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Meet Grem Warrington who was diagnosed with MS in 2012 after suffering symptoms that date back to 2007. He knew “something wasn’t quite right” and in 2010 his MS symptoms had escalated. Despite going through some trying times, he now has a positive attitude towards his MS and tries not to let MS run his life.
Citation preview
pg. 05 New regional Queensland offices
pg. 07 Annual Conference & AGM wrap up
pg. 16 MS Big Dinner Party is back
pg. 23 New ‘driving and MS’ resources
MSLIFE.MS QUEENSLAND’S PREMIER MAGAZINE FOR PEOPLE LIVING WITH MS
SUMMER 2015
grEm’s ms journEy: Learning about love, honour, loyalty and respect ms
Written by MS Clinic Nurse Kaye Hooper
navIgatIng tHE
hEaLth systEm
WItHms
navIgatIng tHE
hEaLth systEm
WItH
Written by MS Clinic Nurse Kaye Hooper
To make a donation to MS Queensland or for more information on what we do please email [email protected] or call 07 3840 0888 or visit www.msqld.org.au
WANt AN MS QUEStIoN ANSWERED?If you have an MS-related question to ask Tim, our Manager of Specialist Education, please email Tim at [email protected]
www.msqld.org.au
www.twitter.com/msqldwww.facebook.com/msqld
youtube.com/user/MSAustraliaQwww.msqld.org.au
If you’d like to stay in touch with MS Queensland’s activities, events and physiotherapy programs please visit our:
tRADING HoURS
CHRIStMASMS Queensland’s
The MS Queensland offices across the State will be closed over Christmas from midday Friday 19 December 2014 and will reopen on Monday 5 January 2015.
If you are having any issues or concerns with your MS during this period, please contact your local GP or closest hospital emergency department in the first instance. Our Psychologist Aart Simons will also be available for any urgent client support during this time.
Dear readers,
We can’t believe Christmas is almost here again! As always, the year has gone so fast – during which we saw a massive record breaking year of fundraising, the introduction of online ‘MS Webinars’ and the development of the NeuroCare Network in Queensland – just to name a few! Last month we also hosted the third MS Queensland Conference and AGM which featured an exciting new panel discussion on ‘MS emerging treatments – hope versus risk’ – you can read more about the event on page 7.
This edition of MS Life features Grem Warrington on the cover who was diagnosed with MS in 2012 after suffering symptoms that date back to 2007. He knew “something wasn’t quite right” and in 2010 his MS symptoms had escalated. He started experiencing slurred speech, severe dizziness and dragging of his left leg. After spending months trying to self-diagnose his symptoms using ‘Dr Google’ Grem saw a neurologist for a solid diagnosis. Despite going through some trying times, he now has a positive attitude towards his MS and tries not to let MS run his life.
Other stories in this edition include a wrap up of our recent Conference and AGM, the announcement that Australia has joined other MS organisations from around the world in a global alliance to end progressive MS (page 4), tips to navigating the health system with MS (page 8), energy rebates for southeast Queenslanders (page 10) and new ‘Driving with MS’ resources (page 23).
As always, if you have any feedback about MS Life or have a story idea please get in touch by emailing us at [email protected]. Wishing you a Merry Christmas and Happy New Year.
Melanie and Cassie Editors, MS Life
FRoM tHE EDItoRS
MS LIFE – SU
MM
ER 2015
2
What an amazing 12 months it has been! Looking back, everyone at MS Queensland has been busy helping people living with MS to get the best out of life; to advocate for change; and to search for a cure. Highlights from the year include:• celebrating56yearsofservicetotheMScommunity;• supporting2,140peoplelivingwithMS;• expandingMSInfoLinetodeliver2,080hoursofsupport;• delivering9,449physioandexercisetherapysessions;• conducting37MSworkshopsandinformationsessions
and launching MS webinars;• announcingtwoexcitinghousingprojects;• making5writtenadvocacysubmissionstogovernment;• contributing$339,000toMSresearch;and• breakingfundraisingrecordswithourMSBrissietothe
BayandMSMoonlightWalk.
The end of 2014 also signals that Queensland is one year closer to the start of the NDIS. If you don’t know what the NDIS could mean for you, I encourage you visit our website www.msqld.org.au/ndis
Looking ahead, we’ll be working hard to deliver more housing solutions including trialing a new in-home support serviceandsupportingthestartofaBrisbaneMSclinicaltrialthat could potentially achieve ground breaking results for people living with progressive MS.
Whatever 2015 brings be assured that the entire MS Queensland team is here, above everything else, to give you real hope – no matter what.
Bestwishes,
Lincoln, CEO
SUMMER 2015
CoVER StoRY PG 14Grem’s MS journey: learning about love, honour, loyalty and respect
ContEnts
FRoM CEotheGrem Warrington, living with MS
Acknowledgement: We wish to thank Grem Warrington for the use of his image on the cover of this publication. Photo courtesy of Jason Henry, ‘Welcome to the Fold’ Photography.
PAGE 2–3 From the Editors From the CEO
PAGE 4–5 Australia joins global alliance to fight progressive MS New MS Queensland offices Becomeamember
PAGE 6–7 Latest Annual Report now available Annual Conference and AGM wrap up
PAGE 8–9 Navigating the health system
PAGE 10–11 MS affordable housing projects on track Energy rebates More physio and exercise options coming to regions
PAGE 12–13 MS fundraisers in the community Who is your local politician? 91yearsyoung–RonGrove’sMSjourney
PAGE 14–15 Grem’s MS journey
PAGE 16–17 Events that help people living with MS
PAGE 18–19 Buildingpartnerships Mindfulness for MS Health and MS – Ron Vella New national MS advocate leads annual conference
PAGE 20–21 Client in focus MS Support Group forum How Sian lives positively with MS Making waves in the Redlands
PAGE 22–23 Driving and MS: questions with Tim MS Resources MS Support Groups update
PAGE 24 2015 Calendar of events MS
LIFE
– S
UM
MER
201
5
3
alliance to fight progressive ms
The International Progressive MS Alliance, coordinated by the MS International Federation, is the most ambitious collaborative project the global MS movement has ever embarked upon, with MS Research Australiapledging$1.1millionoverthe next three years.
Dr Matthew Miles, CEO of MS Research Australia said that “working in isolation on an issue such as progressive MS risks duplicatingourefforts.Byenablingglobal collaboration, the Alliance is dedicated to fast-tracking the type of discoveries that can truly change people’s lives.”
While ten approved disease-modifying therapy options exist for people with relapsing-remitting MS in Australia, people with progressive forms of MS have very limited treatment options and much less is known about this form of the condition.
To invest in further research, the Alliance has announced the first round of 22 research grants to investigators in nine countries. Australian MS researcher Dr Steven Petratos from Monash University has received funding to continue exploring methods to prevent the degeneration of myelin and nerve fibres in MS. This is an important area of research which should lead
to discoveries that could prevent MS progression and deterioration.
MS Research Australia joins the Alliance as a managing member, with a key role in the Executive Committee and contributing technical advice and expertise, and will also continue to fund the best progressive MS research here in Australia as has been the case over the last decade.
For more information please visit www.msra.org.au
MS Research Australia has joined other MS organisations from the USA, UK, Italy, Denmark, Spain and Canada in a global alliance to end progressive MS, making Australia the first alliance member in the southern hemisphere.
gloBalAUStRALIA JoINS
VISIT scootersaus.com.au or CALL 1300 622 633
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• America’s top selling portable scooter
• Folds up in seconds• Li-ion battery pack• Carries up to 140kg
The luggiePACK it up And Go!
MS LIFE – SU
MM
ER 2015
4
Not A MEMBER?joIn toDay!
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
2014–15 financial year please contact us at [email protected] or call 07 3840 0888.
On behalf of all Queenslanders living with MS, we look forward to your help in creating a future free from MS and its devastating impact.
Are you a member of the MS Queensland? Membership with us, which is just $33 a year, assists us in providing information 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 contribution 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 Queensland as soon as possible. On behalf of all Queenslanders living with MS, we look forward to your membership support for a world free from MS and its devastating impact.
Lincoln Hopper, CEO
HAVE YOUR SAY!Help support MS Queensland and it’s good work!
LIFEQUEENSLAND
Autumn Edition 2009
Giving life back
IN THIS ISSUE... CEO’s Message 2Catherine’s Story 3Our New Website 3Life at Annerley Update 4Feature Articles 6MS Readathon 30th Birthday 8 Fatigue Research 9MS Services 10
Lisa & Sandy tell... “We Have MS, But It Doesn’t Have Us!”
Services to support you & taking control
26 MAY 2010
worldMSday
MS Awareness Week 26 May - 4 June
LIFEGiving life back
QUEENSLAND
26 MAY 2010
worldMSday
JOIN THE GLOBAL MOVEMENT!
Autumn 2010
Activities happening all around the world!Find out how you can take part
Life at AnnerleyThe official launch
Jonathan Loraine and Bruce Milligan
MS Life MS Australia – QLDAutumn 2011
WORLD MS DAYHow you can help the global campaign on employment and MS
Australian of the Year
GET PHYSICALThe link between exercise and quality of life for people with MS
BRISSIE TO THE BAYBrisbane’s biggest charity ride celebrates 20 years and its biggest ever event
McKINNON HOUSEA new era of respite care in an idyllic setting on the Gold Coast
MSLIFE.AUTUMN 2012
LOUISA ON A MISSION How a young mum won’t let MS hold her back
LOUISA ON A MISSION How a young mum won’t let MS hold her backpg. 8 Nominate your MS Hero
pg. 8 Working with MS Workshops
pg. 12 One man’s struggle against the odds
pg. 15 Living Positively with MS
MS AWARENESS MONTH THIS MAYHow you can help spread the word about MS this May
QUEENSLAND’S PREMIER MAGAZINE FOR PEOPLE LIVING WITH MS
“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.I have managed this condition through positive thinking, meditation, pilates, 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. 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
who are worse off. I love my life and I look forward to everything that life offers.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.Just before Sophia’s fifth birthday (she is 10 now), my Mum asked her what her three birthday wishes were. She stated that she “would LOVE a violin, a poodle puppy…but most of all Grandma I would love a cure for MS and that Mummy’s legs would work properly again”. She received the violin and recently Millie the poochon puppy, and is still waiting for the gift of a cure. 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!”
