MS Life Autumn 2014

MSLIFE. AUTUMN 2014

MS QUEENSLAND’S PREMIER MAGAZINE FOR PEOPLE LIVING WITH MS

QUEENSLAND

RESEARCH QUEENSLAND RESEARchERS fIND PoTENTIAL TREATMENT foR PRoGRESSIvE MS

pg. 06

pg. 08

pg. 11

pg. 17

Energy prices on the rise

2014 MS workshops

The role of MS Support Groups

Enerflex MS Brissie to the Bay is back

LETTER fRoM ThE EDIToRS

TELL US WhAT YoU

THINK! Dear readers, We hope you and your loved ones are settling in well to the new year. It’s always an exciting time of the year for MS Queensland as we head into our busiest period of fundraising events. We’ve already seen the MS Big Dinner Party, Gold Coast and Cairns MS Swimathons fly by, and now we’re preparing for our inaugural Mackay MS Swimathon, Rockhampton’s second MS Swimathon and of course our 24th annual Enerflex MS Brissie to the Bay bike ride on Sunday 22 June.

MS Life’s previous Editor, Melanie has just returned from a year working for the MS Society in the UK, bringing back with her a great international perspective on what’s happening with global research into cause and treatments for MS. But from here in our very own backyard let’s not forget Professor Pender’s recent research breakthrough that was published globally in the International Journal of Multiple Sclerosis and attracted a whirlwind of media attention across the state. Professor Pender’s work suggests that controlling infection with Epstein-Barr virus (EBV) – the most common cause of glandular fever – may be beneficial in treating secondary progressive MS. This experimental treatment was trialled on one of our clients from Brisbane, Gary Allen, who has experienced significant clinical improvements since receiving the treatment nearly 12 months ago. Check out pages 12 to 15 for the full story on this exciting development. We’ll also keep you posted on any updates on Professor Pender’s work via our website.

MS L FE – AUTUMN 2014

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 cassie and Melanie Editors, MS Life

Love MS Life or think it needs improvement? Due to increased postage costs and the way people access information, we are planning to introduce an electronic LOVE flipbook version of MS Life.

Have your say on how you’d like to read MS Life by friday 2 May 2014. See the enclosed MSLIFE? survey form for details.

Spring Edition 2009

LIFE

QUEENSLAND

MS Life

LIFE

MS Australia – QLD

QUEENSLAND

Autumn 2011

Giving life back

LIFE Queensland

Autumn 2010

Spring Edition 2009

LIFE

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QUEENSLAND

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Giving life back

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MS Life

LIFE

MS Australia – QLD

QUEENSLAND

Autumn 2011

Giving life back

LIFE Queensland

Autumn 2010

Spring Edition 2009

LIFE

KdajbZ (! 6j\jhi '%%+

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

QUEENSLAND

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Giving life back

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MS Life

LIFE

MS Australia – QLD

QUEENSLAND

Autumn 2011

Giving life back

Australian of the Year

WORLD MS DAY

LIFE

QUEENSLAND

How you can help the global campaign on employment and MS

GET PHYSICAL

BRISSIE TO THE BAY

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

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

that life offers.

2nd Annual MS National Advocates Conference

Jonathan Loraine and Bruce Milligan

Summer Edition 2009

MS Australia – QLD

QUEENSLAND

MS CLINIC CONVERSATIONS

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

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

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

Winter Edition 2009

Giving life back

LIFE

QUEENSLAND

Australian of the Year

In depth answers to the most frequently asked MS questions

it won’t. I am praying that it won’t.

WORLD MS DAY

GET PHYSICAL

How you can help the global campaign on employment and MS

go make lemonade!”

BRISSIE TO THE BAY

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

MS Life

QUEENSLAND

ORAL TREATMENT JOINS PBS

TREVOR FARRELL: GIVING LIFE BACK

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

Locked Bag 370 Coorparoo DC QLD 4151 ABN 56 731 473 412

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

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

Email: mssociety@msqld.org.au www.msaustralia.org.au/qld

Winter Edition 2009

Giving life back

A YEAR OF EMPLOYMENT AND MS

WHAT A YEAR IT HAS BEEN FOR MS WORLDWIDE

LIFE

QUEENSLAND

OUR PATRON

Her Excellency Ms Penelope Wensley AO SPRING 2013

COMEBACK KID

TABLET TALK

LET’S CRUISE

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

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

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

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

MCKINNON HOUSE FOR RESPITE p.6

PREPARING FOR THE SUMMER HEAT p.7

SUMMER 2013

QUEENSLAND’S PREMIER MAGAZINE FOR PEOPLE LIVING WITH MS

OUR PATRON

I look at MS as a rewarding challenge and not a disability. It is an acceptance of whatever cards are dealt to you in this life. It is your choice on how you are going to manage that hand.

I guess I look at life through different eyes these days and tend to live in the moment.

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.

I am 41 now, lived with MS for over 12 years and I am aware of the realities of this condition, understanding that the time may come when it

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

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

TREVOR FARRELL: GIVING LIFE BACK

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

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

LIFE

QUEENSLAND

TABLET TALK

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

LET’S CRUISE

MOONLIGHT WALK

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

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

P3

COOLING REBATE

P5

State Government introduces a new electricity rebate for

FEATURE STORY

P10

Debbie Smart was diagnosed with MS, but it didn’t stop her

RESEARCH NEWS

26 MAY 2010

Australian of the Year

WORLD MS DAY

GET PHYSICAL

How you can help the global campaign on employment and MS

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

BRISSIE TO THE BAY

Autumn 2010

Giving life back

Life at Annerley The official launch

McKINNON HOUSE

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

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

Jonathan Loraine and Bruce Milligan

LIFE

QUEENSLAND

MS Life

Summer Edition 2009

LIFE

MS Australia – QLD

Spring 2011

Giving life back

QUEENSLAND

Summer edition 2009

Questions about MS?

We’ve got the answers you’re looking for

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

PwMSQ

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

Life at Annerley....

COMPLETED!

MS gene discovery

TREVOR FARRELL: GIVING LIFE BACK

®

Multiple Sclerosis Society of Queensland

Locked Bag 370 Coorparoo DC QLD 4151 ABN 56 731 473 412

is the first oral

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

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

Email: mssociety@msqld.org.au www.msaustralia.org.au/qld

Winter Edition 2009

MS Australia – QLD

Winter 2010

Summer 2011

Find out how you can take part

MS Awareness Week 26 May - 4 June

MS CLINIC CONVERSATIONS

In depth answers to the most frequently asked MS questions

and person with MS

LIFE AT ANNERLEY...

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

FOR THE CAUSE

Meet the Queenslanders supporting MS research and regional services

BOB AND KAREN’S LOVE STORY

MS Life

Giving life back

A YEAR OF EMPLOYMENT AND MS

LIFE

QUEENSLAND

Giving back independence and dignity

MS brought

us together!

BOB AND KAREN’S LOVE STORY

MS Life

MS Australia – QLD

Summer 2011

WHAT A YEAR IT HAS BEEN FOR MS WORLDWIDE

Debbie strives despite MS

A GLOBAL MOVEMENT

PREPARING FOR THE SUMMER HEAT p.7

OUR PATRON

Her Excellency Ms Penelope Wensley AO

are you getting enough?

World MS Day

Debbie strives despite MS

Lisa’s story of motherhood and MS

Educate, Motivate & Advocate

MCKINNON HOUSE FOR RESPITE p.6

MS

Vitamin D

The First Official

are you getting enough?

Our New MS Ambassadors

LEIZA’S STORYp.3

P15

MS Research Australia provides you with the latest

SUMMER 2014

FOR MS

How it can make a difference in managing MS symptoms

How the world united with a common goal: to raise

QUEENSLAND’S PREMIER MAGAZINE FOR PEOPLE LIVING WITH MS

COMEBACK KID

TABLET TALK

LET’S CRUISE

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

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

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

Our New MS Ambassadors

A GLOBAL MOVEMENT

P3

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

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

Lisa’s story of motherhood and MS

Educate, Motivate & Advocate

MOONLIGHT WALK

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

LEIZA’S STORYp.3

P15

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

MCKINNON HOUSE FOR RESPITE p.6

PREPARING FOR THE SUMMER HEAT p.7

OUR PATRON

COMEBACK KID

Her Excellency Ms Penelope Wensley AO

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

TABLET TALK

LET’S CRUISE

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

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

MOONLIGHT WALK

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

MSLIFE. MSLIFE.

SPRING 2013

WINTER 2013

QUEENSLAND’S PREMIER MAGAZINE

MS

EXERCISE

Lisa’s trip to Europe

QUEENSLAND

JOIN THE GLOBAL MOVEMENT! Activities happening all worldMSday around the world!

Storming Parliament House for MS

MS Australia – QLD

Spring 2010

Giving back independence and dignity

MS brought

us together!

Vitamin D

The First Official

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

WINTER 2012

QUEENSLAND’S PREMIER MAGAZINE FOR PEOPLE LIVING WITH MS

AQUATIC

TROTTING

QUEENSLAND’S PREMIER MAGAZINE FOR PEOPLE LIVING WITH MS

Thousands gather to send a clear message to Government: we need an NDIS

TAKING

LIFE

MS Australia – QLD

Autumn 2011

2nd Annual MS National Advocates Conference

it won’t. I am praying that it won’t.

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

MS Life

Questions about MS?

We’ve got the answers you’re looking for

Giving life back

World MS Day

COMEBACK KID

Her Excellency Ms Penelope Wensley AO SPRING 2012

QUEENSLAND’S PREMIER MAGAZINE FOR PEOPLE LIVING WITH MS

GLOBE

STILL POSSIBLE LISA’S STORY

MANOLI’S OUTLOOK ON LIFE

QUEENSLAND

Life at Annerley....

COMPLETED!

ORAL TREATMENT JOINS PBS

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

Winter Edition 2009

Lisa’s story of motherhood and MS

Educate, Motivate & Advocate

LEIZA’S STORYp.3

P15

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

AUTUMN 2013

QUEENSLAND’S PREMIER MAGAZINE FOR PEOPLE LIVING WITH MS

An overview of the work into MS cause and prevention being funded by MS Research Australia

Summer Edition 2009

MS Australia – QLD

MS gene discovery

BREAKTHROUGH MS RESEARCH

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

WHAT A YEAR IT HAS BEEN FOR MS WORLDWIDE

Our New MS Ambassadors

MOONLIGHT WALK

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

WINTER 2013

QUEENSLAND’S PREMIER MAGAZINE FOR PEOPLE LIVING WITH MS

MS Life

who are worse off. I love my life and I look forward to everything that life offers.

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

The official launch

McKINNON HOUSE

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

Spring 2011

Email: mssociety@msqld.org.au www.msaustralia.org.au/qld

are you getting enough?

World MS Day

Debbie strives despite MS

Lisa’s story of motherhood and MS

Educate, Motivate & Advocate

PREPARING FOR THE SUMMER HEAT p.7

ANNA’S POSITIVITY SHINES THROUGH

BRISSIE TO THE BAY

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

Jonathan Loraine and Bruce Milligan

Locked Bag 370 Coorparoo DC QLD 4151 ABN 56 731 473 412

A YEAR OF EMPLOYMENT AND MS

Vitamin D

The First Official

are you getting enough?

