Asian MS Newsletter 2013 Issue 3


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Asian MS Newsletter 2013 Issue 3

  1. 1. Issue 3 - 2013 Asian MS – Newsletter FINDING BALANCE – A Carer’s Perspective My name is Gurmeet Singh Sually and my father has lived with MS for over 20 years. I have two brothers who are older than me (I am 20 years old) and we are my father’s main care givers. Bupinder, my dad, is a longstanding member of Asian MS and Gurmeet (left) with his brother Gurdaas has previously served on the Asian MS committee. There are both general and individual aspects to being a carer; maturity and responsibility is required regardless of age or circumstances, while there are also specifics that apply to an individual’s care needs. COPING Having been disabled with severe eczema since birth, I am very aware of the caring dynamic. With both my brothers now living away from home, friends always ask me how we cope with my dad’s care needs and my own, considering our respective disabilities. Honestly, I don’t always know – caring is not a text book and being a family carer does not come with a manual. Things are not black and white, however, it is continuous and ongoing. Page 1 GROWING UP I consider myself to have been fortunate in some ways because I grew up with Dad’s MS from a young age. As I became older, it was just part of life. Caring still has its challenges though, one of which is trying to find a balance from each day to the next. An important thing that I have learned is that with MS it is hard to make and keep plans that have been pre-arranged. FINDING BALANCE Sometimes life can seem like a roller coaster, with things going well one day and everything (social life, college and home) being balanced. Then suddenly Dad becomes unwell, reality hits and he needs help and support. Sometimes it can be hard to remain optimistic, however, it is key to acknowledge that to remain both true to yourself and be a carer is to recognise that they are one and the same. HAPPY MEDIUM Life is, and will probably carry on being, a challenge. Curve balls can be thrown your way, however, in my experience how a carer approaches each challenge or task is fundamental to finding a happy medium in your life Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
  2. 2. Caring can be a tough job, however, there is a wealth of support available, from home help to respite breaks to financial aid. The MS Society’s website has a whole section dedicated to caring, including a section for young carers (those who are under 18 years old). For more information, the following websites are useful: Do YOU have a personal story to tell? If you would like others to hear about your personal journey with MS then please do get in touch with us here at Asian MS. Email es/CarersDirectHome.aspx You can also call the MS Society’s helpline, if you need to chat with someone: 0808 800 8000. There’s an update on the success of Carer’s Week on p.13 FUNDRAISING FOR ASIAN MS If you are interested in fundraising for Asian MS, please contact our fundraising officer, Mukesh Jethwa on We rely on donations to keep going so if you know of someone wanting to raise money for charity, why not suggest that they fundraise for Asian MS? There are further details in this newsletter about how to make a donation and what the money is needed for. Page 2 We’re now on Scribd! Asian MS is currently in the process of uploading all past editions of the newsletter to the document-sharing website Scribd. You can share the public links for each of the newsletters so that your friends and family are able to read them too. You can view the newsletters via the following link: tGroup Deadline for the next edition of the newsletter is 1st December 2013. Please send your stories, links, photos and news to Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
  3. 3. A message from the Editor…… Here at Asian MS we always pride ourselves on the support we offer our members. Support is a key part of helping to cope with MS, and the role played by carers in the MS community is vitally important. It is one of the two main themes running through this edition of the newsletter. We hear from Gurmeet and how he has managed to find a balance between living his own life and caring for his Dad, who has MS. The other main theme for this edition is the international aspect of MS, whether it’s taking a holiday or learning about the experiences of MSers living abroad. Manisha speaks about how having MS influenced many of the decisions she made when she and her husband moved to Switzerland; while Lubna talks about her fantastic holiday in Rhodes. A big thanks goes to them for sharing their stories with us. Please do get in touch with us here at Asian MS if you have any stories you would like to share in the newsletter. We are always looking for more contributions from our members, as well as feedback. You’ll find ways of getting in touch at the end of the newsletter. Finally, please do spread the word about Asian MS, particularly if people are looking to do some fundraising. We are funded entirely through donations so we need to carry on fundraising in order to continue with our work. So if you know someone who is running a marathon, baking cakes, doing a sky dive or planning any other type of potential fund raiser, do mention Asian MS to them! ~Trishna x PS. As always, please do pass this newsletter on to anyone who may be interested There is also the usual news, happenings and information about research studies, including some preliminary details about MS Life 2014, which will be the MS Society’s largest event next year. CONTENTS -Finding Balance – A Carer’s Perspective….p.12 -A message from the Editor….p.3 -Dates for your diary….p.17 -Get involved in projects and research…. p.18-21 -Spotlight on Research and Researchers….p.22 -Meet the Asian MS Finalists of the MS Society Awards 2013….p.4-6 -Recipe from Lubna….p.23 - Members’ News….p.7 -General Information….p.24 -An MSer moving abroad…..p.8-10 -Latest Research & MS in the News….p.25 -Holidaying with MS….p.10-12 -Fundraising for Asian MS…..p.26 -News and Happenings…..p.13-16 -General Information…..p.27 Page 3 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
