MS LIFE – SUMMER 2015

Grem was diagnosed with MS in May 2012 after suffering symptoms he can now date back to 2007. He knew “something wasn’t quite right” and in 2010 his MS symptoms had escalated. He started experiencing slurred speech, severe dizziness, dragging of his left leg and bowel and bladder problems.

15

Big Dinner Party is back!

The Big Dinner Party is coming in March and is a great excuse to invite some friends over and cook for our fabulous cause. It’s simple. Invite people over for a delicious meal and ask them to donate to MS Queensland in lieu of what they would have spent on a meal out.

Hosts who register early will receive a special host gift – but hurry, stock is limited! For more information call us on 07 3840 0828 or visit www.BigDinnerParty.com.au

MS SWIMATh ONS SPLASHING A LL OVER THE PL ACE

MS LIFE – SUMMER 2015

16

As the weather warms up the MS Swimathon season is also getting into full swing with three successful swims held already at Griffith University, Toowoomba and Jindalee.

The new season has seen celebrity swimmers, new rules and stacks of first-time participants making it a great day out for everyone involved.

We’ve been blown away by the interest our MS Swimathons are generating – not only with the public but also with great local organisations who want to support us – it’s always enlightening to see people from all walks of life coming together to do something positive for people living with MS. We are well on our way towards smashing our goal of raising $270,000!

MS Swimathons are such an important part of our event calendar, especially in regional areas. They bring the MS community together, raise money for local services, help us build relationships and support networks and raise more awareness of MS. We’ve seen a number of people this past year who are living in isolation, come along to a swim and connect with other people living with MS. We’d love to see every swim become a celebration of friendships!

Our focus now turns to our 2015 events on the Gold Coast (28 February), Mackay (8 March), Rockhampton (21 March), Cairns (28 March) and Townsville (3 May). We’re especially excited about this year’s Cairns MS Swimathon being held overnight for an extra challenge – from 8pm to 8am.

If you live in any of these regions we’d love to see you at the pool. Registrations are now open for the Gold Coast and Mackay, and registrations for Rockhampton and Cairns will open in January. Go to www.MSswimathon.com.au and sign up today. Join the fun and take advantage of our early bird discount rates!

Next year we’re celebrating the special 25th anniversary of the MS Brissie to the Bay bike ride and we’ve got some fantastic things planned to acknowledge the achievements of our past and present riders! Help us celebrate on Sunday 21 June 2015 by gathering your friends and family, and riding together in our biggest ever event to fight MS. Choose from one of four courses including the relaxing 10km ride along the Brisbane riverside, the 25km course out to Balmoral and back – or if you’re feeling adventurous, why not try the 50km or 100km scenic course out to Wynnum while enjoying water views as you ride.

Registrations are now open for our 25th birthday ride. Register today and take advantage of our super-duper discounted entry price – it won’t last long! For more information on the ride call us on 07 3840 0828 or visit www.BrissietotheBay.com.au

BIGGEST

ever MS Moonlight Walk This year’s MS Moonlight Walk saw 3,300 participants, including 200 people living with MS and their lanterns walk the banks of the Brisbane River, over the Story Bridge and through the Botanic Gardens. Surrounded by friends, family and the MS community, everyone joined together to walk in the fight against MS. This year more than $464,000 was raised to support people living with MS – this will help our work towards our vision of a world free from MS and it’s devastating impact. Thank you to all participants and their generous donations for making this year’s MS Moonlight Walk a success!

If jumping in the pool, cycling, or walking doesn’t sound like your cup of tea but you’d still like to help support the MS cause, why not buy a ticket in our MS Limited Edition Lottery? You’ll also have a chance to win great prizes so why not treat yourself to a Christmas present? We have one of Australia’s best-odds luxury car lotteries and it’s a rewarding way to support our cause. Spread the word with your friends, families and colleagues and visit www.mslimitededition.com.au today to purchase your tickets. You can also Freecall during office hours on 1800 060 210.

SErvO POwEr ASSiST

Up to 55km range, SWL 150kg, 2 programmes – 10 levels, airport mode, no stud axles, includes remote.

✔ support cardiovascular functions ✔ warm legs with less or no pain ✔ ease spasms increase mobility

MOTOmed

Passive/active exercise. Assist in your own rehab.