Our New MS Ambassadors

MCKINNON HOUSE FOR RESPITE p.6

QUEENSLAND’S PREMIER MAGAZINE FOR PEOPLE LIVING WITH MS

GET PHYSICAL

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

MS Life

Summer edition 2009

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

Winter 2010

WHAT A YEAR IT HAS BEEN FOR MS WORLDWIDE

Vitamin D

The First Official

World MS Day

LEIZA’S STORYp.3

MSLIFE. MSLIFE. MSLIFE. MS MS MSLIFE. MS MSLIFE. MSLIFE. SUMMER 2014

Australian of the Year

WORLD MS DAY

How you can help the global campaign on employment and MS

LIFE

QUEENSLAND

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

FOR THE CAUSE

regional services

MS Australia – QLD

Summer 2011

Giving life back

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Then without announcement, I can be back as the resident celebrity in hospital learning to walk again.

MS CLINIC CONVERSATIONS

In depth answers to the most frequently asked MS questions

and person with MS

LIFE AT ANNERLEY...

GIVING LIFE BACK

The ambitious program to provide integrated and dignified care

BOB AND KAREN’S LOVE STORY

MS Life

QUEENSLAND

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2nd Annual MS National Advocates Conference Storming Parliament House for MS

MS Australia – QLD

Spring 2010

Giving back independence and dignity

MS brought

us together!

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“MS has been very challenging. Not one to do things by halves, I will set off hiking the snowfields in NZ, snorkelling with sharks and turtles in Port Douglas, and cruising the Coast on a Harley…as a passenger.

who are worse off. I love my life and I look forward to everything that life offers.

I am 41 now, lived with MS for over 12 years and I am aware of the realities 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!”

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

MS Life

Questions about MS?

We’ve got the answers you’re looking for

Life at Annerley....

COMPLETED!

MS gene discovery

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

PwMSQ

MS Australia – QLD

Winter 2010

I look at MS as a rewarding challenge and not a disability. It is an acceptance of whatever cards are dealt to you in this life. It is your choice on how you are going to manage that hand.

I guess I look at life through different eyes these days and tend to live in the moment.

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

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.

Summer Edition 2009

LIFE

MS Australia – QLD

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

LIFE AT ANNERLEY...

FOR THE CAUSE

Meet the Queenslanders supporting MS research and regional services

BOB AND KAREN’S LOVE STORY

Summer 2011

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

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

Jonathan Loraine and Bruce Milligan

LIFE

QUEENSLAND

MS Australia – QLD

Spring 2010

Giving back independence and dignity

MS brought

us together!

MS Life

The official launch

McKINNON HOUSE

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

and person with MS

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

MS Life

Questions about MS?

We’ve got the answers you’re looking for

Life at Annerley....

COMPLETED!

MS gene discovery

BREAKTHROUGH MS RESEARCH

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

Then without announcement, I can be back as the resident celebrity in hospital learning to walk again.

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.

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

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

Spring 2011

LIFE

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“MS has been very challenging. Not one to do things by halves, I will set off hiking the snowfields in NZ, snorkelling with sharks and turtles in Port Douglas, and cruising the Coast on a Harley…as a passenger.

I have managed this condition through positive Sharon and Sophia Ball with thinking, meditation, pilates, their puppy Millie swimming, diet and an amazing amount of love and she “ friendship. I had been totally drug free for 7 years opting for natural therapies. However after much resistance, in 2001, I went on injection treatment work properly again which can lessen the severity of relapse. waiting for the gift of a cure.

The official launch

McKINNON HOUSE

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

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

Spring Edition 2009

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l^i] BH Ä VcY ]dl BH ]Vh ^che^gZY ]Zg id a^kZ a^[Z id i]Z [jaa#

Then without announcement, I can be back as the resident celebrity in hospital learning to walk again.

26 MAY 2010

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

LIFE Queensland

Autumn 2010

Giving life back

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GZVYVi]dc VcY ]Zae gV^hZ [jcYh id hjeedgi gZhZVgX] ^cid V XjgZ [dg Bjai^eaZ HXaZgdh^h#

“MS has been very challenging. Not one to do things by halves, I will set off hiking the snowfields in NZ, snorkelling with sharks and turtles in Port Douglas, and cruising the Coast on a Harley…as a passenger.

worldMS

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

A YEAR OF EMPLOYMENT AND MS

MANOLI’S OUTLOOK ON LIFE

FUNDRAISING TO THE EXTREME Help us Kiss Goodbye to MS this May

THE LAUNCH OF

MS ATLAS A

HANNAH’S HEROISM

The most comprehensive collection of information about MS worldwide

pg. 05

pg. 09

Annual Report now available

pg. 02

pg. 13

New after-hours program starts February

Save the date MS Brissie to the Bay 2014

pg. 04

pg. 07

pg. 14

Attend our Annual MS Accommodation Falls prevention Conference and AGM Strategy and balance

LIFE

QUEENSLAND

pg. 12

DisabilityCare Australia update

MS1204_MSLifeSpring13_Art04_ed.indd 1

Spring Edition 2009

MS Life

announced

pg. 10

Hundreds of Queenslanders dive in for MS

winter

pg. 21

New after-hours program at Dutton Park Physio

9/09/13 2:41 PM

pg. 19

What do you know about Ann Langley’s the NDIS? contribution to MS

LIFE Queensland

pg. 10

pg. 11

How ‘Jules’ lives positively with MS

Holistic health and MS

pg. 19

pg. 20

Self-advocacy.

What do you know The road to success about the NDIS?

Spring Edition 2009

LIFE

KdajbZ (! 6j\jhi '%%+

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

MS Australia – QLD

QUEENSLAND

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

Autumn 2011

>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#

Giving life back

REGINA FINDS MS HERO IN HER SON JACK

ELEANOR’S WALK FOR MS

BRENDAN’S PHYSIO JOURNEY WITH MS

HIGHLIGHTS MS WORLDWIDE WORLDW RLD IDE RLDW

HOW WE CELEBRATED MS AWARENESS MONTH

THE LAUNCH OF

MS ATLAS A HIGHLIGHTS MS WORLDWIDE WORLDW RLD IDE RLDW

pg. 6

pg. 10–11

pg. 16

pg. 6

New Carbon Tax Concessions

Heartmoves for MS

Wendy’s contribution to MS

Celebrating World Exercise key MS Day 2012 to your wellbeing

pg. 8

HANNAH’S HEROISM

The most comprehensive collection of information about MS worldwide

LOUISA ON A MISSION

How a young mum won’t let MS hold her back

pg. 5

Facebook and Twitter explained

pg. 12

pg. 8

pg. 8

pg. 12

Jackie’s Kiss for MS

Nominate your MS Hero

Working with MS Workshops

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

pg. 15

pg. 02

pg. 05

pg. 09

Annual Report now available

starts February

BRENDAN’S PHYSIO JOURNEY WIT

Thousands of Queenslanders helped ‘Kiss Goodbye to MS’

pg. 04

pg. 07

pg. 14

Attend our Annual MS Accommodation Falls prevention Conference and AGM Strategy and balance

DisabilityCare Australia update

MS1204_MSLifeSpring13_Art04_ed.indd 1

Spring Edition 2009

MS Life

pg. 08

pg. 04

pg. 12

2013 MS Heroes announced

Exercising in winter

Hundreds of Queenslanders dive in for MS

9/09/13 2:41 PM

LIFE Queensland

Spring Edition 2009

LIFE

KdajbZ (! 6j\jhi '%%+

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

QUEENSLAND

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

Autumn 2011

>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#

Giving life back

>c i]Z nZVgh h^cXZ! H]Vgdc ]Vh ZcYjgZY cjbZgdjh hZg^djh BH ViiVX`h! Wji h]ZÉh cdi VWdji id aZi ]Zg

MS Life

LIFE

MS Australia – QLD

QUEENSLAND

Autumn 2011

Giving life back

Autumn 2010

Giving life back

>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#

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

l^i] BH Ä VcY ]dl BH ]Vh ^che^gZY ]Zg id a^kZ a^[Z id i]Z [jaa#

JOIN THE GLOBAL MOVEMENT! Activities happening all worldMSday around the world!

2nd Annual MS National Advocates Conference

26 MAY 2010

MS CLINIC CONVERSATIONS

Australian of the Year

In depth answers to the most frequently asked MS questions

WORLD MS DAY

Ambassador, National Panel Horse Judge and person with MS

LIFE

QUEENSLAND

Find out how you can take part

MS Awareness Week 26 May - 4 June

Storming Parliament House for MS

Jenni

How you can help the global campaign on employment and MS

GET PHYSICAL

BRISSIE TO THE BAY

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

Life at Annerley The official launch

Multiple Sclerosis Society of Queensland 286 Gladstone Road Dutton Park QLD 4102 Locked Bag 370 Coorparoo DC QLD 4151 ABN 56 731 473 412

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

“MS has been very challenging. Not one to do things by halves, I will set off hiking the snowfields in NZ, snorkelling with sharks and turtles in Port Douglas, and cruising the Coast on a Harley…as a passenger.

Jonathan Loraine and Bruce Milligan

Summer Edition 2009

LIFE

MS Australia – QLD

Giving life back

QUEENSLAND

2nd Annual MS National Advocates Conference

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

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

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

Winter Edition 2009

Giving life back

LIFE

QUEENSLAND

MS CLINIC CONVERSATIONS

MS Australia – QLD

GIVING LIFE BACK

FOR THE CAUSE

The ambitious program to provide integrated and dignified care

WORLD MS DAY

GET PHYSICAL

How you can help the global campaign on employment and MS

BRISSIE TO THE BAY

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

Summer Edition 2009

LIFE

MS Australia – QLD

QUEENSLAND

“MS has been very challenging. Not one to do things by halves, I will set off hiking the snowfields in NZ, snorkelling with sharks and turtles in Port Douglas, and cruising the Coast on a Harley…as a passenger.

2nd Annual MS National Advocates Conference

TREVOR FARRELL: GIVING LIFE BACK

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

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

Winter Edition 2009

Giving life back

LIFE

QUEENSLAND

OUR PATRON

Her Excellency Ms Penelope Wensley AO

COMEBACK KID

TABLET TALK

LET’S CRUISE

MOONLIGHT WALK

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

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

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

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

A GLOBAL MOVEMENT

P3

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

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

WINTER 2013

SPRING 2013

QUEENSLAND’S PREMIER MAGAZINE FOR PEOPLE LIVING WITH MS

AUTUMN 2013

QUEENSLAND’S PREMIER MAGAZINE FOR PEOPLE LIVING WITH MS

QUEENSLAND’S PREMIER MAGAZINE FOR PEOPLE LIVING WITH MS

OUR PATRON

Her Excellency Ms Penelope Wensley AO SPRING 2012

QUEENSLAND’S PREMIER MAGAZINE FOR PEOPLE LIVING WITH MS

TABLET TALK

LET’S CRUISE

MOONLIGHT WALK

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

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

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

EXERCISE

P5

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

Summer Edition 2009

MS Australia – QLD

QUEENSLAND

Q&A WITH MAYOR PAUL PISASALE

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

QUEENSLAND

MS Australia – QLD

OUR PATRON

Her Excellency Ms Penelope Wensley AO

HANNAH’S HEROISM

The most comprehensive collection of information about MS worldwide

pg. 05

pg. 09

pg. 13

Annual Report now available

New after-hours program starts February

Save the date MS Brissie to the Bay 2014

pg. 02

pg. 04

pg. 14

DisabilityCare Australia update

9/09/13 2:41 PM

Multiple Sclerosis Society of Queensland 286 Gladstone Road Dutton Park QLD 4102 Locked Bag 370 Coorparoo DC QLD 4151 ABN 56 731 473 412

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

Find out how you can take part

Life at Annerley The official launch

McKINNON HOUSE

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

Summer Edition 2009

LIFE

MS Australia – QLD

Giving life back

QUEENSLAND

Questions about MS?