LIFE Queensland
Sharon and Sophia Ball with their puppy Millie
LIFEQueensland
THIS ISSUECEO’s Desk 2
Brissie to the Bay 3
Introducing Facebook 4
Portrait of Posterity 5
Work of Aart 6
Lynette Walks Again 7
Events 8
An 11 year old’s idea... 9
MS Readathon 10
Ambassadors Needed 11
Notice of AGM 12
Volume 3 Spring Edition, September 2008
New Record for brissie to the bay3800 CYCLIST PEDAL FOR A CURE!
Multiple Sclerosis Society of Queensland ABN 56 731 473 412286 Gladstone Road Dutton Park QLD 4102 Phone: 07 3840 0888 Fax: 07 3840 0813Locked Bag 370 Coorparoo DC QLD 4151 Email: [email protected] www.msaustralia.org.au/qld
Jenni Ambassador, National Panel Horse Judge and person with MS
LIFEQUEENSLAND
Spring Edition 2009
Giving life back
MS CLINIC CONVERSATIONSIn depth answers to the most frequently asked MS questions
2nd Annual MS National Advocates Conference Storming Parliament House for MS
MS Life MS Australia – QLDSpring 2010
CCSVI DEBATEWhy MS organisations are proceeding with caution on new treatments
Kate finds her dream job
GIVING LIFE BACKThe ambitious program to provide integrated and dignified care
FOR THE CAUSEMeet the Queenslanders supporting MS research and regional services
PwMSQ
A new framework to expand and strengthen the MS support group network
LIFEGiving life back
Questions about MS?
Life at Annerley....COMPLETED!Giving back independence and dignity
We’ve got the answers you’re looking for
QUEENSLAND
us together!BOB AND KAREN’S LOVE STORY
MS brought
Summer Edition 2009MS Life MS Australia – QLDSpring 2011
BREAKTHROUGH MS RESEARCHScientists have identified the major common genetic variants that contribute to the cause of MS
MS gene discovery
ORAL TREATMENT JOINS PBSGilenya® is the first oral treatment for relapsing remitting MS to become available on the PBS
TREVOR FARRELL: GIVING LIFE BACKWe celebrate the end of an era as Executive Director Trevor Farrell prepares to retire after nearly 30 years
Q&A WITH MAYOR PAUL PISASALEMeet one of the most inspiring people living with MS in Queensland, Mayor of Ipswich Paul Pisasale
Multiple Sclerosis Society of Queensland286 Gladstone Road Dutton Park QLD 4102Locked Bag 370 Coorparoo DC QLD 4151ABN 56 731 473 412
Phone: 07 3840 0888Fax: 07 3840 0813Email: [email protected]/qld
LIFEQUEENSLAND
CEO’s Desk 2Life Options 3Ian’s Story 4In Memory of John 5Reading for the Family 6Storming Parliament 8Events 9Research Breakthrough 10MS Book Reviews 12
LIFE AT ANNERLEY...MS SOCIETY OF QLD PURCHASES PARTIALLY COMPLETED TOWN HOUSES AS PART OF LIFE OPTIONS
Summer edition2009
MS Life MS Australia – QLDSummer 2011
COMEBACK KIDGeoff Huegill lends his support to MS, fresh from taking gold in Delhi
Lisa’s story of motherhood and MSTABLET TALKA look at new oral treatments for MS that offer more options
LET’S CRUISEHelen Emery takes on the high seas in style with husband Graham
MOONLIGHT WALKOver 1300 people take a stroll through Brisbane to raise money for MS
A YEAR OF EMPLOYMENT AND MSWHAT A YEAR IT HAS BEEN FOR MS WORLDWIDE
MCKINNON HOUSE FOR RESPITE p.6
PREPARING FOR THE SUMMER HEAT p.7
LEIZA’S STORYp.3
LIFEQUEENSLAND
Winter Edition 2009
Giving life back
Educate, Motivate & Advocate
Our New MS Ambassadors
Vitamin Dare you getting enough?
OUR PATRON Her Excellency Ms Penelope Wensley AO
The First OfficialWorld MS Day
MS Life MS Australia – QLD
A GLOBAL MOVEMENT P3How the world united with a common goal: to raise awareness of MS
Winter 2010
Debbie strives
despite MSCOOLING REBATE P5State Government introduces a new electricity rebate for low-income Queenslanders with multiple sclerosis
FEATURE STORY P10Debbie Smart was diagnosed with MS, but it didn’t stop her from moving to Africa to help vulnerable children
RESEARCH NEWS P15MS Research Australia provides you with the latest updates on MS research
MS Life MS Australia – QLDWinter 2011
EMPLOYMENT AND MSSee how Queensland took part in World MS Day celebrations this year
Employment Power
MS AWARENESS WEEKRead about the lip smacking campaign that had everyone talking about MS
MS AND SESPwMS Josie Montano helps during Queensland’s floods and cyclones
VIRAL MS CAMPAIGNLearn what Mayor of Ipswich Paul Pisasale feels about employment and MS
LIFEQUEENSLAND
Autumn Edition 2009
Giving life back
IN THIS ISSUE... CEO’s Message 2Catherine’s Story 3Our New Website 3Life at Annerley Update 4Feature Articles 6MS Readathon 30th Birthday 8 Fatigue Research 9MS Services 10
Lisa & Sandy tell... “We Have MS, But It Doesn’t Have Us!”
Services to support you & taking control
26 MAY 2010
worldMSday
MS Awareness Week 26 May - 4 June
LIFEGiving life back
QUEENSLAND
26 MAY 2010
worldMSday
JOIN THE GLOBAL MOVEMENT!
Autumn 2010
Activities happening all around the world!Find out how you can take part
Life at AnnerleyThe official launch
Jonathan Loraine and Bruce Milligan
MS Life MS Australia – QLDAutumn 2011
WORLD MS DAYHow you can help the global campaign on employment and MS
Australian of the Year
GET PHYSICALThe link between exercise and quality of life for people with MS
BRISSIE TO THE BAYBrisbane’s biggest charity ride celebrates 20 years and its biggest ever event
McKINNON HOUSEA new era of respite care in an idyllic setting on the Gold Coast
MSLIFE.AUTUMN 2012
LOUISA ON A MISSION How a young mum won’t let MS hold her back
LOUISA ON A MISSION How a young mum won’t let MS hold her backpg. 8 Nominate your MS Hero
pg. 8 Working with MS Workshops
pg. 12 One man’s struggle against the odds
pg. 15 Living Positively with MS
MS AWARENESS MONTH THIS MAYHow you can help spread the word about MS this May
QUEENSLAND’S PREMIER MAGAZINE FOR PEOPLE LIVING WITH MS
“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.I have managed this condition through positive thinking, meditation, pilates, 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. 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
who are worse off. I love my life and I look forward to everything that life offers.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.Just before Sophia’s fifth birthday (she is 10 now), my Mum asked her what her three birthday wishes were. She stated that she “would LOVE a violin, a poodle puppy…but most of all Grandma I would love a cure for MS and that Mummy’s legs would work properly again”. She received the violin and recently Millie the poochon puppy, and is still waiting for the gift of a cure. 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!”
LIFE Queensland
Sharon and Sophia Ball with their puppy Millie
LIFEQueensland
THIS ISSUECEO’s Desk 2
Brissie to the Bay 3
Introducing Facebook 4
Portrait of Posterity 5
Work of Aart 6
Lynette Walks Again 7
Events 8
An 11 year old’s idea... 9
MS Readathon 10
Ambassadors Needed 11
Notice of AGM 12
Volume 3 Spring Edition, September 2008
New Record for brissie to the bay3800 CYCLIST PEDAL FOR A CURE!
Multiple Sclerosis Society of Queensland ABN 56 731 473 412286 Gladstone Road Dutton Park QLD 4102 Phone: 07 3840 0888 Fax: 07 3840 0813Locked Bag 370 Coorparoo DC QLD 4151 Email: [email protected] www.msaustralia.org.au/qld
Jenni Ambassador, National Panel Horse Judge and person with MS
LIFEQUEENSLAND
Spring Edition 2009
Giving life back
MS CLINIC CONVERSATIONSIn depth answers to the most frequently asked MS questions
2nd Annual MS National Advocates Conference Storming Parliament House for MS
MS Life MS Australia – QLDSpring 2010
CCSVI DEBATEWhy MS organisations are proceeding with caution on new treatments
Kate finds her dream job
GIVING LIFE BACKThe ambitious program to provide integrated and dignified care
FOR THE CAUSEMeet the Queenslanders supporting MS research and regional services
PwMSQ
A new framework to expand and strengthen the MS support group network
LIFEGiving life back
Questions about MS?
