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 › Focus on the big picture Martha Moussa. 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. Awtel was born in 1994 with a severe chromosomal abnormality that has left him Then in May 2012, seven weeks before their baby intellectually disabled and with the body of a 10 year old. was due, a scan revealed her brain had stopped “It was a shock,” George says. “We were told the growing. “I read the letter and just broke down.” second day after he was born.” With assistance from The condition is called pontocerebellar hypoplasia. George’s parents, the young couple embarked on “We are active Catholics and active parents so we giving their son an intensive program of neurological wouldn’t have terminated even if we’d learnt in time,” stimulation. “It helped in some ways but not in others. George says. But the couple had to endure seven We stopped when Awtel was five and decided to enrol weeks of not knowing whether their baby would him in a special school. Now, he goes to a community survive and, if she did, what her future held. Again, participation facility. He doesn’t talk, he’s in nappies the lesson was, “the only certainty is uncertainty”. and we have to shower and feed him.” Takla was born with severe intellectual disability Awtel was almost four when George, a graphic designer and given a life expectancy of a year. At one stage who was then working for a public relations company, during 2013, she was so ill she wasn’t expected to experienced pins and needles and tingling in his feet. A live. “We had accepted our disabled son many years diagnosis of multiple sclerosis soon followed. However, earlier and had decided to focus on what we could it didn’t upset George, largely because his symptoms do, not what we couldn’t.” remained comparatively mild. “I had six or seven episodes In a similar way, George and Martha choose to focus and then I was clear of symptoms from 2005 to 2009.” on the time they have with Takla. “We live with the knowledge that her time is short and that’s okay. Her Certainty is uncertainty hearing is good but we don’t know if she can see.” Meanwhile, their daughter Rafqa was born and George makes it a priority to give Takla as many normal George and Martha concentrated on raising their childhood experiences as possible. “I find it fulfilling to take family. But in July 2009, George’s multiple sclerosis her to the beach so she can feel the sand on her body and “came back with a vengeance”. the waves splashing her. She’s an innocent soul and when The luggie The exacerbation began with balance difficulties and she’s ready to go we have to respect and honour that.” • America’s top selling PACK it up portable scooter broadened to include loss of taste, extreme fatigue, double So what keeps George and Martha strong? “We are vision, nausea and bladder issues. committed and dedicated to each other and our marriage. • Folds up in seconds • Li-ion battery pack “I felt dizzy, as though I was on a merry-go-round and You take the good with the bad.” They are also fortunate to • Carries up to 140kg couldn’t get off. I couldn’t walk and some mornings, I had have the support of Martha’s sister, who helps out. and GO! to crawl or feel my way against a wall to the bathroom.” What about George’s multiple sclerosis? “My neurologist This situation continued for two months but gradually is pleased with me and I feel the best I have in years. Portable people movers for travellers who need the symptoms receded and when 2010 dawned, George Finding out about Takla was extremely traumatic. That was transport when they reach their destination. By car or train, boat or plane; fold them up and you’re ready to go. The Buzz 3 & 4 had returned to work. By this time he was self-employed, the most difficult period in my life and my multiple sclerosis designing logos, presentations, brochures and websites. just went out of the equation.” George draws on his strong • Unclips with the flick of a finger • Easy to lift into a car boot This last exacerbation left him with the ongoing faith in order to face each day as it comes. “I want to be Literider PC or caravan symptoms of fatigue, balance issues and a sensitive remembered as somebody who ‘carried his cross’. When • Entry level, lightweight powerchair • Large or small battery options bladder, but George is grateful that they are easily managed. you’re diagnosed with multiple sclerosis you feel as though • 5 easy to unclip sections • Great value for money, from $1490 “The thing multiple sclerosis has taught me is that the you’ve hit a brick wall but you haven’t. Stay focused on the • Compact and simple to use only certainty is uncertainty.” big picture because every day you are here is priceless.” • Suitable for indoor or outdoor VISIT scootersaus.com.au In 2011, Martha became pregnant and the couple was or CALL 1300 622 633 thrilled. The timing was good as George has enjoyed a period If you would like to share your story, email

of stability with his multiple sclerosis symptoms since 2010. [email protected] or phone (02) 8484 1316. Photo: Stine Baska, for Heartfelt Photography.

4 intouch autumn 2015 www.ms.org.au www.ms.org.au autumn 2015 intouch 5 MS COMMUNITY › Why I volunteer