We’ve got the answers you’re looking for

Life at Annerley....

COMPLETED!

MS gene discovery

BREAKTHROUGH MS RESEARCH

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

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

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

Winter Edition 2009

Giving life back

A YEAR OF EMPLOYMENT AND MS

LIFE

QUEENSLAND

Giving back independence and dignity

MS brought

us together!

BOB AND KAREN’S LOVE STORY

MS Life

MS Australia – QLD

Summer 2011

Vitamin D

The First Official

are you getting enough?

World MS Day

TABLET TALK

LET’S CRUISE

MOONLIGHT WALK

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

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

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

A GLOBAL MOVEMENT

P3

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

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

Our New MS Ambassadors

Lisa’s story of motherhood and MS

Educate, Motivate & Advocate

LEIZA’S STORYp.3

P15

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

MCKINNON HOUSE FOR RESPITE p.6

PREPARING FOR THE SUMMER HEAT p.7

OUR PATRON

Her Excellency Ms Penelope Wensley AO

COMEBACK KID

TABLET TALK

LET’S CRUISE

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

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

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

WINTER 2013

QUEENSLAND’S PREMIER MAGAZINE

AUTUMN 2013

QUEENSLAND’S PREMIER MAGAZINE FOR PEOPLE LIVING WITH MS

SUMMER 2013

QUEENSLAND’S PREMIER MAGAZINE FOR PEOPLE LIVING WITH MS

SPRING 2012

QUEENSLAND’S PREMIER MAGAZINE FOR PEOPLE LIVING WITH MS

MOONLIGHT WALK

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

QUEENSLAND’S PREMIER MAGAZINE FOR PEOPLE LIVING WITH MS

NDIS RALLY

AQUATIC EXERCISE

TROTTING

FOR MS

HITS THE STREETS

How it can make a difference in managing MS symptoms

Lisa’s trip to Europe

MANOLI’S OUTLOOK ON LIFE

An overview of the work into MS cause and prevention being funded by MS Research Australia

WINTER 2012

QUEENSLAND’S PREMIER MAGAZINE FOR PEOPLE LIVING WITH MS

GLOBE

STILL POSSIBLE LISA’S STORY

SHINES THROUGH

Thousands gather to send a clear message to Government: we need an NDIS

TAKING FUNDRAISING TO THE EXTREME

pg. 08

pg. 04

pg. 12

pg. 10

pg. 21

2013 MS Heroes announced

Exercising in winter

Hundreds of Queenslanders dive in for MS

New after-hours program at Dutton Park Physio

What do you know about Ann Langley’s the NDIS? contribution to MS

pg. 19

JACKIE HELPS KISS GOODBYE TO MS

REGINA FINDS MS HERO IN HER SON JACK

ELEANOR’S WALK FOR MS

BRENDAN’S PHYSIO JOURNEY WITH MS

Thousands of Queenslanders helped ‘Kiss Goodbye to MS’

pg. 07

Attend our Annual MS Accommodation Falls prevention Conference and AGM Strategy and balance

MS1204_MSLifeSpring13_Art04_ed.indd 1

BRISSIE TO THE BAY

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

Spring 2011

LIFE AT ANNERLEY...

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

MS Australia – QLD

Debbie strives despite MS

Lisa’s story of motherhood and MS

COMEBACK KID

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

MSLIFE. MSLIFE. MSLIFE. MSLIFE. MS MSLIFE. MS

SUMMER 2014

FUNDRAISING Help us Kiss Goodbye to MS this May

HOW WE CELEBRATED MS AWARENESS MONTH

THE LAUNCH OF

GET PHYSICAL

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

Jonathan Loraine and Bruce Milligan

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

Winter 2010

WHAT A YEAR IT HAS BEEN FOR MS WORLDWIDE

PREPARING FOR THE SUMMER HEAT p.7

MS

QUEENSLAND’S PREMIER MAGAZINE FOR PEOPLE LIVING WITH MS

Australian of the Year

WORLD MS DAY

How you can help the global campaign on employment and 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

PwMSQ

MS Life

Vitamin D

are you getting enough?

Educate, Motivate & Advocate

MCKINNON HOUSE FOR RESPITE p.6

Thousands gather to send a clear message to Government: we need an NDIS

TAKING

26 MAY 2010

MS CLINIC CONVERSATIONS

In depth answers to the most frequently asked MS questions

LIFE

QUEENSLAND

MS Australia – QLD

dream job

FOR THE CAUSE

Meet the Queenslanders supporting MS research and regional services

BOB AND KAREN’S LOVE STORY

Summer 2011

MS Awareness Week 26 May - 4 June

Storming Parliament House for MS

it won’t. I am praying that it won’t.

Spring 2010

Giving back independence and dignity

MS brought

us together!

MS Life

JOIN THE GLOBAL MOVEMENT! Activities happening all worldMSday around the world!

2nd Annual MS National Advocates Conference

I am 41 now, lived with MS for over 12 years and I am aware of the realities of this condition, understanding that the time may come when it

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

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

MS Life

Questions about MS?

We’ve got the answers you’re looking for

TREVOR FARRELL: GIVING LIFE BACK

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

LIFE

Our New MS Ambassadors

LEIZA’S STORYp.3

P15

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

AWARENESS

HITS THE STREETS

How it can make a difference in managing MS symptoms

COOLING REBATE

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

MS

RALLY

FOR MS

Lisa’s trip to Europe

P3

WINTER 2012

AQUATIC

TROTTING

HIGHLIGHTS MS WORLDWIDE WORLDW RLD IDE RLDW

I look at MS as a rewarding challenge and not a disability. It is an acceptance of whatever cards are dealt to you in this life. It is your choice on how you are going to manage that hand.

I guess I look at life through different eyes these days and tend to live in the moment.

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

Debbie strives despite MS

A GLOBAL MOVEMENT

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

TO THE EXTREME

MS ATLAS A

who are worse off. I love my life and I look forward to everything that life offers.

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

The official launch

McKINNON HOUSE

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

Life at Annerley....

COMPLETED!

ORAL TREATMENT JOINS PBS

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

The First Official

World MS Day

COMEBACK KID

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

QUEENSLAND’S PREMIER MAGAZINE FOR PEOPLE LIVING WITH MS

GLOBE

STILL POSSIBLE LISA’S STORY

MANOLI’S OUTLOOK ON LIFE

An overview of the work into MS cause and prevention being funded by MS Research Australia

BRISSIE TO THE BAY

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

MS gene discovery

BREAKTHROUGH MS RESEARCH

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

Giving life back

A YEAR OF EMPLOYMENT AND MS WHAT A YEAR IT HAS BEEN FOR MS WORLDWIDE

PREPARING FOR THE SUMMER HEAT p.7

SUMMER 2013

QUEENSLAND’S PREMIER MAGAZINE FOR PEOPLE LIVING WITH MS

ANNA’S POSITIVITY SHINES THROUGH

GET PHYSICAL

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

Spring 2011

Winter Edition 2009

Winter 2010

Lisa’s story of motherhood and MS

Educate, Motivate & Advocate

MCKINNON HOUSE FOR RESPITE p.6

MSLIFE. MSLIFE. MSLIFE. MS MS MSLIFE. MSLIFE. MSLIFE. MS SUMMER 2014

Australian of the Year

WORLD MS DAY

How you can help the global campaign on employment and 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

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

FOR THE CAUSE

regional services

MS Australia – QLD

Summer 2011

Our New MS Ambassadors

LEIZA’S STORYp.3

P15

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

LIFE

LIFE AT ANNERLEY...

GIVING LIFE BACK

The ambitious program to provide integrated and dignified care

BOB AND KAREN’S LOVE STORY

MS Life

are you getting enough?

World MS Day

Debbie strives despite MS

Lisa’s story of motherhood and MS

Educate, Motivate & Advocate

PREPARING FOR THE SUMMER HEAT p.7

Vitamin D

The First Official

are you getting enough?

Our New MS Ambassadors

MCKINNON HOUSE FOR RESPITE p.6

QUEENSLAND

MS Australia – QLD

Spring 2010

Giving back independence and dignity

MS brought

us together!

WHAT A YEAR IT HAS BEEN FOR MS WORLDWIDE

Vitamin D

The First Official

World MS Day

LEIZA’S STORYp.3

Then without announcement, I can be back as the resident celebrity in hospital learning to walk again.

MS CLINIC CONVERSATIONS

In depth answers to the most frequently asked MS questions

B_l_d] M_j^ CI

MS Life

Questions about MS?

We’ve got the answers you’re looking for

Life at Annerley....

COMPLETED!

MS gene discovery

ORAL TREATMENT JOINS PBS

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

ABN 56 731 473 412

MS Australia – QLD

A YEAR OF EMPLOYMENT AND MS

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.

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

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

Spring 2011

LIFE AT ANNERLEY...

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

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

WHAT A YEAR IT HAS BEEN FOR MS WORLDWIDE

I have managed this condition through positive Sharon and Sophia Ball with thinking, meditation, pilates, their puppy Millie swimming, diet and an amazing amount of love and friendship. I had been totally drug free for 7 years opting for natural therapies. However after much resistance, in 2001, I went on injection treatment which can lessen the severity of relapse.

The official launch

McKINNON HOUSE

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

Jonathan Loraine and Bruce Milligan

PwMSQ

Meet the Queenslanders supporting MS research and regional services

MS Life Winter 2010

Summer 2011

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

Kate finds her dream job

CCSVI DEBATE

Why MS organisations are proceeding with caution on new treatments

BOB AND KAREN’S LOVE STORY

MS Life

Australian of the Year

In depth answers to the most frequently asked MS questions

LIFE

QUEENSLAND

MS Australia – QLD

Spring 2010

Giving back independence and dignity

MS brought

us together!

Then without announcement, I can be back as the resident celebrity in hospital learning to walk again.

Storming Parliament House for MS

it won’t. I am praying that it won’t.

go make lemonade!”

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

MS Life

Questions about MS?

We’ve got the answers you’re looking for

Life at Annerley....

COMPLETED!

MS gene discovery

BREAKTHROUGH MS RESEARCH

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

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that life offers.

I have managed this condition through positive Sharon and Sophia Ball with thinking, meditation, pilates, their puppy Millie swimming, diet and an amazing amount of love and she “ friendship. I had been totally drug free for 7 years opting for natural therapies. However after much resistance, in 2001, I went on injection treatment work properly again which can lessen the severity of relapse. waiting for the gift of a cure.

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

Spring 2011

“MS has been very challenging. Not one to do things by halves, I will set off hiking the snowfields in NZ, snorkelling with sharks and turtles in Port Douglas, and cruising the Coast on a Harley…as a passenger.

Then without announcement, I can be back as the resident celebrity in hospital learning to walk again.

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

McKINNON HOUSE

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

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

LIFE AT ANNERLEY...

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

A YEAR OF EMPLOYMENT AND MS

pg. 10

pg. 11

pg. 19

How ‘Jules’ lives positively with MS

Holistic health and MS

Self-advocacy.