Life at Annerley....COMPLETED!Giving back independence and dignity
We’ve got the answers you’re looking for
QUEENSLAND
us together!BOB AND KAREN’S LOVE STORY
MS brought
Summer Edition 2009MS Life MS Australia – QLDSpring 2011
BREAKTHROUGH MS RESEARCHScientists have identified the major common genetic variants that contribute to the cause of MS
MS gene discovery
ORAL TREATMENT JOINS PBSGilenya® is the first oral treatment for relapsing remitting MS to become available on the PBS
TREVOR FARRELL: GIVING LIFE BACKWe celebrate the end of an era as Executive Director Trevor Farrell prepares to retire after nearly 30 years
Q&A WITH MAYOR PAUL PISASALEMeet one of the most inspiring people living with MS in Queensland, Mayor of Ipswich Paul Pisasale
Multiple Sclerosis Society of Queensland286 Gladstone Road Dutton Park QLD 4102Locked Bag 370 Coorparoo DC QLD 4151ABN 56 731 473 412
Phone: 07 3840 0888Fax: 07 3840 0813Email: [email protected]/qld
LIFEQUEENSLAND
CEO’s Desk 2Life Options 3Ian’s Story 4In Memory of John 5Reading for the Family 6Storming Parliament 8Events 9Research Breakthrough 10MS Book Reviews 12
LIFE AT ANNERLEY...MS SOCIETY OF QLD PURCHASES PARTIALLY COMPLETED TOWN HOUSES AS PART OF LIFE OPTIONS
Summer edition2009
MS Life MS Australia – QLDSummer 2011
COMEBACK KIDGeoff Huegill lends his support to MS, fresh from taking gold in Delhi
Lisa’s story of motherhood and MSTABLET TALKA look at new oral treatments for MS that offer more options
LET’S CRUISEHelen Emery takes on the high seas in style with husband Graham
MOONLIGHT WALKOver 1300 people take a stroll through Brisbane to raise money for MS
A YEAR OF EMPLOYMENT AND MSWHAT A YEAR IT HAS BEEN FOR MS WORLDWIDE
MCKINNON HOUSE FOR RESPITE p.6
PREPARING FOR THE SUMMER HEAT p.7
LEIZA’S STORYp.3
LIFEQUEENSLAND
Winter Edition 2009
Giving life back
Educate, Motivate & Advocate
Our New MS Ambassadors
Vitamin Dare you getting enough?
OUR PATRON Her Excellency Ms Penelope Wensley AO
The First OfficialWorld MS Day
MS Life MS Australia – QLD
A GLOBAL MOVEMENT P3How the world united with a common goal: to raise awareness of MS
Winter 2010
Debbie strives
despite MSCOOLING REBATE P5State Government introduces a new electricity rebate for low-income Queenslanders with multiple sclerosis
FEATURE STORY P10Debbie Smart was diagnosed with MS, but it didn’t stop her from moving to Africa to help vulnerable children
RESEARCH NEWS P15MS Research Australia provides you with the latest updates on MS research
MS Life MS Australia – QLDWinter 2011
EMPLOYMENT AND MSSee how Queensland took part in World MS Day celebrations this year
Employment Power
MS AWARENESS WEEKRead about the lip smacking campaign that had everyone talking about MS
MS AND SESPwMS Josie Montano helps during Queensland’s floods and cyclones
VIRAL MS CAMPAIGNLearn what Mayor of Ipswich Paul Pisasale feels about employment and MS
LIFEQUEENSLAND
Autumn Edition 2009
Giving life back
IN THIS ISSUE... CEO’s Message 2Catherine’s Story 3Our New Website 3Life at Annerley Update 4Feature Articles 6MS Readathon 30th Birthday 8 Fatigue Research 9MS Services 10
Lisa & Sandy tell... “We Have MS, But It Doesn’t Have Us!”
Services to support you & taking control
26 MAY 2010
worldMSday
MS Awareness Week 26 May - 4 June
LIFEGiving life back
QUEENSLAND
26 MAY 2010
worldMSday
JOIN THE GLOBAL MOVEMENT!
Autumn 2010
Activities happening all around the world!Find out how you can take part
Life at AnnerleyThe official launch
Jonathan Loraine and Bruce Milligan
MS Life MS Australia – QLDAutumn 2011
WORLD MS DAYHow you can help the global campaign on employment and MS
Australian of the Year
GET PHYSICALThe link between exercise and quality of life for people with MS
BRISSIE TO THE BAYBrisbane’s biggest charity ride celebrates 20 years and its biggest ever event
McKINNON HOUSEA new era of respite care in an idyllic setting on the Gold Coast
MSLIFE.AUTUMN 2012
LOUISA ON A MISSION How a young mum won’t let MS hold her back
LOUISA ON A MISSION How a young mum won’t let MS hold her backpg. 8 Nominate your MS Hero
pg. 8 Working with MS Workshops
pg. 12 One man’s struggle against the odds
pg. 15 Living Positively with MS
MS AWARENESS MONTH THIS MAYHow you can help spread the word about MS this May
QUEENSLAND’S PREMIER MAGAZINE FOR PEOPLE LIVING WITH MS
“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.I have managed this condition through positive thinking, meditation, pilates, 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. 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
who are worse off. I love my life and I look forward to everything that life offers.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.Just before Sophia’s fifth birthday (she is 10 now), my Mum asked her what her three birthday wishes were. She stated that she “would LOVE a violin, a poodle puppy…but most of all Grandma I would love a cure for MS and that Mummy’s legs would work properly again”. She received the violin and recently Millie the poochon puppy, and is still waiting for the gift of a cure. 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!”
LIFE Queensland
Sharon and Sophia Ball with their puppy Millie
LIFEQueensland
THIS ISSUECEO’s Desk 2
Brissie to the Bay 3
Introducing Facebook 4
Portrait of Posterity 5
Work of Aart 6
Lynette Walks Again 7
Events 8
An 11 year old’s idea... 9
MS Readathon 10
Ambassadors Needed 11
Notice of AGM 12
Volume 3 Spring Edition, September 2008
New Record for brissie to the bay3800 CYCLIST PEDAL FOR A CURE!
Multiple Sclerosis Society of Queensland ABN 56 731 473 412286 Gladstone Road Dutton Park QLD 4102 Phone: 07 3840 0888 Fax: 07 3840 0813Locked Bag 370 Coorparoo DC QLD 4151 Email: [email protected] www.msaustralia.org.au/qld
Jenni Ambassador, National Panel Horse Judge and person with MS
LIFEQUEENSLAND
Spring Edition 2009
Giving life back
MS CLINIC CONVERSATIONSIn depth answers to the most frequently asked MS questions
2nd Annual MS National Advocates Conference Storming Parliament House for MS
MS Life MS Australia – QLDSpring 2010
CCSVI DEBATEWhy MS organisations are proceeding with caution on new treatments
Kate finds her dream job
GIVING LIFE BACKThe ambitious program to provide integrated and dignified care
FOR THE CAUSEMeet the Queenslanders supporting MS research and regional services
PwMSQ
A new framework to expand and strengthen the MS support group network
LIFEGiving life back
Questions about MS?
Life at Annerley....COMPLETED!Giving back independence and dignity
We’ve got the answers you’re looking for
QUEENSLAND
us together!BOB AND KAREN’S LOVE STORY
MS brought
Summer Edition 2009MS Life MS Australia – QLDSpring 2011
BREAKTHROUGH MS RESEARCHScientists have identified the major common genetic variants that contribute to the cause of MS
MS gene discovery
ORAL TREATMENT JOINS PBSGilenya® is the first oral treatment for relapsing remitting MS to become available on the PBS
TREVOR FARRELL: GIVING LIFE BACKWe celebrate the end of an era as Executive Director Trevor Farrell prepares to retire after nearly 30 years
Q&A WITH MAYOR PAUL PISASALEMeet one of the most inspiring people living with MS in Queensland, Mayor of Ipswich Paul Pisasale
Multiple Sclerosis Society of Queensland286 Gladstone Road Dutton Park QLD 4102Locked Bag 370 Coorparoo DC QLD 4151ABN 56 731 473 412
Phone: 07 3840 0888Fax: 07 3840 0813Email: [email protected]/qld
LIFEQUEENSLAND
CEO’s Desk 2Life Options 3Ian’s Story 4In Memory of John 5Reading for the Family 6Storming Parliament 8Events 9Research Breakthrough 10MS Book Reviews 12
LIFE AT ANNERLEY...MS SOCIETY OF QLD PURCHASES PARTIALLY COMPLETED TOWN HOUSES AS PART OF LIFE OPTIONS
Summer edition2009
MS Life MS Australia – QLDSummer 2011
COMEBACK KIDGeoff Huegill lends his support to MS, fresh from taking gold in Delhi
Lisa’s story of motherhood and MSTABLET TALKA look at new oral treatments for MS that offer more options
LET’S CRUISEHelen Emery takes on the high seas in style with husband Graham
MOONLIGHT WALKOver 1300 people take a stroll through Brisbane to raise money for MS
A YEAR OF EMPLOYMENT AND MSWHAT A YEAR IT HAS BEEN FOR MS WORLDWIDE
MCKINNON HOUSE FOR RESPITE p.6
PREPARING FOR THE SUMMER HEAT p.7
LEIZA’S STORYp.3
LIFEQUEENSLAND
Winter Edition 2009
Giving life back
Educate, Motivate & Advocate
Our New MS Ambassadors
Vitamin Dare you getting enough?
OUR PATRON Her Excellency Ms Penelope Wensley AO
The First OfficialWorld MS Day
MS Life MS Australia – QLD
A GLOBAL MOVEMENT P3How the world united with a common goal: to raise awareness of MS
Winter 2010
Debbie strives
despite MSCOOLING REBATE P5State Government introduces a new electricity rebate for low-income Queenslanders with multiple sclerosis
FEATURE STORY P10Debbie Smart was diagnosed with MS, but it didn’t stop her from moving to Africa to help vulnerable children
RESEARCH NEWS P15MS Research Australia provides you with the latest updates on MS research
MS Life MS Australia – QLDWinter 2011
EMPLOYMENT AND MSSee how Queensland took part in World MS Day celebrations this year
Employment Power
MS AWARENESS WEEKRead about the lip smacking campaign that had everyone talking about MS
MS AND SESPwMS Josie Montano helps during Queensland’s floods and cyclones
VIRAL MS CAMPAIGNLearn what Mayor of Ipswich Paul Pisasale feels about employment and MS
LIFEQUEENSLAND
Autumn Edition 2009
Giving life back
IN THIS ISSUE... CEO’s Message 2Catherine’s Story 3Our New Website 3Life at Annerley Update 4Feature Articles 6MS Readathon 30th Birthday 8 Fatigue Research 9MS Services 10
Lisa & Sandy tell... “We Have MS, But It Doesn’t Have Us!”
Services to support you & taking control
26 MAY 2010
worldMSday
MS Awareness Week 26 May - 4 June
LIFEGiving life back
QUEENSLAND
26 MAY 2010
worldMSday
JOIN THE GLOBAL MOVEMENT!