I’m 33 and I’ve been totally blind since birth. After being made redundant in 2009, I decided to undertake some voluntary work because it would look good on my CV, › as well as allowing me to interact with the outside world. Buy bargains at MS shops I came across the Community Visitors Scheme (CVS), run by the MS organisation, while I was at an employment You may not realise that you can find some great bargains agency. I applied and was matched with Leo and Frank who at our MS Community Shops. We have 12 stores that help live in an aged care home in Hughesdale, Melbourne. raise money for people living with multiple sclerosis, thanks Leo was reserved but Frank was a totally different story. to the generous donations of clothes and homewares I enjoyed our visits and going out for meals. We are both from the local community. interested in what’s happening in each other’s lives. And, of course, we couldn’t keep the shops open without Because I’m blind, I rely on taxis and public transport. the wonderful contribution of nearly 400 volunteers. The MS organisation provides taxi vouchers so I can visit. So next time you’re hunting for a bargain drop into I also had to educate other residents and staff about Fenix, your nearest MS shop because here are some of the my guide dog, because he’s not to be patted when the ‘treasures’ we have sold recently: harness is on. But I enjoy the sounds of delight when the • Hampton received some highly collectable original residents see us walking through. Some of the residents signed Royal Doulton Bunnykins china. These sold had dogs prior to moving in, so it’s a boost to their day. quickly at $30 a bowl. I want to continue to be a community visitor for some years • Two large gilt-edge mirrors valued at more than $400 to come. I learn about people. We can all learn a lot from the each were sold at Kew for the bargain price of $160 each. older generation so I would strongly recommend volunteering. • At Waverley, vintage Scandinavian Iittala glasses and a By Dean Calder, who joined the CVS in 2009. Kluk Kluk Holmsgard decanter sold for bargain prices. • Mildura received a beautifully designed imitation › camphor wood chest, which was a steal at $50. Join the scheme • Tuggeranong sold the complete DVD collection of The MS Community Visitors Scheme is funded by the TV series M*A*S*H within 24 hours. the Australian Government and provides companionship • Bendigo received a complete set of golfing gear including for older people living in aged care homes or in their own seven clubs, a buggy, balls and tees in great condition. homes. If you enjoy older people and have the time to Our MS Community Shops are located in Bendigo, commit to at least one visit a fortnight, we need you. Fairfield, Kew, Malvern, Melton, Mildura, Monbulk, We have volunteer positions available in metropolitan Daylesford, Malvern, Geelong and Hampton, in Melbourne and Sydney and in regional Victoria. Victoria, and in Tuggeranong, in the ACT. To volunteer, email [email protected] or call 03 9845 2729. If you are interested in working in one of our shops, please call MS Connect on 1800 042 138.

The luggie • America’s top selling PACK it up portable scooter • Folds up in seconds • Li-ion battery pack and GO! • Carries up to 140kg Portable people movers for travellers who need transport when they reach their destination. By car or train, boat or plane; fold them up and you’re ready to go. The Buzz 3 & 4 • Unclips with the flick of a finger • Easy to lift into a car boot Literider PC or caravan • Entry level, lightweight powerchair • Large or small battery options • 5 easy to unclip sections • Great value for money, from $1490 • Compact and simple to use • Suitable for indoor or outdoor VISIT scootersaus.com.au or CALL 1300 622 633

4 intouch autumn 2015 www.ms.org.au www.ms.org.au autumn 2015 intouch 5 MS COMMUNITY › Fundraising tips › Don’t miss a great day out Round up your family, friends and work buddies and start fundraising for this year’s MS Walk and Fun Run and the MS Melbourne Cycle.

• Set yourself a target and encourage your friends and family to do the same. A little friendly competition will make it interesting. • Activate your sponsorship page on www.msmelbournecycle.org.au or www.mswalk.org.au. Upload photos, videos and text to attract more sponsorship. • Send an email to all your contacts. Follow up with a second reminder email a week before the event to those who haven’t sponsored you yet. • Don’t shy away from asking for sponsorship. Even Be sure to sign up for the MS Walk and Fun Run because if a person says no, you’ve done a good thing by it’s an enjoyable way to have a healthy, fun day out. To be raising awareness about multiple sclerosis. held on Sunday 31 May, we’re aiming to raise $1.7 million • Approach the people you have sponsored for for people living with multiple sclerosis. past events. They’re likely to return the favour, which The event is held simultaneously in Sydney, Melbourne goes a long way to boosting your confidence. and Canberra and caters for people of all ages and fitness • Remember to ask local businesses for support. levels. All events start and finish at the same point and you Sell them the benefit of supporting you – they get a can choose either a five- or 10-kilometre course. All walks tax deduction from their donation and the business are stroller- and wheelchair-friendly and we’re aiming to will be seen to be supporting a good cause. encourage 12,000 people to take part. This year, the Sydney event is moving to Sydney Olympic Park, starting and ending at Cathy Freeman Remember to get into the spirit of the day by wearing Park. Whether you walk or run, you will go through red or dress up in a fun costume for a chance to win a prize. beautiful parkland and around the foreshore. After you cross the finish line, stick around for music, plenty In Melbourne, you will start and finish at the Palms of food and entertainment suitable for the whole family. Lawn, Albert Park Lake and the scenic route takes in “The MS Walk and Fun Run follows World MS Day on the Melbourne city skyline. Wednesday 27 May,” says Robyn Hunter, CEO of MS. In Canberra, warm-up with your friends at Rond Terraces “I urge you to get your family and friends involved to help in Commonwealth Park before setting off on a walk or run us raise vital funds for the provision of care and support around glorious Lake Burley Griffin. for people living with multiple sclerosis.” At all events, you can join as an individual or get a team of family and friends together, and we’re pleased to offer For more information and to register go to people living with multiple sclerosis free entry. www.mswalk.org.au

