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LIFE Autumn Edition 2009 LIFE Queensland QUEENSLAND Brissie to the Bay Introducing Facebook Portrait of Posterity Work of Aart Lynette Walks Again Events MS Readathon QUEENSLAND’S PREMIER MAGAZINE FOR PEOPLE LIVING WITH MS 5 6 IN THIS ISSUE... Multiple Sclerosis Society of Queensland CEO’s Message Catherine’s Story Our New Website Life at Annerley Update Feature Articles MS Readathon 30th Birthday Fatigue Research MS Services Services to support you & taking control 7 8 11 Notice of AGM 12 ABN 56 731 473 412 Phone: 07 3840 0888 Locked Bag 370 Coorparoo DC QLD 4151 Email: mssociety@msqld.org.au Brissie to the Bay Introducing Facebook Portrait of Posterity Work of Aart Lynette Walks Again Events www.msaustralia.org.au/qld LIFE QUEENSLAND MS Life How a young mum won’t let MS hold her back EMPLOYMENT AND MS MS AWARENESS WEEK MS AND SES VIRAL MS CAMPAIGN pg. 8 See how Queensland took part in World MS Day celebrations this year Read about the lip smacking campaign that had everyone talking about MS PwMS Josie Montano helps during Queensland’s floods and cyclones Learn what Mayor of Ipswich Paul Pisasale feels about employment and MS pg. 8 Nominate your MS Hero Fax: 07 3840 0813 Spring Edition 2009 Autumn Edition 2009 pg. 12 Working with MS Workshops pg. 15 QUEENSLAND LIFE Queensland Autumn 2010 QUEENSLAND’S PREMIER MAGAZINE FOR PEOPLE LIVING WITH MS 8 Multiple Sclerosis Society of Queensland ABN 56 731 473 412 Phone: 07 3840 0888 Email: mssociety@msqld.org.au Employment Power LOUISA ON A MISSION “We Have MS, But It Doesn’t Have Us!” Locked Bag 370 Coorparoo DC QLD 4151 www.msaustralia.org.au/qld QUEENSLAND MS Life How a young mum won’t let MS hold her back EMPLOYMENT AND MS MS AWARENESS WEEK MS AND SES VIRAL MS CAMPAIGN pg. 8 See how Queensland took part in World MS Day celebrations this year Read about the lip smacking campaign that had everyone talking about MS PwMS Josie Montano helps during Queensland’s floods and cyclones Learn what Mayor of Ipswich Paul Pisasale feels about employment and MS pg. 8 Nominate your MS Hero Fax: 07 3840 0813 LIFE >c&..(!a^[ZlVh\ddY#H]Vgdc7Vaa!i]Zc'-!]VY_jhigZijgcZY[gdb]ZglZYY^c\VcY]dcZnbddc ^ci]Z<gZZ`>haVcYhVcYlVhldg`^c\VhFjZZchaVcYBVcV\Zg[dgVgZXgj^ibZciXdchjaiVcXn#I]Zc Bjai^eaZHXaZgdh^hhigjX`#L^i]^cbdci]hd[]Zg[V^gniVaZlZYY^c\!H]VgdclVhan^c\^c]dhe^iVajcVWaZ idbdkZ[gdbi]ZcZX`Ydlc# 2 3 3 4 6 8 9 10 9 12 Lisa & Sandy tell... 286 Gladstone Road Dutton Park QLD 4102 BH6jhigVa^VXZaZWgViZh*%nZVghd[ZmXZei^dcVahZgk^XZidi]ZcVi^dc^c'%%+ Beea_d]7jB_\[J^hek]^:_\\[h[dj;o[i pg. 12 Working with MS Workshops pg. 15 One man’s struggle Living Positively against the odds with MS LIFE MS Australia – QLD QUEENSLAND Autumn 2011 Giving life back worldMSday KdajbZ(!6j\jhi'%%+ BH6jhigVa^VXZaZWgViZh*%nZVghd[ZmXZei^dcVahZgk^XZidi]ZcVi^dc^c'%%+ Beea_d]7jB_\[J^hek]^:_\\[h[dj;o[i Hde]^V^hdcZd[FjZZchaVcYÉh]^\]ZhiBHGZVYVi]dc[jcYgV^hZgh#I]^hnZVg!h]ZVcY]Zgbdi]Zg\VkZV heZX^VaegZhZciVi^dcidi]ZhX]ddaVhhZbWanidZcXdjgV\Zdi]Zghid_d^c^ci]ZfjZhiidÈgZVY[dgVgZVhdcÉ# >ci]^hZmXZgei[gdb]ZgheZZX]idi]Zeg^bVgnhX]ddahijYZcih!H]VgdcZmeaV^chl]Vi^iÉha^`Zida^kZ l^i]BHÄVcY]dlBH]Vh^che^gZY]Zgida^kZa^[Zidi]Z[jaa# MS CLINIC CONVERSATIONS Australian of the Year In depth answers to the most frequently asked MS questions Ambassador, National Panel Horse Judge and person with MS WORLD MS DAY GET PHYSICAL BRISSIE TO THE BAY McKINNON HOUSE How you can help the global campaign on employment and MS The link between exercise and quality of life for people with MS Brisbane’s biggest charity ride celebrates 20 years and its biggest ever event A new era of respite care in an idyllic setting on the Gold Coast Find out how you can take part Life at Annerley The official launch Summer Edition 2009 LIFE MS Australia – QLD Spring 2011 Giving life back QUEENSLAND 26 MAY 2010 MS CLINIC CONVERSATIONS ORAL TREATMENT JOINS PBS TREVOR FARRELL: GIVING LIFE BACK Q&A WITH MAYOR PAUL PISASALE Gilenya® is the first oral treatment for relapsing We celebrate the end of an era as Executive Director Trevor Farrell prepares to retire after nearly 30 years Meet one of the most inspiring people living with MS in Queensland, Mayor of Ipswich Paul Pisasale remitting MS to become available on the PBS Winter Edition 2009 LIFE QUEENSLAND us together! MS Australia – QLD Kate finds her dream job CCSVI DEBATE GIVING LIFE BACK FOR THE CAUSE PwMSQ Why MS organisations are proceeding with caution on new treatments The ambitious program to provide integrated and dignified care Meet the Queenslanders supporting MS research and regional services A new framework to expand and strengthen the MS support group network MS