Autumn 2010
Activities happening all around the world!Find out how you can take part
Life at AnnerleyThe official launch
Jonathan Loraine and Bruce Milligan
MS Life MS Australia – QLDAutumn 2011
WORLD MS DAYHow you can help the global campaign on employment and MS
Australian of the Year
GET PHYSICALThe link between exercise and quality of life for people with MS
BRISSIE TO THE BAYBrisbane’s biggest charity ride celebrates 20 years and its biggest ever event
McKINNON HOUSEA new era of respite care in an idyllic setting on the Gold Coast
MSLIFE.AUTUMN 2012
LOUISA ON A MISSION How a young mum won’t let MS hold her back
LOUISA ON A MISSION How a young mum won’t let MS hold her backpg. 8 Nominate your MS Hero
pg. 8 Working with MS Workshops
pg. 12 One man’s struggle against the odds
pg. 15 Living Positively with MS
MS AWARENESS MONTH THIS MAYHow you can help spread the word about MS this May
QUEENSLAND’S PREMIER MAGAZINE FOR PEOPLE LIVING WITH MS
“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.I have managed this condition through positive thinking, meditation, pilates, 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. 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
who are worse off. I love my life and I look forward to everything that life offers.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.Just before Sophia’s fifth birthday (she is 10 now), my Mum asked her what her three birthday wishes were. She stated that she “would LOVE a violin, a poodle puppy…but most of all Grandma I would love a cure for MS and that Mummy’s legs would work properly again”. She received the violin and recently Millie the poochon puppy, and is still waiting for the gift of a cure. 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!”
LIFE Queensland
Sharon and Sophia Ball with their puppy Millie
LIFEQueensland
THIS ISSUECEO’s Desk 2
Brissie to the Bay 3
Introducing Facebook 4
Portrait of Posterity 5
Work of Aart 6
Lynette Walks Again 7
Events 8
An 11 year old’s idea... 9
MS Readathon 10
Ambassadors Needed 11
Notice of AGM 12
Volume 3 Spring Edition, September 2008
New Record for brissie to the bay3800 CYCLIST PEDAL FOR A CURE!
Multiple Sclerosis Society of Queensland ABN 56 731 473 412286 Gladstone Road Dutton Park QLD 4102 Phone: 07 3840 0888 Fax: 07 3840 0813Locked Bag 370 Coorparoo DC QLD 4151 Email: [email protected] www.msaustralia.org.au/qld
Jenni Ambassador, National Panel Horse Judge and person with MS
LIFEQUEENSLAND
Spring Edition 2009
Giving life back
MS CLINIC CONVERSATIONSIn depth answers to the most frequently asked MS questions
2nd Annual MS National Advocates Conference Storming Parliament House for MS
MS Life MS Australia – QLDSpring 2010
CCSVI DEBATEWhy MS organisations are proceeding with caution on new treatments
Kate finds her dream job
GIVING LIFE BACKThe ambitious program to provide integrated and dignified care
FOR THE CAUSEMeet the Queenslanders supporting MS research and regional services
PwMSQ
A new framework to expand and strengthen the MS support group network
LIFEGiving life back
Questions about MS?
Life at Annerley....COMPLETED!Giving back independence and dignity
We’ve got the answers you’re looking for
QUEENSLAND
us together!BOB AND KAREN’S LOVE STORY
MS brought
Summer Edition 2009MS Life MS Australia – QLDSpring 2011
BREAKTHROUGH MS RESEARCHScientists have identified the major common genetic variants that contribute to the cause of MS
MS gene discovery
ORAL TREATMENT JOINS PBSGilenya® is the first oral treatment for relapsing remitting MS to become available on the PBS
TREVOR FARRELL: GIVING LIFE BACKWe celebrate the end of an era as Executive Director Trevor Farrell prepares to retire after nearly 30 years
Q&A WITH MAYOR PAUL PISASALEMeet one of the most inspiring people living with MS in Queensland, Mayor of Ipswich Paul Pisasale
Multiple Sclerosis Society of Queensland286 Gladstone Road Dutton Park QLD 4102Locked Bag 370 Coorparoo DC QLD 4151ABN 56 731 473 412
Phone: 07 3840 0888Fax: 07 3840 0813Email: [email protected]/qld
LIFEQUEENSLAND
CEO’s Desk 2Life Options 3Ian’s Story 4In Memory of John 5Reading for the Family 6Storming Parliament 8Events 9Research Breakthrough 10MS Book Reviews 12
LIFE AT ANNERLEY...MS SOCIETY OF QLD PURCHASES PARTIALLY COMPLETED TOWN HOUSES AS PART OF LIFE OPTIONS
Summer edition2009
MS Life MS Australia – QLDSummer 2011
COMEBACK KIDGeoff Huegill lends his support to MS, fresh from taking gold in Delhi
Lisa’s story of motherhood and MSTABLET TALKA look at new oral treatments for MS that offer more options
LET’S CRUISEHelen Emery takes on the high seas in style with husband Graham
MOONLIGHT WALKOver 1300 people take a stroll through Brisbane to raise money for MS
A YEAR OF EMPLOYMENT AND MSWHAT A YEAR IT HAS BEEN FOR MS WORLDWIDE
MCKINNON HOUSE FOR RESPITE p.6
PREPARING FOR THE SUMMER HEAT p.7
LEIZA’S STORYp.3
LIFEQUEENSLAND
Winter Edition 2009
Giving life back
Educate, Motivate & Advocate
Our New MS Ambassadors
Vitamin Dare you getting enough?
OUR PATRON Her Excellency Ms Penelope Wensley AO
The First OfficialWorld MS Day
MS Life MS Australia – QLD
A GLOBAL MOVEMENT P3How the world united with a common goal: to raise awareness of MS
Winter 2010
Debbie strives
despite MSCOOLING REBATE P5State Government introduces a new electricity rebate for low-income Queenslanders with multiple sclerosis
FEATURE STORY P10Debbie Smart was diagnosed with MS, but it didn’t stop her from moving to Africa to help vulnerable children
RESEARCH NEWS P15MS Research Australia provides you with the latest updates on MS research
MS Life MS Australia – QLDWinter 2011
EMPLOYMENT AND MSSee how Queensland took part in World MS Day celebrations this year
Employment Power
MS AWARENESS WEEKRead about the lip smacking campaign that had everyone talking about MS
MS AND SESPwMS Josie Montano helps during Queensland’s floods and cyclones
VIRAL MS CAMPAIGNLearn what Mayor of Ipswich Paul Pisasale feels about employment and MS
MEMBERSHIP: JOIN US TODAY
MS1192_MembershipDLJul13_Art01_sd.indd 17/07/13 3:39 PM
In recent months we’ve had two major additions to our Regional Service Coordinator (RSC) service and opened not one, but two, new offices in Queensland.
We know that our staff need to be ‘on the ground’ in local communities in order to fully understand the local MS issues and build the critical networks and partnerships with health and community service providers to best support your needs.
So in August we opened a new Logan and Gold Coast office based at Varsity Lakes and run by our RSC Sharyn Shields, and in October we opened a new Central Queensland office, run by our new RSC Lynette Ellison based in Rockhampton.
These two offices will bring a more personalised service to more than 550 people living with MS in their local areas. The offices are already becoming a hub of activity for:• meetingsoflocalMSsupportgroups;• aplaceofbelongingforourstaffandclients;and• avenuetohostinformationandeducationalsessionsfor
people living with MS and other neurological conditions.
DID YOU KNOW WE RECEIVE LITTLE GOVERNMENT FUNDING FOR THIS PARTICULAR SERVICE?
It’s true. These two new offices marka$600,000investmentfrom MS Queensland over the next three years into regional Queensland. And it’s the generous
contributions of our wonderful fundraisers have made this happen – by both holding community based events and participatinginourMSBigDinnerParty,MSBrissietotheBaybikerideandtheregionalMSSwimathons(justtoname a few).
To use our local RSC service you must be a registered client with MS Queensland. To enquire about our RSC service please contact our InfoLine on 1800 177 591 or email [email protected]
New OFFICeSMS QUEENSLAND
State and local government representatives with MS Queensland staff at the Gold Coast office opening.
Introducing our new Gold Coast and Central Queensland offices.
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We’re proud to share that our 2013–14 MS Queensland Annual Report is now available. Last year’s report took out thetopprizeinthe$5millionto$30millionrevenuecategoryof the national PwC Transparency Award for our excellence in annual reporting – an award program recognising the Australian charities with the most rigorous and transparent reporting on finance, governance and strategy.
Butwethinkthisyear’sannualreportisourbestyet–ifit’s even possible! Themed ‘giving hope to people with MS on our journey’ the report details how we raise our money and how we spent it during the year. It also shares the stories of six young people living with MS, at various
stages of their MS, and highlights our commitment to continuous funding of MS research in Australia.
An e-version of the report can be downloaded from our website www.msqld.org.au If you would like a hard copy posted to you in the mail (within Australia) please call us on 07 3840 0888.
LAtESt ANNUAL REPoRt NoW AVAILABLE
givin
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ms queeNslaNd2013–14aNNual report
©2014 MULTIPLE SCLEROSIS SOCIETy OF QUEEnSLAnD ABn 56 731 473 412286 Gladstone Road, Dutton Park Q 4102 Locked Bag 370, Coorparoo DC Q 4151Phone: 07 3840 0888 Fax: 07 3840 0813 InfoLine: 1800 177 591 [email protected] www.msqld.org.au www.facebook.com/msqld www.twitter.com/#!/msqld www.youtube.com/user/MSAustraliaQ
2013–14 An
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“Today 4 more ausTralians will be Told They have mulTiple sclerosis. iT’s The mosT common neurological condiTion affecTing young adulTs, wiTh 3 ouT of 4 people diagnosed being women.