› Carol Cooke, a Paralympic Gold The COOLEST products for the HOTTEST days ! Ride across Medallist, and Steve van Ruyven have West Gate Bridge been named as Ambassadors for the event. Carol was diagnosed If you have ever wanted to cycle with multiple sclerosis in 1998 at across Melbourne’s magnificent West the age of 36, while Steve was Gate Bridge, sign up for our ninth diagnosed in 1996 at the age of 33. annual MS Melbourne Cycle, to be “I’ve taken part once before and held on Sunday 19 April. I strongly urge people to register as Our aim is to raise $750,000 for it’ll be one of the best days you’ll people living with multiple sclerosis. have,” says Carol. The MS Melbourne Cycle is a fun, It will be Steve’s fifth MS Melbourne Personal non-competitive event suitable for Cycle. “Participating is an opportunity COOLING PRODUCTS all ages and fitness levels. There are to show your support for friends or ✓ Cool Cloths ✓ Chill Sleeves ✓ Cooling Hats with Cool Pads ✓ Neck Coolers ✓ Sunguards two course options available – a family living with the disease,” he says. 50-kilometre course or the The ride starts and finishes at Princes “And it’s fun!” MS Discount Use 100% more leisurely 30 kilometres. Park, Carlton. After the ride, participants 02 9548 1169 AUSTRALIAN Code 4467 OWNED Both include a chance to cross the can kick back, relax and enjoy the To find out more go to www.personalcoolingproducts.com.au on Orders Page West Gate Bridge – traffic free! entertainment and food stalls. www.msmelbournecycle.org.au

6 intouch autumn 2015 www.ms.org.au www.ms.org.au autumn 2015 intouch 7 Join the gym junkies The Maximising Your Strength program is available at McAllister’s Fitness, 17 Sevenoaks Road, Burwood East, Melbourne. Sessions run from 11am to noon, Tuesdays and Thursdays and the cost is $10 per session. To attend, phone (03) 8838 2071. From left: L.E. Ohman, Danny For other exercise programs for people with McAllister and multiple sclerosis, see page 15 of this issue. MS COMMUNITY Roz Thompson.

› Importantly, the gym is a place where people feel Danny makes exercise fun comfortable and aren’t afraid to challenge themselves DANNY McAllister’s Maximising Your Strength training class physically. I found I could do a lot more than I imagined. was one of the first community gym programs rolled out by Roz Thompson agrees. She was diagnosed with relapsing the MS organisation. L.E. Ohman was diagnosed with remitting multiple sclerosis in 1994. Since she began strength primary progressive multiple sclerosis in 2001 and, here, training program in 2005, her fitness has improved. she celebrates the program’s 10th anniversary. “We have a wide range of physical abilities in the group, and Danny has even customised or made equipment It’s hard to believe it was 10 years ago that I rocked up specifically for individuals,” she says. to McAllister’s Fitness with six other intrepid souls for our Danny also makes our exercise sessions fun. “He’s always first gym session. Nobody knew what to expect; strength smiling and has a great sense of humour,” Roz says. But training wasn’t exactly at the top of the ‘neurologist- the classes offer a great deal more than a tailored workout recommended activities’ list then. and some laughs. The gym junkies, as we call ourselves, It wasn’t so long ago that doctors advised people with have become an unofficial peer support group. This social multiple sclerosis to limit their physical activity, thinking it might interaction is a significant part of the program’s appeal and bring on a relapse or worsen the symptoms. This is no longer may be at the heart of its success. the view, and the Maximising Your Strength training program Roz points out, “We benefit from the social aspect at McAllister’s Fitness is living proof. and we gain knowledge from each other’s experiences. “It started out as a four-week trial program with one session The gym’s almost like a resource centre.” a week,” recalls Danny. “The focus was on short-term results to increase muscle strength. To tell you the truth, we were a little unsure of the expected outcome but stumbled onto something pretty special.” › That ‘something pretty special’ is backed up by a study Gift wrapping wrap up conducted by La Trobe University and the MS organisation, More than 500 volunteers gave up their time to which showed that strength training not only improves muscle wrap gifts and in doing so raised $45,000 for people strength and physical functioning, but also has psychological living with multiple sclerosis. They worked on stalls and social benefits. And it’s this physical and social near shops in Federation Centres in Victoria and combination that keeps people coming back for more. Our NSW. Among the volunteers were people who have group of seven has grown to more than 30 people who fill two been wrapping gifts since 2008. sessions a week. Many of us attend both sessions. A big thank you to everyone involved.

The COOLEST products for the HOTTEST days !