Life BRISSIE TO THE BAY McKINNON HOUSE Brisbane’s biggest charity ride celebrates 20 years and its biggest ever event A new era of respite care in an idyllic setting on the Gold Coast Life at Annerley The official launch Summer Edition 2009 QUEENSLAND I am 41 now, lived with MS for over 12 years and I am aware of the realities of this condition, understanding that the time may come when it could worsen. Maybe through diligent management, it won’t. I am praying that it won’t. When life hands you a bag of lemons – you simply go make lemonade!” B_l_d] M_j^ CI 3P]PUN>P[O4: MS Life Life at Annerley.... COMPLETED! MS gene discovery BREAKTHROUGH MS RESEARCH ORAL TREATMENT JOINS PBS TREVOR FARRELL: GIVING LIFE BACK Q&A WITH MAYOR PAUL PISASALE Scientists have identified the major common genetic variants that contribute to the cause of MS Gilenya® is the first oral treatment for relapsing We celebrate the end of an era as Executive Director Trevor Farrell prepares to retire after nearly 30 years Meet one of the most inspiring people living with MS in Queensland, Mayor of Ipswich Paul Pisasale remitting MS to become available on the PBS Winter Edition 2009 LIFE QUEENSLAND Giving back independence and dignity MS brought us together! Kate finds her dream job CCSVI DEBATE GIVING LIFE BACK FOR THE CAUSE PwMSQ Why MS organisations are proceeding with caution on new treatments The ambitious program to provide integrated and dignified care Meet the Queenslanders supporting MS research and regional services A new framework to expand and strengthen the MS support group network BOB AND KAREN’S LOVE STORY MS Life MS Australia – QLD MS Life MS Australia – QLD Winter 2010 Summer 2011 WHAT A YEAR IT HAS BEEN FOR MS WORLDWIDE Vitamin D The First Official Her Excellency Ms Penelope Wensley AO LIFE Autumn Edition 2009 LIFE Queensland QUEENSLAND 6 7 Events An 11 year old’s idea... MS Readathon New Record for 5 Work of Aart MOONLIGHT WALK Over 1300 people take a stroll through Brisbane to raise money for MS A GLOBAL MOVEMENT P3 How the world united with a common goal: to raise awareness of MS COOLING REBATE P5 State Government introduces a new electricity rebate for low-income Queenslanders with multiple sclerosis FEATURE STORY P10 Debbie Smart was diagnosed with MS, but it didn’t stop her from moving to Africa to help vulnerable children MSLIFE. MS Life RESEARCH NEWS Our New MS Ambassadors MS Research Australia provides you with the latest updates on MS research MCKINNON HOUSE FOR RESPITE p.6 8 12 3 4 “We Have MS, But It Doesn’t Have Us!” MS Life 6 7 Events Employment Power LOUISA ON A MISSION How a young mum won’t let MS hold her back pg. 8 pg. 8 Nominate your MS Hero pg. 12 Working with MS Workshops pg. 15 EMPLOYMENT AND MS MS AWARENESS WEEK MS AND SES See how Queensland took part in World MS Day celebrations this year Read about the lip smacking campaign that had everyone talking about MS PwMS Josie Montano helps during Queensland’s floods and cyclones QUEENSLAND LIFE Queensland Autumn 2010 MS Readathon New Record for 8 12 QUEENSLAND’S PREMIER MAGAZINE FOR PEOPLE LIVING WITH MS “We Have MS, But It Doesn’t Have Us!” MS Life MS Awareness Week 26 May - 4 June MS CLINIC CONVERSATIONS Jenni Australian of the Year In depth answers to the most frequently asked MS questions Ambassador, National Panel Horse Judge and person with MS LIFE QUEENSLAND WORLD MS DAY GET PHYSICAL BRISSIE TO THE BAY McKINNON HOUSE How you can help the global campaign on employment and MS The link between exercise and quality of life for people with MS Brisbane’s biggest charity ride celebrates 20 years and its biggest ever event A new era of respite care in an idyllic setting on the Gold Coast Life at Annerley The official launch Jonathan Loraine and Bruce Milligan MS Life Summer Edition 2009 LIFE MS Australia – QLD Spring 2011 Giving life back QUEENSLAND Summer edition 2009 pg. 8 pg. 8 Nominate your MS Hero pg. 12 Working with MS Workshops pg. 15 MS gene discovery Phone: 07 3840 0888 Fax: 07 3840 0813 Email: mssociety@msqld.org.au www.msaustralia.org.au/qld BREAKTHROUGH MS RESEARCH ORAL TREATMENT JOINS PBS TREVOR FARRELL: GIVING LIFE BACK Q&A WITH MAYOR PAUL PISASALE Gilenya® is the first oral treatment for relapsing We celebrate the end of an era as Executive Director Trevor Farrell prepares to retire after nearly 30 years Meet one of the most inspiring people living with MS in Queensland, Mayor of Ipswich Paul Pisasale remitting MS to become available on the PBS Winter Edition 2009 LIFE us together! LIFE QUEENSLAND WORLD MS DAY GET PHYSICAL BRISSIE TO THE BAY McKINNON HOUSE How you can help the global campaign on employment and MS The link between