©2014 MULTIPLE SCLEROSIS SOCIETy OF QUEEnSLAnD ABn 56 731 473 412286 Gladstone Road, Dutton Park Q 4102 Locked Bag 370, Coorparoo DC Q 4151Phone: 07 3840 0888 Fax: 07 3840 0813 InfoLine: 1800 177 591 [email protected] www.msqld.org.au www.facebook.com/msqld www.twitter.com/#!/msqld www.youtube.com/user/MSAustraliaQ
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This year’s program featured special guest presentations from the University of Queensland’s Professor Ken Pakenham on ‘enhancing resilience for people with MS’ and former National Disability Services manager Valmae Rose on ‘the NDIS coming to Queensland’. This year’s program also included an exciting new panel discussion on ‘MS emerging treatments – hope versus risk’ facilitated by MS Research Australia CEO Dr Matthew Miles. Our guest panelists were Assoc. Professor Megan Munsie from StemCells Australia, ProfessorSimonBroadleyfromGriffith
CoNFERENCEWRAP UPagm
annuaL &
University and person with MS, Gary Allen who discussed a number of new treatments that are being developed to potentially help treat MS.
Watch our ‘Year in Review’ video and guest presentations are now available on our website at www.msqld.org.au
We’re already looking forward to planning next year’s AGM and Conference. To help us improve next year please provide your valuable feedback to us by email at [email protected]
THANK YOU JON
At the AGM we bid farewell to our outgoing Chair Jon Loraine, afterservingonourBoardfor12years and Chair for the last five. In this time Jon has always been a great supporter, leader and champion of the MS cause and we deeply appreciate his passion and commitment to the work of MS Queensland. We especially thank Jon for his pivotal role as Chair in preparing, guiding and strengthening our organisation for the road ahead.
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Thisedition’sguestwriterisKayeHooper,ClinicalNurseConsultantattheMSClinicattheRoyalBrisbaneandWomen’s Hospital. Kaye has 20 years of experience in providing clinical healthcare for people with MS. Kaye has co-authored an Encyclopaedia of Multiple Sclerosis and authored MS related articles and booklets for the National MS Society in America. Over the next four editions of MS Life, Kaye will cover a number of MS topics ranging from initial diagnosis, how to manage milestones and the role of specialists.
navIgatInghEaLth systEmWHEN YoU HAVE MS
tHE
Receiving a MS diagnosis can be life changing and everyone will have their own unique MS journey. Often your diagnosis can be the first time a serious medical condition has affected you and you will need to work out who to speak to and what to do. Knowing how to navigate the healthcareworldcanbeveryoverwhelming!Belowweanswer some of the most commonly asked questions for newly diagnosed people with MS and their families.
Which neurologist should I see?
All neurologists have specialist training in diseases of the central nervous system, including MS, however there are some neurologists who have a particular interest in MS. Neurologists with a special interest in MS will be up to date with diagnosis, management and treatments.
Do I need a GP who knows all about MS?
No, it’s not necessary to find a GP who specialises in MS. Your GP will be directed on MS care from detailed letters which will be sent to them after all consultations with your neurologist. Support for your GP can also be provided by MS nurses and other MS health professionals.
Where should I go for my specialist healthcare?
There are specialty MS Clinics available in a number of large city hospitals around Queensland that are free of charge for the diagnosis and management of MS. There are also neurologists who have private practice rooms for consultations and these doctors will admit patients to a private hospital for necessary procedures or treatments.
Should I choose public or private medical care?
The public health system gives people with MS healthcare free of charge, whereas there will be an out-of-pocket payment for services from neurologists in private practice (with some refund from your private health fund). When seeing a neurologist privately you will need to call ahead of your appointment to find out the out-of-pocket costs.
My family is worried too – what can they do?
It’s often said that when a person receives a MS diagnosis so does the family. Many resources are available for families and loved ones by contacting MS Queensland’s InfoLine (1800 177 591) and other MS healthcare providers are a good place to contact for help.
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How often do I need to see my neurologist?
This will vary on the individual but in the early days, when diagnosis and treatment decisions are being made, there may be frequent contact with your neurologist. After this time, it is usual to see a neurologist for a review every six to 12 months to check how things are going. If there are new problems or worsening of previous symptoms you may need to see a neurologist sooner – just give your neurologist, GP or MS nurse a call.
What if I live in a regional or remote location?
Many MS services are delivered through local healthcare professionals under the direction of a neurologist. Some symptoms of MS can be managed locally (e.g. physiotherapy, urologist, speech pathologists etc.) as they have the expertise in these specialised areas. For people living in rural and remote areas in Queensland there is also a patient transport subsidy scheme that supports travel to see a specialist MS neurologist.
What part do I play in deciding about my healthcare?
All decisions made about healthcare and treatment options are made together by you and your neurologist. Concerns and preferences should be discussed and having an open and frank discussion about any issue is a good approach. There are many aspects of a person’s daily life that will shape the decisions made and it is important to make the best choice and treatment plan suited to you.
What can local healthcare services do for me?
Local healthcare services are the network of support for all people in communities around Queensland. GPs and other community service providers can offer a range of services. MS Queensland offers a Regional Service Coordinator (RSC) service providing personalised care across the State.
Note: To access this service you must be a registered client of MS Queensland. Call 1800 177 591 for more information.
How do I link with my MS healthcare specialists and other community services?
Having your own ‘support team’ is good. It will help you know who to call when there is a problem or query about something of concern. You will learn how to discern problems and remember, not everything that affects you is linked to your MS. Contact your GP, MS specialist, MS nurse or MS Queensland so that you can talk through things.
If you have a question about MS or navigating the healthcare system please call our InfoLine on 1800 177 591 or email [email protected]
MS Clinic Nurses Kaye Hooper (left) and Bernie Gazzard
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To help alleviate this situation from happening, MS Queensland is investing in a number of alternative housing options around south-east Queensland. The first of many projects is ‘Spectrum Apartments’ at Lutwyche.
InearlySeptemberBrisbaneHousingCompany’s(BHC)CEO David Cant and the Deputy Premier and Minister for State Development, Infrastructure and Planning Jeff Seeney turnedthefirstsodonSpectrumApartmentsinBrisbane’s
north.TheBHCdevelopmentwasmade possible by the provision of 4,370 square metres of prime state-owned land on Lutwyche Road.
The$13milliondevelopmentwilldeliveratotalof60affordable and private apartments and retail spaces, of which MS Queensland will purchase four purpose-built adaptable apartments, providing quality affordable housing for people living with MS in the area.
WeareproudtobepartneringwithBHConthisproject.Construction of Spectrum Apartments is scheduled to start earlynextyearandexpectedcompletionis2016.
For more information please contact our Director of Services Karen Quaile at [email protected]
MSWe are working on a 10 year plan to create many more opportunities for people living with MS and other neurological diseases to remain in their own homes, for aslongastheycan.Butifaperson’sconditionprogressestoneedingahigh-careage-appropriate housing solution, the available options are extremely limited. For young people living with progressive forms of MS this is especially true and aged-care accommodation is often the only option.
Energy rebatesFoR SoUtH-EASt QUEENSLANDERS
affordable housing PRoJECtS oN tRACK
Here’are some tips to consider that could save you money:
connect to the Economy Tariff 33 – you could save hundreds of dollars and receive a financial rewards (certain items are great to run outside of peak times, like your pool pump). replace your hot water system – connect your existing or new system to an economy tariff and you could claimupto$200andupto53%onyourhotwaterbill.
This time of the year the days are long and hot, often having a significant impact on people with MS. We are continuing to work with Government to share your heat-related issues and the affect the heat has, and in-turn on your energy costs.
BHC CEO David Cant with MS Queensland Board Member
Wendy Lovelace and CEO Lincoln Hopper
on 8 November this year we turned another ‘sod’ for a second housing development at Albany Creek in partnership with Youngcare and the Queensland Government. A total 11 units will be built – eight for people with a disability with ageing parents who are unable to continue to care for them at home. Construction starts early 2015 and will be completed mid-2016.
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replace your air-conditioner with a new, energy efficient PeakSmart air-conditioning unit – you could receive arebateofupto$500fromEnergex.PeakSmarthelps reduce peak demand without affecting your air-conditioner’s performance.
For more information on how to access these energy saving methods please contact your energy retailer.
You can also check rebates for pensioner concession card and healthcare card holders at www.dews.qld.gov.au by searching ‘electricity rebates’. Some of these include: Electricity Rebate; Medical Cooling and Heating Electricity Concession Scheme; Home Energy Emergency Assistance Scheme; and Electricity Life Support Concession.
If you would like to discuss energy rebates that may be applicable to you contact our Advocacy Manager Natalie Walsh on 07 3840 0823 or email [email protected]
Earlier in the year we were fortunate to be awarded a Cecilia Kilkeary Foundation grant to help initiate and support two new exercise groups in regional Queensland for people living with MS.
Since then, our physiotherapy team have partnered with local exercise service providers in both Rockhampton andHerveyBaytostartupthegroupsanddetailswillbe released in early 2015. Specific exercise options for people living with MS are limited in many regional areas. It is hoped these groups will go some way towards addressing the need for these services.
Our physiotherapy team are excited to be growing our presence in regional areas and are planning several regional visits in the near future. As part of these visits, the team plans to provide more educational opportunities and undertake consultations with our registered clients where it’s needed. We’re also planning to work closely with local service providers to increase their capacity and confidence to support some of the physiotherapy needs of people living with MS.
PHYSIo EXERCISEMORE
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For more information on these new initiatives and regional MS exercise options, please contact Linda Wilson-Marks from our Physiotherapy Department on 07 3840 0841.
Note: please check with a healthcare professional before commencing any new exercise or movements that your body is not familiar with.
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Earlier this year we were chosen as the Gold Coast
Titans charity of choice for a month. The Titans invited members of the Gold Coast MS Support Group to join their Strength and Conditioning Coaches, Physiotherapist and Titans fullback Will Zillman for a special ‘Exercise Training for MS’ session inside the Titans gym.
The session started off with a warm-up walk around the stadium, followed by a stretching session, strength work and circuit drills. Head Strength and Conditioning Coach, Dan Ferris, said regular exercise in the daily routine of people living with MS was vital in managing the condition.
“There seems to be a common misunderstanding that exercise can be damaging for people living with MS, where actually it’s the total opposite – studies have shown physical exercise is well tolerated by those living with MS. In fact it improves both physical and mental functioning,” he said.