Personal COOLING PRODUCTS ✓ Cool Cloths ✓ Chill Sleeves ✓ Cooling Hats with Cool Pads ✓ Neck Coolers ✓ Sunguards

MS Discount Use 100% 02 9548 1169 AUSTRALIAN Code 4467 OWNED www.personalcoolingproducts.com.au on Orders Page

6 intouch autumn 2015 www.ms.org.au www.ms.org.au autumn 2015 intouch 7 Health & wellNESS › Vision difficulties explained

It is not unusual for disturbances to of colours may also change, for steroids may be recommended. If your vision to be the symptom that example, colours can either fade recovery is only partial, an eye patch, leads you along the path to being or become darker. ‘prism’ glasses or surgery on the eye diagnosed with multiple sclerosis. In fact, Most people recover well and without muscle may be required. some 20 per cent of people discover treatment. Signs of improvement may they have the disease in this way. start in the first five weeks but it can Visual field defect Visual symptoms can include eye take up to 12 months. Multiple sclerosis can irritate the area pain, double or blurred vision, colours If your symptoms are severe or in the brain that is involved in vision. that seem faded, and big blind spots. you need to drive, your neurologist When this happens part of your Symptoms often come on suddenly, may suggest intravenous steroids, vision is missing in different areas of and significantly affect how a person which can help to speed up the your visual field. functions. But regardless of the return of your vision. Both eyes will be affected and the circumstances, it’s heartening to right half, or the left half, of vision know that 90 per cent of people Eye movement problems can ‘disappear’. This can occur to recover their eyesight. When the nerve pathways that such an extent that the affected Meanwhile, when symptoms strike it’s control eye movement are affected person cannot see half of the area essential that you see your neurologist or there can be a lack of coordination and will be unaware of objects coming ophthalmologist because early treatment between your eyes. from the sides. This can result in difficulty can lead to faster recovery. This can lead to double vision with working and driving. Most people Here is an outline of the most (diplopia) and it may be associated will recover within six to 12 weeks common problems. with nausea, vertigo and problems without treatment but intravenous with coordination. This can be more steroids are often recommended in Optic neuritis noticeable when your eyes are in order to speed up recovery. This medical term is used to describe certain positions. inflammation of the optic nerve. It tends Other symptoms can include Residual problems to affect one eye at a time but both eyes ‘jerky’ or involuntary movements Even after you have recovered, your may be affected during the course of the (nystagmus). There is also a condition eyesight could be affected in ways that disease. Multiple attacks may also occur where objects seem to move back are not immediately apparent. Most over time. The disturbance can range and forth, jerk or wiggle (oscillopsia). people note the affected eye is not ‘100 from blurring of vision to a ‘big blind spot’ Generally, symptoms subside per cent’. There may be subtle ongoing in the centre of sight. Your experience within three months. In some cases, difficulties, such as problems with colour,

8 intouch autumn 2015 www.ms.org.au www.ms.org.au autumn 2015 intouch 9 and black and white light contrast in anything less than good light. The difference between your two eyes may result in a subtle problem with depth perception. With this in mind, be aware when you are walking up or down stairs in poor light, entering or leaving cinemas or theatres or moving around in poorly lit areas at home. Take special care when you are driving at night or if you have pets. It can be easier to trip over animals or furniture because you don’t see as well as you did before your vision disturbance. › Tips to help you cope Seek advice The following health professionals and If your vision is affected in any way, it’s normal to feel anxious. These tips may services can provide useful information help you to get on with life while you wait for your vision to return to normal. and resources. • Tell family, friends and colleagues that you are having problems with your • Optometrists are trained to assess, vision so they can help you if required. prescribe, fit and supply spectacles • Ask loved ones to move furniture so you are less likely to trip over it. and lenses. They can also detect eye • Put rugs away and ensure pets are confined so you don’t stumble conditions and disorders. over them. • Ophthalmic nurses are trained nurses • Use brightly coloured tape to outline steps, doors and light switches who specialise in the care of eyes and so you can see them easily or find them by feel. minor treatment. They generally work • If you enjoy reading but are finding it difficult, try talking books. in specialist eye hospitals and eye • Be extra careful walking up steps or pouring water as you may departments of local hospitals. have difficulty judging distance. • Ophthalmologists are doctors who • Use lights to focus on the area you require to be lit rather than specialise in treating eye disease. relying on standard, overhead lighting. They diagnose eye conditions, • Don’t feel guilty if you feel distressed. However, avoid dwelling on the undertake surgical operations and negative for too long because it is most likely the condition will pass. prescribe eye medication if required. • If you are not coping well emotionally, seek support via our MS Peer • Orthoptists are specially trained Support program or call MS Connect on 1800 042 138. You can to make both eyes work together also call Vision Australia on 1300 84 74 66. (binocular vision) and help with • For other tips and advice visit the Vision Australia website at eye movements. www.visionaustralia.org.au • Occupational therapists specialise in solving practical problems, such as getting about safely and carrying › Problems at work? out daily activities. • Low Vision Clinics provide services If your ability to work has been compromised due to changes in your to people who have been diagnosed eyesight our MS Employment Support Service (ESS) may be able to help. with an eye condition for which there The ESS operates in Melbourne and Sydney and targeted regional areas. is no available treatment and who Each of our Employment Support Consultants (ESC) is an allied health are seeking positive, helpful ways professional who conducts an individual assessment and suggests ways to to adapt to their new situation. help you manage your symptoms and return to full productivity. • Vision Australia offers support and For example, is your vision permanently blurred or does your vision services in order to allow people to change when you become fatigued or hot? The ESC can work with you overcome challenges at home and to identify strategies to reduce visual challenges, such as decreasing within the community. exposure to heat or installing equipment like a modified keyboard or voice-activated computer. A resolution could be as simple as changing With thanks to Associate Professor Celia the font size on your computer. The ESC works directly with you and Chen, Consultant Ophthalmologist at can also work with your employer. Flinders Medical Centre and Flinders Contact the ESS via MS Connect on 1800 042 138. University, for her input into this article.