What do you know The road to success about the NDIS?

pg. 20

HOW WE CELEBRATED MS AWARENESS MONTH

THE LAUNCH OF

MS ATLAS A HIGHLIGHTS MS WORLDWIDE WORLDW RLD IDE RLDW

LOUISA ON A MISSION

How a young mum won’t let MS hold her back

pg. 5

pg. 6

pg. 10–11

pg. 16

pg. 6

Facebook and Twitter explained

New Carbon Tax Concessions

Heartmoves for MS

Wendy’s contribution to MS

Celebrating World Exercise key MS Day 2012 to your wellbeing

pg. 8

pg. 12

pg. 18

pg. 8

pg. 8

pg. 12

Jackie’s Kiss for MS

MS Heroes announced

Nominate your MS Hero

Working with MS Workshops

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

pg. 15

HANNAH’S HEROISM

The most comprehensive collection of information about MS worldwide

pg. 05

pg. 09

pg. 13

Annual Report now available

New after-hours program starts February

Save the date MS Brissie to the Bay 2014

pg. 02

pg. 04

pg. 14

DisabilityCare Australia update

pg. 08

pg. 04

pg. 12

pg. 10

pg. 21

2013 MS Heroes announced

Exercising in winter

Hundreds of Queenslanders dive in for MS

New after-hours program at Dutton Park Physio

What do you know about Ann Langley’s the NDIS? contribution to MS

pg. 19

JACKIE HELPS KISS GOODBYE TO MS

REGINA FINDS MS HERO IN HER SON JACK

ELEANOR’S WALK FOR MS

BRENDAN’S PHYSIO JOURNEY WITH MS

Thousands of Queenslanders helped ‘Kiss Goodbye to MS’

pg. 07

Attend our Annual MS Accommodation Falls prevention Conference and AGM Strategy and balance

MS1204_MSLifeSpring13_Art04_ed.indd 1

Help us Kiss Goodbye to MS this May

pg. 10

pg. 11

pg. 19

How ‘Jules’ lives positively with MS

Holistic health and MS

Self-advocacy.

What do you know The road to success about the NDIS?

pg. 20

pg. 5

pg. 6

pg. 10–11

pg. 16

pg. 6

Facebook and Twitter explained

New Carbon Tax Concessions

Heartmoves for MS

Wendy’s contribution to MS

Celebrating World Exercise key MS Day 2012 to your wellbeing

pg. 8

pg. 12

pg. 18

Jackie’s Kiss for MS

MS Heroes announced

9/09/13 2:41 PM

QUESTIoNS foR oUR MANAGER of SPEcIALIST EDUcATIoN, TIM If you have an MS-related question to ask Tim, our Manager of Specialist Education that can be answered in the next MS Life, please email Tim at mslife@msqld.org.au before 14 April 2014.

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

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 1800 287 367 or visit www.msqld.org.au Acknowledgement: We wish to thank Professor Michael Pender, Gary Allen and MS Queensland CEO Lincoln Hopper for the use of their image on the cover of this publication. Photo by Aaron Tait Photography.

h OU

CONTENTS AUTUMN 2014

fRoMthe CEO

co covER SToRY PG 12 llen per, Gary A Lincoln Hop Michael Pender or and Profess

Queensland researchers make potential MS breakthrough

values in action

I am excited however as I look up at the words that describe the four MS Queensland values in action: “… people really matter to us… we do our best… we never give up… the way to achieve great results is by working together,” I’m excited because I see people striving to make these words a reality by putting these values into action.

Whether it’s with our clients, supporters, researchers or with each other, I witness staff and volunteers of MS Queensland doing their very best to live-out these values every day. Indeed our feature story with Professor Pender and Gary Allen is a perfect example of respect, hope, commitment and collaboration in action! We’re certainly not perfect, but as John W. Gardner once said “… our problem is not to find better values but to be faithful to those we profess.”

So as you read this edition of MS Life packed full of inspiring stories of people living positively with MS, potential breakthroughs in MS research and rewarding opportunities to get involved with MS Queensland, I sincerely hope you also see our values of Respect, Hope, Commitment and Collaboration in action in everything we do for people living with MS. Best wishes,

PAGE 2–3

Letter from the Editors From the CEO

PAGE 4–5

Warm up your winter and go red

PAGE 6–7

Energy update MS Heroes soon to be announced World MS Day nearly here Wellness Wednesdays Membership – join today!

PAGE 8–9

New MS workshops How Vernon lives positively with MS InfoLine celebrating 20 years!

PAGE 10–11 Client in focus Our clients have their say The role of support groups PAGE 12–15 Queensland researchers find potential treatment for progressive MS PAGE 16–17 Events that help people living with MS PAGE 18–19 Share your Living Positively with MS story Self advocacy PAGE 20–21 A day in the life of Glenn Did you know? Supporting physio students Advocacy with Natalie PAGE 22–23 Questions with Tim – about Vitamin D MS resources MS support groups update PAGE 24

Lincoln, CEO

Calendar of events

MS LIFE – AUTUMN 2014

In my office there is a colour poster on the wall next to my computer screen that talks about MS Queensland’s organisational values of Respect, Hope, Commitment and Collaboration. I’m quite sure most workplaces have equally nice posters in lunchrooms and offices (and even as car bumper stickers) describing how great their business, company or organisation wants to become. Sadly, I’ve only seen a handful of workplaces actually live-up to their values, and in some cases I’ve even seen them acting the opposite!

3

MS LIFE â&#x20AC;&#x201C; AUTUMN 2014

4

Kiss Goodbye to MS Ambassador Renee Steenstra, diagnosed with MS in 2011

WARM UP YoUR

WINTER

AND Go

RED

FOR MORE INFORMATION VISIT KISSGooDBYEToMS.oRG OR ‘LIKE’ THE FACEBOOK PAGE AT fAcEBooK.coM/ KISSGooDBYEToMS

To hELP RAISE $800,000 foR MS RESEARch

WhAT ARE YoU GoING To Do To KISS GooDBYE To MS ThIS MAY? runners are competing in fun-runs and lots more, so come and join in the fun and let’s Kiss Goodbye to MS!

Already, many fundraisers have registered to Kiss Goodbye to MS this May and are planning all sorts of amazing activities to raise funds. One inspiring Bunnings group of fundraisers are have chosen to help us planning to walk over Kiss Goodbye to MS this Mother’s 300km across the Day weekend. Last year, over $70,000 UK, local schools was raised, and we want to beat that this are hosting wear year – but we need your help. If you would red mufti days, like to hold a Kiss Goodbye to MS BBQ or cake sponsored

Q BB

AN YoU hELP? c S

stall at your local Bunnings, contact Zoe Chapman on 02 8484 1319 or visit www.kissgoodbyetoms.org

MS LIFE – AUTUMN 2014

Hold your own Kiss Goodbye to MS fundraising event and spread the word on social media. Visit www.KissGoodbyetoMS.org for inspiration and to find out about our Instagram competition, ‘A Photo Every Day in May.’

Wear red lipstick (or anything red) and get sponsored to do so.

B UN NI NG S

Do something outrageous! Last year, Megan Healey (a mum of three who lives with MS) drove her ride-on lawnmower from Melbourne to Sydney and raised over $50,000! What could you do to raise funds towards an MS cure?

5

IT HAS BEEN A LONG HOT SUMMER – PARTICULARLY FOR PEOPLE LIVING WITH MS. With the considerable climb in energy prices last year, and prices increasing by another 13.6% from July this year, we need to keep up-to-date with the changing energy environment to make conscious changes that can positively influence our energy bill.

Most retailers have ‘energy plan’ information on their website to help you compare electricity and natural gas plans. Also worth checking out are DIY home energy checklists.

Energy concessions from the State Government are available for people with MS who hold a Pensioner Concession card or HealthCare card (including the specific Medical Cooling and Heating Electricity concession).

A complete list of concessions can also be found at www.communities.qld.gov.au/communityservices or by calling the Department of Communities on 13 QGov (13 74 68). There are also rebates available from the Federal Government to eligible households across Australia including the Clean Energy Future Household Assistance Package Essential Medical Equipment Payment (e.g. for people living with MS; an air conditioner). For more information, visit www.humanservices.gov.au/customer/services/centrelink/ essential-medical-equipment-payment We would like to share in your understanding, awareness and interaction regarding energy. Please complete our survey at www.msqld.org.au/how-we-help-you/advocacy/ energy and we’ll be sharing the results soon.

MS LIFE – AUTUMN 2014

6

If you receive an unexpected bill or are having problems paying your energy bill, your electricity supplier is there to help. Contact your electricity supplier to explain your situation. If you would like more information on energy please contact Natalie Walsh, our Advocacy Manager on 07 3840 0823 or natalie.walsh@msqld.org.au

MS

HEROES

SooN To BE

ANNOUNCED!

YES, THAT’S RIGHT, OUR MS HEROES AWARDS ARE BACK AND THE TOUGH JOB OF JUDGING IS NOW UNDERWAY. UNDERWAY MS Heroes is our recognition program that gives the MS community an opportunity to thank individual heroes in their lives, raise awareness of MS and join the global movement in the lead up to World MS Day. We’d like to thank everyone that sent us an MS Heroes nomination this year. Find out who the winners are after World MS Day by staying in touch on our website www.msqld.org.au or our Facebook page.

If you have any questions about the MS Heroes program please contact our Awards Team on 07 3840 0825 or awards@msqld.org.au We wish all of this year’s nominees the best of luck!

This year’s MS hero award categories included: 1. Young oung Person of the Year Y 2. Advocate/ Ambassador of the Year Year: 3. Employer of the Y based on the 2014 World MS Day theme ‘Access’ olunteer of the Year Y 4. volunteer arer of the Year 5. carer

THE REALITY IS THAT MORE THAN 2.5 MILLION PEOPLE ARE LIVING WITH MS GLOBALLY. MS IS ONE OF THE MOST COMMON NEUROLOGICAL CONDITIONS AMONGST YOUNG ADULTS IN THE NORTHERN HEMISPHERE. World MS Day was launched five years ago by the MS International Federation (MSIF) with over 200 events in 67 countries. It is held each year on the last Wednesday in May to raise awareness about MS and to strengthen the network of people living with MS across the world.

This year, the date is Wednesday 28 May and the theme is ‘Access.’ The global campaign is to educate and inform people across the world about the different types of access issues faced by people with MS. MSIF will be sharing stories from people with MS about everything from access to treatments and services to mobility and leisure.

You can read more about World MS Day and how you can get involved at www.worldmsday.org

wednesdays

Our Wellness Wednesday programs, held at the Dutton Park Physiotherapy Department, encourage our clients to experience a variety of exercise programs, providing them with the confidence to self-manage their exercises on completion of the program in transitioning to groups offering similar programs in their local communities.

The Wellness Wednesday program was introduced in 2013 featuring an eight week Feldenkrais course. This initial program proved to be extremely successful, and was followed earlier this year with a Heartmoves for MS ten week course. This course was also extremely successful and was fully booked in advance.

The Wellness Wednesdays programs are designed to provide clients with beneficial, safe, fun, new exercise experiences in a positive and friendly social environment and to motivate them to say, “yes, I am going to explore exercise options in my community.”

To register your interest in future Wellness Wednesday programs for 2014, please contact our Physiotherapy Department Receptionist and Administrative Assistant Linda Wilson-Marks on 07 3840 0841.