It was a hard exercise session but support group member Gail Harbott said “I found it exhilarating and a great
challenge. I’ve now found myself excited about a new challenge – boxing. It’s great for my upper body strength!”
Following the session, the support group were joined by other Titans players and staff for a morning tea. Gail said “they treated us like we were part of the family which is what the Titans are – one big family”. A big thank you to the Titans who have been, and continue to be, great supporters of MS Queensland.
If you’d like to fundraise in your community please call 07 3840 0887 or email [email protected]
MS FUNDRAISERSIN tHE CoMMUNItY
Gold Coast MS Support Group with Titans players
I know that many people have already proactively contacted their elected member and I would love to share your experiences with the wider MS community.
Our MS Ambassador, Gary Allen, recently met with his local membersandwasverypleasedwiththeoutcome.BothGary’s State member and opposition member were very interested in what he had to share, including the impact that energy and its associated financial costs has on the lives of people with MS and issues regarding the NDIS coming to Queenslandin2016.AsapassionateMSAmbassador,Garyhas offered to help you with contacting your local member, should you want his help. Simply contact me for his details.
Just like MS, no two meetings with politicians will be the same. Everyone has different issues that they want to raise and every opportunity that you take to engage with your local member will be invaluable. So if you have an opportunity to meet, please get in contact with me to discuss some common issues faced by people with MS across Queensland that are important to mention.
If you have any questions or would like assistance to write or meet your member of Government please contact Natalie on 07 3840 0823 or email [email protected]
Who is yourlocal politician?Our world is shaped by decisions made by Government. You may not care about politics or even politicians but everyone cares about the decisions made by Government on our behalf.
What do you want from your elected member? With only months until the next State election now is the time to let them know.
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Spend ten minutes with Ron Grove and you’ll be mesmerised by his stories. We recently spent a morning chatting withRon,whohasbeenlivingwithMSsincetheearly1940’s–longbeforeMSwasabletobeclearlydiagnosed.
PriortohisMSdiagnosisin1976,Ronserved our country in Papua New Guinea during World War II. He was just 17 years old and attending Nudgee College when his vision became affected and he was given glasses to manage his optic neuritis.
Itwasn’tuntilthe1970’swhenRon’swork colleagues made remarks about his clumsiness and ‘wobbly walk’ that it led him to visit his GP.
“My doctor, unable to find a cause, referred me to a neurophysician who, after extensive diagnostic tests and almost two years, revealed that MS was the most likely cause of my problems.”
“Thinking back over the events of my life soon made me realise that the optic neuritis I’d experienced in my early teens was the first appearance of MS.”
Unable to let negativity and indecision run his life, Ron came to the realisation that the most important thing in life was his family and a commitment to his wellbeing and health.
“I’d had MS in a ‘dormant state’ throughout my war service and working life and didn’t even know it.”
our physiotherapy and hydrotherapy services at our Dutton Park Clinic twice a week for 25 years; enabling him to remain mobile until he moved into a nursing home five years ago.
Buttheeverspirited91-yearoldremains optimistic as he talks about his life with MS.
“As I travel along life’s way I am consoled by the satisfaction of my past achievements and have the impetus to continue from faith and hope of even better things to come.”
youngyEars
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“MS has taught me about the natural way of living. It’s made me change my outlook on life and reprioritise.”
Husband to his beautiful wife Lorna – who sadly passed away earlier this year – and father to John, Theresa and Paul, Ron decided that if he had to live with MS, he would do so under the best conditions available. So he went on to lead a natural lifestyle with the mindset “if it doesn’t grow on a tree, I won’t eat it.”
Embracing this positive and can-do attitude towards life, Ron also used
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FOR LIONEL “GREM“ WARRINGTON BEINGASELf-EMPLoyEDfIBREGLASSBoATBuILDERANDTHESTATEPRESIDENTofABIKECLuBINQUEENSLAND WAS KEEPING HIM ACTIvEANDBuSy.THATWASuNTILMS STOPPED HIM IN HIS TRACKS.
grEm’s ms journEy
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Grem was diagnosed with MS in May 2012 after suffering symptoms he can now date back to 2007. He knew “something wasn’t quite right” and in 2010 his MS symptoms had escalated. He started experiencing slurred speech, severe dizziness, dragging of his left leg and bowel and bladder problems.
A multitude of tests later, Grem was told he had MS. At the time he said “it just confirmed what I already knew. It was the cherry on the top that I had actual confirmation it was multiple sclerosis. Now I just needed to deal with it.”
Grem had spent months trying to self-diagnose his symptoms using ‘Dr Google’ and was overwhelmed by the amount of information on the web. He decided to see a
neurologist for a solid diagnosis. Two years on and despite going through some trying times, Grem now has a positive attitude towards his MS and tries not to let MS run his life.
Butthiswasn’talwaysthecase.
Up until last year Grem was angry at his situation to the point where he was becoming self-destructive. He felt that MS had robbed him.
In those early stages for Grem, life with MS was tough and lonely. Two days after being diagnosed his long-term girlfriend left him. He has had some support from his parents but they’ve been reluctant to fully educate themselves about his MS. Grem found himself in a bad place where his MS was significantly affecting his life and he felt like an “emotional wreck”.
Grem made the decision to spend time with others with MS and it was here where he found some solace; confiding in another bike club
member living with MS.
It was at this time Grem turned to MS Queensland and
contacted our Psychologist Aart Simons.
“Aart just understood me and was a channel for me to talk to. He’s so supportive and encouraging and has done what a support network should have done.”
Two years on and Grem’s consultations with Aart are less regular, but he knows that Aart is there whenever he needs him. Having someone to talk to from MS Queensland where he could be himself has positively impacted how Grem views his future with MS.
“Don’t stick your head in the sand – MS doesn’t mean the end of the world. It means you get to create a new you, a better you.”
Now retired, Grem spends most of his time doing work for his bike club. He also hopes to be an example for others and has set up a ‘MS and other incurable diseases’ support page on Facebook. This group gives people the opportunity to connect with others who can relate to what they’re going through. Grem has had to deal with MS mainly on his own and he wants to avoid this from happening to other people.
“I believe you CAN get on with life with MS. Since being diagnosed I have learnt to value four key things; love, honour, loyalty and respect.”
“Yes I am 41 and I do have MS – but I’m still riding a 400kg bike and I am not afraid to do so.”
To find out more about our counselling and psychology services contact our InfoLine on 1800 177 591 or [email protected] For a full list of the services we offer please visit our website www.msqld.org.au
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MS Swimathons are such an important part of our event calendar, especially in regional areas. They bring the MS community together, raise money for local services, help us build relationships and support networks and raise more awareness of MS. We’ve seen a number of people this past year who are living in isolation, come along to a swim and connect with other people living with MS. We’d love to see every swim become a celebration of friendships!
Our focus now turns to our 2015 events on the Gold Coast (28 February), Mackay (8 March), Rockhampton (21 March), Cairns (28 March) and townsville (3 May). We’re especially excited about this year’s Cairns MS Swimathon being held overnight for an extra challenge – from 8pm to 8am.
If you live in any of these regions we’d love to see you at the pool. Registrations are now open for the Gold Coast and Mackay, and registrations for Rockhampton and Cairns will open in January. Go to www.MSswimathon.com.au and sign up today. Join the fun and take advantage of our early bird discount rates!
As the weather warms up the MS Swimathon season is also getting into full swing with three successful swims held already at Griffith University, Toowoomba and Jindalee. The new season has seen celebrity swimmers, new rules and stacks of first-time participants making it a great day out for everyone involved.
We’ve been blown away by the interest our MS Swimathons are generating – not only with the public but also with great local organisations who want to support us – it’s always enlightening to see people from all walks of life coming together to do something positive for people living with MS. We are well on our way towards smashing our goal of raising $270,000!
TheBigDinnerPartyiscominginMarchandisagreatexcuse to invite some friends over and cook for our fabulous cause. It’s simple. Invite people over for a delicious meal and ask them to donate to MS Queensland in lieu of what they would have spent on a meal out. Hosts who register early will receive a special host gift – but hurry, stock is limited! For more information call us on 07 3840 0828 or visit www.BigDinnerParty.com.au
ms sWImathonssPLashIng aLLovEr thE PLaCE
BIG DINNER PARtY IS baCk!
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✔ support cardiovascular functions ✔ warm legs with less or no pain✔ ease spasms increase mobility
MOTOmed Passive/active exercise. Assist in your own rehab.
Ideas move more
PHONE 1800 994 408www.abilityinmotion.com.au [email protected]
SErvO POwEr ASSiST Up to 55km range, SWL 150kg, 2 programmes – 10 levels, airport mode, no stud axles, includes remote.
Next year we’re celebrating the special 25th anniversaryoftheMSBrissietotheBaybikerideandwe’vegotsomefantasticthingsplannedtoacknowledgethe achievements of our past and present riders! Help us celebrate on Sunday 21 June 2015 by gathering your friends and family, and riding together in our biggest ever event to fight MS. Choose from one of four courses including therelaxing10kmridealongtheBrisbaneriverside,the25kmcourseouttoBalmoralandback–orifyou’refeelingadventurous,whynottrythe50kmor100km scenic course out to Wynnum while enjoying water views as you ride.
Registrations are now open for our 25th birthday ride. Register today and take advantage of our super-duper discounted entry price – it won’t last long! For more information on the ride call us on 07 3840 0828 or visit www.BrissietotheBay.com.au
If jumping in the pool, cycling, or walking doesn’t sound like your cup of tea but you’d still like to help support the MS cause, why not buy a ticket in our MS Limited Edition Lottery? You’ll also have a chance to win great prizes so why not treat yourself to a Christmas present? We have one of Australia’s best-odds luxury car lotteries and it’s a rewarding way to support our cause. Spread the word with your friends, families and colleagues and visit www.mslimitededition.com.au today to purchase your tickets. You can also Freecall during office hours on 1800 060 210.