8 intouch autumn 2015 www.ms.org.au www.ms.org.au autumn 2015 intouch 9 FEATURE Professor Richard Millard. › Top urologist retires

After 34 years of working with people with multiple sclerosis out of urology clinics based in Chatswood and Lidcombe, Professor Richard Millard has retired. The affable Associate Professor of the Prince of Wales Clinical School estimates he has seen thousands of people facing bladder challenges and incontinence issues during the past three decades. “I have enjoyed assisting people along their journey with multiple sclerosis,” he says. “As their multiple sclerosis changes, so their requirements change and helping them has given me a sense of achievement.” English-born, Professor Millard graduated in London in 1969 and moved to Sydney in 1978. In Sydney during this period, Dr Robert Barnesworth oversaw a urology clinic at the R.A. Phillips Centre in Chatswood. “In 1980, Dr Barnesworth wanted to stop so he asked “There are a lot of treatments for bladder control problems. me to take over,” Professor Millard says. Find a urologist who is interested in continuing to see you as From 1980 until December 2014, Professor Millard your condition changes. You need someone who will stick ran a urology clinic every two weeks, first at Chatswood with you through thick and thin and who has the necessary and then at the Studdy MS Centre at Lidcombe. He saw expertise to treat what are complex and difficult problems.” 14 people with multiple sclerosis during each clinic. “I Professor Millard, who is now 70, intends to spend his always ensured that patients saw me at no cost. I believe retirement travelling. “I want to see the world and have fun in bulk billing. People with multiple sclerosis need all the while I’m young enough to enjoy it.” financial support and help they can get.” But he insists he’ll miss his patients. “People with Professor Millard wants to reassure his patients that multiple sclerosis show great courage. It has been inspiring they are in good hands with Dr Tom Jarvis, who is to watch their bravery and I’ve been honoured to help them taking over the clinic that now operates at the Studdy cope with their condition in some small way.” MS Centre at Lidcombe. “I wouldn’t retire if I wasn’t confident of my replacement. Tom will also replace me at the Prince of Wales Hospital. › We have trained him well.” Distinguished career What final advice does Professor Millard have for people Professor Richard Millard has had a long and with multiple sclerosis? distinguished career. He is a Fellow of the Royal College of Surgery, London, and the Royal Australian College of Surgery for general surgery and urology. He was also Chairman of the Department of › Seek help Urology at the Prince Henry and Prince of Wales Hospitals, in Sydney. About 75 percent of people with multiple sclerosis will Over the decades, his research interests have included experience bladder problems. alternative treatments for benign prostatic hypertrophy, Janice Merriman, Clinical Nurse Consultant – Continence, and treatment and prevention of prostate cancer and MS Care, recommends that you “put away embarrassment” urinary tract infections, and incontinence treatments. as the first step in seeking help. His interest in incontinence treatments included She also recommends that you talk to your general studies of patients with overactive bladder, stress practitioner and learn about normal bladder function. urinary incontinence and neuropathic bladder. If you are experiencing any of the following symptoms He was a member of the British Association consider seeking help: of Urological Surgeons, the American Urological • You need to go to the toilet more than once at night. Association, the International Urological Society, the • You need to go to the toilet more than six times Urological Society of Australasia, the International during the day. Continence Society and the Continence Foundation • You have a bladder infection. of Australia, among others. • You leak urine at any time. In his role with the Continence Foundation of • You go to the toilet less than three times in 24 hours. Australia, which promotes continence within the • You have episodes of not being able to pass urine. community, Professor Millard instigated the “Remember, MS Connect has a registered nurse Continence Helpline and was heavily involved in available during office hours and if you aren’t sure you securing government funding for this service. can call 1800 042 138 and have a chat,” Janice says.

10 intouch autumn 2015 www.ms.org.au www.ms.org.au autumn 2015 intouch PB LIFESTYLE › Dust off your dreams Take a step towards achieving that long-held ambition because applications are open for the 2015 MS Go for Gold Scholarships.

Around this time last year, Newcastle resident Greg Pugh was rekindling his goal to sail in the Sydney to Hobart Yacht Race and on Boxing Day, he sailed out through Sydney Greg Pugh. Heads, heading to Hobart. He was aboard the yacht Wot Eva, as part of the Sailors Reading about it reignited Greg’s dream to go ocean with disABILITIES crew. “We finished 20th out of 100 starters,” sailing. He began working towards becoming a crew Greg says. “It was unbelievable.” member as well as sailing in the Sydney to Hobart. Greg, 49, was diagnosed with multiple sclerosis in 2008; He applied for an MS Go for Gold Scholarship to the same year in which his marriage broke up and he was help fund the gear he needed (see photo) and the travel retrenched. Multiple sclerosis left him with limited movement in required to build his skills on yachts in Sydney. his left arm, stiffness in his left leg and difficulties with balance. It was during this time that Greg crewed with Sailors Up until then, he had been a passionate sailor and won with disABILITIES, which led to him being selected for several championships. He had raced 18-foot skiffs on Sydney the Sydney to Hobart. In addition, he was awarded a Harbour and dreamt of ocean yachting, but multiple sclerosis berth on Oceans of Hope for the legs from Samoa to ended that. “Nobody wanted me on their boat because I Auckland, and Auckland to Sydney. couldn’t do my share of the work.” “I’m thrilled to have been accepted for that part of It was a huge blow and for a few years he was overcome Oceans of Hope’s voyage,” says Greg. “It wouldn’t with depression. But in early 2014, Greg heard about Oceans have been possible without the MS Go for Gold of Hope, a yacht that is circumnavigating the world in a Scholarship. Life isn’t the same and I love it.” journey arranged by Sailing Sclerosis, an organisation based in Denmark. The yacht includes crew members with multiple For more information about Greg and Oceans of Hope sclerosis and is due to be in Sydney for World MS Day go to www.sailing-sclerosis.org/oceans-of-hope/ on Wednesday 27 May 2015. news/2014/141227-interview-greg-pugh/