LIFE

Autumn Edition 2009

LIFE

Queensland

LIFE. MS Life

AUTUMN 2012

QUEENSLAND

QUEENSLAND’S PREMIER

Giving life back

MAGAZINE FOR PEOPLE

LIVING WITH MS

Winter 2011

LIFE

NoT T A MEMBER?

MSLIFE. MS Life AUTUMN 2012

QUEENSLAND’S PREMIER

Giving life back

MS

Volume 3 Spring Edition, September 2008

MAGAZINE FOR PEOPLE

LIVING WITH MS

Winter 2011

MS Australia – QLD

AWARENESS THIS ISSUE CEO’s Desk

2

Brissie to the Bay

3

Introducing Facebook

EMPLOYMENT AND

pg. 8

pg. 8

Nominate your MS Hero

Working with MS Workshops

pg. 12

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

MS AND SES

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

& taking control

7 8

An 11 year old’s idea...

9

MS Readathon

10 11

Lisa & Sandy tell...

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

How a young mum won’t

let MS hold her back EMPLOYMENT AND

pg. 8

pg. 8

Nominate your MS Hero

LIFE

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Employment Power

LOUISA ON A MISSION

“We Have MS,

Spring Edition 2009

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Giving life back

Ambassadors Needed

VIRAL MS CAMPAIGN

PwMS Josie Montano helps during Queensland’s floods and cyclones

LIFE Queensland

QUEENSLAND

support you

5 6

Lynette Walks Again Events

Employment Power

.

“We Have MS,

ABN 56 731 473 412

LIFE

Services to

4

Portrait of Posterity Work of Aart

for brissie to the bay

3800 CYCLIST PEDAL FOR A CURE!

Working with MS Workshops

pg. 12

WORLD MS DAY

GET PHYSICAL

How you can help the global campaign on employment and MS

BRISSIE TO THE BAY

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

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

Bruce Milligan

MS Life Spring 2010

LIFE AT ANNERLEY...

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

Email: mssociety@msqld.org.au www.msaustralia.org.au/qld

Giving back independence

MS Life

Kate finds her GIVING LIFE BACK

regional services

Multiple Sclerosis Society

of Queensland

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

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 ®

Lisa’s story of motherhood and MS

Educate, Motivate & Advocate

OUR PATRON

PREPARING FOR THE SUMMER HEAT p.7

Her Excellency Ms Penelope

COMEBACK KID

Wensley AO

TABLET TALK

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

LET’S CRUISE

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

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

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

MS Life

LIVING WITH MS

Winter 2011

RESEARCH NEWS

MCKINNON HOUSE FOR RESPITE p.6

Her Excellency Ms Penelope

COMEBACK KID

Wensley AO

TABLET TALK

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

LET’S CRUISE

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

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

A GLOBAL MOVEMENT

MS

MAGAZINE FOR PEOPLE

pg. 8

Working with MS Workshops

pg. 12

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

PwMS Josie Montano helps during Queensland’s floods and cyclones

LIFE

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

let MS hold her back EMPLOYMENT AND

pg. 8

Working with MS Workshops

pg. 12

MS gene discovery 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

QUEENSLAND

P10

RESEARCH NEWS

P15

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

MS Australia – QLD

around the world!

Australian of the Year WORLD MS DAY

GET PHYSICAL

How you can help the global campaign on employment and MS

LIFE

MS Australia – QLD

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

BRISSIE TO THE BAY Brisbane’s biggest charity

and dignity

BOB AND KAREN’S LOVE

Kate finds her dream job FOR THE CAUSE

PwMSQ

Meet the Queenslanders supporting MS research and regional services

STORY

MS Australia – QLD

MS Life Winter 2010

Spring 2011

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 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

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

MS Life Spring 2010

MS Australia – QLD

Questions about MS?

We’ve got the answers you’re looking for

LIFE AT ANNERLEY...

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

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

A YEAR OF EMPLOYMENT AND MS

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

Summer Edition 2009

MS Australia – QLD

QUEENSLAND

MS Australia – QLD

WHAT A YEAR IT HAS BEEN FOR MS WORLDWIDE

part

The official launch

McKINNON HOUSE

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

MS Life

QUEENSLAND

Life at Annerley....

COMPLETED!

Giving back independence

Summer 2011

Find out how you can take

MS CLINIC CONVERSATIONS

In depth answers to the most frequently asked MS questions

it won’t.

Summer edition 2009

MS brought

us together!

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

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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!”

2nd Annual MS National Advocates Conference

Storming Parliament House for MS

waiting for the gift of a cure.

I am 41 now, lived with MS for over 12 years

it won’t. I am praying that go make lemonade!”

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

Spring 2010

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

MS Life

MS AND SES PwMS Josie Montano helps during Queensland’s floods and cyclones

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that life offers.

I have managed this condition through positive thinking, meditation, pilates, Sharon and Sophia Ball with swimming, diet and an their puppy Millie amazing amount of love and friendship. I had been totally she “ drug free for 7 years opting for natural therapies.

However after much resistance, in 2001, I went on injection treatment which can lessen the severity work properly again of relapse.

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

MS Life

Questions about MS?

We’ve got the answers you’re looking for

Giving life back

MS AWARENESS WEEK

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#

Then without announcement, I can be back as the resident celebrity in hospital learning to walk again.

part

Bruce Milligan

QUEENSLAND

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

KdajbZ (! 6j\jhi '%%+

MS Australia – QLD

Autumn 2011

Giving life back

Find out how you can take

Summer Edition 2009

LIFE

MS

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 Queensland

QUEENSLAND

id bdkZ [gdb i]Z cZX` Ydlc#

GZVYVi]dc VcY ]Zae gV^hZ [jcYh id hjeedgi gZhZVgX] ^cid V XjgZ [dg Bjai^eaZ HXaZgdh^h#

l^i] BH Ä VcY ]dl BH ]Vh ^che^gZY ]Zg id a^kZ a^[Z id i]Z [jaa# “MS has been very challenging. Not one to do things by halves, I will set off hiking the snowfields in NZ, snorkelling with sharks and turtles in Port Douglas, and cruising the Coast on a Harley…as a passenger.

Activities happening all around the world!

26 MAY 2010

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

FEATURE STORY

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

Employment Power

LOUISA ON A MISSION

How a young mum won’t pg. 8

Nominate your MS Hero

Spring Edition 2009

KdajbZ (! 6j\jhi '%%+

Giving life back

worldMSday

Jonathan Loraine and

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

P5

Winter 2011

Services to

support you

& taking control

MS AND SES

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

LIFE

Autumn 2010

QUEENSLAND

JOIN THE GLOBAL MOVEMENT!

LIFE AT ANNERLEY...

COOLING REBATE

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

MS Life

LIVING WITH MS

2 3 4 5 6 7 8 9 10

let MS hold her back EMPLOYMENT AND

pg. 8

Nominate your MS Hero

MS Australia – QLD

MS Australia – QLD

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

P3

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

QUEENSLAND’S PREMIER

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

How a young mum won’t

But It Doesn’t Have Us!”

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

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

A YEAR OF EMPLOYMENT AND MS

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

MS Australia – QLD

Debbie strives despite MS

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

Autumn Edition 2009

LIFE

QUEENSLAND Volume 3 Spring Edition, September 2008

Lisa & Sandy tell...

Autumn 2011

MS CLINIC CONVERSATIONS

In depth answers to the most frequently asked MS questions

WORLD MS DAY

FOR THE CAUSE Meet the Queenslanders supporting MS research and regional services

Winter 2010

about MS this May

Services to

support you

& taking control

MS Life

2nd Annual MS National Advocates Conference

Storming Parliament House for MS

How you can help the global campaign on employment and MS

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

MS Life

Lisa’s story of motherhood and MS

Educate, Motivate & Advocate

OUR PATRON

PREPARING FOR THE SUMMER HEAT p.7

LIFE

Queensland

MS Australia – QLD

2 3 4 5 6 7 8 9 10 11 12

Giving life back

Why MS organisations are proceeding with caution on new treatments

STORY

MS Australia – QLD

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

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 Ambassadors Needed Notice of AGM

QUEENSLAND

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

MS Australia – QLD

Kate finds her dream job CCSVI DEBATE

BOB AND KAREN’S LOVE

Summer 2011

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

Volume 3 Spring Edition, September 2008

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

LIFE

Spring 2010

and dignity

MS Life

are you getting enough?

Our New MS Ambassadors MCKINNON HOUSE FOR RESPITE p.6

for brissie to the bay

3800 CYCLIST PEDAL FOR A CURE!

Giving back independence

MS brought

us together!

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

Winter Edition 2009

QUEENSLAND

Vitamin D

The First Official

World MS Day

LEIZA’S STORYp.3

LIFE

Queensland

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

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

LIFE

Giving life back

Ambassador, National Panel Horse Judge and person with MS

MS AND SES PwMS Josie Montano helps during Queensland’s floods and cyclones

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

MS Life

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

Winter 2010

WHAT A YEAR IT HAS BEEN FOR MS WORLDWIDE

Jenni

MS AWARENESS WEEK

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#

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

Bruce Milligan

Summer Edition 2009

QUEENSLAND

LIFE AT ANNERLEY...

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

FOR THE CAUSE

The ambitious program to provide integrated and dignified care

STORY

MS Australia – QLD

Summer 2011

“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!”

The official launch

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

Jonathan Loraine and

and dignity

BOB AND KAREN’S LOVE

Winter Edition 2009

QUEENSLAND

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

MS Australia – QLD

MS brought

us together!

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

LIFE

Giving life back

BRISSIE TO THE BAY

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

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

Life at Annerley....

COMPLETED!

MS gene discovery

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

GET PHYSICAL

How you can help the global campaign on employment and MS

MS Australia – QLD

Questions about MS?

We’ve got the answers you’re looking for

A YEAR OF EMPLOYMENT AND MS

Australian of the Year WORLD MS DAY

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

Summer Edition 2009

QUEENSLAND

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

LIFE Queensland

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#

MS CLINIC CONVERSATIONS

In depth answers to the most frequently asked MS questions

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

Locked Bag 370 Coorparoo DC QLD 4151 ABN 56 731 473 412

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.

McKINNON HOUSE

Coast

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

MS

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

MS Australia – QLD

Autumn 2011

Giving life back

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 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!”

MS CLINIC CONVERSATIONS

In depth answers to the most frequently asked MS questions

Ambassador, National Panel Horse Judge and person with MS

JOIN TODAY!

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

FOR THE CAUSE

PwMSQ

Meet the Queenslanders supporting MS research and regional services

STORY

MS Australia – QLD

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

Are you a member of the

HAVE YOUR SAY!

Help support MS Queensland and it’s good work!

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.

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

Membership with us, which is just $33 a year, helps us to provide more information and education about MS and leading MS research. To become a member or renew your membership for the 2013–14 financial year please contact us at mssociety@msqld.org.au or call 07 3840 0888.