exercise and quality of life for people with MS Brisbane’s biggest charity ride celebrates 20 years and its biggest ever event A new era of respite care in an idyllic setting on the Gold Coast Kate finds her dream job GIVING LIFE BACK FOR THE CAUSE PwMSQ The ambitious program to provide integrated and dignified care Meet the Queenslanders supporting MS research and regional services A new framework to expand and strengthen the MS support group network MS Life VIRAL MS CAMPAIGN Life at Annerley The official launch Summer Edition 2009 LIFE MS Australia – QLD Spring 2011 Giving life back Multiple Sclerosis Society of Queensland 286 Gladstone Road Dutton Park QLD 4102 Locked Bag 370 Coorparoo DC QLD 4151 ABN 56 731 473 412 QUEENSLAND Phone: 07 3840 0888 Fax: 07 3840 0813 Email: mssociety@msqld.org.au www.msaustralia.org.au/qld I look at MS as a rewarding challenge and not a disability. It is an acceptance of whatever cards are dealt to you in this life. It is your choice on how you are going to manage that hand. I guess I look at life through different eyes these days and tend to live in the moment. I have managed this Just before Sophia’s fifth birthday condition through positive (she is 10 now), my Mum asked Sharon and Sophia Ball with thinking, meditation, pilates, her what her three birthday their puppy Millie swimming, diet and an wishes were. She stated that amazing amount of love and she “would LOVE a violin, a friendship. I had been totally drug free for 7 years poodle puppy…but most of all Grandma I would opting for natural therapies. However after much love a cure for MS and that Mummy’s legs would resistance, in 2001, I went on injection treatment work properly again”. She received the violin which can lessen the severity of relapse. and recently Millie the poochon puppy, and is still waiting for the gift of a cure. I was totally needle phobic and now I inject myself daily: I am up to about 2000 injections so far! I have I am 41 now, lived with MS for over 12 years learnt to walk from scratch about 16 times and have and I am aware of the realities of this condition, been blind twice. understanding that the time may come when it could worsen. Maybe through diligent management, MS has been a gift to me as it has given me a it won’t. I am praying that it won’t. sense of urgency about life, encouraging me not to procrastinate about what I would like to do one day. When life hands you a bag of lemons – you simply I definitely do not want pity…there are many people go make lemonade!” B_l_d] M_j^ CI 3P]PUN>P[O4: MS Life QUEENSLAND MS Australia – QLD MS gene discovery BREAKTHROUGH MS RESEARCH ORAL TREATMENT JOINS PBS TREVOR FARRELL: GIVING LIFE BACK Q&A WITH MAYOR PAUL PISASALE Scientists have identified the major common genetic variants that contribute to the cause of MS Gilenya® is the first oral treatment for relapsing We celebrate the end of an era as Executive Director Trevor Farrell prepares to retire after nearly 30 years Meet one of the most inspiring people living with MS in Queensland, Mayor of Ipswich Paul Pisasale remitting MS to become available on the PBS Winter Edition 2009 MS Australia – QLD Winter 2010 Summer 2011 Giving life back A YEAR OF EMPLOYMENT AND MS MS Australia – QLD Spring 2010 Questions about MS? We’ve got the answers you’re looking for Life at Annerley.... COMPLETED! LIFE AT ANNERLEY... MS SOCIETY OF QLD PURCHASES PARTIALLY COMPLETED TOWN HOUSES AS PART OF LIFE OPTIONS who are worse off. I love my life and I look forward to everything that life offers. Then without announcement, I can be back as the resident celebrity in hospital learning to walk again. LIFE Giving back independence and dignity MS brought us together! Kate finds her dream job CCSVI DEBATE GIVING LIFE BACK FOR THE CAUSE PwMSQ Why MS organisations are proceeding with caution on new treatments The ambitious program to provide integrated and dignified care Meet the Queenslanders supporting MS research and regional services A new framework to expand and strengthen the MS support group network BOB AND KAREN’S LOVE STORY MS Life MS Life h us t i w p i h s er Giving life back A YEAR OF EMPLOYMENT AND MS WHAT A YEAR IT HAS BEEN FOR MS WORLDWIDE Learn what Mayor of Ipswich Paul Pisasale feels about employment and MS >c&..