PHONE 1800 994 408 www.abilityinmotion.com.au

admin@abilityinmotion.com.au

MS LIFE – SUMMER 2015

Ideas move more

17

Building Partnerships Over the past few years we have been working to establish partnerships with universities across Queensland. By partnering with psychology departments, we’ve been able to build on the body of knowledge on adjusting, coping and living with MS. We have been working with both psychology undergraduates and Masters students – allowing us to ultimately expand our counselling service to support more people with MS. To date, we have partnered with the University of Queensland,

Did you know?

We’re building up our psychology service

Queensland University of Technology and most recently, James Cook University in Townsville. The services that have resulted directly from these partnerships include: • one-on-one counselling and psychology support through provisional psychologists based in Dutton Park; • the trial and development of the ‘READY Resilience’ group program for people with MS offered in five sites in south-east Queensland; • a new ‘Mindfulness and MS’ program (see below); and

• the pilot of a ‘Living Well with MS’ group program in Townsville.

We look forward to continuing with these established partnerships and up-skilling current psychology students. We plan to further expand our university partnerships and will be targeting universities in Central Queensland in 2015.

If you have a question about our counselling services and other MS programs, please contact our Community Services Manager Margaret Hegarty on 07 3840 0816.

Mindfulness for MS In collaboration with the University of Queensland’s School of Psychology we recently held a five week ‘Mindfulness for MS’ program in both north Brisbane and Beenleigh. The program was facilitated by Elizabeth Spitzer under the supervision of Professor Kenneth Pakenham.

MS LIFE – SUMMER 2015

18

Mindfulness refers to paying attention to the present moment with openness, curiosity and flexibility. The ‘Mindfulness for MS’ program consisted of five, two hour weekly sessions that included mindfulness exercises, discussions, mindfulness meditation and home-based mindfulness practice. More than 20 clients participated in the program – 78% of who live with relapsing-remitting MS. The average age was 48 years old and 91% of our participants were female.

“The course allowed me to meet so many other people living with MS and I now feel less isolated and more supported in my life with MS.” Client with MS

“The ‘Mindfulness and MS’ program has helped me move past the negative feelings and thoughts around living with MS.” Client with MS To evaluate the success of the program, participants were asked to complete a questionnaire before and after the program. At the end of the program participants felt significantly less depressed and stressed, and had a better quality of life. Most people said the program helped them step out of ‘autopilot’ and be more present, change their perspective on life with MS, as well as allowing some to be more compassionate and accepting of themselves.

As part of our ongoing commitment to service delivery, we are currently planning our schedule of educational programs for 2015. If you would like more information please contact our InfoLine on 1800 177 591 or info@msqld.org.au

N

was his only choice. Through simple changes to his nutrition and portion sizes of meals the weight fell off – all 16kgs of it.

How Ron lost 16kg by making simple changes.

HEALth and m

keeping it simple

For Ron Vella, who lives with progressive MS in our accommodation facility Granston Lodge, he wanted to look great for his second daughter’s wedding.

Weighing 88kg this time last year, a passing comment “Ron’s getting big” from a friend to his wife on an evening out was enough for him to make a change.

“With a year to go until my daughter Kate’s wedding, I wanted to be able to wear the same suit I wore at my first daughter’s wedding so I was determined to lose the weight.”

Being confined to a wheelchair Ron knew he wasn’t going to be able to exercise, so changing his food intake

Ron’s tips for healthy living

1

2

Reduce the size of Cut out as much your meals – you sugar as you can don’t need as much as – almost everything you think! has sugar in it.

s:

3

“I’m living proof that you don’t need intense exercise to get results – a lot of changes can be made in the kitchen. You just need to have the willpower to stay strong.”

And he’s inspiring others; with two other Granston Lodge residents also opting for healthier food options since seeing his weight loss efforts.

“I appreciate that I have my food prepared for me because I’m unable to cook it myself, but my new eating with a balance of salad, lean meat, eggs and fruit is easy for anyone to manage and maintain.”

Ron said he also feels less fatigued, has more energy and generally feels better all around. The highlight of his weight loss journey has been not only being able to fit into his wedding suit, but accompanying his daughter down the aisle and enjoying her wedding day as a happier, healthier man.

If Ron’s journey has inspired you, you can download the ‘Food and MS’ resource on our online resource centre at www.msqld.org.au/msresources/information-on-ms

Cut down the amount of bread and cereal you are eating.

4

Make sure you get some good protein in your diet like eggs.