› Apply now › Each year, money raised at our Karen records her songs MS 24 Hour Mega Swim, Squash One morning in 2000, Karen Ford woke up to and Racquetball events funds our find she was paralysed from the neck down MS Go for Gold Scholarships. along the left side of her body. Scholarships are awarded under The young mother, who lives in Grafton in northern the categories of the arts, lifestyle, NSW, had three children aged five, nine and 14. Within education, travel, employment, sport, a matter of weeks she went from fearing she had a music and gym membership. To brain tumor to being told she had multiple sclerosis. be in the running to win one of the Fortunately, Karen had a mild version of the disease and regained the use of 2015 MS Go for Gold Scholarships her limbs. She adjusted to having multiple sclerosis and got on with raising her download an application form today. children. Today she works as a coordinator with Playgroups NSW, still based in Guidelines on how to enter, along Grafton. But over the years her symptoms have increased and Karen, now 46, with the application form, are on has problems with balance, memory and fine motor skills. This is particularly our website and applications are distressing because she plays guitar, sings and writes country music. due by 6 July. Late applications “I’ve been a fan since I was 18,” Karen says. She regularly performs at will not be accepted. country music clubs and ‘musters’ in Grafton and nearby Yamba. If you need assistance to Last year Karen applied for an MS Go for Gold Scholarship because she complete your form or you need wanted to record her songs before multiple sclerosis made it impossible. She the forms posted to you, call MS was awarded $3,000 and used it to create a nine-track CD, Your Whole Heart, Connect on 1800 042 138. with the help of Paul Agar from Heaven Studios in Yamba. The forms can be completed “My poor memory means I can no longer remember the words to the songs in a language other than English, I wrote and Paul was so supportive. He encouraged me when I forgot the if necessary. words or my voice played up as it now does because of multiple sclerosis.” Apply by visiting Although Karen has performed with bands, she had never heard herself sing www.ms.org.au/go-for-gold.asp her songs. “I cried when Paul played my songs with the backing music. It’s been fantastic and I’m so grateful to have been able to realise my dream.”

PB intouch autumn 2015 www.ms.org.au www.ms.org.au autumn 2015 intouch 11 › Nagi is missed › Val retires after 35 years The residents and staff of Waverley MS Community Shop has lost one of Lidcombe Shared Supported its most valued volunteers since Val Wylie retired after Accommodation have lost years, Nagi moved into 35 years of generous support. a great friend, big personality the Lidcombe residence “Each week Val always arrived with a smile on her face and warm-hearted presence where his parents were and a great attitude,” says Kerry Reiter-Lynch, MS Retail with the sudden passing regular visitors. Shops Support Manager. “Volunteering has changed of Nagi Magdalawi, on At Lidcombe, he found over the years and it’s extremely rare to find people who 21 December 2014. happiness with Zynab. help one organisation for more than three decades.” Michael-Paul Mills, The pair married in 2010 Val and her husband, Keith, were inspired to support NSW Senior Team Leader, in a ceremony attended people living with multiple sclerosis when Mary Crouch, Residential Services, Service by residents, staff and the one of their employees, met a woman with the disease. Innovation, remembers couple’s family and friends. That was in 1980 and they formed a committee with Nagi, 47, as being a special, Zynab says she will always some others and organised dances, dinners, musical larger-than-life character. miss Nagi’s huge smile and evenings and other fundraising activities. “Mostly, we “The loss of Nagi has wonderful sense of humour. raised funds in order to buy items for the people who been felt very strongly by He will also be lived in the MS residential facilities,” Val explains. the remaining residents,” remembered for his fondness When we opened our Waverley shop in 1993, Val Michael says. “His irreverent for chocolate, his interest was among the first people to volunteer sense of humour, booming in other people, and his and she’s been a stalwart ever since. voice, kindness and very uncompromising commitment “Val is moving into a retirement village,” social personality has left to living his life as fully and as Kerry says. “She’s busy cleaning out a huge gap.” independently as possible. the house and is donating all her items In 2007, after living with Nagi, a powerful personality, to the shop. Val’s little pearls of wisdom multiple sclerosis for several gone too soon. will be missed on Fridays.” 20150127 MS Aust Intouch Mag 210 x 140 Jan OL.pdf 1 28/01/2015 3:32:17 PM