(!a^[ZlVh\ddY#H]Vgdc7Vaa!i]Zc'-!]VY_jhigZijgcZY[gdb]ZglZYY^c\VcY]dcZnbddc ^ci]Z<gZZ`>haVcYhVcYlVhldg`^c\VhFjZZchaVcYBVcV\Zg[dgVgZXgj^ibZciXdchjaiVcXn#I]Zc Bjai^eaZHXaZgdh^hhigjX`#L^i]^cbdci]hd[]Zg[V^gniVaZlZYY^c\!H]VgdclVhan^c\^c]dhe^iVajcVWaZ idbdkZ[gdbi]ZcZX`Ydlc# “MS has been very challenging. Not one to do things by halves, I will set off hiking the snowfields in NZ, snorkelling with sharks and turtles in Port Douglas, and cruising the Coast on a Harley…as a passenger. Jonathan Loraine and Bruce Milligan MS Life Summer edition 2009 BOB AND KAREN’S LOVE STORY MS Life Australian of the Year In depth answers to the most frequently asked MS questions Ambassador, National Panel Horse Judge and person with MS Find out how you can take part MS Awareness Week 26 May - 4 June MS CLINIC CONVERSATIONS Jenni CEO’s Desk 2 Life Options 3 Ian’s Story 4 In Memory of John 5 Reading for the Family 6 Storming Parliament 8 Events 9 Research Breakthrough 10 MS Book Reviews 12 CCSVI DEBATE MS AND SES PwMS Josie Montano helps during Queensland’s floods and cyclones BH6jhigVa^VXZaZWgViZh*%nZVghd[ZmXZei^dcVahZgk^XZidi]ZcVi^dc^c'%%+ Beea_d]7jB_\[J^hek]^:_\\[h[dj;o[i >ci]^hZmXZgei[gdb]ZgheZZX]idi]Zeg^bVgnhX]ddahijYZcih!H]VgdcZmeaV^chl]Vi^iÉha^`Zida^kZ l^i]BHÄVcY]dlBH]Vh^che^gZY]Zgida^kZa^[Zidi]Z[jaa# MS Australia – QLD Why MS organisations are proceeding with caution on new treatments MS AWARENESS WEEK Read about the lip smacking campaign that had everyone talking about MS LIFE Queensland KdajbZ(!6j\jhi'%%+ Hde]^V^hdcZd[FjZZchaVcYÉh]^\]ZhiBHGZVYVi]dc[jcYgV^hZgh#I]^hnZVg!h]ZVcY]Zgbdi]Zg\VkZV heZX^VaegZhZciVi^dcidi]ZhX]ddaVhhZbWanidZcXdjgV\Zdi]Zghid_d^c^ci]ZfjZhiidÈgZVY[dgVgZVhdcÉ# Spring 2010 Giving back independence and dignity MS brought EMPLOYMENT AND MS See how Queensland took part in World MS Day celebrations this year Autumn 2010 Giving life back >ci]ZnZVghh^cXZ!H]Vgdc]VhZcYjgZYcjbZgdjhhZg^djhBHViiVX`h!Wjih]ZÉhcdiVWdjiidaZi]Zg BH\Zi^ci]ZlVnd[a^k^c\a^[Zid^ih[jaaZhi#=Zgedh^i^kZdjiadd`]Vh^che^gZY]ZgYVj\]iZgHde]^V!V NZVg*hijYZciVi6h]\gdkZHiViZHX]dda!idZcXdjgV\Z]Zg[ZaadlhijYZcihideVgi^X^eViZ^ci]ZBH GZVYVi]dcVcY]ZaegV^hZ[jcYhidhjeedgigZhZVgX]^cidVXjgZ[dgBjai^eaZHXaZgdh^h# Questions about MS? Scientists have identified the major common genetic variants that contribute to the cause of MS MS Australia – QLD 26 MAY 2010 26 MAY 2010 Storming Parliament House for MS Life at Annerley.... COMPLETED! LIFE AT ANNERLEY... Multiple Sclerosis Society of Queensland 286 Gladstone Road Dutton Park QLD 4102 Locked Bag 370 Coorparoo DC QLD 4151 ABN 56 731 473 412 B_l_d] M_j^ CI 3P]PUN>P[O4: MS Life P15 MS Research Australia provides you with the latest updates on MS research One man’s struggle Living Positively against the odds with MS LIFE QUEENSLAND JOIN THE GLOBAL MOVEMENT! Activities happening all worldMSday around the world! 2nd Annual MS National Advocates Conference We’ve got the answers you’re looking for CEO’s Desk 2 Life Options 3 Ian’s Story 4 In Memory of John 5 Reading for the Family 6 Storming Parliament 8 Events 9 Research Breakthrough 10 MS Book Reviews 12 MS SOCIETY OF QLD PURCHASES PARTIALLY COMPLETED TOWN HOUSES AS PART OF LIFE OPTIONS 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. Debbie Smart was diagnosed with MS, but it didn’t stop her from moving to Africa to help vulnerable children RESEARCH NEWS worldMSday who are worse off. I love my life and I look forward to everything that life offers. I have managed this Just before Sophia’s fifth birthday condition through positive (she is 10 now), my Mum asked Sharon and Sophia Ball with thinking, meditation, pilates, her what her three birthday their puppy Millie swimming, diet and an wishes were. She stated that amazing amount of love and she “would LOVE a violin, a friendship. I had been totally drug free for 7 years poodle puppy…but most of all Grandma I would opting for natural therapies. However after much love a cure for MS and that Mummy’s legs would resistance, in 2001, I went on injection treatment work properly again”. She received the violin which can lessen the severity of relapse. and recently Millie the poochon puppy, and is still waiting for the gift of a cure. I was totally needle phobic and now I inject myself daily: I am up to about 2000 injections so far! I have I am 41 now, lived with MS for over 12 years learnt to walk from scratch about 16 times and have and I am aware of the realities of this condition, been blind twice. understanding that the time may come when it could worsen. Maybe through diligent management, MS has been a gift to me as it has given me a it won’t. I am praying that it won’t. sense of urgency about life, encouraging me not to procrastinate about what I would like to do one day. When life hands you a bag of lemons – you simply I definitely do not want pity…there are many people go make lemonade!” P10 Employment Power LOUISA ON A MISSION >ci]^hZmXZgei[gdb]ZgheZZX]idi]Zeg^bVgnhX]ddahijYZcih!H]VgdcZmeaV^chl]Vi^iÉha^`Zida^kZ l^i]BHÄVcY]dlBH]Vh^che^gZY]Zgida^kZa^[Zidi]Z[jaa# Then without announcement, I can be