Pictured: 2013 Young Person of the Year Hannah Boag

2 3

Autumn Edition 2009

QUEENSLAND

THIS ISSUE CEO’s Desk Brissie to the Bay

LIFE

Queensland

MS Australia – QLD

Volume 3 Spring Edition, September 2008

New Record Multiple Sclerosis Society of Queensland

Spring Edition 2009

2nd Annual MS National Advocates Conference

Storming Parliament House for MS

Jenni

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

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 – AUTUMN 2014

WoRLD MS DAY NEARLY hERE

wellness

7

FOR MORE INFORMATION ON PLANNED WORKSHOPS FOR 2014, CALL OUR INFOLINE ON 1800 177 591 OR VISIT OUR WEBSITE WWW.MSQLD.oRG.AU

MS

NEW WORKSHOPS

AvAILABLE IN QUEENSLAND DURING 2014 READY PROGRAM Ipswich (7 week program), commencing 1 May 2014 Program description: READY (Resilience for Adults Every Day) is a group-based program developed by the University of Queensland that aims to help you build skills in managing the challenges of everyday life and living with MS. Participants in previous courses have experienced reductions in stress, and improvements in their ability to cope with difficult situations and difficult emotions. MS Queensland will be offering the program free of charge for clients living with MS in the Ipswich region.

MS LIFE – AUTUMN 2014

8

FATIGUE SELF-MANAGEMENT WORKSHOPS

WORKING WITH MS WORKSHOPS

Upcoming workshops (April – June): Townsville, Kingaroy, Gold coast, Logan, Brisbane South

Upcoming workshops (April – June): Brisbane West, Toowoomba

Program description: Fatigue is one of the most common symptoms experienced by people living with MS. This workshop provides an opportunity to share experiences and explore strategies to assist in managing MS fatigue. The morning is interactive in a group environment. Participants will meet others living with MS and discuss research based strategies to assist with day-to-day living.

Program description: This workshop provides people with MS to make informed decisions about employment and planning for the future. It best suits those currently employed, seeking employment or people who have recently left their place of employment due to MS related issues. Topics include: the pros and cons of disclosure, workplace rights and responsibilities, support services, superannuation and insurance.

HOW VERNON LIvES PoSITIvELY WITh MS

“Well, Vernon. You are too sick to do the last couple of tests we wanted to do, but we are fairly confident that you have MS so the best thing to do is to go home and get on with your life.”

20

cELEBRATING ELEBRATING

YEARS

So spoke my neurologist in 1989. The advice to go home and get on with life was, as it turned out, excellent. The problem was that I did not know anything about MS and what it meant for my future. Fortunately, the Sister on duty suggested I make contact with MS Queensland, and that advice stuck in my brain.

Unfortunately, my time in the call centre came to an end when jobs were moved around and so I had to be retired on medical grounds (I was over 55).

Was I on the scrap heap? The thought did not even enter my head.

Another aspect of my life saw my move from Adelaide to Cairns and me doing whatever I could with the Cairns Choral Society, the Trinity Beach Lions Club (TBLAMS), a church and the MS community there. In 2009, I made a presentation as the guest speaker to my Lions Club. Most of the membership did not know that I had any medical problem at all and were blown away by what I had to say. Since that time, the TBLAMS Gym Team has been created and members of the Trinity Beach Lions Club have taken the lead in bringing a very successful MS Swimathon to Cairns. Perhaps most importantly, the Lions Club instigated an exercise program at the local PCYC gym for people living with MS, which has shown itself to be an excellent, beneficial program.

Over the years I have been a public face for MS; for the campaign offering electricity subsidies to people who have a medical condition requiring air conditioning, for the MS Swimathon, and more recently, for a change to the way funding for the Cairns Base Hospital is provided – specifically with respect to the appointment of more than one neurologist for the area. I have made contact with local politicians and am able to speak to all of them with ease, at both federal and state levels.

One might say that I enjoy my life and it is of benefit to my community. I believe I have so much left to do and will keep doing it until I am incapable of finding a way to get it done.

I expect that will be in many years’ time.”

Vernon has recently moved to South Australia. We thank him for his invaluable support and dedication to the North Queensland MS community.

DID YoU KNoW oUR INfoLINE WAS INTRoDUcED 20 YEARS AGo? In 1994, MS Queensland first introduced our 1800 phone service to provide information and support to people living with MS. Our InfoLine is a point of contact where anyone can access up-to-date, useful information on MS. Callers can conveniently find answers in one place; whether you are newly diagnosed with MS, a carer, family member, or someone from the public with an interest in the condition. During 2012–13, our Information and Resources Coordinators answered over 2,400 enquiries from the community.

We also distributed over 17,000 resources on MS-related information, and facilitated more than 19,800 electronic downloads from our online resource centre at www.msqld.org.au Today, our InfoLine is run by both Nicky Atkinson and Rachel Blom and we thank these ladies for their commitment to helping the MS community.

If you have an MS-related question or would like information on our services, you can contact our InfoLine on 1800 177 951 between 8:30am and 4:30pm, Monday to Friday.

MS LIFE – AUTUMN 2014

From 1989 to 1995 I worked as a teacher until the impact of fatigue took its toll and I decided I needed to look at other employment opportunities. After about five years working in a call centre my productivity declined and I was unable to complete work as fast as what was required. The manager of the call centre became aware of my diagnosis and created a suitable position for me which was also of significant benefit to the company.

9

oUR

cLIENTS hAvE ThEIR SAY SOUTH WEST QUEENSLAND CLIENT SURVEY SUCCESS

TRISh fRoM TooWooMBA Trish Schultz was diagnosed with MS in 2000, and lives on a farm property in Pittsworth with her husband Garry. Although she lives in the country (a 40 minute drive outside of Toowoomba), Trish has been extensively involved with her local support group for more than a decade. She has held the role of Treasurer for a number of years and is now the President of the Toowoomba MS Support Group.

Despite the travel time, and with the encouragement from her Regional Service Coordinator (RSC), Trish and her daughter Marjorie (who also lives with MS) have participated in number of MS Queensland facilitated workshops.

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In 2012, Marjorie attended one of our fatigue selfmanagement courses and found the workshop highly beneficial in terms of assisting her to manage her MS-related fatigue and day-to-day living, so much so that she encouraged her mother to attend one of our workshops. Having been diagnosed with MS 13 years ago, Trish was unsure of how our chronic disease management workshop could benefit her. “I now understand how important it is for people with MS to keep up with the latest treatments and strategies available to help manage the disease, no matter how long ago they were diagnosed.”

Today, Trish says “knowing that Janice (my RSC) is available anytime to talk to me about my MS and advise me on what help is available, is invaluable to me and my family.”

For more information on our range of services and how we can help you manage your MS, please contact our InfoLine on 1800 177 591 or visit our website www.msqld.org.au

Towards the end of 2013 our South West Queensland Regional Service Coordinator, Janice Wheeler, surveyed more than 200 clients from the Ipswich and Toowoomba regions to gain feedback on their specific MS needs. The feedback helped us plan information workshops and sessions for the coming year. The survey showed people with MS were most interested in: • information sessions covering exercise and physiotherapy, cognition and memory, fatigue, depression and continence; and • coffee and chat sessions with other people living with MS in the area.

Based on the feedback, workshops in Ipswich and Toowoomba were planned for the next 12 months. To date MS Queensland has partnered with other organisations in delivering: • a continence information session • an exercise and physical activity workshop; and • the first coffee and chat session in Springfield Lakes.

In 2014 we will be delivering another round of workshops including: • a fatigue self-management course for Toowoomba • a second information session on continence • an Employment and MS workshop; and • the Ready resilience program in the Ipswich area.

The success of these client surveys have proven invaluable for MS Queensland. Not only have our Services team gained knowledge of the interests and concerns of our clients in the South West Queensland region, it’s also provided us with the opportunity to plan and deliver the relevant workshops and support networks for our MS community in 2014.

These surveys have now been distributed in three regions throughout the State. If the opportunity arises in your region make sure you take every opportunity to have your say. This will greatly assist us in delivering the most relevant services to your MS community.

ThE RoLE of

SUPPORT While each Support Group may function in their own unique way, the spirit of fun, friendship (and coffee) is what continues to bring each MS Queensland Support Group together.

Some of our Support Groups have been officially running for over 30 years – and some for just over a year. No matter how long a Support Group has been gathering, all groups across Queensland certainly welcome new members.

At the inaugural People with MS Support Group Forum in November last year, representatives from each Support Group in Queensland

came together to share information about why their group exists. When the initial MS Support Group was initiated by Ann Langley and her group of supporters, little did they know the foundation they created at MS Queensland, together with the connections, would span decades and evolve from providing support to fostering lifelong friendships.

On our website www.msqld.org.au you will find a list of Support Groups.

Some refer to themselves as an informal social group, while others offer a peer support and social group with a structured agenda and a host of various guest speakers invited throughout the year. Fundamentally, they all exist to meet for a coffee and a chat and for support, whether they are the person living with MS, a carer, or family member.

Last year the People with MS Support Group Forum, Support Group members spoke about what they’ve taken from their group since joining. Comments included: ‘lifelong friendships have been made,’ ‘met so many great people,’ ‘great encouragement they get from one another,’ ‘share in the benefits of exercise,’ ‘our goal is to bring people out of isolation,’ and ‘MS doesn’t have to be about the disease.’

If there is a Support Group in your area it’s certainly worth a visit, and if not, perhaps you can consider starting your own – it only takes one person and a little bit of passion and determination. For more information contact our InfoLine on 1800 177 591 or visit www.msqld.org.au

MS LIFE – AUTUMN 2014

JUST LIKE NO TWO PEOPLE LIVING WITH MS ARE THE SAME, NO TWO SUPPORT GROUPS ARE THE SAME.

11

FEATURE STORY

QUEENSLAND RESEARchERS fIND PoTENTIAL TREATMENT foR PRoGRESSIvE MS

MS LIFE – AUTUMN 2014

12 Photo courtesy of Lite n’ Easy

QUEENSLAND RESEARCHERS FIND POTENTIAL TREATMENT FOR PROGRESSIVE MS

IT HAPPENED IN OUR VERY OWN BACKYARD AND IT’S ALREADY RECEIVED INTERNATIONAL MEDIA ATTENTION. IN FEBRUARY THIS YEAR, THE InTERnATIOnAL JOuRnAL OF MuLTIPLE SCLEROSIS PUBLISHED PROFESSOR MICHAEL PENDER’S RESEARCH SUGGESTING THAT CONTROLLING INFECTION WITH THE EPSTEIN-BARR VIRUS (EBV) – THE MOST COMMON CAUSE OF GLANDULAR FEVER – MAY BE BENEFICIAL IN TREATING SECONDARY PROGRESSIVE MS.

ABOUT THE RESEARCH The study, led by Professor Michael Pender from The University of Queensland, used a new, drug-free treatment process that could potentially treat progressive MS and other chronic autoimmune diseases in the future.

To test his theory, Professor Pender and collaborators from the QIMR Berghofer Medical Research Institute, The University of Queensland School of Medicine and The Royal Brisbane and Women’s Hospital administered a six week treatment course to wheelchair-bound Queensland dad, Gary Allen. Gary began to experience significant clinical improvements in his MS symptoms within two weeks and is still seeing the benefits one year on.

including Channel 7, The Australian, The Courier Mail, The Medical Observer and ABC Radio National – now all available on our website www.msqld.org.au In clinical trials, a single reported case such as this, even if it appears to be beneficial to the person treated, does not indicate that the outcome can be generalised. Further controlled trials are needed involving larger numbers of patients before a conclusion can be drawn about the efficacy of the treatment. *

This experimental therapy targeting EBV, had no negative effects on Gary and within weeks he experienced a significant reduction in fatigue and painful spasms, an improvement in thinking, memory, attention and hand function, and increased productivity at work. There was also reduced disease activity on his MRI brain scan. At his latest follow-up, Gary also had improvement in the movement of his legs.

