A message from the

A message from the General Manager – Member and Client Services SUE SHAPLAND RN, BN, Cert MS Nursing, MSCN “What lies behind you and what lies in front of you, pales in comparison to what lies inside of you.” Ralph Waldo Emerson. This quote supports that belief, and we often see living examples, that everyone has an inner strength that may not become evident until life’s challenges come along. I have met so many inspirational Members in my time here at MSWA and their stories are varied, but they have all risen to the challenge of being diagnosed with multiple sclerosis (MS) and the ongoing changes that can bring. What a difference a decade or two can make; the introduction of new therapies over the years has and will continue to make a real difference in people’s MS journey. We now have 12 therapies and thankfully some in trial for progressive MS, and perhaps the promise of some treatments to repair damaged myelin. The ongoing research really shows just how complex MS is; over 200 genes are now implicated, and we know more about other factors that contribute to the cause but there’s still more we don’t know. MSWA is very proud to contribute funds to support MS research efforts here in WA, nationally and internationally. Our annual contribution continues to grow – it’s million this year! We also now support research into other neurological conditions. Of course, the financial year has just ticked over and we are busy finalising the reports. The year ahead will be busier and even more exciting on many fronts. Our new Butler Supported Accommodation and High Support Facility looks amazing. The building is on track to open in January next year, and it certainly won’t disappoint. We are also currently fitting out premises in Kelmscott bringing services closer to home for those in the eastern corridor. Work is continuing, negotiating the Busselton premises with delays beyond our control and we are also doing preparatory work on the Albany premises. The National Disability Insurance Scheme (NDIS) is expanding across WA, with the roll out of Fremantle, Melville and South Perth local Government areas from July 1. Our NDIS team are busy working with our Members to prepare them for planning meetings and we are holding seminars as well as one to one appointments. If you need any information about the NDIS please contact our team, see the update in this edition. The next big roll out will include the remaining southwest areas around Bunbury, the City of Joondalup and the City of Wanneroo from October 1, 2018. If you know anyone under 65 living with a neurological condition who wants information about the NDIS, please refer them to our team. As you may have heard, Wilson has had a massive and well overdue facelift! This has been a major undertaking and we have had many months of upheaval and relocation of teams and functions; but we had our eyes on the prize and now we can enjoy our great building and new décor. I would like to sincerely thank the wonderful staff who have been very tolerant of the ongoing movements and noise AND of course the Members who have been dislocated from Wilson to Como where we held the Outreach Group for many months. The larger gym and new massage rooms have been well received. I hope not too many Members were affected by the winter flu season, there have been some quite virulent infections around and the weather hasn’t helped. Please remember your Member Services Team are here to assist you with accessing quality advice on many aspects of MS and up to date information on treatments and research. Please don’t hesitate to make contact through reception on 9365 4888 or Get-in-touch@mswa.org.au. We hope you enjoy this Bulletin and find the articles of use. Want to access research articles? Here are the places you can access up to date research articles relating to multiple sclerosis: • Vitality – Our monthly research focussed e-newsletter • Our website – https://mswa.org.au/news/latest-news • Right here as part of your Member magazine Bulletin. It includes great research articles and information every quarter. Just email communications@mswa.org.au if you would like any further information. 6 | MSWA BULLETIN SPRING 2018

MS RESEARCH ROUND UP SHARING RESEARCH UPDATES FROM AROUND THE WORLD SUE SHAPLAND RN, BN, Cert MS Nursing, MSCN From the UK MS TRUST Relapses and brain fog Giedraitiene N, et al. Cognition during and after multiple sclerosis relapse as assessed with the brief international cognitive assessment for multiple sclerosis. Sci Rep. 2018 May 25;8(1):8169. Many people with MS talk about ‘brain fog’ or ‘cog fog’ when describing the feeling that their thinking processes are not as organised or reliable as before. This study assessed memory and thinking (cognition) to see how it changed during and after a relapse. For this study, 60 people experiencing an MS relapse, 30 with stable MS and 30 without MS took part in this study. Cognition was assessed using BICAMS, a quick and easy set of tests measuring different aspects of thinking and memory. For those experiencing a relapse, the tests were applied during the relapse, and then one and three months after. The group with stable MS and the group without were tested just once. All test scores were lower in people with MS, both relapsing and stable, vs those without MS. The test measuring information processing speed was worse in relapsing MS than in stable MS. Tests assessing visual and verbal memory were not significantly different for relapsing MS and stable MS. Within the relapsing group, scores improved one month after relapse. The study confirms relapses can impact on cognition, with information processing speed most affected; thus, it’s wise to avoid making big decisions during a relapse. The good news is that processing speed improves quite quickly and is back to levels typical for people with MS after just one month. The researchers commented that cognition is not often monitored during clinic appointments and recommend BICAMS as a quick and effective way to do this, particularly for those having a relapse. Intensive physiotherapy technique improves hand and arm use. Mark VW et al. Phase II randomized controlled trial of constraint-induced movement therapy in multiple sclerosis. Part 1: effects on real-world function. Neurorehabil Neural Repair. 2018 Mar;32(3):223-232. Constraint-induced movement therapy (CIMT) is a form of intensive physiotherapy originally developed to help people with one arm weaker after a stroke. It involves restricting the use of the stronger arm and intensively training the weaker arm and providing coaching for use in everyday life. In this small study, researchers tested this technique with people with MS and looked for MRI evidence of changes to brain structures. 20 people with MS with significant weakness in one arm received either CIMT or a package of complementary and alternative therapies (CAM). Both groups received 3.5 hours of direct contact therapy daily for 10 consecutive weekdays. Eight people in each group completed treatment and returned for follow-up assessment one year later. Advanced MRI techniques were used to compare brain structures in the two groups before and after treatment. The CIMT group showed greater improvement in the everyday use of their weaker arm than the CAM group and the improvement was retained at the one-year follow-up. Both groups showed improvements in speed and dexterity of their weaker arm immediately after treatment courses. At one-year follow-up, speed and dexterity of the weaker arm had continued to improve in the CIMT group but was returning to pre-treatment levels in the CAM group. MRI results suggested that in the CIMT group there were measurable changes in brain structures at the end of the ten days of treatment; this was not seen in the CAM group. The researchers conclude that the results warrant further studies with greater numbers and longer follow-up times. They intend to evaluate CIMT on people with MS with mobility. Continued over MSWA BULLETIN SPRING 2018 | 7