5

Try an amount of ‘apple cider vinegar’ after dinner to aid digestion.

Ron would like to acknowledge the support of the Granston Lodge staff, kitchen staff and his family for supporting his new healthy lifestyle.

A better disability support pension, support services and information for people living with MS are high on the agenda for newly appointed MS Australia Advocacy Coordinator, Andrew Potter and other MS Advocates who met recently with Federal politicians. Also important national policy issues – including the proposed GP co-payment and the Aged Care/NDIS interface – were shared recently by Andrew and other national advocates from across Australia.

With more than 1,000 people being diagnosed with MS every year, one of MS Australia’s and Andrew’s first goals is to increase the number of advocates; “what we share is a commitment to living life to the fullest. Together we have such a strong voice that can deliver a powerful message.’’

His newly appointed role as national MS Advocacy Coordinator is a natural progression. Andrew has lived with MS for 25 years and has been a long-term advocate for people with MS. If you have a question about the National MS Advocates Program please contact our Advocacy Manager Natalie Walsh on 07 3840 0823 or natalie.walsh@msqld.org.au

MS LIFE – SUMMER 2015

NEW

national MS Advocate leads annual conference

19

MS Support

Leonie King from Brisbane ANNUAL MS Leonie King was diagnosed with MS over 20 years ago.

Groups FORUM

Fortunately her symptoms have, at most times, been manageable. She’s experienced loss of her peripheral vision, chronic fatigue, and problems with balance and standing for periods of time.

For Leonie, being diagnosed two decades ago meant there were very limited services and MS specific treatments available. After what seemed like years of having various tests Leonie was finally given the diagnosis of MS and thought “thank god for that – at least I know what I’m fighting.”

It was her neurologist’s letter confirming she had MS that led Leonie to MS Queensland. Being connected with our organisation meant she was able to speak to our staff about what she was dealing with, and in recent years Leonie has relied on the support of our Regional Service Coordinator (RSC) team.

“My RSC and I have overcome many hurdles together and have fought some big battles recently.”

Being 57 years old and wanting to stay living in her own home, Leonie worked with her RSC to get in-home help. Lorraine helped organise funding to have carers come into Leonie’s home each day.

“I found that getting care is very confusing until you get to understand it – and with the NDIS coming people will be given their own choice so you need an RSC to help explain it. Being able to stay in my own home means everything to me – it’s just me and my little dog Bundy and that’s all I need.”

MS LIFE – SUMMER 2015

20

For more information on the support a local Regional Service Coordinator can give you, please contact our InfoLine on 1800 177 591 or visit www.msqld.org.au

Leonie and Bundy

It was a productive day bringing together members from 20 People with MS Support Groups across Queensland (PwMSQ) for the annual forum on Thursday 27 November in Brisbane.

Last year’s inaugural event was so well received that it was decided the initiative should become an annual event – held alongside our Annual Conference and AGM. Supported by the Ann Langley Scholarship – in recognition and memory of unique and remarkably dedicated MS Advocate Ann Langley – groups came together last month to share ideas and to find new ways of meeting the needs of people with MS through our peer-to-peer support group network.

Attendees wasted no time reconnecting – travelling from as far north as Cairns, down to the southern border on the Gold Coast and everywhere in between.

This year five new support groups have started to support young people living with MS. The convenors of these groups shared their own strategies for making their support groups approachable for younger people with MS in their own communities. The NDIS experiences of people living with MS in Victoria and New South Wales were also discussed.

We’re looking forward to continuing the energetic conversation that came from this year’s PwMSQ Forum. If you would like more information regarding PwMSQ Support Groups please contact our Director of Services Karen Quaile on 07 3840 0840.

How

Sian

lives positively with MS

Doing nothing is not an option by Sian Burrows “How life changes! 18 months ago at the age of 42 I was excitedly on the way to starting the 1300th-odd school in Queensland. Packing in all the things that I thought should make a successful State High School to give the best opportunities for kids.

Today, I’m trying to get back to that, with the weight of big wet sandbags attached to my legs. My journey has been side swiped by MS. When I was diagnosed in 2012, I packed my MS in a box and kept on starting my new school.

My legs got heavier; every single step was a ridiculous effort. I now use a walking stick and own a wheelchair.