This year’s MS Moonlight Walk saw 3,300 participants, including 200 people livingwithMSandtheirlanternswalkthebanksoftheBrisbaneRiver,overtheStoryBridgeandthroughtheBotanicGardens.Surroundedbyfriends,family and the MS community, everyone joined together to walk in the fight against MS. This year more than $464,000 was raised to support people living with MS – this will help our work towards our vision of a world free from MS and it’s devastating impact. Thank you to all participants and their generous donations for making this year’s MS Moonlight Walk a success!
BIGGEST ever MS Moonlight Walk
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Queensland University of Technology and most recently, James Cook University in Townsville. The services that have resulted directly from these partnerships include:• one-on-onecounsellingand
psychology support through provisional psychologists based in Dutton Park;
• thetrialanddevelopmentofthe‘READY Resilience’ group program for people with MS offered in five sites in south-east Queensland;
• anew‘MindfulnessandMS’program (see below); and
Over the past few years we have been working to establish partnerships with universities across Queensland.Bypartneringwithpsychology departments, we’ve been able to build on the body of knowledge on adjusting, coping and living with MS. We have been working with both psychology undergraduates and Masters students – allowing us to ultimately expand our counselling service to support more people with MS.
To date, we have partnered with the University of Queensland,
DID YoU KNoW? WE’RE BUILDING UP oUR PSYCHoLoGY SERVICE
BuildingPartnerships
• thepilotofa‘LivingWellwithMS’group program in Townsville.
We look forward to continuing with these established partnerships and up-skilling current psychology students. We plan to further expand our university partnerships and will be targeting universities in Central Queensland in 2015.
If you have a question about our counselling services and other MS programs, please contact our Community Services Manager Margaret Hegarty on 07 3840 0816.
“The ‘Mindfulness and MS’ program has helped me move past the negative feelings and thoughts around living with MS.” Client with MS
“The course allowed me to meet so many other people living with MS and I now feel less isolated and more supported in my life with MS.” Client with MS
In collaboration with the University of Queensland’s School of Psychology we recently held a five week ‘MindfulnessforMS’programinbothnorthBrisbaneandBeenleigh.TheprogramwasfacilitatedbyElizabethSpitzerunder the supervision of Professor Kenneth Pakenham.
Mindfulness refers to paying attention to the present moment with openness, curiosity and flexibility. The ‘Mindfulness for MS’ program consisted of five, two hour weekly sessions that included mindfulness exercises, discussions, mindfulness meditation and home-based mindfulness practice. More than 20clientsparticipatedintheprogram–78%ofwholivewithrelapsing-remitting MS. The average age was 48 years old and91%ofourparticipantswerefemale.
To evaluate the success of the program, participants were asked to complete a questionnaire before and after the program. At the end of the program participants felt significantly less depressed and stressed, and had a better quality of life. Most people said the program helped them step out of ‘autopilot’ and be more present, change their perspective on life with MS, as well as allowing some to be more compassionate and accepting of themselves.
As part of our ongoing commitment to service delivery, we are currently planning our schedule of educational programs for 2015. If you would like more information please contact our InfoLine on 1800 177 591 or [email protected]
MINDFULNESS FoR MS
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was his only choice. Through simple changes to his nutrition and portion sizes of meals the weightfelloff–all16kgsofit.
“I’m living proof that you don’t need intense exercise to get results – a lot of changes can be made in the kitchen. You just need to have the willpower to stay strong.”
And he’s inspiring others; with two other Granston Lodge residents
also opting for healthier food options since seeing his weight loss efforts.
“I appreciate that I have my food prepared for me because I’m unable to cook
it myself, but my new eating with a balance of salad, lean meat, eggs and fruit is easy for anyone to manage and maintain.”
Ron said he also feels less fatigued, has more energy and generally feels better all around. The highlight of his weight loss journey has been not only being able to fit into his wedding suit, but accompanying his daughter down the aisle and enjoying her wedding day as a happier, healthier man.
If Ron’s journey has inspired you, you can download the ‘Food and MS’ resource on our online resource centre at www.msqld.org.au/msresources/information-on-ms
HoW RoN LoSt 16KG BY MAKING SIMPLE CHANGES.
For Ron Vella, who lives with progressive MS in our accommodation facility Granston Lodge, he wanted to look great for his second daughter’s wedding. Weighing 88kg this time last year, a passing comment “Ron’s getting big” from a friend to his wife on an evening out was enough for him to make a change.
“With a year to go until my daughter Kate’s wedding, I wanted to be able to wear the same suit I wore at my first daughter’s wedding so I was determined to lose the weight.”
BeingconfinedtoawheelchairRonknewhewasn’tgoing to be able to exercise, so changing his food intake
1Reduce the size of your meals – you
don’t need as much as you think!
2Cut out as much sugar as you can
– almost everything has sugar in it.
3Cut down the amount of bread
and cereal you are eating.
4Make sure you get some good
protein in your diet like eggs.
5Try an amount of ‘apple cider
vinegar’ after dinner to aid digestion.
HEALtH And ms:
keeping it simple
Ron’s tips for healthy living
NAtIoNAL MS ADVoCAtE LEADS ANNUAL CoNFERENCE
A better disability support pension, support services and information for people living with MS are high on the agenda for newly appointed MS Australia Advocacy Coordinator, Andrew Potter and other MS Advocates who met recently with Federal politicians. Also important national policy issues – including the proposed GP co-payment and the Aged Care/NDIS interface – were shared recently by Andrew and other national advocates from across Australia.
With more than 1,000 people being diagnosed with MS every year, one of MS Australia’s and Andrew’s first goals is to increase the number of advocates; “what we share is a commitment to living life to the fullest. together we have such a strong voice that can deliver a powerful message.’’
His newly appointed role as national MS Advocacy Coordinator is a natural progression. Andrew has lived with MS for 25 years and has been a long-term advocate for people with MS.
If you have a question about the National MS Advocates Program please contact our Advocacy Manager Natalie Walsh on 07 3840 0823 or [email protected]
NEWRon would like to acknowledge the support of the Granston Lodge staff, kitchen staff and his family for supporting his new healthy lifestyle.
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ANNUAL MSLEoNIE KING FRoM BRISBANE
Leonie King was diagnosed with MS over 20 years ago. Fortunately her symptoms have, at most times, been manageable. She’s experienced loss of her peripheral vision, chronic fatigue, and problems with balance and standing for periods of time.
For Leonie, being diagnosed two decades ago meant there were very limited services and MS specific treatments available. After what seemed like years of having various tests Leonie was finally given the diagnosis of MS and thought “thank god for that – at least I know what I’m fighting.”
It was her neurologist’s letter confirming she had MS thatledLeonietoMSQueensland.Beingconnectedwith our organisation meant she was able to speak to our staff about what she was dealing with, and in recent years Leonie has relied on the support of our Regional Service Coordinator (RSC) team.
“My RSC and I have overcome many hurdles together and have fought some big battles recently.”
Being57yearsoldandwantingtostaylivinginherownhome, Leonie worked with her RSC to get in-home help. Lorraine helped organise funding to have carers come into Leonie’s home each day.
“I found that getting care is very confusing until you get to understand it – and with the NDIS coming people will be given their own choice so you need an RSC tohelpexplainit.Beingabletostayinmyownhomemeans everything to me – it’s just me and my little dog Bundyandthat’sallIneed.”
For more information on the support a local Regional Service Coordinator can give you, please contact our InfoLine on 1800 177 591 or visit www.msqld.org.au
support
ForumGroupsms
LeonieandBundy
It was a productive day bringing together members from 20 People with MS Support Groups across Queensland (PwMSQ) for the annual forum on Thursday 27 NovemberinBrisbane.
Last year’s inaugural event was so well received that it was decided the initiative should become an annual event – held alongside our Annual Conference and AGM. Supported by the Ann Langley Scholarship – in recognition and memory of unique and remarkably dedicated MS Advocate Ann Langley – groups came together last month to share ideas and to find new ways of meeting the needs of people with MS through our peer-to-peer support group network.
Attendees wasted no time reconnecting – travelling from as far north as Cairns, down to the southern border on the Gold Coast and everywhere in between.
This year five new support groups have started to support young people living with MS. The convenors of these groups shared their own strategies for making their support groups approachable for younger people with MS in their own communities. The NDIS experiences of people living with MS in Victoria and New South Wales were also discussed.
We’re looking forward to continuing the energetic conversation that came from this year’s PwMSQ Forum. If you would like more information regarding PwMSQ Support Groups please contact our Director of Services Karen Quaile on 07 3840 0840.
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“How life changes! 18 months ago at the age of 42 I was excitedly on the way to starting the 1300th-odd school in Queensland. Packing in all the things that I thought should make a successful State High School to give the best opportunities for kids.
Today, I’m trying to get back to that, with the weight of big wet sandbags attached to my legs. My journey has been side swiped by MS.
When I was diagnosed in 2012, I packed my MS in a box and kept on starting my new school.
My legs got heavier; every single step was a ridiculous effort. I now use a walking stick and own a wheelchair.
MS fatigue and fogginess were other symptoms, however, I can safely say that this is under control. I did some research and discovered many believe gluten, dairy and sugar do nothing positive for people living with MS so I’ve cut these out and my fogginess has disappeared. I commonly hear “gee you’re looking good” – yes, I might on the outside probably because I eat so well, but it’s hard on the inside at times.
While all this has been going on, I have successfully re-engaged in continuing
to get a school up and off the ground! My employer has been excellent and the successful application for a ‘Federal Government Job Access’ grant saw an electric scooter delivered to my workplace. If my legs weren’t going to cooperate, then I’d go one better and trump them with a scooter! And I am now back; visible and leading my school forward again!
I have so much more I could share but hopefully, one can see (for me) doing nothing is not an option in fighting my MS.
If you have a living positively with MS story that you’d like to share please email us at [email protected]
DoING NotHING IS Not AN oPtIoNBySIANBuRRoWS
SianHoW
lives positively WItH MS
Although, what may appear a simple movement on land can be made more difficult in the water! So your muscles have to work hard to achieve the movement which is beneficial to your overall health.
Since completing our six week course and experiencing the above benefits of exercise in the water first hand, many Redlands participants are now exercising in their local and home pools.