  4. 4. MEET THE FINALISTS! Asian MS is proud to announce that two of its members have been shortlisted as finalists for the MS Society Awards 2013. Priyal Raja and Trishna Bharadia are both up for awards in different categories. The awards ceremony takes place in London on 17th October 2013. Raising Awareness among Asians and the Young – Trishna aims to give power through knowledge ~By Manisha Chandarana and Anisha Gangotra Asian MS member and Newsletter Editor, loss of strength in her hands, numbness in Trishna, has her limbs, the “MS Hug” and pins and been needles. shortlisted as a finalist After her diagnosis, she set about doing in the something that she is well-versed in from Volunteer of her full-time day job, which involves (L-R) Manisha, Anisha & Trishna the Year category for the MS Society Awards 2013. As her sisters, we were extremely proud when we heard the news and couldn’t think of anyone more deserving, given the amount of time and effort she has spent in raising awareness about MS within the Asian community and among young people. knowledge is power, she wanted to find out as much as possible about MS. This led her into contact with various voluntary, charitable and other organisations, of which she has become an active part. These include the MS Society (via her local branch and Asian MS), Shift.MS, and the Barts & The London neurology team (aka Team G). She realised that she could also help others She was diagnosed with Relapsing Remitting MS in 2008, at the age of 28, after experiencing a number of symptoms for around 4-5 years, which included a Page 4 information gathering. A strong believer that by disseminating general information, as well as sharing her own experiences, to encourage a better understanding of the illness. Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
  5. 5. She focused on young people and the Our sister is never one to actively seek the Asian community, two sections of the limelight, so we’re so pleased that she’s had population where there was a gap in this opportunity to be recognised for the terms of providing easy-to-understand effort she puts in to her work with MS. We information about MS. As well as wish her all the luck in the world in the becoming the Awards Ceremony on 17th October! editor of the Asian MS quarterly newsletter (which she has developed after it Bombay Dreaming, Priyal is a filmmaker with a cause ~By Vinnie Kochhar was started by Mukesh Jethwa, the Asian MS dynamic member of Asian Fundraising Trishna speaking at a training event for pharmaceutical firm Genzyme in Oxford Priyal Raja, a young and MS is not the type to rest Officer), she has written online articles, on his laurels. He recently spoken at national and local information assisted Bollywood events, and regularly talks at Director Prakash Jha with preceptorships, which are educational his latest movie, workshops for pharmaceutical company Satyagraha and the film employees to help them understand more has just been released in the UK to critical acclaim. about MS. Not bad for a 21yr old! Her hard work was recognised by people For Priyal, it is all in a day's work! Though he was from Asian MS, healthcare professionals, diagnosed with MS at the age of 14yrs, he has never community organisations, friends and let MS get in the way of fulfilling his dream of a career family, and as a result she was nominated in film making. and endorsed for an MS Society Award. His father, Himanshu Raja, told me that Priyal has overcome many disabling symptoms and remained Page 5 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
  6. 6. focused on the task in hand. As a child he would Eager to make his own mark, Priyal contacted the always work hard at school despite missing many MS Society and Asian MS, as he was keen to make days because of ill health. He completed GCSEs a documentary about life with MS. The project was and A-Levels through sheer determination and hard completed earlier this year and is entitled “Coping work. with MS”. It stars Sanjay Chadha and Shiv Sharma of Asian MS fame. You can watch it here: His Headmaster at Trinity School in Belvedere , Kent, described him as hugely popular and one of It has already received some 6,000 hits and is the best head boys the school had ever had! Priyal certainly a very moving and sensitive piece. has helped many fellow pupils also affected by chronic illnesses to always look on the bright side of This positive approach to life and MS is inspiring in life! It is a message he continuously promotes. one so young and his father commented that "If we are having a bad day, it is Priyal we all turn to. He After school, he was offered a job by Kismet Radio, makes us feel better." He is able to lift the spirits of who invited him to be a Bollywood correspondent, family and friends of all age groups. with a regular slot on Saturdays. Now he could combine his love of communicating as a journalist Priyal has helped to spread the word about MS in his with another great interest - Bollywood! local community in Kent, nationally via In September 2011 Priyal commenced his University his links to Asian degree in Film MS, Production. At the and on an same time he wrote for an online Asian Priyal interviewing the iconic Amitabh Bhachchan magazine named Desi On the set of Satyagraha with actor Arjun Rampal international level through his film work. His ‘can do’ attitude and natural charisma makes him Blitz. He was frequently out and about at red carpet a great role model for youngsters and adults alike. events, rubbing shoulders with A-list Bollywood He encourages us all to follow our dreams no matter actors. He eventually met Prakash Jha and joined what obstacles come our way. the production team of Satyagraha for three months in India. Priyal had to keep pinching himself. Page 6 Priyal has been shortlisted for the MS Society Young Person of the Year Award 2013 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
  7. 7. MEMBERS’ NEWS Congratulations Ram and Deepthi! Asian MS Member shortlisted in National Art Competition Amas Bansal, a member of Asian MS since 2012, was shortlisted for the final judging round of The heartfelt congratulations to long-standing National Open Art Competition, a UK-wide Asian MS member competition that is open to all disciplines of art. Amas is a part-time graphite pencil artist and Sreeram was short-listed with his drawing “Girl on a Ramagopalan (Dr. Motorcycle,” which references a still of actress Ram) who got married Marianne Faithfull, as seen in the film of the same this summer. His name. It was his most ambitious piece of work to date and it was a great honour to have been wedding, which was shortlisted. Asian MS would like to say well done for attended by some getting to that stage of the competition! Amas members of Asian MS, became a member of Asian MS after attending the Annual Meeting in Maidenhead in 2012, which he was a spectacular was invited to by a friend who is a member. If you event in Madurai in would like to see more of Amas’ work or you’re southern India – Ram interested in commissioning a piece you can find him on Facebook: even arrived on an elephant! Asian MS Asian MS would like to offer big and would like to wish him and ef=ts his new wife Deepthi all the best as they embark on their new life together and we look forward to welcoming Deepthi into our fold soon! "Girl on a Motorcycle – A. Bansal, 2013” (click to enlarge) Page 7 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
