AUTUMN 2015 ISSN 1833-8941 Print Post Approved: 100003204 HOW TO DEAL WITH VISION DIFFICULTIES SEE PAGE 8 INSIDE ALSO ‘FOCUS ON THE DREAMS CAN BIG PICTURE’ COME TRUE GEORGE MOUSSA, PAGE 4 2015 Go for Gold CONTINENCE is open now ISSUES? PROFESSOR MILLARD www.ms.org.au GIVES GOOD ADVICE › CEO’s message WE’VE had a great start to 2015 as we focus on some exciting projects for the coming year. For example, building on the success of our series of webinar education sessions, we are developing online training for people willing to become MS Peer Support facilitators. This will allow us to assist more people who seek support adjusting to living with multiple sclerosis from someone who has truly ‘walked in their shoes’ and understands how they feel. We’re also working on revamping our website and upgrading how we manage information. We’re hoping to unveil the new website by May. In other news, it’s my pleasure to welcome author and comedian Tim Ferguson on board as one of our Patrons. Tim’s an articulate advocate on behalf of people living with multiple sclerosis so it will be terrific to see him in the role. Be sure to make a note that World MS Day will be held on Wednesday 27 May. This year, the focus is on celebrating the ways that people all over the world are Publisher: Multiple Sclerosis Limited ABN: 66 004 942 287 breaking down the barriers to living with multiple sclerosis. To learn more go to Editor: Toni Eatts www.worldmsday.org. Meanwhile, if you need our help to ‘breakdown those Advertising enquiries: [email protected] barriers’, remember you can contact us by phoning MS Connect on 1800 042 138. Privacy Policy: Visit www.ms.org.au for our full policy document. ISSN: 1833-8941 ACT Gloria McKerrow House 117 Denison Street Robyn Hunter Deakin ACT 2600 Chief Executive Officer, MS Tel: (02) 6234 7000 NSW The Studdy MS Centre 80 Betty Cuthbert Drive › Lidcombe NSW 2141 News from MS Advisory Council Tel: (02) 9646 0600 This year gets underway with Kate Cherry taking over the role of Chair of MSAC Victoria The Nerve Centre Victoria from Andrew White who retired in November 2014. Thank you, Andrew 54 Railway Road for your tireless work on behalf of people living with multiple sclerosis. Blackburn ViC 3130 Tel: (03) 9845 2700 All members of MSAC are volunteers and our purpose is to inform the MS organisation and its Board about the needs of the broader MS community. MS Connect: 1800 042 138 (free call) With the help of the current Chair of the MS Board, we have been building a Regional offices: Visit www.ms.org.au more active relationship with Board members. In fact, we look forward to and click on ‘Contact Us’. having Board members attend more of our meetings this year. We also want to improve our ongoing communications with the MS community. We now have an active Facebook page where we communicate with over 2,000 people (www.facebook.com/MSAdvisoryCouncil), as well as an online database Disclaimer: Information and articles contained where people can register (http://msac.org.au/register.htm). Please join us via these in Intouch are intended to provide useful and accurate information of a general nature for the sites or get in touch by email if there’s something you want to draw to our attention. reader but are not intended to be a substitute for legal or medical advice. Multiple Sclerosis Limited is not recommending medical or legal advice and Kate Cherry, Chair, MSAC Victoria readers must seek their own medical or legal advice as may be appropriate. Rob de Ridder, Chair, MSAC NSW Advertising disclaimer: Multiple Sclerosis Limited does not endorse any one product or service over GET involved – Contact MSAC another; nor do we receive any commission on Email: [email protected] • Telephone: (03) 9845 2714 sale of items. Consumers are encouraged to discuss the options for exchange or return at the time of purchase with a specific supplier because Multiple Sclerosis Limited is not liable in the event the product is not satisfactory. › Contents © Multiple Sclerosis Limited 2015 3 News HEALTH & WELLNESS 4 My story: George Moussa 8 Vision difficulties explained 14 Events 10 Top urologist retires: Professor Millard’s bladder control tips www.facebook.com/msgetinvolved MS COMMUNITY 5 Volunteers: LIFESTYLE twitter.com/msgetinvolved Why I volunteer 11 Apply for 2015 MS Go for Gold 6 Fundraising: Join in the fun www.pinterest.com/msgetinvolved 7 MS exercise: FUNDRAISING instagram.com/msgetinvolved Gym celebrates 10 years 13 MS Readathon and Mega Swim 2 intouch autumn 2015 www.ms.org.au www.ms.org.au autumn 2015 intouch 3 NEWS › Free after-hours GP LAST month we posted a copy of area, go to www.homedoctor.com.au. our new Beat the Heat booklet to To celebrate this, we produced the more than 12,000 people living with Beat the Heat booklet because we multiple sclerosis along with a magnet want you to stay cool and feel well. containing the contact details for the Our new MS@Home portfolio is National Home Doctor Service. focused on ensuring you remain in The mailout marked the launch of your home with access to practical our first MS@Home service. Thanks supports such as personal care, to our partnership with the National out-of-hours doctor services, our MS@Home supports to launch. Home Doctor Service, people living housekeeping, meal preparation and To access bulk-billed GP services call with multiple sclerosis can access free getting out into the community. 