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ISSUE 1, 2014
IN THIS ISSUE....... All the usual useful numbers and contacts Information and support about the new PIP
assessments
TREATING MS We put the spotlight on the factors that influence how people choose their medication and Kanti tells us about the benefits of Ayurveda. FUNDRAISING NEWS Who has been raising funds for Asian MS? Read all about it here! Plus if you would like to donate, we tell you all the ways in which you can do so and where your money goes. And from baking a cake to
PS. As always, please do pass this newsletter on to anyone who may be interested
Redbridge branch of the MS Society and coffee and chat with WAMS, a womenfocused support group.
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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
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
http://twitter.com/AsianswithMS http://www.facebook.com/AsiansWithMS
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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
DO YOU KNOW SOMEONE WHO DESERVES RECOGNITION? If you know someone who has made a particularly remarkable contribution to the lives of people with MS, then you can consider nominating them for an MS Society Award in 2014. You can nominate by visiting: http://www.mssociety.org.uk/aboutus/ms-awards where you will find information about the different categories. DEADLINE for nominations is 16th May 2014. If you would like to nominate an Asian MS member, then please contact us if you need guidance in filling out the nomination form!
PSSST... HEARD ONLINE...
Deadline for the next edition of the newsletter is 31st May 2014. Please email us your stories, links, photos and news!
Topics being discussed on the Asian MS Facebook Group* include: free NHS prescriptions, PML, foods that cause/eliminate inflammation, does gabapentin make you groggy?, and MS stories in the news. You can join the discussion at:
https://www.facebook.com/groups/2 416402103/
(*You need to be a Facebook member to access this group)
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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
OPENING DOORS
Equally important is that these items will help people who have disabilities due to conditions other than MS too. For example, for many people with MS balance is a typical problem. If you have balance issues then the chances are that you find walking difficult. You might have foot-drop or a hyperextending knee, or you may not be able to walk very far. Patrick writes articles about products that he has Patrick Burke, founder of Aid4Disabled discovered, such as the Patrick wanted to create something that filled a gap in MUSmate he uses for his own foot-drop, and why he finds them useful. In almost every case you can the market, as he felt that there was no central site that identifies products that would make life easier for then buy them for yourself. an active but disabled person; and so many people There are articles on items to help make your life with MS fall into this category. Nearly all of these easier in the garden or in the house. Patrick wants things are affordable and make the difficult or near everyone to be as independent as possible. Use it impossible possible. or lose it is such an important attitude for him. He sees his life is slowly getting to be more and more The items Patrick writes about are almost never difficult but he is as stubborn as they come and will advertised. He has either seen them in a shop or do his utmost not to surrender to MS. hears about them through word-of-mouth. Are you an MSer who has disabilities but still leads an active life? Do you sometimes wish there was a one-stop shop that you could go to in order to look for products that may make your life just that little bit easier? Well look no further than Aid4Disabled. Located at www.aid4disabled.com, it is an information site for people with MS. It is run by Patrick Burke, who has had MS since 1979. In January 2012, his MS led him to take medical retirement and he established this website.
EDITORS NOTE: If you have accessibility needs, Makin' Tracks is a website that offers inspirational tours for wheelchair users who have a real appetite for travelling. It offers tours in various parts of Europe, with all your accessibility needs taken care of. So if you would like to travel and youre looking for something which takes the hassle out of travelling, then take a look at their website: http://makintracks.eu/index.htm
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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
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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
During the fourth week I had full body Navarakizhi, which is the application of warm pouches of milk and rice. The fifth week is the detox program, with three small enemas and two large ones in the therapy room. In 2012 the Chief Medical Officer felt my pulse, looked at my tongue and finger nails and told me that that my MS had stopped progressing. This was confirmed by an MRI scan in August 2013, which showed no disease progression. It is difficult to keep up with the Ayurvedic regime all the time, as one needs to change a whole lifestyle. The process is slow, however, in my experience it gives one a better and normal life. You can find out more about Ayurveda on Wikipedia and the NCCAM website
Always make sure you check out the qualifications and credentials of any complementary/alternative therapy practitioner! For more information go to: http://www.mssociety.org.uk/sites/def ault/files/Documents/Essentials/Comp lementary-and-alternative-medicineMay-12.pdf If you have had a good experience with complementary/alternative medicine that you would like to share, please get in touch with us here at Asian MS!
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
WHERE: Manchester Central Convention Complex WHEN: 10am Saturday 26th April 2014 - 5pm Sunday 27th April 2014
TO BOOK TICKETS PLEASE GO TO: http://www.mssociety.org.uk/ms-events/2011/11/ms-life-2014
ASIAN MS will have a stand at MS Life so please do come and say hello! We will have information available about volunteering opportunities, information booklets in different Asian languages and committee members and volunteers will be on hand to answer any questions.
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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
If you are interested in fundraising for Asian MS, please contact our fundraising officer, Mukesh Jethwa on asianms@mssociety.org.uk
This is a fantastic way of raising funds and raising awareness about MS, with nearly 50% of the people that registered for the event in 2013 being new to the MS
We rely on donations to keep going so if you Society. know of someone wanting to raise money for charity, why not suggest that they fundraise for Asian MS?