  8. 8. An MSer moving abroad – by Manisha Chandarana Moving to another country is a daunting prospect for anyone, but for me and my husband, the fact I have RRMS was a make-or-break factor when it came to taking the plunge. We wanted to make completely sure that I would have good healthcare and support if we were to move away from our network of friends, family, and the NHS, which despite its faults, we were completely familiar with and knew where to go and what to do if we needed help in managing my MS. At first, this all seemed very daunting, as we were acutely aware of how expensive my Avonex is, but the basic cover has a ceiling cap, which means I only ever pay up to a certain amount every year, after which the insurance firm covers 100% of the costs. So, after “It put our minds at rest having spent and after considering a several host of other factors, we weeks finally decided to move!” working out that my healthcare costs weren't going to send us broke, we then set about researching doctors and medical facilities. We were lucky enough to be put in touch with a consultant who came through So, when deciding whether to move to contacts from Team G at Bart's & The Switzerland, researching the healthcare London. He willingly agreed to meet us system was an important task. The first informally when we were visiting what big difference is that the system is fully could be our future home in a fact-finding funded by health insurance. Everyone trip and he spent half an hour showing us has to buy a basic insurance policy which the facilities and talking us through the covers most conditions and standard level of care we should expect. medication. You can then increase your level of cover to semi-private or fully private (which in general terms covers some non-standard medication and the type of ward you are in during in-patient hospital stays). MS and standard medication is part of the basic cover, for example, but Vitamin D on prescription is part of the upgrade which has an added cost structure. Page 8 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
  9. 9. My first real experience of the healthcare system was the week I arrived. I had brought some medication with me, but after taking out three different injections and all of them not 'looking quite right', I came to the conclusion that they hadn't travelled well from the UK. So I emailed the neurologist I'd met on the previous occasion, in the hope he still remembered me, as a number of months had already passed. He did, and after listening to my predicament, he booked an appointment to see him 2 days later. That's when I really came to see just how efficient the Swiss medical system is. I was given a very thorough neurological exam and then after looking at my medical files, which I'd brought over with me, they sorted out getting a new batch of medication to me straight away. The medication ordering line would have usually shut by the time I had my appointment, but the MS nurse at the hospital had called them and asked if they could “They spoke perfect stay late in English and everything order to talk ran like clockwork” me through the ordering process. My medication arrived the next morning and since then, I've never had a problem ordering more. I call them up a few days in advance, and they'll send out new medication, plasters, alcohol wipes and sharps bins (the latter three being complimentary) to arrive within the allotted time they have given me (they have never yet been late - must be a Swiss thing!). Page 9 So after settling into our new home, time flew by and I was already ready to have my annual check-up and MRI. MRIs here are done yearly unless you opt out. Yes, seriously. My scans were done over a period of two days - one day I had with/without contrast for my spine and the next day I had with/without contrast for my brain. My appointment with the neurologist was a week later - which was a nice surprise as I did not have to wait for weeks or months to get my results. The whole consultation took an hour. I spent 30 minutes with the registrar, going through my full medical history, my current state of health (all of which was being plotted on a computer graph to track my progress) and a comprehensive and thorough neurological exam. I then had 30 minutes with a senior consultant, who discussed my health with the registrar and answered all my questions. A copy of my MRI scan on disk was promised to me (which arrived the very next day in the post) as was a copy of all my blood test results and a write-up of the appointment (a full three page report plus test results arrived in the post a few weeks later - albeit in German. Google Translate anyone?!). Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
  10. 10. A follow-up appointment was booked for me for six months time, repeat prescriptions were written for Vitamin D and paracetamol, and I was sent on my way feeling cared for and looked after! So in summary, my experience so far has been excellent. Don't get me wrong, the insurance is expensive (as is everything in Switzerland!) but as a result, doctors have an incentive to make sure their patients are well cared for, otherwise it's easy for a patient to just find another doctor. I have found the system efficient and well-organised, and my lack of German has not been a problem at all with most people speaking a very good level of English. There is much more of a 'take control of your own health' approach here, which I think stems from the fact the payment of healthcare is very visible. People are encouraged to seek help “I hope that I continue to when have such a positive needed, but not to experience in the future!” abuse the system as this will obviously cost the patient money. Have the Swiss got it right? Well from what I've seen in the short time I've been here, it seems to work well for them. Page 10 Our fabulous holiday in Rhodes – by Lubna Haq We have just had short city breaks over the last five years so Rehan and I decided to visit Greece this time for 10 days! We checked the flying time and it was a two hour direct flight from Birmingham International Airport to Rhodes Diagoras Airport. When booking our flight with the Sovereign travel agent we requested Special Assistance at the airport for both sides of our journey. This service provides a wheelchair, should you so wish, access to a lounge before boarding the flight, as well as early boarding so that you are not crowded by the other passengers. Sovereign also ensured that you were seated near the front of the plane for easy boarding and exit. This ‘Special Assistance’ was invaluable as I always had somewhere to sit whilst waiting. On arrival in Rhodes, the weather was 28° during the day and the temperature dropped down to around 18°- 20° at night. With air-conditioning in the hotel our stay was very pleasant, especially for me as the heat increases my fatigue. Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