We are very open to making ‘waves’ in a new location. If you’re interested in a water-based exercise program please send us your details and location.
For more information on exercise and MS please visit our website www.msqld.org.au or contact Linda Wilson-Marks from our Physiotherapy Department on 07 3840 0841.
Note: please check with a healthcare professional before commencing any new exercise or movements that your body is not familiar with.
Our physiotherapy team recently introduced a new water exercise
group in the Redlands region in response to local need. The six week
course started in September and the lovely Spring weather provided ideal water conditions for the participants. Those who took part in the course said they enjoyed being able to exercise in the water and were surprised by the level of exercise they could achieve.
Some of the benefits of water exercise include…• thewater’sbuoyancyandhydrostaticpressuremakesit
easier to stand so there are few swimming skills required;• it’sagreatopportunitytoexerciseinanuprightposition
with little support;• theviscosityofthewaterprovidesresistancewhichis
great for strength and balance training; and• waterworksto‘hold’yourbodyup,allowingtimefor
your balance ‘reactions’ to turn on.
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&This topic is one of our most downloaded resources from our website and one of the most commonly
asked questions from people living with MS at all stages of their MS journey. Our Information Coordinators pride themselves on keeping all of our resources and information up-to-date and driving is no exception. We are in regular contact with Queensland Transport to ensure the information we provide you is accurate and reflects the legal implications of driving in Queensland and Australia.
DrIvIngmuLtIPLE sCLErosIsQUEStIoNS WItH tIM
A passage very similar to this will appear in
virtually every resource on driving produced
around Australia from MS organisations.
Driving a motor vehicle is a complex task, requiring perception, good judgment, responsiveness and reasonable physical capability. Therefore a range of medical conditions, as well as treatments, may have an impact on your fitness to drive. A diagnosis of MS does not automatically mean that you are no longer able to drive. However the symptoms of MS are many and varied and, from time to time, may affect your ability to drive safely.
While always a difficult discussion, it’s important to remember that
driving is not a right – it’s a privilege. Driving offers independence and autonomy – however the effect of MS on driving varies from person to person; depending on your driving habits, your symptoms, and how severe those symptoms are. As many of you would know, MS symptoms can fluctuate from day-to-day or even between the morning and afternoon.
Some people living with MS change their driving habits without really acknowledging that they are experiencing driving difficulties. Small changes you can make include: • notdrivingatnight,orlimiting
driving to familiar areas near home;• onlydrivingduringhigh-energy
times;• refusingtodrivewithfamilyor
children in the car; or
• findingalternativewaystoperformspecific functions.
tim MS Nurse Practitioner Manager of Specialist Education
If you have an MS-related question to ask our Manager of Specialist Education, please email Tim at [email protected]
If you have any questions or would like more information on your responsibilities as a driver with MS see page 23, visit our website www.msqld.org.au/msresources or call our InfoLine on 1800 177 591.
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MS AND DRIVING IN QUEENSLAND
One of the more commonly asked questions we receive is “can I still drive?” The good news is that having MS doesn’t mean you can’t drive, but it does mean that you need to be aware of the medical and reporting requirements with regards to driving. As the issues around driving and MS can be quite complex, we do our best to keep our resources up-to-date, in consultation with the Department of Transport and Main Roads, to ensure it’s as accurate as possible.BelowaresomeofourresourcesondrivingandMS which may assist you.
Driving with MS in Queensland This updated comprehensive resource covers what you need to know about assessing your fitness to drive for private and commercial vehicles. It also answers some of the more commonly asked questions and provides a handy summary about driving with MS in Queensland.
Driving and MS in Queensland NEW We recently developed this new resource to provide condensed information about driving with MS and Queensland legislation, your responsibilities as a driver, ways in which MS symptoms may affect your driving ability and safety and how to notify the Department of Transport and Main Roads about your MS.
Driving and your health This informative resource provides answers to your questions about the types of illnesses that might affect your ability to drive safely, your responsibilities, how your doctor can help you, what to do if you have a commercial licence and where to go for further information and assistance.
For more information about any of these resources, or to have a copy mailed or emailed to you, please email us at [email protected] or phone our InfoLine on 1800 177 591.
ms suPPort grouPs uPDatE2014 leaves us with another year of positive memories – ranging from new groups starting up to support the younger generation of people living with MS, to the ever-successful community fundraising events run by MS Queensland in the quest to fund services and support for Queenslanders living with MS.
At the latter end of the year the University of Queensland collaboratedwithMSQueensland.fouryoungBusinessMasters students connected with Queensland’s MS support groups and delivered an impressive and well-structured presentation showing the strengths of our groups that can be built on, and ways where MS Queensland can better assist and support these groups.
The increasing number of people being diagnosed with MS has never been more evident than it is today, with new technology making early diagnosis more prominent than ever. I wish to take this opportunity to thank everyone involved in our MS community, particularly the volunteers and the unseen heroes who give their heart and soul to make the lives of people with MS brighter.
Thank you to everyone who participated in this year’s MS Support Goups Forum. A group photo of everyone who attended is below.
Wishing all of you and your families a blessed Christmas with a New Year that brings health and hope.
Jenni State Convenor pwMS Support Groups
what you need to know about
dRIVInGIn queensland
Produced by Ms queensland
286 Gladstone road dutton Park QLd 4102 Locked bag 370 coorparoo dc QLd 4151
1800 177 591 (InfoLine)
www.msqld.org.au
your MS Queensland regional Service coordinator can provide support and information on possible options available to you.
MultIplescleRosIs
Your questions answered
For most people, being able to drive a motor vehicle is a very important part of their daily life – for maintaining social contact, for getting to and from work, and for accessing their everyday needs such as food and services. Driving can also be essential to employment.
But with the benefits of being able to drive also come certain responsibilities, and one of these responsibilities is to make sure you are well enough to drive safely.
Certain health conditions can affect your ability to drive safely, either in the short term or more permanently. This brochure explains:
• thetypesofillnessesthatmightaffectyourability to drive safely
• yourresponsibilities
• howyourdoctorcanhelpyou
• whereyoucangoforfurtherinformationandassistance.
what tYpe of health conditions might affect Your abilitY to drive safelY?Driving a motor vehicle is a complex task requiring perception, good judgement, responsiveness and reasonable physical capability. A range of medical conditions, as well as treatments, may therefore impair your driving ability. Common examples include:
• Blackouts or fainting
• Dementia and cognitive impairment
• Seizures and epilepsy
• Other neurological conditions
• Diabetes
• Psychiatric conditions
• Heart disease
• Sleep disorders
• Vision problems
• Alcohol and substance misuse.
Just because you have a disease or condition that might affect your driving doesn’t mean that you won’t be able to drive at all. It might mean that you have to see your doctor more often to check that your condition is well managed and it might mean that there are some restrictions placed on your driving.
who makes the rules about whether You are well enough to drive?The rules about health and driving are developed by medical experts and are agreed to by all driver licensing authorities.
Your doctor does not make the rules but provides advice about how your particular health condition might affect your ability to drive safely and how it might be managed. The driver licensing authority always makes the final decision about your licence status. They will consider the advice of your doctor as well as other factors such as your accident history and the type of vehicle you drive (for example a truck, car or a public passenger vehicle).
what are Your legal responsibilities?All states and territories in Australia have laws about reporting health conditions that might affect your ability to drive safely. These laws have been created to protect public safety.
The laws require you to report to your driver licensing authority, any permanent or long-term illness that is likely to affect your ability to drive safely.
Your doctor is able to advise you on whether or not you should be reporting a condition to the driver licensing authority. When you report your illness it doesn’t necessarily mean that your licence will be taken away. It does mean that the driver licensing authority can work with you and your doctor to manage your condition with respect to your driving.
what if Your condition is onlY temporarY?Many temporary conditions will prevent you from driving. For example, following an anaesthetic your doctor will advise you not to drive for 24 hours or more. An injury, such as a broken leg may also prevent you from driving. In these types of circumstances your doctor will advise you about the need to restrict your driving in the short term. In most cases your licence status will not be affected and you will not need to report the temporary medical condition to the driver licensing authority.
how will Your doctor assess whether or not You should be driving?When assessing your ability to drive safely, your doctor will consider your physical and psychological health. He or she will refer to a book of medical standards which is used by all doctors throughout Australia and which describes specific requirements for various diseases and conditions. You can view these standards on the internet at: www.austroads.com.au
Sometimes it can be difficult to make an assessment and your doctor may refer you for a practical driver assessment or to a medical specialist.
Driving and Your Health
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2015 CALENDAR of EVENTS
Unless otherwise stated, the views expressed in MS Life and submitted photography are those of individual authors and MS Clients, and not of MS Queensland. MS Queensland does not expect or invite any person to act or rely on any information, statement or opinion in MS Life, and readers should make and rely on their own inquiries, and obtain professional advice, before making any decisions or giving any advice arising out of any such information, statement or opinion. Neither MS Queensland nor any of its employees, agents or contributors shall be liable for any errors or omissions in any material in MS Life, and in no event will MS Queensland or any of its employees, agents or contributors be liable for any loss or damage arising from reliance on any information, statement or opinion in MS Life. Apart from any use permitted under the copyright act, no material in MS Life may be reproduced or communicated to the public in whole or in part without written permission from MS Queensland or the relevant copyright owner. © 2014 Advertising Disclaimer: Advertisements are provided to assist consumers to locate and purchase suitable products and services. MS Queensland does not endorse any one product or service over another, nor do we receive any commission on sale of items. Consumers are encouraged to discuss the options for purchase with the particular supplier as MS Queensland is not liable in the event the product is not satisfactory.
For more information contact the MS Queensland Events team on 07 3840 0828 or email [email protected]
novEmbEr
MSswimathon.com.au
MS Moonlight WalkMS Swimathon Toowoomba
& Jindalee
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MSswimathon.com.au
MS Swimathon Mackay
30 MAY 2012
DatesTBC
www.MoonlightWalk.com.au
23 oCtobEr
DonatE toDaYDONaTE TODaY