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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
"Marvellous Mums"
Women Against MS (WAMS) - London is looking for stories as part of its Marvellous Mums Campaign. The group is putting together a book of stories about inspirational women that are living with or have lived with MS. All funds raised from book purchases will go to the WAMS support group. If you have a story about a Marvellous Mum or know anyone that might, please email WAMS - London at: info@womenagainstms.org.uk or call 020 8542 1712/07848 105 191
WAMS - London (Women Against MS) evidence gathered will be from a wide range of people is a Support Group that is part of the MS and will give the clearest picture of how PIP is working, Society and is specifically for women. It holds Meeting Sisters coffee and chat and any problems that need to be addressed. If youve meet-ups, with recent locations having made a new claim or been reassessed for PIP, you included Colliers Wood and Wandsworth. For more information please contact can fill in the survey at them on the details above, find them on http://www.surveymonkey.com/s/DBC_PIP_survey Twitter at https://twitter.com/WAMSLondon or For more information you can contact the MS Societys visit their Facebook page (you need to be a member of Facebook to view the Campaigns team on 020 8438 0700 or at page): campaigns@mssociety.org.uk and click here for https://www.facebook.com/pages/Wo information on two MS Society publications that deal men-Against-MS-LondonUK/147356341995217?fref=ts with filling in PIP forms.
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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
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
CLINICAL TRIALS Gilenya (fingolimod) Pregnancy Registry Trial: Aims to provide safety information on the effects of fingolimod on pregnancy and the health and development of the foetus and infant. Suitable for women with MS who are currently pregnant and who took fingolimod during the pregnancy or up to 8 weeks before their last menstrual period. Preventing autoimmunity after alemtuzumab treatment of MS: Aims to try to prevent side effects of alemtuzumab (Campath/Lemtrada), namely autoimmunity, through the use of a drug called Kepivance (Palifermin), which alters the way in which the immune system grows back after someone is treated with alemtuzumab.
Pain Experience in MS (PEMS), Kings College London: Looking into the different types of pain experienced by people with MS via a series of questionnaires. Participants will be offered a 5 Marks & Spencers voucher as a thank you for their time. The Impact of Using Assistive Technology in MS, Bangor University: Exploring the relationship between assistive technology and wellbeing via a series of questionnaires over the course of 12 months. Assistive technology is any equipment or device that people use to gain better independence and can include hoists, memory aids, dressing aids, motorised wheelchairs and canes. Hearing difficulties in people with MS, University of Manchester: Seeks to further the understanding of hearing difficulties in people with MS. It will involve hearing tests at a University of Manchester building. Travel expenses can be reimbursed. The MS Register is a groundbreaking study designed to increase our understanding of living with MS in the UK. For more information go to: http://www.ukmsregister.org
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Help us to raise awareness about MS! MS Week is 28th April to 4th May 2014. The MS Societys campaign this year will build on 2013s Stop the Lottery campaign, which highlights issues faced by people with MS and healthcare professionals when it comes to treatment access. Keep your eye out on the MS Society website for ways to get involved. CARERS WEEK 2014 The MS Society is again supporting Carers Week, which runs from 9th to 15th June 2014. The aim is to reach out to the thousands of carers missing out on support and services. If you would like to find out more and how you can get involved, please visit: www.carersweek.org
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
The Marjorie Collins Centre 237 Grove Road Chadwell Heath There are regular visits from a chiropodist and a Romford manicurist, while a hairdresser visits weekly. Other RM6 4XF Tel : 0208 983 8178 activities include visits from the Mobile Library, Fax : 0208 983 8148 occasional evening entertainment events like quiz Email : redbridgeoffice@talktalkbusiness.net nights, a card-making group, and wine-andWebsite: http://www.msredbridge.org/ cheese parties once a month in the evening. Open from 9am Monday, Tuesday and Thursday (except bank holidays).
Do you run/attend a local meet-up or do you think your local branch would be of interest to Asian MS members and/or our newsletter readers? If so, please get in touch to find out about how we can help you to spread the word!
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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
-Now add 220ml/8 fl oz/1 cup of water and bring to a boil, stirring occasionally. Cover with a lid, reduce the heat to low and cook for 40-45 minutes or until the chops are tender. -Uncover the pan and finally turn up the heat to reduce the gravy to a rich, thick sauce. Add the chopped green coriander, stir, and serve either with naan or rice.
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 shes slowed down a great deal as shes 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 shed met who also had MS. She has previously served on the Asian MS committee.
Would you be interested in becoming a regional contact for Asian MS? Wed love to hear from you as we want to build a network of support for Asian MSers around the country. Please contact us at asianms@mssociety.org.uk for further information.
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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
MS Society Information
PIP two new resources available
PUBLICATIONS For a list of all the MS Societys key ~For people making a new claim, or being publications showing the latest editions and revisions visit the website: reassessed www.mssociety.org.uk/msresources/key-publications or call 0300 1000 801. Claiming Personal Independence Payment (PIP) (First edition, October 2013). This 52 page booklet has information about claiming PIP, the benefit that has replaced Disability Living Allowance (DLA). It includes a question-by-question guide to filling in the How your disability affects you form and an insert listing all the descriptors used by the assessors. To contact the MS Society Information Team: Email infoteam@mssociety.org.uk or call 020 8438 0799 (weekdays 9am4pm) 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. *********************************** Some of the MS Societys information booklets have been translated into Bengali, Farsi, Gujarati, Hindi, Punjabi & Urdu, as well as other languages. Please contact Saher Usmani on 0208 438 0856 or susmani@mssociety.org.uk if you would like more information They are also available on USB stick for a small fee. ***********************************
Changing from Disability Living Allowance (DLA) to Personal Independence Payment (PIP) (October 2013). A four page factsheet that explains the process of switching over from DLA to PIP.
Both of these resources are available to download or to order. Visit the MS Societys online shop at: http://shop.mssociety.org.uk
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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
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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
Asian MS are proud to announce that they now have the facilities to allow people to make donations in an easier and quicker way.
You can also raise funds every time you shop through EasyFundraising:
http://www.easyfundraising.org.uk/causes/asianms