  11. 11. We chose the Rhodes Island Ixia resort and stayed at the Sheraton on a half board basis, which included a buffet dinner every evening. Given it is a very large international hotel with up to 2,000 guests and at least 800 staff, it was very quiet and the excellent service was unobtrusive. The hotel was perfect for my needs as, having to use a walking stick often and being very easily fatigued, it was useful that the hotel had wide corridors and lift service to all floors. The hotel had good swimming pools, balconies with excellent views if you wished to just sit and read during the day, or in the evening you could sit in the Lounge Bar on the 6th floor to watch a spectacular sunset whilst having a coffee after dinner - we could even see towards Marmaris in Turkey which was just across the coast from the terrace! Holiday tips from Asian MS Members I had a fantastically positive experience with Turkish Airlines and a company called PortClinic. The person who was looking after all the disabled/wheelchair-using passengers made sure he knew where everyone was going and whether they had a connecting flight. His English was good and he was very polite and courteous. -Karim I often holiday alone, I have met some really nice and helpful people who are happy to help me when I am without my walking aid, kindness of strangers as it were. -Samir Check with your GP about travel vaccines you may need and don't forget to remind them if you are on any drugs for your MS, as this may affect the type of vaccine you can or cannot have. For example if you're on Tysabri or Gilenya you must avoid live vaccines. -Asian MS Member As I didn’t wish to join organised tours, the hotel/travel agent representative was able to organise taxi tours to suit our timings. We visited many places of interest including one If you are thinking about going on holiday but have of the World’s Seven Ancient Wonders; the accessibility needs, there is a wealth of information and support available online to help you plan your Colossus of Rhodes on the outskirts of Rhodes trip. A good source of information is: Town. The town is divided into two sections: the Old Town being the medieval part with many museums and cafes; the New Town being the Even if you don’t have accessibility needs, travelling modern side, which was great for gift shopping when you have MS does often need some extra and had good cafes and restaurants too. planning. If you are flying with medications, make We had a marvelous holiday in Rhodes and would certainly recommend it to our friends and family, whether you have someone with MS in your party or not! Page 11 sure you inform the airline beforehand and carry a letter from your neurologist/MS nurse. A bit of forward planning will help to make your holiday hassle-free! Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
  12. 12. Thinking about a supported short break? The MS Society has developed new partnerships abroad. Following an assessment, clients with Active Assistance and The Good Care Group to purchase a period of care, from a minimum of two enable people with MS, their carers and families to nights to as long as is required. access short periods of respite care at home, or while on holiday in the UK or abroad. Partnership with The Good Care Group Available to residents in England and Scotland Both services are new, specialist services for people who are on a live-in care basis at home, or for use with MS. The organisations’ professional carers as a holiday care service for short breaks in the have received training from the MS Society to UK or abroad. ensure they have a true understanding of the condition and can provide the best possible support. Following an assessment, an initial period of one week’s care must be purchased, but can be split For holiday breaks, please note that accommodation and taken as two periods over a six month period and other arrangements will need to be made (minimum of three nights each). For more separately. Active Assistance and The Good Care information and a brochure please contact The Group only provide the care element of the break. Good Care Group. The two partnerships are working slightly differently Financial support for short breaks and cover people living in different areas of the UK. The MS Society’s Short Breaks and Please contact the organisations directly for more information and to discuss specific needs. Activities Fund can provide grants towards the costs associated with short breaks and holidays with care. To find Partnership with Active Assistance Available to residents in England and Wales who are on a live-in care basis at home, or for use as a holiday care service for short breaks in the UK or Page 12 out more and to apply, please contact the Grants Team on 020 8438 0700 or Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
  13. 13. NEWS AND HAPPENINGS Carers Week - A big success! The MS Society has said that this year’s Carers Week was the biggest and best yet – and they want to say a big thank you to everyone who supported the campaign. The MS Society has been a proud partner of Carers Week for a number of years, as it gives it a valuable opportunity to demonstrate its commitment to supporting the families and carers who support people living with MS. Some key outcomes from this year’s national campaign included:  over 2,600 organisations registered with Carers Support Asian MS this Christmas The new Christmas catalogue for the MS Society was launched in August and you can help to raise funds for Asian MS by quoting the offer code CMA401 when you make any purchases. This means that Asian MS will receive up to 25% of the value of the purchase, plus postage and packaging will be FREE on orders of £25 or over if you quote that code . The code has to be clearly written on the  over 10,000 local events took place across the UK catalogue order form, entered at the online check-out via the MS  millions of people were reached through Facebook Society website, or quoted and Twitter over the telephone, and it  media coverage included newspaper, magazine, must be used at the time of radio and television features in all four nations – placing the order. The code is already live some of which carried MS case studies and is valid until 31 January 2014. Week  MS carers challenged the Minister for Care and Support, Norman Lamb MP, at a speed networking event in Westminster A number of MS Society branches also got involved in Carers Week by running social meet-ups for carers, information stands and collection days, and joining up with local carers services at exhibitions and other local events. Page 13 If you are a member of the MS Society, you will receive a catalogue in the post. Otherwise, you can access it online via There is a range of gifts available, from cards to wrapping paper to jewellery. So please help us to continue raising funds and supporting MS causes when you’re thinking about your purchases for the festive season! Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