back as the resident celebrity in hospital learning to walk again. State Government introduces a new electricity rebate for low-income Queenslanders with multiple sclerosis FEATURE STORY Winter 2011 How a young mum won’t let MS hold her back MS Australia – QLD Autumn 2011 Giving life back Hde]^V^hdcZd[FjZZchaVcYÉh]^\]ZhiBHGZVYVi]dc[jcYgV^hZgh#I]^hnZVg!h]ZVcY]Zgbdi]Zg\VkZV heZX^VaegZhZciVi^dcidi]ZhX]ddaVhhZbWanidZcXdjgV\Zdi]Zghid_d^c^ci]ZfjZhiidÈgZVY[dgVgZVhdcÉ# “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. P5 AUTUMN 2012 >ci]ZnZVghh^cXZ!H]Vgdc]VhZcYjgZYcjbZgdjhhZg^djhBHViiVX`h!Wjih]ZÉhcdiVWdjiidaZi]Zg BH\Zi^ci]ZlVnd[a^k^c\a^[Zid^ih[jaaZhi#=Zgedh^i^kZdjiadd`]Vh^che^gZY]ZgYVj\]iZgHde]^V!V NZVg*hijYZciVi6h]\gdkZHiViZHX]dda!idZcXdjgV\Z]Zg[ZaadlhijYZcihideVgi^X^eViZ^ci]ZBH GZVYVi]dcVcY]ZaegV^hZ[jcYhidhjeedgigZhZVgX]^cidVXjgZ[dgBjai^eaZHXaZgdh^h# Find out how you can take part How the world united with a common goal: to raise awareness of MS COOLING REBATE MSLIFE. MS Life 26 MAY 2010 26 MAY 2010 Storming Parliament House for MS P3 2 3 3 4 6 8 9 10 Lisa & Sandy tell... QUEENSLAND >c&..(!a^[ZlVh\ddY#H]Vgdc7Vaa!i]Zc'-!]VY_jhigZijgcZY[gdb]ZglZYY^c\VcY]dcZnbddc ^ci]Z<gZZ`>haVcYhVcYlVhldg`^c\VhFjZZchaVcYBVcV\Zg[dgVgZXgj^ibZciXdchjaiVcXn#I]Zc Bjai^eaZHXaZgdh^hhigjX`#L^i]^cbdci]hd[]Zg[V^gniVaZlZYY^c\!H]VgdclVhan^c\^c]dhe^iVajcVWaZ idbdkZ[gdbi]ZcZX`Ydlc# worldMSday JOIN THE GLOBAL MOVEMENT! Activities happening all worldMSday around the world! 2nd Annual MS National Advocates Conference A GLOBAL MOVEMENT 9 11 Notice of AGM ABN 56 731 473 412 Phone: 07 3840 0888 Fax: 07 3840 0813 Email: mssociety@msqld.org.au www.msaustralia.org.au/qld LIFE BH6jhigVa^VXZaZWgViZh*%nZVghd[ZmXZei^dcVahZgk^XZidi]ZcVi^dc^c'%%+ Beea_d]7jB_\[J^hek]^:_\\[h[dj;o[i MOONLIGHT WALK Over 1300 people take a stroll through Brisbane to raise money for MS 10 Ambassadors Needed brissie to the bay Multiple Sclerosis Society of Queensland 286 Gladstone Road Dutton Park QLD 4102 Locked Bag 370 Coorparoo DC QLD 4151 Spring Edition 2009 KdajbZ(!6j\jhi'%%+ Giving life back LET’S CRUISE Helen Emery takes on the high seas in style with husband Graham How you can help spread the word about MS this May IN THIS ISSUE... CEO’s Message Catherine’s Story Our New Website Life at Annerley Update Feature Articles MS Readathon 30th Birthday Fatigue Research MS Services Services to support you & taking control 3800 CYCLIST PEDAL FOR A CURE! VIRAL MS CAMPAIGN Learn what Mayor of Ipswich Paul Pisasale feels about employment and MS One man’s struggle Living Positively against the odds with MS LIFE MS Australia – QLD Autumn 2011 5 Work of Aart Lynette Walks Again TABLET TALK A look at new oral treatments for MS that offer more options AWARENESS MONTH THIS MAY 2 Brissie to the Bay Introducing Facebook COMEBACK KID Geoff Huegill lends his support to MS, fresh from taking gold in Delhi MS Giving life back THIS ISSUE CEO’s Desk Portrait of Posterity Giving life back QUEENSLAND Volume 3 Spring Edition, September 2008 An 11 year old’s idea... Lisa & Sandy tell... QUEENSLAND Autumn Edition 2009 LIFE Queensland 9 11 Notice of AGM ABN 56 731 473 412 Phone: 07 3840 0888 Fax: 07 3840 0813 Email: mssociety@msqld.org.au www.msaustralia.org.au/qld LIFE Her Excellency Ms Penelope Wensley AO LIFE MS Australia – QLD Winter 2011 2 3 3 4 6 8 9 10 10 Ambassadors Needed brissie to the bay Spring Edition 2009 OUR PATRON PREPARING FOR THE SUMMER HEAT p.7 Debbie strives despite MS Lisa’s story of motherhood and MS Educate, Motivate & Advocate LEIZA’S STORYp.3 P15 AUTUMN 2012 QUEENSLAND’S PREMIER MAGAZINE FOR PEOPLE LIVING WITH MS IN THIS ISSUE... CEO’s Message Catherine’s Story Our New Website Life at Annerley Update Feature Articles MS Readathon 30th Birthday Fatigue Research MS Services Services to support you & taking control 3800 CYCLIST PEDAL FOR A CURE! Multiple Sclerosis Society of Queensland 286 Gladstone Road Dutton Park QLD 4102 Locked Bag 370 Coorparoo DC QLD 4151 LET’S CRUISE Helen Emery takes on the high seas in style with husband Graham How you can help spread the word about MS this May 2 3 4 Portrait of Posterity Lynette Walks Again TABLET TALK A look at new oral treatments for MS that offer more options AWARENESS MONTH THIS MAY THIS ISSUE Brissie to the Bay Introducing Facebook COMEBACK KID Geoff Huegill lends his support to MS, fresh from taking gold in Delhi MS Giving life back Volume 3 Spring Edition, September 2008 CEO’s Desk Debbie strives despite MS Lisa’s story of motherhood and MS Educate, Motivate & Advocate OUR PATRON PREPARING FOR THE SUMMER HEAT p.7 are you getting enough? World MS Day Our New MS Ambassadors MCKINNON HOUSE FOR RESPITE p.6 Vitamin D The