Professor Pender’s research has already received significant international and national media coverage

MS LIFE – AUTUMN 2014

The treatment, developed at QIMR Berghofer Medical Research Institute by Professor Rajiv Khanna, involves collecting a person’s immune cells – known as T cells – from the patient’s blood, growing them in a laboratory along with an EBV vaccine and then transferring the cells back to the patient by intravenous infusion. The treatment does not require the use of any drugs. Professor Khanna has successfully led clinical trials to establish the safety of the treatment in other diseases.

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FEATURE STORY

MEET PROFESSOR PENDER The man who led this research is Professor Michael Pender, Director of the Multiple Sclerosis Research Centre at The University of Queensland.

Professor Pender spent 33 years researching MS and the last 12 years exploring the role of EBV in the development of MS. The latest research of Professor Pender and his team could possibly lay the foundation for the prevention and effective treatment of MS. His interest in the human brain began at a young age when one of his uncles gave him a book about the nervous system. From Grade 8 Professor Pender studied intensely about science biology, and at the age of just 14 on a visit to the Brisbane Museum with his father, he saw a brain in a bottle and instinctively knew that he would study the human brain for the rest of his life.

But his research interest into MS didn’t begin until his fourth year at University in the pathology museum where he saw the brain of a person with MS. “I could see the pink-grey sharply defined demyelinated areas of the brain. After my university studies I knew I wanted to specialise in neurology and to do research.”

Whilst training in neurology, Professor Pender met his wife Philippa at St Vincent’s Hospital in Sydney. They had their first daughter Katie and moved to London to further Professor Pender’s research into MS. Here, he and his new family arrived with no income and a 10 day old baby; it was a risk, but it was the leading hospital to begin research in neurology.

“There were a lot of barriers but I was very determined and persistent.

The most important lesson I learnt there was it is absolutely fundamental to always have a hypothesis. Here, I learnt to think scientifically.”

As you can see Professor Pender is very passionate about his work and his mission to help prevent and treat MS. In his own words he said, “I don’t believe in chance – every important decision I’ve made on this theory, and throughout my 33 years researching MS, I have always prayed for the guidance and strength I need. Then opportunities come along.”

MORE INFORMATION? MS LIFE – AUTUMN 2014

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We’ll be keeping the MS community informed on any major developments into Adoptive Immunotherapy for Progressive MS via our website and e-newsletter MS Insight. To register for updates please visit our website www.msqld.org.au

QUEENSLAND RESEARCHERS FIND POTENTIAL TREATMENT FOR PROGRESSIVE MS

Photo courtesy of The Courier-Mail

...SUMMED UP IN ONE WORD, GARY PERSONIFIES RESILIENCE.

MEET GARY ALLEN

In 1994, Gary started experiencing what he knows now were MS symptoms. His balance was affected, along with pins and needles and weakness in his legs.

It wasn’t until 2000 when Gary underwent an MRI, that he received his diagnosis of MS. He initially lost touch with MS Queensland and our services, having moved through the stages of denial and trying to keep himself extremely busy in his job at Queensland University of Technology (in 2003 he moved to working for Griffith University).

Becoming wholly reliant on a wheelchair in 2007, Gary has continued to work as a Policy Officer for Griffith University but has reduced his ‘in office’ hours over the years. In 2011 Griffith University was awarded an MS Heroes award for their support of Gary through implementing work-from-home arrangements, modifying his duties, purchasing special equipment and making various workplace modifications. These have all had a

positive influence on Gary’s sense of self-worth and his ability to stay working in an industry he loves.

Summed up in one word, Gary personifies resilience.

Despite being wheelchair bound, Gary hasn’t let the many challenges presented by MS rule his life and when he was asked by Professor Pender to trial the new EBV treatment he knew he had to say ‘yes.’

His wife Renay and 10 year old son, Connar have also enjoyed the improvements seen in Gary from his recent treatment; allowing them to recently take their first family holiday in ten years.

In Gary’s words, “no one would choose to be diagnosed with a chronic medical condition or relish the prospect of living with an illness with an uncertain prognosis. One of the hardest parts of a MS journey is the uncertainty – no one can show you a chart and say, “you are here, and in ten years you’ll be there.“

MS LIFE – AUTUMN 2014

Gary Allen, a 43 year old father and husband from Samford, is the patient who recently received Professor Pender’s experimental treatment to halt the progress of MS.

15

coMMUNITY fUNDRAISING oPPoRTUNITIES Throughout 2013 we had a range of amazing fundraisers out there in the community raising awareness and funds for MS Queensland. People from all walks of life; those living with MS, affected by MS or simply wanting to help a worthy cause. They all share the same passion and drive to empower and educate people about MS. Now we’re looking for more wonderful people across Queensland to join us in the fight against MS. Fundraising can be easy and you can tailor it to suit your own interests, commitments and strengths. Almost anything can be turned into a fundraiser: • love a challenge? Run a marathon, be an ironman, trek a mountain, cycle through the states – we can help you setup your own personal online fundraising page to collect donations; • you can even take fundraising to work with you by

DIVE INTO AN MS SWIMATHO N NEAR YOU MS LIFE – AUTUMN 2014

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hosting a ‘Dress in Red’ MS morning tea, BBQ or Friday social drinks. Ask your employer to gift-match the donations made by staff; • make your birthday, wedding, or anniversary even more special by asking your guests to make a gift donation to provide support to MS Queensland; or • hold a cake bake sale, make a quilt to raffle, collect gold coin donations, or ask MS to be the charity of choice at your community club, bowls club or sports club.

For more information on how to become a community fundraiser contact Julie Hanlon, our Fundraising Coordinator on 07 3840 0887 or email julie.hanlon@msqld.org.au

Autumn brings with it a wave of MS Swimathons in North Queensland. With swims taking place in Rockhampton on Saturday 10 May, Mackay on Sunday 18 May and Townsville on Sunday 1 June, there are plenty of opportunities for keen swimmers in North Queensland to dive into a pool and swim your heart out to raise funds to support people living with MS. We’ll be hosting a total of seven swims this year and aim to raise over $300,000 which will go directly towards support services for those Queenslanders living with MS and their families. If you or anyone you know is keen to participate in any of our MS Swimathons across the state, jump online and register yourself, register a team or sponsor someone you know who is swimming. To find a location near you, visit www.MSswimathon.com.au

S A VE T HE DATE

MS MOONLIGHT WALK We’re excited to announce the 2014 MS Moonlight Walk will be held on friday 17 october this year! Put the date in your diary and get prepared for a fantastic moonlight walk around the Brisbane River.

Last year’s walk was a huge success, raising over $500,000 to support people living with MS. We now need your support to help make this year’s walk bigger than ever. For more information visit www.MoonlightWalk.com.au

ENERfLEX

Brissie to the Bay

The Enerflex MS Brissie to the Bay bike ride has been part of the Brisbane cycling scene for over two decades and is loved for its fun and friendly atmosphere. On Sunday 22 June nearly 6,000 riders will be slipping into their lycra to take part in the annual ride to fight MS. Now in its 24th year, the ride has definitely come a long way since its humble beginnings, when it attracted a modest 80 riders back in 1980. Not only is the ride a fun day out on the bike, our amazing riders also raise money to help better the lives of all Queenslanders living with MS. This year to celebrate how far we’ve come, we’re aiming to break more fundraising records and raise a sensational $1.5 million for people living with MS. But we can’t do this without your help! You can join in the challenge by riding one of four exciting distances. There is the family friendly 10km course around the Brisbane Riverside, the scenic 25km ride to Balmoral, the classic 50km to Wynnum or the challenging 100km course to Wellington Point.

Register today and take advantage of discounted entry at www.BrissietotheBay.com.au

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 – AUTUMN 2014

Ideas move more

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ShARE YoUR

STORY

2013 Liv

ing Positiv ely and May Xxwinner Emily Fo or Pisasa ster le

‘LIvING PoSITIvELY WITh MS’ WITh MAYoR PAUL PISASALE LIVING POSITIVELY WITH MS IS A LIFELONG MANTRA FOR MANY PEOPLE LIVING WITH MS. LIKE EVERYTHING, THESE POWERFUL WORDS MEAN DIFFERENT THINGS TO DIFFERENT PEOPLE. For some it may mean adopting a healthier lifestyle, for others it may mean learning more about MS through reading MS Life.

We all have different types of MS, we’re all different ages, and we’ve all been living with MS for different lengths of time.

This year we’d love to hear from you and allow others to share how you live positively with MS. All contributors will be invited to share afternoon tea with Mayor Pisasale and all other story contributors, and one lucky selected person will be sharing lunch with Mayor Pisasale and MS Queensland Advocacy Manager Natalie Walsh.

A few years ago, our wonderful MS Ambassador Mayor Paul Pisasale spoke of how he lives positively with MS and how this lifestyle mantra has assisted him. Mayor Pisasale then called for the MS community to share how they live positively with MS.

In 500 words or less, we would love to hear your Living Positively with MS story. Please send your Living Positively with MS story by Friday 11 April to our Advocacy Manager Natalie Walsh at natalie.walsh@msqld.org.au or call 07 3840 0823 if you have any queries.

2014 0213 MS Queensland CAPS OL.pdf 1 14/02/2014 5:01:21 PM

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It has been a delight to welcome stories sharing how people across Queensland from different backgrounds, lifestyles and ages live positively with MS.

IF YOU LIVE WITH MS, YOU SHOULDN’T UNDERESTIMATE THE IMPACT SELF-ADVOCACY CAN HAVE ON YOUR WELLBEING, SELF-CONFIDENCE AND PRIDE.

SELF ADVOCACY ThE RoAD To SUccESS

Christa as they demonstrated the danger of crossing the intersection at Park Road. Christa also supplied the two council representatives with special glasses that replicated a visual impairment – demonstrating what it feels like to cross the road for Ronda on a daily basis.

Recently, while trying to manoeuvre her mobility scooter along the crossing of Annerley and Park Roads at Dutton Park, Ronda was becoming increasingly conscious of the concerning and unavoidable blind spots.

As a result, the local council have promised Ronda that they will address the issues at the Park RoadAnnerley Road intersection, and plan to redesign the entire intersection within 18 months. Not only have they committed to making this crossing safer, but within one day, they had also lengthened the amount of time that lights stay red at the Peter Doherty Street-Annerley Road crossing (outside Granston Lodge) so that Ronda can safely cross the road before the light turns green for oncoming traffic.

Ronda and her Vision Australia Orientation Mobility Specialist, Christa, decided to contact the local council and request for improvements to be made to the busy intersection.

Two council representatives visited Ronda, and accompanied her and

Like Ronda, you too can bring about change in your community.

For more information, please contact our Advocacy Manager Natalie Walsh on 07 3840 0823 or natalie.walsh@msqld.org.au

Ronda at

the Park

Road lig

hts

MS LIFE – AUTUMN 2014

Ronda Bennett was diagnosed with MS in 2001 and over the years has experienced a gradual loss of mobility in her legs, as well as a visual impairment.

She now lives in our primary care facility Granston Lodge and remains engaged with her local community, taking regular outings into the community.

19

A DAY IN ThE LIFE OF GLENN Glenn with his Mum, Sue

GLENN WAS DIAGNOSED WITH MS IN 2005, AT 35, AND OVER THE YEARS HAS ExPERIENCED A GRADUAL LOSS OF MOBILITY IN HIS LEGS. HIS EYESIGHT HAS ALSO BEEN AFFECTED, AND HE SUFFERS FROM FATIGUE AND HAND TREMORS. Glenn now lives at our community based accommodation facility Annerley Apartments, and maintains an active lifestyle.