C

M

Y

CM

MY

CY

CMY

K

12 intouch autumn 2015 www.ms.org.au www.ms.org.au autumn 2015 intouch PB READATHON AND MEGA SWIM Meet the Super Kindy Kids who raised $2,082. › Top fundraisers

Every year, our MS Readathon is supported by a range of caring adults and enthusiastic children who donate their time, money and energy to support people living with multiple sclerosis. Here at MS, we are gearing up for the 2015 MS Readathon which kicks off on 1 June, but we also want to thank the 3,458 people who took part in the 2014 Readathon. Congratulations to our top fundraisers, including Joshua Lewsam, 10, from NSW, who was the Highest National As usual, schools can make a difference by encouraging Fundraiser. Joshua raised an incredible $4,210. In Victoria, their students to raise money. Mr Martin Rossleigh, a teacher Makaira Muscat, seven, received $4,060 in donations last with Sydney Grammar School Edgecliff Prep, is a great year, while in the ACT, Kathryn Spedding, 13, raised $2,385. example as his students raised a staggering $22,650! In a further gesture of community spirit, they kindly donated their prize of a makeover to their school reading spot to another school in greater need. › Other incredible efforts came from Laburnum Primary Swim for MS School in Blackburn, Victoria, and Hughes Primary School in the ACT, to name a few. Sam Bramham and Carol Cooke. Also, thank you to the supporters of our 60 Minutes for MS event, including Sydney’s Leichhardt Public School Parents and Citizens’ Association, which donated $3,745 and Victoria’s Derinya Primary School, which raised $1,292. Visit www.msreadathon.org.au to register from 1 June and make a note of August, which is the 2015 MS Readathon reading period.

Want to join in a whole lot of fun? The MS 24 Hour Mega Swim program is open for registrations so sign up for an event today. Sam Bramham, OAM, gold medallist, Australian Paralympian, author and Big Brother contestant, will be making a splash at this year’s Fitzroy and Melbourne MS Mega Swims. Sam is inspired by Carol Cooke, AM, who is a close friend. “I’ve seen how multiple sclerosis affects those around me and the challenges it can bring,” he says. “This is why I’m so passionate about supporting people who live with the disease.” He hopes to inspire teams to meet their goals in and out of the pool. “I want them to have that feeling of achievement.” Come along to the Fitzroy and Melbourne events and meet Sam. Or go to any of our events and remember, you can swim for as long or as little as you want.

Here are the upcoming dates: > 14 March: Leeton MS 24 Hour Mega Swim > 21 March: Wollongong MS 24 Hour Mega Swim > 2 May: Melbourne MS 24 Hour Mega Swim > 2 May: Melbourne MS 24 Hour Mega Squash and Racquetball > 2 May: Canberra MS 24 Hour Mega Swim > 2 May: Sydney MS 24 Hour Mega Swim > 4 July: Casey MS 24 Hour Mega Swim

Register at www.msmegaswim.org.au

PB intouch autumn 2015 www.ms.org.au www.ms.org.au autumn 2015 intouch 13 MS EVENTS

› Registration is essential so email Information sessions [email protected] or call 1800 042 138.

VICTORIA Mood and Emotions > Webinar Thinking and Memory The * indicates the Dr Catherine Condon looks Wednesday 1 April, Neuropsychologist, Ben session will be hosted by at management options 10.30am – 11.30am Harris explains strategies an MS Peer Support Group. > Friday 17 April to manage changes 10.30am, Blackburn Sleep Well > Webinar Monday The Role of MS Services Tips to sleep well 11 May 7pm – 8.30pm Learn how we can assist you Sleep Well > Teleconference > Tuesday 10 March Discuss sleep strategies Wednesday 25 March Bladder and 12.30pm, Mornington* > Tuesday 5 May 7pm – 8.30pm Bowel Changes > Wednesday 27 May 12.15pm, Cheltenham* > Teleconference Learn about causes and 1.30pm, Yarra Ranges* Wednesday 17 June treatment options Medication Update 2.30pm – 4pm > Teleconference Tuesday Working with MS An MS Nurse talks 31 March 2pm – 3.30pm Explore your rights and about new medications Managing Fatigue > Webinar Wednesday responsibilities at work > Tuesday 16 June Strategies to manage 13 May 11am – 12.30pm > Saturday 21 March 12.30pm, Mornington* this invisible symptom > Teleconference Thursday 10am, Blackburn > Webinar Wednesday 25 June 7pm – 8.30pm > Saturday 13 June NSW & ACT 8 April 11am – 12.30pm 10am, Footscray Managing Fatigue > Webinar Thursday Managing the Heat Strategies to manage 21 May 7pm – 8.30pm Dr Ollie Jay on the Bladder and this invisible symptom impact of heat Bowel Changes > Tuesday 26 May Exploring Respite > Webinar Thursday 12 Learn about causes 10am, Deakin Find out what’s available March 10.30am – noon and treatment options and how to access it > Wednesday 25 March Exploring Wellness > Webinar Tuesday 1.30pm, Coldstream* Over lunch, discuss 14 April 10am – 11am > Wednesday 27 May ways of living well 1.30pm, Blackburn > Saturday 28 March, time Understanding your and cost TBC, Canberra Superannuation Complementary Maurice Blackburn Lawyers Approaches – Yoga All regions explain superannuation A look at the benefits of yoga TELECONFERENCES > Webinar Thursday Sexuality in > Wednesday 25 March AND WEBINARS 16 April, 7pm – 8pm Multiple Sclerosis 1.30pm, Blackburn A discussion about > Tuesday 19 May Live Well with MS the impact on your 10am, Shepparton* Handy lifestyle tips sexual relationship for living well > Webinar Tuesday Conversation > Webinar Friday 24 March 1pm – 3pm with Centrelink 13 March 10am Discuss pensions EXERCISE GROUPS and entitlements Mood and Emotions Medication Update Please note that some of > Tuesday 14 April Psychologist, Dr Sally Shaw, An MS Nurse talks these won’t be held during 12.30pm, Mornington* on how to become the about new medications the school holidays. > Tuesday 21 April CEO of your life > Teleconference Tuesday 10am, Shepparton* > Webinar Tuesday 12 May 2pm – 3.30pm NSW > Tuesday 23 June 17 March 7pm – 8.30pm For costs of classes held 7pm, Blackburn Mindfulness in Sydney and the Central Complementary Learn about its benefits Coast, call Tracy Martinuz Exploring Wellness Approaches – Yoga > Webinar Wednesday on (02) 9646 0692. Psychologist Dr Sally Shaw The benefits of yoga 22 April, 2pm – 3pm on how to take charge > Webinar Wednesday MS Exercise Classes of your life 18 March 10am – 11am Working with MS Mondays > Wednesday 15 April Your rights, responsibilities > 10.30am East Gosford: 1.30pm, Benalla What is Peer Support? and financial matters gentle exercise for > Saturday 9 May Learn how to access advice > Webinar Wednesday balance, strength time TBC, Geelong and emotional support 29 April 7pm – 8.30pm and flexibility