MS fatigue and fogginess were other symptoms, however, I can safely say that this is under control. I did some research and discovered many believe gluten, dairy and sugar do nothing positive for people living with MS so I’ve cut these out and my fogginess has disappeared. I commonly hear “gee you’re looking good” – yes, I might on the outside probably because I eat so well, but it’s hard on the inside at times.

While all this has been going on, I have successfully re-engaged in continuing

Making

waves

to get a school up and off the ground!

My employer has been excellent and the successful application for a ‘Federal Government Job Access’ grant saw an electric scooter delivered to my workplace. If my legs weren’t going to cooperate, then I’d go one better and trump them with a scooter! And I am now back; visible and leading my school forward again!

I have so much more I could share but hopefully, one can see (for me) doing nothing is not an option in fighting my MS. If you have a living positively with MS story that you’d like to share please email us at mslife@msqld.org.au

in the Redlands

Our physiotherapy team recently introduced a new water exercise group in the Redlands region in response to local need. The six week course started in September and the lovely Spring weather provided ideal water conditions for the participants. Those who took part in the course said they enjoyed being able to exercise in the water and were surprised by the level of exercise they could achieve.

Although, what may appear a simple movement on land can be made more difficult in the water! So your muscles have to work hard to achieve the movement which is beneficial to your overall health.

Some of the benefits of water exercise include…

• the water’s buoyancy and hydrostatic pressure makes it easier to stand so there are few swimming skills required; • it’s a great opportunity to exercise in an upright position with little support; • the viscosity of the water provides resistance which is great for strength and balance training; and • water works to ‘hold’ your body up, allowing time for your balance ‘reactions’ to turn on.

We are very open to making ‘waves’ in a new location.

If you’re interested in a water-based exercise program please send us your details and location.

For more information on exercise and MS please visit our website www.msqld.org.au or contact Linda Wilson-Marks from our Physiotherapy Department on 07 3840 0841.

MS LIFE – SUMMER 2015

Since completing our six week course and experiencing the above benefits of exercise in the water first hand, many Redlands participants are now exercising in their local and home pools.

Note: please check with a healthcare professional before commencing any new exercise or movements that your body is not familiar with.

21

&

DRIVING MULTIPLE sclerosis QUESTIONS WITH TIM

This topic is one of our most downloaded resources from our website and one of the most commonly asked questions from people living with MS at all stages of their MS journey. Our Information Coordinators pride themselves on keeping all of our resources and information up-to-date and driving is no exception. We are in regular contact with Queensland Transport to ensure the information we provide you is accurate and reflects the legal implications of driving in Queensland and Australia.

A passage very similar to this will appear in virtually every resource on driving produced around Australia from MS organisations.

MS LIFE – SUMMER 2015

22

Driving a motor vehicle is a complex task, requiring perception, good judgment, responsiveness and reasonable physical capability.

Therefore a range of medical conditions, as well as treatments, may have an impact on your fitness to drive. A diagnosis of MS does not automatically mean that you are no longer able to drive. However the symptoms of MS are many and varied and, from time to time, may affect your ability to drive safely.

While always a difficult discussion, it’s important to remember that

driving is not a right – it’s a privilege.

Driving offers independence and autonomy – however the effect of MS on driving varies from person to person; depending on your driving habits, your symptoms, and how severe those symptoms are. As many of you would know, MS symptoms can fluctuate from day-to-day or even between the morning and afternoon.

Some people living with MS change their driving habits without really acknowledging that they are experiencing driving difficulties. Small changes you can make include: • not driving at night, or limiting driving to familiar areas near home; • only driving during high-energy times; • refusing to drive with family or children in the car; or

• finding alternative ways to perform specific functions.

Tim MS Nurse Practitioner Manager of Specialist Education If you have an MS-related question to ask our Manager of Specialist Education, please email Tim at mslife@msqld.org.au If you have any questions or would like more information on your responsibilities as a driver with MS see page 23, visit our website www.msqld.org.au/msresources or call our InfoLine on 1800 177 591.

MS MS Resources support groupS update MS and driving in Queensland

Driving with MS in Queensland This updated comprehensive resource covers what you need to know about assessing your fitness to drive for private and commercial vehicles. It also answers some of the more commonly asked questions and provides a handy summary about driving with MS in Queensland.

dRIVInG what you need to know about

MultIple scleRosIs In queensland

Produced by Ms queensland

286 Gladstone road dutton Park QLd 4102 Locked bag 370 coorparoo dc QLd 4151 1800 177 591 (InfoLine) info@msqld.org.au www.msqld.org.au

your MS Queensland regional Service coordinator can provide support and information on possible options available to you.

