New from the MS Trust
Order form For a full list of publications visit www.mstrust.org.uk/pubs
DVDs Move it for MS – a DVD of exercises for people with MS (£1) Also visit the Exercises for people with MS pages at www.mstrust.org.uk/exercises
Books At work with MS Disease modifying drug therapy - NEW EDITION Living with fatigue - REVISED EDITION MS and me - a self-management guide to living with MS MS explained MS what does it mean for me? Primary progressive MS exposed Spasticity triggers Also visit the Posture pages at www.mstrust.org.uk/posture
Factsheets Regularly updated, we now have more than 20 titles available including Bladder problems Bowel problems Cognition Pain Sativex Vitamin D
New posture resources Poor posture is a common problem in the general population. Keeping a good posture can be more challenging for people with MS due to symptoms such as weakness, pain and fatigue. Simple changes that can be incorporated into everyday activities can help people achieve and maintain better posture. A new set of web pages, written by MS specialist physiotherapist Helen Conyers, explains what posture is all about, why good posture is so important and includes suggestions to improve posture in everyday situations. The new pages compliment our earlier book Are you sitting comfortably..?, a self help guide to good posture for people who spend most of their day sitting. Both titles can be read or downloaded at www.mstrust.org.uk/posture
Disease modifying drug therapy new edition
Chatroom transcript Secondary progressive MS - managing the transition
Publication leaflet The full list of titles available from the MS Trust All items are free unless stated, but if you would like to make a donation towards our costs, we would be very grateful
I enclose a cheque payable to the MS Trust I want the MS Trust to treat this donation and all donations I have made for the four years prior to this year and all donations I make from the date of this declaration until I notify you otherwise, as Gift Aid donations. Signed
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I confirm that I will pay an amount of Income Tax and/or Capital Gains Tax in each tax year (6th April to 5th April) that is at least equal to the amount of tax that all the charities or CASCs that I donate to will reclaim on my gifts for that tax year. I understand that other taxes such as VAT and Council Tax do not qualify. I understand the charity will reclaim 28p of tax on every £1 that I gave up to 5 April 2008 and will reclaim 25p of tax on every £1 that I give on or after 6 April 2008. Please notify us if you change your name or address.
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Postcode Telephone number A copy of the MS Trust’s data protection policy is available on request Return to: MS Trust, Spirella Building, Letchworth Garden City, Herts, SG6 4ET
The new edition of our book on disease modifying drugs provides reliable and unbiased information on the treatment options that are available. The book looks at the benefits and the risks of the beta interferon drugs, glatiramer acetate, natalizumab and fingolimod. This edition includes a section of tips and questions to ask your neurologist or MS nurse when discussing decisions about starting or switching treatment. The online version of the book will be reviewed and updated as new information becomes available www.mstrust.org.uk/dmts
Welcome to the summer edition of Open Door
Neuropathic pain
6
Sport and activity
10
Travel and holidays
12
MS recently hit the headlines with the news of Jack Osborne being diagnosed. It is sad for Jack and difficult for his family, but it is also a shame that a ‘celebrity’ connection has to be made before the media pay any attention to what it is like for someone to learn to live with multiple sclerosis. However, despite some of the more sensational headlines, most coverage did aim to get the facts right about MS and hopefully by raising awareness, some good will have come out of this difficult personal situation. We have recently completed our own research project into the information needs of people newly diagnosed and thanks to all of you who volunteered to take part. One of the things that comes through the study is that there is no typical response to a diagnosis of MS and people take time to come to terms with it and work out what they want to know. This is where our Information Team can help - whether it is via our website, email, or telephone they can provide the appropriate information when it is needed, rather than all at once. A full report on the study will appear in the next edition of Open Door. Thank you also to all of those people who responded to our recent Radio 4 appeal. At the time of writing it has raised around £12,000 which at a cost of £5 p.a. is enough to send Open Door to most of the 2,500 people newly diagnosed with MS each year. Best wishes and thank you for all your support
Chatroom transcript The transcript of our chatroom Secondary progressive MS - managing the transition is now available. The conversation covered a range of topics including ways of coping with the transition, the negative effects of some of the words used when describing this type of MS, and symptoms that affected people, such as pain and spasticity. To read the transcript online visit www.mstrust.org.uk/chat
Multiple Sclerosis Trust Spirella Building, Bridge Road, Letchworth Garden City, Hertfordshire SG6 4ET T 01462 476700 F 01462 476710 E info@mstrust.org.uk www.mstrust.org.uk Registered charity no. 1088353
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Inside this issue...
August 2012
www.mstrust.org.uk
Pam Macfarlane Chief Executive
Also inside:
MS Trust Christmas card offer We know some of you like to prepare for Christmas well in advance, so we have enclosed our 2012 Christmas card brochure. We are offering free post and packing until 15 September; you can order now through the brochure or online www.mstrust.org.uk/christmas
www.mstrust.org.uk
Freephone: 0800 032 3839
Value of MS nurses
2
News
3
Research update
4
Remyelination in MS
8
Supporting the MS Trust
14
New from the MS Trust
16