  14. 14. NEWS AND HAPPENINGS Plans for MS Life 2014 are already in the works MS Life is the largest, free lifestyle and information event on the MS Society's calendar and, as in previous years, Asian MS will be there to raise awareness about the support group, meet our members and hopefully attract new ones! In 2014, people from all areas of the “World of MS” will be flocking to Manchester Central Convention Complex to attend this fantastic event. It will take place from 10am on Saturday 26th April until 5pm on Sunday 27th April. There was also an MS Spa, the Wheel & Walk fundraising event (in which Asian MS supporters participated) and live cookery demonstrations. If you are able to help out on the Asian MS stand at all, then please contact Vinnie Kochhar on You don’t need to be a committee member to help out – last year we were lucky to have Asian MS supporters from all over helping us and in 2014 we will need just as much help! There were 2,500 attendees at MS Life 2012, with people coming from across the UK and Europe. It was the largest event of its kind in the world. There were 45 workshops and Asian MS stand at MS Life 2012 seven research talks, with 52 hours worth of You can see more about the event at: information delivered during the MS speaking at the events/2011/11/ms-life-2014 course of the Support Groups Workshop weekend. Asian There will be grants available from the MS MS played a very successful part in the Society for those that need financial help to Support Groups workshop and we were also attend. More information will be included in one of the 90 stands that were part of the forthcoming newsletters. exhibition. Page 14 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
  15. 15. NEWS AND HAPPENINGS MS NATIONAL CENTRE New research worth OPEN DAY £2.1million unveiled by The MS National Centre Open Day in London is MS Society a great opportunity for you to meet MS Society staff and other volunteers, hear about activities happening across the charity and discuss the issues that affect you. This year’s Open Day will be on Tuesday 5th November. The MS Society has announced funding for 18 research projects, raising the organisation’s total expenditure on new research this year to £2.1 million. The projects cover MS research services, symptom relief, potential cures and causes. By attending this event you’ll hear from senior The priority area is still progressive MS, with staff about the MS Society’s work and the latest exciting projects looking into topics such as how developments in MS research, and have time to people adjust to secondary progressive and primary meet other volunteers from across the UK. progressive MS and whether there is a link between infections and progression. Another focus is myelin, After a buffet lunch we’ll also give you the with projects investigating new ways for myelin opportunity to meet staff from different repair and myelin damage measurement. Other departments, hear updates on their areas of work research looks at cognitive change measurement, and ask questions on any issues affecting you. falls management intervention and whether exercise can help with fatigue. New volunteers should find this open day particularly beneficial but the invitation is extended to all MS Society volunteers. If you’d like to attend, please contact the volunteering team for a booking form: To find out more and see a full list of the new projects, with further details, visit: Page 15 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
  16. 16. NEWS AND HAPPENINGS Groundbreaking clinical trial for secondary progressive MS clinical measures to test for signs of MS disease progression; it is hoped that the drugs will work by protecting nerves from damage. A new phase 2 clinical trial called MS-SMART will begin in the autumn, investigating whether three Recruitment for the trial will start towards the end of potential treatments could slow or halt disability the year. If you would like more information about the progression in people with secondary progressive MS. trial, visit the MS-SMART website MS-SMART is a three-year trial that will test the safety and effectiveness of three different drugs - amiloride, ibudilast and riluzole – against a ‘dummy’ treatment in 440 people with secondary progressive MS. The three drugs are already licensed for other conditions (amiloride is licensed to treat heart disease, ibudilast to treat asthma in Japan and riluzole is licensed for motor neurone disease) so researchers know the safety profile of the treatments, ASIAN MS STILL NEEDS YOUR HELP! As we expand, Asian MS is in desperate need of more volunteers to help us to continue offering our support and services. Communication with our membership is of utmost importance to us and we are still looking to appoint a Membership Secretary and a Website Editor. potentially taking years off the research process. Dr Jeremy Chataway at UCL (University College London) and Professor Siddharthan Chandran at The University of Edinburgh, will lead the trial, which has been part-funded by the MS Society, along with a number of other organisations. Asian MS has made a donation too. Up to 15 trial sites will be identified in cities and towns across England and Scotland. Participants will be The Membership Secretary would be mainly responsible for dealing with correspondence and membership issues (such as maintaining the membership database). The Website Editor would be in charge of updating the Asian MS website, particularly uploading Asian MS news. Please contact if you are interested in either post and would like further information. Emails should be addressed to Vinnie Kochhar. monitored for two years using MRI scans and other Page 16 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