Driving and Your Health Your questions answered For most people, being able to drive a motor vehicle is a very important part of their daily life – for maintaining social contact, for getting to and from work, and for accessing their everyday needs such as food and services. Driving can also be essential to employment.

But with the benefits of being able to drive also come certain responsibilities, and one of these responsibilities is to make sure you are well enough to drive safely.

Certain health conditions can affect your ability to drive safely, either in the short term or more permanently. This brochure explains: • the types of illnesses that might affect your ability to drive safely • your responsibilities • how your doctor can help you • where you can go for further information and assistance.

what tYpe of health conditions might affect Your abilitY to drive safelY? Driving a motor vehicle is a complex task requiring perception, good judgement, responsiveness and reasonable physical capability. A range of medical conditions, as well as treatments, may therefore impair your driving ability. Common examples include: • Blackouts or fainting • Dementia and cognitive impairment • Seizures and epilepsy • Other neurological conditions • Diabetes • Psychiatric conditions • Heart disease • Sleep disorders • Vision problems • Alcohol and substance misuse.

Just because you have a disease or condition that might affect your driving doesn’t mean that you won’t be able to drive at all. It might mean that you have to see your doctor more often to check that your condition is well managed and it might mean that there are some restrictions placed on your driving.

who makes the rules about whether You are well enough to drive?

The rules about health and driving are developed by medical experts and are agreed to by all driver licensing authorities.

Your doctor does not make the rules but provides advice about how your particular health condition might affect your ability to drive safely and how it might be managed. The driver licensing authority always makes the final decision about your licence status. They will consider the advice of your doctor as well as other factors such as your accident history and the type of vehicle you drive (for example a truck, car or a public passenger vehicle).

what are Your legal responsibilities?

All states and territories in Australia have laws about reporting health conditions that might affect your ability to drive safely. These laws have been created to protect public safety.

The laws require you to report to your driver licensing authority, any permanent or long-term illness that is likely to affect your ability to drive safely.

Your doctor is able to advise you on whether or not you should be reporting a condition to the driver licensing authority. When you report your illness it doesn’t necessarily mean that your licence will be taken away. It does mean that the driver licensing authority can work with you and your doctor to manage your condition with respect to your driving.

what if Your condition is onlY temporarY? Many temporary conditions will prevent you from driving. For example, following an anaesthetic your doctor will advise you not to drive for 24 hours or more. An injury, such as a broken leg may also prevent you from driving. In these types of circumstances your doctor will advise you about the need to restrict your driving in the short term. In most cases your licence status will not be affected and you will not need to report the temporary medical condition to the driver licensing authority.

how will Your doctor assess whether or not You should be driving?

When assessing your ability to drive safely, your doctor will consider your physical and psychological health. He or she will refer to a book of medical standards which is used by all doctors throughout Australia and which describes specific requirements for various diseases and conditions. You can view these standards on the internet at: www.austroads.com.au Sometimes it can be difficult to make an assessment and your doctor may refer you for a practical driver assessment or to a medical specialist.

Driving and MS in Queensland NEW We recently developed this new resource to provide condensed information about driving with MS and Queensland legislation, your responsibilities as a driver, ways in which MS symptoms may affect your driving ability and safety and how to notify the Department of Transport and Main Roads about your MS. Driving and your health This informative resource provides answers to your questions about the types of illnesses that might affect your ability to drive safely, your responsibilities, how your doctor can help you, what to do if you have a commercial licence and where to go for further information and assistance.

For more information about any of these resources, or to have a copy mailed or emailed to you, please email us at info@msqld.org.au or phone our InfoLine on 1800 177 591.

2014 leaves us with another year of positive memories – ranging from new groups starting up to support the younger generation of people living with MS, to the ever-successful community fundraising events run by MS Queensland in the quest to fund services and support for Queenslanders living with MS. At the latter end of the year the University of Queensland collaborated with MS Queensland. Four young Business Masters students connected with Queensland’s MS support groups and delivered an impressive and wellstructured presentation showing the strengths of our groups that can be built on, and ways where MS Queensland can better assist and support these groups.