14 intouch autumn 2015 www.ms.org.au www.ms.org.au autumn 2015 intouch 15 > 12.30pm Tuggerah: gentle > 5.45pm – 7.15pm, exercise for balance, during school term strength and flexibility Cost: $17 per session Wednesday Call Ruth on 0401 288 921 > 10am Chatswood: gentle South Eastern Sydney Local Health District exercise for balance, Massage Therapy strength and flexibility in Canberra Multiple Sclerosis Clinic > 11am Chatswood: Phone therapist directly upper-limb exercise; for appointments on the suitable for people who following days: use a wheelchair > Tuesdays and Wednesdays Iyengar Yoga for MS Phone Glenda on Tuesdays 0407 918 500 > 10.30am Marrickville > Thursdays and Fridays Wednesdays Phone Isi on 0431 100 265 > 10am Studdy MS Centre, Lidcombe > 11am Studdy MS Centre, Lidcombe In helping to address the healthcare needs of people with Multiple Sclerosis (MS) living in South Eastern MS Yoga Exercise in Canberra Sydney and Illawarra Local Health Districts, the SESLHD Mondays The University of Canberra has opened a MS Clinic at Prince of Wales Hospital (POWH). > 10.45am Lane Cove Student-Led Neurological and Falls Physiotherapy The MS Clinic is dedicated to the diagnosis and long-term Clinic offers exercise classes care of patients with MS and related disorders, and utilises for people with neurological the extensive multidisciplinary services available at POWH. conditions. Open to NSW The MS Clinic is run under the direction of A/Prof Arun Krishnan, and ACT residents Consultant Neurologist, Prince of Wales Hospital who has > University of Canberra a special interest in Multiple Sclerosis and is currently Campus Health Hub, involved in related research. Bruce, ACT MS Stretch and Strength Cost: Individual Monday to Friday assessment $30 ($20 for Contact details: (individual programs) concessions and pension) Institute of Neurological Sciences > The gym at the Studdy and $5 per class Prince of Wales Hospital MS Centre, Lidcombe Call (02) 6201 5843 or email Level 2 High Street Entrance [email protected] Randwick NSW 2031 Goulburn Heart Moves 2nd and 4th Thursday VICTORIA Fax all referrals to A/Prof Arun Krishnan: (02) 9382 2428 in the month Yoga in Blackburn > 10.45am – 11.45am > Mondays 10am For appointments phone: (02) 9382 2414 (alternate locations) > Fridays 9.45am and Cost $10 11.15am All patients are bulk billed. Call physiotherapist Hee-Lian Cost: $10 per class Foreman on 4822 2440 Call (03) 9845 2700 Low waiting times. or 0413 468 516 Email: [email protected] Tai Chi in Blackburn ACT > Mondays 12.30pm https://www.sesiahs.health.nsw.gov.au/MS/ Yoga for MS in Canberra Cost: $10 per class Mondays Phone Jane on 0416 279 811 Once a booking is made, > 10am – noon, patients will be sent a letter with appointment details. during school term Myotherapy in Blackburn Cost $10 per session > Tuesdays, one therapist Call Roslyn on 0420 290 076 > Fridays, two therapists Wednesdays Call (03) 9845 2700

14 intouch autumn 2015 www.ms.org.au www.ms.org.au autumn 2015 intouch 15