First Official are you getting enough? World MS Day LEIZA’S STORYp.3 QUEENSLAND MS Australia – QLD MS Australia – QLD Winter 2010 Summer 2011 WHAT A YEAR IT HAS BEEN FOR MS WORLDWIDE The First Official World MS Day Vitamin D Educate, Motivate & Advocate MCKINNON HOUSE FOR RESPITE p.6 PREPARING FOR THE SUMMER HEAT p.7 OUR PATRON The First Official are you getting enough? Our New MS Ambassadors LEIZA’S STORYp.3 Her Excellency Ms Penelope Wensley AO World MS Day Debbie strives despite MS Lisa’s story of motherhood and MS COMEBACK KID TABLET TALK LET’S CRUISE MOONLIGHT WALK Geoff Huegill lends his support to MS, fresh from taking gold in Delhi A look at new oral treatments for MS that offer more options Helen Emery takes on the high seas in style with husband Graham Over 1300 people take a stroll through Brisbane to raise money for MS A GLOBAL MOVEMENT P3 How the world united with a common goal: to raise awareness of MS COOLING REBATE P5 State Government introduces a new electricity rebate for low-income Queenslanders with multiple sclerosis FEATURE STORY P10 Debbie Smart was diagnosed with MS, but it didn’t stop her from moving to Africa to help vulnerable children RESEARCH NEWS P15 MS Research Australia provides you with the latest updates on MS research Vitamin D are you getting enough? Our New MS Ambassadors Educate, Motivate & Advocate LEIZA’S STORYp.3 MCKINNON HOUSE FOR RESPITE p.6 PREPARING FOR THE SUMMER HEAT p.7 OUR PATRON Her Excellency Ms Penelope Wensley AO Debbie strives despite MS Lisa’s story of motherhood and MS COMEBACK KID TABLET TALK LET’S CRUISE MOONLIGHT WALK Geoff Huegill lends his support to MS, fresh from taking gold in Delhi A look at new oral treatments for MS that offer more options Helen Emery takes on the high seas in style with husband Graham Over 1300 people take a stroll through Brisbane to raise money for MS A GLOBAL MOVEMENT How the world united with a common goal: to raise awareness of MS P3 COOLING REBATE Are you a member with 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. have your say So if you value the publications and services MS Queensland provides then please show your support Help support by joining or renewing your membership with MS Queensland today. For a fee of just $33 you can MS Queensland join us for a year, or you might consider becoming and our good a Life Member for just $330 to avoid worrying about paying your membership ever again! The strength of MS work! Queensland comes from our 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. P5 State Government introduces a new electricity rebate for low-income Queenslanders with multiple sclerosis memb Lincoln Hopper, CEO MS Australia – QLD Spring 2010 Questions about MS? We’ve got the answers you’re looking for Giving life back A YEAR OF EMPLOYMENT AND MS WHAT A YEAR IT HAS BEEN FOR MS WORLDWIDE I look at MS as a rewarding challenge and not a disability. It is an acceptance of whatever cards are dealt to you in this life. It is your choice on how you are going to manage that hand. I guess I look at life through different eyes these days and tend to live in the moment. I have managed this Just before Sophia’s fifth birthday condition through positive (she is 10 now), my Mum asked Sharon and Sophia Ball with thinking, meditation, pilates, her what her three birthday their puppy Millie swimming, diet and an wishes were. She stated that amazing amount of love and she “would LOVE a violin, a friendship. I had been totally drug free for 7 years poodle puppy…but most of all Grandma I would opting for natural therapies. However after much love a cure for MS and that Mummy’s legs would resistance, in 2001, I went on injection treatment work properly again”. She received the violin which can lessen the severity of relapse. and recently Millie the poochon puppy, and is still waiting for the gift of a cure. I was totally needle phobic and now I inject myself daily: I am up to about 2000 injections so far! I have learnt to walk from scratch about 16 times and have been blind twice. LIFE MS Australia – QLD Giving life back LIFE AT ANNERLEY... Phone: 07 3840 0888 Fax: 07 3840 0813 Email: mssociety@msqld.org.au www.msaustralia.org.au/qld who are worse off. I love my life and I look forward to everything that life offers. Then without announcement, I can be back as the resident celebrity in hospital learning to walk again. MS has been a gift to me as it has given me a sense of urgency about life, encouraging me not to procrastinate about what I would like to do one day. I definitely do not want pity…there are many people Spring 2011 MS SOCIETY OF QLD PURCHASES PARTIALLY COMPLETED TOWN HOUSES AS PART OF