The increasing number of people being diagnosed with MS has never been more evident than it is today, with new technology making early diagnosis more prominent than ever. I wish to take this opportunity to thank everyone involved in our MS community, particularly the volunteers and the unseen heroes who give their heart and soul to make the lives of people with MS brighter.

Thank you to everyone who participated in this year’s MS Support Goups Forum. A group photo of everyone who attended is below.

Wishing all of you and your families a blessed Christmas with a New Year that brings health and hope.

Jenni State Convenor pwMS Support Groups

MS LIFE – SUMMER 2015

One of the more commonly asked questions we receive is “can I still drive?” The good news is that having MS doesn’t mean you can’t drive, but it does mean that you need to be aware of the medical and reporting requirements with regards to driving. As the issues around driving and MS can be quite complex, we do our best to keep our resources up-to-date, in consultation with the Department of Transport and Main Roads, to ensure it’s as accurate as possible. Below are some of our resources on driving and MS which may assist you.

23

2015 CALENDAR of EVENTS 13 FEBRUARY – 4 APRIL MS Heroes nomination period

28 FEBRUARY

1–31 MARCH

8 MARCH

Host a dinner to help fight MS MS Swimathon Gold Coast

MS Swimathon Mackay

www.msqld.org.au

MSswimathon.com.au

www.BigDinnerParty.com.au

MSswimathon.com.au

21 MARCH

28–29 MARCH

1–31 MAY

3 MAY

MS Awareness Month

MS Swimathon Rockhampton

MS Swimathon Cairns

MSswimathon.com.au

MSswimathon.com.au

www.KissGoodbyetoMS.org

MSswimathon.com.au

27 MAY

21 JUNE

23 OCTOBER

NOVEMBER

MS Moonlight Walk

MS Swimathon Toowoomba & Jindalee

World MS Day

Dates TBC

Enerflex MS Brissie to the Bay

30 MAY 2012

www.WorldMSDay.org

www.BrissietotheBay.com.au

MS Swimathon Townsville

www.MoonlightWalk.com.au

MSswimathon.com.au

For more information contact the MS Queensland Events Team on 07 3840 0828 or email events@msqld.org.au Unless otherwise stated, the views expressed in MS Life and submitted photography are those of individual authors and MS Clients, and not of MS Queensland. MS Queensland does not expect or invite any person to act or rely on any information, statement or opinion in MS Life, and readers should make and rely on their own inquiries, and obtain professional advice, before making any decisions or giving any advice arising out of any such information, statement or opinion. Neither MS Queensland nor any of its employees, agents or contributors shall be liable for any errors or omissions in any material in MS Life, and in no event will MS Queensland or any of its employees, agents or contributors be liable for any loss or damage arising from reliance on any information, statement or opinion in MS Life. Apart from any use permitted under the copyright act, no material in MS Life may be reproduced or communicated to the public in whole or in part without written permission from MS Queensland or the relevant copyright owner. © 2014 Advertising Disclaimer: Advertisements are provided to assist consumers to locate and purchase suitable products and services. MS Queensland 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 purchase with the particular supplier as MS Queensland is not liable in the event the product is not satisfactory.

DonatE TODAY HELP Support MS Queensland Donation:

I would like to give a tax deductible gift of $10 $50 $25 Surprise me!

I would like to make a monthly credit card donation of $

per month

Payment method:

Please return this form to:

My personal details are as follows:

MS Society of Queensland Locked Bag 370 COORPAROO DC QLD 4151 OR Phone: 1800 CURE MS

(1800 2873 67) OR Fax: (07) 3840 0813 OR secure web donations www.msqld.org.au/donate

Full Name...................................................... .....................................................................

Address......................................................... ..................................................................... .....................................................................

Post Code......................................................

Phone No.....................................................

Email.............................................................

Cheque (made payable to MS Society of Queensland) Amex

or debit my

/

Cardholder Name:

Signature:

MasterCard

Please send me information about making a bequest in my Will I have already made a bequest to MS Queensland in my Will Please email me your monthly e-newsletter, MS Insight I do not wish to receive any further newsletters

Your privacy: MS Queensland complies with the Australian Privacy Principles. Our Privacy policy is available on the website at www.msqld.org.au This information is being collected for the purpose of providing care and services to clients, and promotional activities and information services. If you wish to change the way you give, or to update your personal details, please call our supporter services team on 07 3840 0888.

MSLSUM15

Expiry:

Visa

ABN 56 731 473 412

Money Order