  17. 17. DATES FOR YOUR DIARY MS Society Awards 2013 The MS Society Awards recognise achievements made by people in the world of MS, whether they have contributed towards research, they have been an outstanding fundraiser, whether they have been an inspiration to MS Society’s 60th Anniversary! In 2013, the MS Society turns 60 years old. It was founded by Mary and Richard Cave to support and empower people affected by MS. The MS Society will be celebrating the achievements of everyone involved in the organisation and will be looking forward to an exciting future. Rather than take resources away from vital research and support, celebrations will be integrated into existing events. MS Week, annual meetings, national fundraising events and the MS Awards will all have extra “60th sparkle.” If you have any ideas about how to make fundraising events that extra bit special then please email them to: There will be lots of ways to get involved and to raise funds to help support the MS Society. You can also use the opportunity to help raise awareness of MS within the Asian community and fund raise for Asian MS! If you need help to set up any events, then please contact Mukesh Jethwa, the Fundraising Officer for Asian MS, at others or whether they have helped to raise awareness in the media. There are 10 categories this year and the awards ceremony will take place on 17th October 2013 at the Dorchester Hotel in London. Asian MS has two members who have been shortlisted for an award – Priyal Raja (MS Young Person of the Year category) and Trishna Bharadia (MS Volunteer of the Year category). More about both of them can be found on p.4-6. There will be a report on the awards ceremony in the next edition of the newsletter! MS Life 2014 MS Life 2014 will take place at the Manchester Central Convention Complex from 10am on 26th April 2014 until 5pm on 27th April. Booking for MS Life 2014 will open in October 2013. For more information, suggestions or to be kept up to date with MS Life developments please email Please also see p.14 for more details. Please keep your eyes peeled for information about an upcoming social that we will be planning in London. Many of you have been asking when our next event will be and we’d like to reassure you that it is being planned imminently! Page 17 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
  18. 18. A CHANCE TO GET INVOLVED HELP THE MS SOCIETY TO WIN POTENTIAL FUNDING OF £50k! The “Vote that Counts” is a free campaign that is being run in partnership with The Daily Mirror, People’s Postcode Trust, and People’s Postcode Lottery. There is a funding pot of £100,000 available and nine THE MS REGISTER – Have you signed up yet? The MS Register is a ground-breaking study designed to increase our understanding of living with MS in the UK. You can take part by completing a series of simple online questionnaires. You will then be reminded every three months to record any changes in your condition in the lifestyle, symptoms and medication sections. If you are over the age of 18 and living in the UK, with a confirmed diagnosis of MS made by a consultant neurologist, you are eligible to take part in this study. charities are competing to win a share. The top There are also a small number of pilot sites that are prize is £50,000, while four runners-up will each collecting clinical information: Royal Victoria receive £10,000. In addition, once you have voted, Hospital, Belfast; Western General Hospital, Edinburgh; St. Mary’s Hospital, London; Queen’s you can nominate a local charity to potentially win Medical Centre, Nottingham; and Morriston £10,000. It’s very simple – the charity with the Hospital, Swansea. most votes at the end of the campaign wins. st October 2013 and it Voting closes at 5pm on 21 won’t cost you a penny. Voting takes place online at: This is such a quick, simple and easy way of helping the MS Society to potentially receive a substantial amount of funding. So please visit the site, tell your friends, advertise on your social networking sites and help the MS Society to get one step closer to winning that top prize! Page 18 KEEP YOUR EYE OUT! The MS Society maintains a list of research studies and clinical trials that are currently recruiting participants. If you are interested please go to: k/ms-research/get-involvedin-research Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
  19. 19. A CHANCE TO GET INVOLVED Help your GP to understand Descriptor for MS more about MS Barts and the London School of Medicine Royal College of GPs and Dentistry are exploring what term (RCGP) in partnership should be used when describing someone with the MS Society is with MS on social media and in research offering an e-learning publications. module in MS for GPs who are working or foresee working at a specialist level. A short survey has been put together to gather views on possible terms that can be It is a three-hour module that should allow GPs used. The survey only consists of two to feel more confident about identifying and questions, so it does not take very long to recognising early signs of MS, and also helping fill in, and it is related to their public them to offer better support to their patients engagement activities and the blog that who are living with the condition. they run ( The survey is The module includes three 30 minute units available to complete by going to the focusing on: following link: • the role of GPs in diagnosing MS t/forms/d/1xEFx3k7s6ebM0PdzU6q8TbS • long term outlook and management Q4Axp12oU0X04q8D1yPg/viewform • psychological and social impact of MS on the patient and their carer(s) PSSST... HEARD ONLINE... Topics being discussed on the Asian MS Facebook Group include: How to deal with “naughty legs,” The implications of fasting when you have MS (in connection with Ramadan), The InspirAbility project, Stigma of MS in the UAE, How to cope in the heat and Going on holiday with MS. You can join the discussion at: For more information visit: or contact the MS Society’s education department for a flyer. 02103/ Page 19 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