13 SICK (13 7425) after 4pm weekdays, after-hours GP services in metropolitan Our partnership with National after 10am Saturdays and all day and some regional areas. To check your Home Doctor Service is the first of Sundays and public holidays. › Research update › NSWIS team for Gong Ride HERE is a summary of some recent research projects: > Adam Levin from the University of Melbourne and Professor George Jelinek from St Vincent’s Hospital Melbourne have looked at meditation and multiple sclerosis-specific health outcomes. Published in the journal Behavioural Neurology, it reveals a significant association between meditation, lower risk of depression, and improved quality of life in people with the disease. Brad McGee and > History researchers from the Department of Neurology Ben Kersten at the of the University Hospital Rennes looked at the 2014 Gong ride. impact of disease-modifying drugs on 312 people who experienced their first ‘clinical event’ of multiple LAST year the NSW Institute of Sports (NSWIS) men’s sclerosis between 2000 and 2001. The researchers cycling team, headed by Olympic and Commonwealth concluded that, compared with previous historical Games gold medal winners Brad McGee and Ben studies, there was a better prognosis and lower risk of Kersten, took part in the MS Sydney to the Gong Ride. disability progression in the relapsing remitting multiple In February, this relationship expanded when we sclerosis group at the 10-year follow-up. The research agreed to a partnership between the NSWIS Cycling was published in the European Journal of Neurology. Team and this year’s Gong Ride. This is an exciting opportunity to attract cycling > Two new American studies of autologous haematopoietic enthusiasts to this iconic event. stem cell transplant (AHSCT) have been published; Brad McGee is Head Coach of NSWIS cycling and a the first, in the journal JAMA Neurology, reported the four-time Olympian while Ben Kerston is Assistant Coach interim results from an ongoing study of 24 people and a Commonwealth Games Gold Medal winner. with relapsing forms of multiple sclerosis. The second, The partnership means that the MS logo will be a study from Northwestern University Chicago, placed on the NSWIS Ride Team uniforms and support included 150 people with either relapsing or vehicles used during Australian road racing events. secondary progressive multiple sclerosis. The 2015 MS Sydney to the Gong Ride will be held on Sunday 1 November. Both studies show that around 80 per cent of people with relapsing remitting multiple sclerosis Access lower airfares achieved symptomatic remission for at least two IT is now easier for people with a disability to access lower years following AHSCT, however, by four years this airfares thanks to changes Virgin Australia has made to its had dropped to around 68 per cent. As a result, policies. This means people travelling with a carer can now MS Research Australia cautions that longer term make bookings by phone up to 331 days in advance at the follow-up and carefully controlled randomised trials internet discount rate, without the requirement to enter are required to fully understand this treatment. their carer’s name at that time. The move comes following a complaint to the Anti-Discrimination Board of NSW. For more information go to www.msra.org.au 2 intouch autumn 2015 www.ms.org.au www.ms.org.au autumn 2015 intouch 3 MY STORY From left: George, Awtel, Takla, Rafqa and › Martha Moussa. Focus on the big picture George Moussa’s strong faith has given him the tools to rise to the challenges life has delivered. “Never give up! Always believe there’s hope, no matter how hard things get, and remember that there’s always somebody worse off than you.” That’s the message that George Moussa, 44, wants to give to anyone with multiple sclerosis who is newly diagnosed or simply having a bad day. Many people who have multiple sclerosis lead inspiring lives but George’s journey is more complex than most. George and his wife, Martha, have been married for 21 years and are the loving parents of three children, Awtel, 20, Rafqa, 11, and Takla, 2.