Annerley Apartments is a community-based living model of four modern townhouses that caters for up to eight people living with MS requiring 24-hour care. Annerley Apartments encourages independence and community involvement.

We spent a day with Glenn recently to see what a ‘day in the life’ of our Annerley residents looks like.

SATURDAYS Glenn is an early riser and is usually up and ready for the day by 7am. An independent living assistant assists Glenn with moving from his bed into his wheelchair, having a shower, and going downstairs to his kitchen for breakfast.

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After breakfast, Glenn’s mum Sue and cousin Jodie arrive.

Jodie and Glenn are close in age, and being an only child, Glenn has grown up with Jodie as a sister figure so they have a special relationship. They’ll often pop down to the local pub for lunch and a beer, or head to the Westfield Carindale shopping centre.

Glenn and his family aim to be home by 2:00pm so that he can participate in Fran’s weekly meditation session.

Every Saturday, residents at Annerley Apartments enjoy a 30 minute meditation session run by our independent living assistant Fran. These sessions have helped some of the Annerley residents achieve some movement in limbs that were thought to be immobile.

As Glenn fatigues easily, he takes the opportunity after meditation sessions to have an afternoon rest. An independent living assistant helps Glenn move out of his chair and into bed, and he takes this time to recharge before Skyping his son Liam who lives in Scotland.

After Skyping with his son and catching up on all his goss, Glenn goes downstairs to prepare dinner in his kitchen.

As it’s a Saturday night, Glenn often enjoys going to see a movie at the cinemas. One of the independent living assistants accompanies him.

After a long day, it’s time for bed!

Not only does Glenn have a great relationship with his mother and cousin who visit a few times a week, but he’s also lucky to have an amazing support network of lifelong friends who participate in a number of fundraising and social events with him. Twenty five years ago, Glenn studied a Bachelor of IT at university. Today, ten of his university friends and their partners continue to keep in close contact – often catching up for lunch about once a month – and each year they participate in the annual MS Moonlight Walk to support Glenn (pictured below).

To find out more about accommodation and respite services please call our InfoLine on 1800 177 591.

ADVOCACY

WITh NATALIE

DID YOU KNOW ThAT WE SUPPoRT PhYSIoThERAPY UNISTUDENTS

“WE ALL HAVE THE POWER TO CONTRIBUTE AND INFLUENCE POLICY WITH OUR STORIES IN OUR LOCAL COMMUNITY. This year means it’s only two and half years before the National Disability Insurance Scheme (NDIS) begins to roll out in Queensland – with full completion of the rollout in 2019.

Keeping pace with the plentiful amount of information regarding the NDIS and how it will affect everyone’s dayto-day life requires everyone to use this preparation time to get the most out of working with the new NDIS. The Queensland Government recently released the Queensland Disability Plan 2014–2019, to assist Queenslanders for the transition to the NDIS outlining the Government’s proposed actions over the next five years. Visit www.communities.qld.gov.au for more information. This is a positive move, however even though the time seems some distance away before there is an NDIS in Queensland, people need to begin to think about how they will work with their individual plan and the NDIS. We’ve been sharing information about the fundamentals of the NDIS, about choice and control, working with your goals and ambitions, about people having a good life; it’s not just about services and support but things that support you to have an inclusive life.

At a recent NDIS conference, a 27 year old lady who is the founder and managing director of her own company specialising in web and graphic design who has been selfmanaging her support, was asked how long it had taken her to get to where she is (e.g. happily self-managing her support). Her answer was “all my life.”

We provide an opportunity for four students each year to meet people living with MS and learn about assessment techniques and treatment options.

We look forward to up-skilling these students for their future work with people with neurological conditions.

Natalie Advocacy Manager

Keep updated on news regarding the NDIS on our website or contact Natalie Walsh 07 3840 0823 or email natalie.walsh@msqld.org.au

MS LIFE – AUTUMN 2014

MS QUEENSLAND is a training partner with Bond University, the University of Queensland, and for the first time, the Australian Catholic University for their physiotherapy students in 2014.

We now have time to do the thinking, to do the pre-planning.

Your chosen supports and services need to provide the foundation for you having your best life. MS Queensland is working to share your collective voice and raise issues that affect the lives of people living with MS. This information is then shared by meeting with sector partners and government regarding issues that are of concern to all of us. It’s important that local information is shared throughout Queensland so please get in contact with your member of Government: local, state or federal to share information about the issues that affect you. If you’d like to discuss any issues regarding Advocacy and MS please contact our Advocacy Manager Natalie Walsh on 07 3840 0823 or natalie.walsh@msqld.org.au

21

QUESTIONS WITh TIM

ABOUT VITAMIN

D

One of the most common questions I get is about Vitamin D. Unless you have been living under a rock, I’m sure you’ve all come across it in all forms of the news over the last 18 months too. So in 500 words or less here is what we know (and don’t know) about Vitamin D and MS. Vitamin D is a steroid hormone that is predominantly produced in the body when the skin is exposed to the ultraviolet rays in sunlight – we get a very small amount from food. Vitamin D is required for optimal bone health, and vitamin D deficiency can lead to osteoporosis and influence neuromuscular function (strength and balance).

The possible role of Vitamin D in MS is the focus of much debate. There is evidence that low levels of Vitamin D are associated with an increased risk of getting MS. In established MS, low levels of Vitamin D have been associated with relapses and increased disability.

HOW MUCH VITAMIN D – AND WHERE DO WE GET IT? The recommended minimum Vitamin D level is 50nmol/L (in your blood), but recent research suggests there may be additional benefit in maintaining Vitamin D levels of 75nmol/L or higher. To check your own Vitamin D levels, you should ask your GP for a blood test. They can then advise you on whether you need to increase your Vitamin D levels. It is very important to find out where your levels are – not just if they are ‘normal’ or low.

MS LIFE – AUTUMN 2014

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Theoretically, there are three ways to increase Vitamin D levels: 1. take Vitamin D supplements (easiest); 2. increase your exposure to sunlight – follow the Queensland Cancer Council’s sun-safe recommendations; and 3. increase your intake of foods containing Vitamin D (very hard to do!).

I GET LOTS OF SUN BUT MY VITAMIN D IS STILL LOW! Some people simply don’t metabolise the ultraviolet B (UVB) rays into the usable hormone as efficiently as others. The easiest thing to do is to have your levels checked. They may be okay in summer but low in winter.

Skin colour does influence the amount of sun exposure you need to produce Vitamin D, as does weight – the darker your skin or if you are overweight or obese, you need more time in the sunlight. It will probably surprise most that even in Queensland there are periods in winter where the sun is not strong enough for the skin to produce sufficient Vitamin D.

IF I TAKE A SUPPLEMENT – HOW MUCH DO I TAKE? Unfortunately, we just don’t know. Again talk to your GP or neurologist. There are a lot of research projects currently going on around the world to try and give us a better answer than this. Vitamin D is sold in International Units (IU) – capsules or tablets generally have 1000IU. Some people may only need to take one a day – others if very low in Vitamin D may need to take 4-5 a day until their levels come up and then reduce how much they are taking. Again, your GP can help keep an eye on your blood levels.

MORE INFORMATION? MS Queensland has a number of resources from different sources available to you, call our InfoLine on 1800 177 591 or visit www.msqld.org.au

Tim MS Nurse Practitioner Manager Specialist Education

If you have an MS-related question to ask our Manager of Specialist Education Tim, that can be answered in the next MS Life, please email Tim at mslife@msqld.org.au before 14 April 2014.

MS

RESoURcES

MS SUPPORT

GRoUPS UPDATE

DIAGNoSING MS In the 1970’s the average time of an MS diagnosis from first symptoms was seven years. Today, this process still takes time however modern technology has somewhat streamlined this process (e.g. with the introduction of MRIs).

The diagnosis process is one of the three most common questions that our InfoLine receives. Here are four useful resources to assist you in understanding the diagnosis process of MS.

This edition looks at the process of diagnosing MS, and the uncertainties people with MS and their healthcare professionals face throughout the MS disease process. www.msqld.org.au/msresources/ information-on-ms

T ROAD FROM SYMPTOMS THE AND SIGNS TO CERTAINTY A conversation with a neurologist and MS researcher Dr. John Corboy about how we understand and diagnose MS today. www.mscenter.org/images/stories/PD www.mscenter.org/images/stories/PDf/ Informs/InforMS2011winterlowes.pdf

MRI: M MAKING MS VISIBLE This issue looks at MRIs generally, and from the points of view of a neurologist, a radiologist and a person who has MS. http://catalog.proemags.com/publication/ 8537eeeb#/8537eeeb/6

INFORMATION TECHNOLOGY INFORMATION, AND MS This resource focuses on information: where to find it, how to use it to be empowered, how it connects people and how it should be assessed. www.msif.org/about-us/communicatingms/ms-in-focus-magazine/informationtechnolgy-and-ms.aspx

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

As predicted, the year is off to a great start with Support Groups meeting together after a well-earned break keeping out of the heat.

We’re looking forward to inviting more people interested in joining Support Groups and also hearing from people who wish to start a new Support Group. As mentioned in ‘The role of Support Groups’ article on page 11, there are many ways people choose to have their Support Group function, but the value of each and every one cannot be underestimated for the friendships and support that is provided – and I have certainly had the pleasure of experiencing that first hand!

The MS International Federation (MSIF) have made this year’s World MS Day theme ‘Access’ focusing on the many ways that access can affect people’s lives living with MS; including physical access, access to public transport, access to gaining employment, access to medication and the same social and economic opportunities as everyone else.

I am encouraged by the Support Groups that have shown interest in contacting their member of Government – local, state or federal to join their Support Group during May, MS Awareness Month. I know Natalie Walsh, MS Queensland’s Advocacy Manager would be happy to assist with any queries you may have.

Finally, our fantastic MS fundraising events have already begun with at least nine events happening around Queensland this year. We know some amazing fundraisers and more MS champions who will bring with them hard work and dedication and we will all share in the total success of what is achieved from their participation. Keep up to date with the events happening near you at www.msqld.org.au

If you have any questions about our support groups and how we can assist you, please contact me at jennifersaunders3@bigpond.com

MS LIFE – AUTUMN 2014

IS IT MS?

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5–30 APRIL

6 APRIL

1–31 MAY

10 MAY

MS Heroes Awards judging period

MS Swimathon Cairns

MS Awareness Month

MS Swimathon Rockhampton

www.msqld.org.au

www.MSswimathon.com.au

www.KissGoodbyetoMS.org

www.MSswimathon.com.au

18 May

28 MAY

1 JUNE

22 JUNE

MS Swimathon Mackay

World MS Day: themed “Access”

MS Swimathon Townsville

MS Enerflex Brissie to the Bay bike ride

www.MSswimathon.com.au

www.WorldMSDay.org

www.MSswimathon.com.au

www.BrissietotheBay.com.au

17 OCTOBER

NOVEMBER

NOVEMBER

MS Moonlight Walk

MS Swimathon Toowoomba

MS Swimathon Jindalee

www.MoonlightWalk.com.au

www.MSswimathon.com.au

www.MSswimathon.com.au

30 MAY 2012

for more information contact the MS Queensland Events Team on 07 3840 0828 or email events@msqld.org.au

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