  20. 20. A CHANCE TO GET INVOLVED EXPERT: Experience of a health information website evaluated in a research study Understanding more about hearing difficulties in people with MS This study, being conducted by the University of Manchester, looks into This study, being run by the University of possible hearing Oxford, aims to discover whether or not deficits in people with carers of people with MS consider information MS. A comparison will websites to be of use and how to best supply be made between the relevant information on the internet. Of results from people with MS and people with communication disorders, to particular interest is whether carers can feel determine whether communication disorders are more supported through online information linked to demyelination in the brain’s auditory being available. (hearing) system. Participants will need to complete various online questionnaires, taking around 10 minutes, and then look at a website that will be available for 2 weeks. Another set of questionnaires will then need to be filled out and then participants will be asked to attend an interview with a researcher. To be eligible, you must be over 18 years old, live in England, have access to the internet and an email address, and provide care for someone who has been diagnosed with MS. The study runs between June 2013 and May 2014. To find out more information, please contact Ally Naughten (EXPERT Trial Manager) at Page 20 Participants will undergo four short hearing assessments to determine whether their hearing is normal. Then, four electrodes will be fitted – one at the nape of the neck, one behind the ear and two on the forehead. It is painless and harmless. Participants will then have to lie still (or sleep) for 90 minutes whilst listening to some sounds in their right ear. Only one visit is required, which will last for up to 2.5 hours. To participate, you must be diagnosed with MS, be over 18 years old, have no other neurological problems and have normal hearing. The study is particularly looking to recruit people who have symptoms that include tremors/shaking, a lack of coordination, slurred speech, blurred vision and/or dizziness. The study runs from July 2013 until July 2014 and travel expenses can be reimbursed. To find out more, please contact Anna Terry at or on 0161-2753507. Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
  21. 21. A CHANCE TO GET INVOLVED Understanding more about interactions and identity in MS This study, being run by the University of Exeter, aims to discover how people with MS express and view their identity when communicating with people from different backgrounds. The study researchers want to see how people with MS view other people with disabilities, as well as themselves. The study will also look at peoples’ general health and wellbeing, and also their ability and willingness to access support. Participants will have to complete an online survey. It should take around 15 minutes to complete and involves rating various statements about interacting with different people, views about identity, general health and help-seeking behaviour. Anyone with MS who personally believes that they have a physical disability can participate, as long as they are also over 16 years old. The study runs from August 2013 until December 2013. To find out more information please contact Stuart Read at Page 21 MS and Motherhood This study is being conducted by the University of Hull and looks to improve the understanding of women with MS and their decision-making process when deciding whether or not to have a child. Participants will be interviewed, which will be audio recorded. It should last for around one hour. It will include questions about the decision-making process linked to having children or not, after being diagnosed with MS. Participants must be female, over 18 years old, have a diagnosis of MS, have made a decision to have/not have children postdiagnosis, and must be able to speak English. The study runs from June 2013 until October 2013 and is being undertaken in the Derbyshire, Lincolnshire, Doncaster, York and Hull regions. It can take place at a venue that the participant chooses i.e. their home or at the University of Hull. To find out more, please contact Hannah Marklew at or on 07847078508. Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
  22. 22. Top 10 MS Research Priorities Identified The MS Society and the James Lind Alliance have partnered to identify the top ten research questions that matter the most to those impacted by MS and healthcare professionals. There was a one-year period of collecting the views of a wide range of people, and more than 1,000 questions were submitted. The top ten were: 1. Which treatments are effective to slow, stop or reverse the accumulation of disability associated with MS? 2. How can MS be prevented? 3. Which treatments are effective for fatigue in people with MS? 4. How can people with MS be best supported to self-manage their condition? 5. Does early treatment with aggressive disease modifying drugs improve the prognosis for people with MS? 6. Is Vitamin D supplementation an effective disease modifying treatment for MS? 7. Which treatments are effective to improve mobility for people with MS? 8. Which treatments are effective to improve cognition in people with MS? 9. Which treatments are effective for pain in people with MS? 10. Is physiotherapy effective in reducing disability in people with MS? Now the MS Society will work to make sure these priorities are addressed. They will complement the organisation’s existing research strategy. For more information please visit: Page 22 Leading researchers face questions from people with MS The “MS Reports” is’s new project, where people from the online community interview leading MS researchers. The MSers have nothing more than their smart phones to film the interviews, which helps to develop a trusted platform for discussions and exchanging evidence-based research on MS and wider research issues. You can watch the videos by going to: is interested to hear what you think too, so email them at: is a social network run by its users where young MSers meet, share experiences, and support each other Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
  23. 23. Recipe from Lubna Chicken Kebabs Ingredients 1lb/500g chicken mince 1 tsp red chilli powder 1 medium onion - chopped 1 tsp kebab mix (optional - this can be found in most Asian grocery shops) 1 tsp garlic paste 1 tsp ginger paste 2oz/50g fresh breadcrumbs 1 tsp ground cumin 2 green chillies - chopped 1 tsp ground coriander 2 tblsp coarsely chopped coriander leaves 1 tsp salt Sunflower oil (for shaping kebabs) Lubna, an Asian MS member since 2005, has been kindly sharing her delicious recipes with Asian MS. She was diagnosed with MS following an MRI scan in 1991, with symptoms having included optic neuritis and fatigue. While she feels that she’s slowed down a great deal as she’s grown older, she is still able-bodied and considers herself to be very lucky. She joined Asian MS after she met Shiv (Asian MS Treasurer) at MS National Centre. He was the first Asian person that she’d met who also had MS. She has previously served on the Asian MS committee. Method: 1) Put the chicken, onion, garlic and ginger paste along with the green chillies, coriander leaves, salt and all the dry spices into a food processor and combine all the ingredients until it is mixed together thoroughly. 2) Lightly oil the palm of your hands and divide the mixture into 12 and form into burger shapes. Would you be interested in becoming a regional contact for Asian MS? We’d love to hear from you as we want to build a network of support for Asian MSers around the country. Please contact us at for further information. 3) Fry or grill the kebabs for 5 minutes on either side until crispy on the outside and cooked through. Page 23 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