LIFE OPTIONS Multiple Sclerosis Society of Queensland 286 Gladstone Road Dutton Park QLD 4102 Locked Bag 370 Coorparoo DC QLD 4151 ABN 56 731 473 412 “MS has been very challenging. Not one to do things by halves, I will set off hiking the snowfields in NZ, snorkelling with sharks and turtles in Port Douglas, and cruising the Coast on a Harley…as a passenger. Jonathan Loraine and Bruce Milligan MS Life LIFE QUEENSLAND MS Australia – QLD Winter 2010 Summer 2011 GET PHYSICAL The link between exercise and quality of life for people with MS Summer edition 2009 BOB AND KAREN’S LOVE STORY MS Life WORLD MS DAY How you can help the global campaign on employment and MS CEO’s Desk 2 Life Options 3 Ian’s Story 4 In Memory of John 5 Reading for the Family 6 Storming Parliament 8 Events 9 Research Breakthrough 10 MS Book Reviews 12 Giving back independence and dignity MS brought Australian of the Year In depth answers to the most frequently asked MS questions Ambassador, National Panel Horse Judge and person with MS MS Australia – QLD Spring 2010 Find out how you can take part MS Awareness Week 26 May - 4 June Storming Parliament House for MS Life at Annerley.... COMPLETED! MS gene discovery BREAKTHROUGH MS RESEARCH Scientists have identified the major common genetic variants that contribute to the cause of MS Giving life back A YEAR OF EMPLOYMENT AND MS B_l_d] M_j^ CI 3P]PUN>P[O4: MS Life JOIN THE GLOBAL MOVEMENT! Activities happening all worldMSday around the world! 2nd Annual MS National Advocates Conference Jenni Questions about MS? LIFE AT ANNERLEY... Phone: 07 3840 0888 Fax: 07 3840 0813 Email: mssociety@msqld.org.au www.msaustralia.org.au/qld 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!” We’ve got the answers you’re looking for CEO’s Desk 2 Life Options 3 Ian’s Story 4 In Memory of John 5 Reading for the Family 6 Storming Parliament 8 Events 9 Research Breakthrough 10 MS Book Reviews 12 MS SOCIETY OF QLD PURCHASES PARTIALLY COMPLETED TOWN HOUSES AS PART OF LIFE OPTIONS I look at MS as a rewarding challenge and not a disability. It is an acceptance of whatever cards are dealt to you in this life. It is your choice on how you are going to manage that hand. I guess I look at life through different eyes these days and tend to live in the moment. I have managed this Just before Sophia’s fifth birthday condition through positive (she is 10 now), my Mum asked Sharon and Sophia Ball with thinking, meditation, pilates, her what her three birthday their puppy Millie swimming, diet and an wishes were. She stated that amazing amount of love and she “would LOVE a violin, a friendship. I had been totally drug free for 7 years poodle puppy…but most of all Grandma I would opting for natural therapies. However after much love a cure for MS and that Mummy’s legs would resistance, in 2001, I went on injection treatment work properly again”. She received the violin which can lessen the severity of relapse. and recently Millie the poochon puppy, and is still waiting for the gift of a cure. I was totally needle phobic and now I inject myself daily: I am up to about 2000 injections so far! I have learnt to walk from scratch about 16 times and have been blind twice. 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 Summer edition 2009 >ci]^hZmXZgei[gdb]ZgheZZX]idi]Zeg^bVgnhX]ddahijYZcih!H]VgdcZmeaV^chl]Vi^iÉha^`Zida^kZ l^i]BHÄVcY]dlBH]Vh^che^gZY]Zgida^kZa^[Zidi]Z[jaa# who are worse off. I love my life and I look forward to everything that life offers. Then without announcement, I can be back as the resident celebrity in hospital learning to walk again. Jonathan Loraine and Bruce Milligan MS Life LIFE QUEENSLAND Multiple Sclerosis Society of Queensland 286 Gladstone Road Dutton Park QLD 4102 Locked Bag 370 Coorparoo DC QLD 4151 ABN 56 731 473 412 “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. >c&..(!a^[ZlVh\ddY#H]Vgdc7Vaa!i]Zc'-!]VY_jhigZijgcZY[gdb]ZglZYY^c\VcY]dcZnbddc ^ci]Z<gZZ`>haVcYhVcYlVhldg`^c\VhFjZZchaVcYBVcV\Zg[dgVgZXgj^ibZciXdchjaiVcXn#I]Zc Bjai^eaZHXaZgdh^hhigjX`#L^i]^cbdci]hd[]Zg[V^gniVaZlZYY^c\!H]VgdclVhan^c\^c]dhe^iVajcVWaZ idbdkZ[gdbi]ZcZX`Ydlc# >ci]ZnZVghh^cXZ!H]Vgdc]VhZcYjgZYcjbZgdjhhZg^djhBHViiVX`h!Wjih]ZÉhcdiVWdjiidaZi]Zg BH\Zi^ci]ZlVnd[a^k^c\a^[Zid^ih[jaaZhi#=Zgedh^i^kZdjiadd`]Vh^che^gZY]ZgYVj\]iZgHde]^V!V NZVg*hijYZciVi6h]\gdkZHiViZHX]dda!idZcXdjgV\Z]Zg[ZaadlhijYZcihideVgi^X^eViZ^ci]ZBH GZVYVi]dcVcY]ZaegV^hZ[jcYhidhjeedgigZhZVgX]^cidVXjgZ[dgBjai^eaZHXaZgdh^h# 26 MAY 2010 Hde]^V^hdcZd[FjZZchaVcYÉh]^\]ZhiBHGZVYVi]dc[jcYgV^hZgh#I]^hnZVg!h]ZVcY]Zgbdi]Zg\VkZV heZX^VaegZhZciVi^dcidi]ZhX]ddaVhhZbWanidZcXdjgV\Zdi]Zghid_d^c^ci]ZfjZhiidÈgZVY[dgVgZVhdcÉ# 26 MAY 2010 MS Awareness Week 26 May - 4 June Storming Parliament House for MS LIFE Queensland Autumn 2010 Giving life back worldMSday >ci]ZnZVghh^cXZ!H]Vgdc]VhZcYjgZYcjbZgdjhhZg^djhBHViiVX`h!Wjih]ZÉhcdiVWdjiidaZi]Zg BH\Zi^ci]ZlVnd[a^k^c\a^[Zid^ih[jaaZhi#=Zgedh^i^kZdjiadd`]Vh^che^gZY]ZgYVj\]iZgHde]^V!V NZVg*hijYZciVi6h]\gdkZHiViZHX]dda!idZcXdjgV\Z]Zg[ZaadlhijYZcihideVgi^X^eViZ^ci]ZBH GZVYVi]dcVcY]ZaegV^hZ[jcYhidhjeedgigZhZVgX]^cidVXjgZ[dgBjai^eaZHXaZgdh^h# 26 MAY 2010 JOIN THE GLOBAL MOVEMENT! Activities happening all worldMSday around the world! 