  24. 24. General Information Financial assistance Grants fund name change From September 2013, the National Grants Fund (in England, Northern Ireland and Wales) will be called the Individual Support Grants Fund. The key elements of the fund remain the same. Applications should, in PUBLICATIONS For a list of all the MS Society’s key publications showing the latest editions and revisions visit the website: or call 0300 1000 801. the first instance, be sent to an applicant’s local branch To contact the MS Society Information Team: Email for consideration. If the branch is or call 020 8438 0799 (weekdays 9amunable to fund the request in full, the application can 4pm) be sent to either the grants team at MS National Centre for applicants living in England, Northern Ireland and Wales; or the Grants Officer in Edinburgh for applicants living in Scotland. The funding criteria and upper limits remain the same. Updated application forms To incorporate the many changes to the benefits system across the UK, the Individual Support Grants fund and the Short Breaks & Activities Fund application forms have been updated Find out more from the Grants Team on 020 8438 0700 or or visit the grants pages on the website. If you live in Scotland, please call 0131 335 4050 or email Page 24 Emotional support The MS Helpline is available to give free and confidential advice and support to anyone affected by MS from 9am-9pm, Monday-Friday. The helpline number is freephone 0808 800 8000. Please specify if you would like to speak with someone from Asian MS and you will be directed to one of our support officers. *********************************** If you would like a copy of the MS Society’s latest MS booklet, which has been translated into 12 languages including Bengali, Farsi, Gujarati, Hindi, Punjabi & Urdu, please contact Saher Usmani on 0208 438 0856 or They are also available on USB stick for a small fee. *********************************** Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
  25. 25. LATEST RESEARCH & MS IN THE NEWS Jack Osbourne ‘Dancing With the Stars’ to Shine Light on Multiple Sclerosis – ABC News Exercise and disability: 'Now things hurt for the right reasons' Novartis Confirms Long Term Benefits of Gilenya in Multiple Sclerosis artis-confirms-long-term-benefits-ofgilenya-in-multiplesclerosis.aspx?type=ct Filmmaker documents his journey with MS ise-fitness-disability-multiple-sclerosis Stigma of multiple sclerosis is endangering lives in the r-documents-his-journey-with-msUAE 1.636642 of MS in UK multiple-sclerosis-is-endangering-lives-in-the-uae http://multiple-sclerosisFirstWord Lists: Leading MS products in 2012 and 2018 – is Biogen Idec building an unassailable dominance? valence-of-ms-in-uk.html Fatigue and exercise First Direct Measurement of Spinal Cord Myelin in Multiple http://multiple-sclerosisSclerosis gue-and25.htm?utm_source=feedburner&utm_medium=feed&utm_ exercise.html?utm_source=feedburn campaign=Feed%3A+sciencedaily%2Fhealth_medicine%2 er&utm_medium=email&utm_campa Fmedical_devices+%28ScienceDaily%3A+Medical+Device ign=Feed:+blogspot/WvYVL+%28Mu ltiple+Sclerosis+Research%29 s+News%29 Serious delays in diagnosis of Alzheimer’s, Parkinson’s and MS MS care changes reduce missed appointments Page 25 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
  26. 26. FUNDRAISING FOR ASIAN MS Where do the funds go? Asian MS is funded purely by donations, which are used for various purposes. They include grants for individuals to help them attend MSrelated events, contributions to research projects, and administration costs. The Amiloride and Phenytoin projects Asian MS has earmarked a £1,000 donation for the Amiloride and Phenytoin projects, both of which are drugs that are being tested in clinical trials for use in MS. Amiloride is a high blood pressure and congestive heart failure treatment that has been in use for over 30 years. It could also have a neuroprotective and myeloprotective effect. Phenytoin is an epilepsy drug that has been in use for over 60 years. It is being tested to see if it can protect the optic nerve in people with optic neuritis and, therefore, prevent nerve damage in MS. Asian MS are proud to announce that they now have the facilities to allow people to make donations in an easier and quicker way. Donations by credit card via the internet site How to make donations by text message : Send a text message to 70070 Remember to include the subject of the text: as AMSS89 and send it with the amount you wish to donate up to a maximum of £10 If you wish to donate £10 your message would read AMSS89 £10 If you wish to donate £5 your message would read AMSS89 £5 and so on. You may donate with any number from £1-5, and the money will go directly to the MS Society, which will transfer the cash generated to Asian MS. You can also raise funds every time you shop through EasyFundraising: We thank you kindly in advance for your support Page 26 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070
  27. 27. Useful Information General and Membership Enquiries: Website: Facebook: Twitter: Saher Usmani, MS Society Support Groups Officer (please contact for hard copies of this newsletter and MS information booklets in different languages): 0208 438 0856 or Asian MS is a national support group for Asians with MS, their carers, friends and family. We seek to increase awareness and dispel ignorance of MS in the Asian community, as well as put fun and dignity into the lives of Asians with MS and their carers. We also raise money for people affected by MS within the Asian community. We produce online and printed information in various languages and offer an interpreting service. Vinnie Kochhar – Chair Shiv - Treasurer Trishna – Newsletter Editor Mukesh - Fundraising Officer Rani - Publicity Officer/Support Officer MS Society Website: MS Society Helpline: 0808 800 8000 Asian MS JustGiving: MS Register: MS Trust (charity that provides information about MS): MS Therapy Centres: (an online community for younger MS’ers): MS Research Blog (run by Barts & The London Neuroimmunology Group): Page 27 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070