2nd Annual MS National Advocates Conference Jenni MS Australia – QLD Winter 2011 How you can help spread the word about MS this May IN THIS ISSUE... CEO’s Message Catherine’s Story Our New Website Life at Annerley Update Feature Articles MS Readathon 30th Birthday Fatigue Research MS Services Services to support you & taking control 7 11 Notice of AGM Spring Edition 2009 KdajbZ(!6j\jhi'%%+ Giving life back 5 6 AUTUMN 2012 AWARENESS MONTH THIS MAY 2 3 4 10 Ambassadors Needed brissie to the bay 3800 CYCLIST PEDAL FOR A CURE! One man’s struggle Living Positively against the odds with MS LIFE MS Australia – QLD Autumn 2011 Giving life back MS Readathon New Record for MSLIFE. MS Life MS Giving life back THIS ISSUE CEO’s Desk An 11 year old’s idea... “We Have MS, But It Doesn’t Have Us!” QUEENSLAND Volume 3 Spring Edition, September 2008 Employment Power LOUISA ON A MISSION Lisa & Sandy tell... LIFE Queensland 2 3 3 4 6 8 9 10 9 10 Ambassadors Needed brissie to the bay 3800 CYCLIST PEDAL FOR A CURE! 286 Gladstone Road Dutton Park QLD 4102 LIFE MS Australia – QLD Winter 2011 How you can help spread the word about MS this May 2 3 4 AUTUMN 2012 AWARENESS MONTH THIS MAY THIS ISSUE CEO’s Desk An 11 year old’s idea... MSLIFE. MS Life MS Giving life back Volume 3 Spring Edition, September 2008 New Record for FEATURE STORY P10 Debbie Smart was diagnosed with MS, but it didn’t stop her from moving to Africa to help vulnerable children RESEARCH NEWS P15 MS Research Australia provides you with the latest updates on MS research EWAL TION/REN A IC L PP A RG.AU bership mem .O WWW.MSQLD TO: Hon Secretary MS Queensland Locked Bag 370 Coorparoo DC QLD 4151 Application Date: ____ /____ /____ Phone: (07) 3840 0888 Fax: (07) 3840 0813 Email: mssociety@msqld.org.au I wish to submit an Application for Membership of MS Queensland. I wish to renew my Application for Membership of MS Queensland. I enclose my subscription for: Annual Ordinary Membership $33.00 (inc. GST) (1 July – 30 June) Life Membership $330.00 (inc. GST) (Life Membership can only be granted following application for Ordinary Membership) My personal details are as follows: Full Name......................................................................................................... DRIVE YOUR MEMBERSHIP FURTHER Address............................................................................................................ JOIN ONLINE ........................................................................................................................ Post Code......................................................................................................... WWW.MSQLD.ORG.AU Phone No........................................................................................................ Email................................................................................................................ Date of Birth..................................................................................................... Please indicate your interest in MS QUEENSLAND I have MS I just want to support the A family member has MS MS cause I know someone with MS Other......................................... My subscription, as shown below, is enclosed: Ordinary$............................ Life $............................ Donation$............................ (All donations $2 and over are tax deductible) TOTAL$............................ Payment details: Please make cheques payable to Multiple Sclerosis Society of Queensland Visa M/Card Amex Diners OR please charge my Card No __ __ __ __ / __ __ __ __ / __ __ __ __ / __ __ __ __ Expiry Date__ __ / __ __ Name on card........................................................... Return this form with your payment to MS Queensland using the enclosed Reply Paid envelope. Thank you for your support. Services are delivered to registered clients on the basis of individual assessment and identified needs. Membership does not automatically entitle you to receive services – people with MS must register as a client and provide proof of diagnosis. For more information call the Information Line on 1800 177 591.