May 2010 Open door

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Information Service news

Order form For a full list of publications visit www.mstrust.org.uk/publications or order the Publication Leaflet

New factsheets Vitamin D

DVDs Move it for MS – a DVD of exercises for people with MS (£1) MS together

With increasing interest in the role of vitamin D both in the onset of multiple sclerosis and as a treatment, this factsheet covers some of the recent research.

Books At work with MS Living with fatigue MS and me - a self-management guide to living with MS NEW MS explained MS: what does it mean for me? Sexuality and MS: a guide for women Talking with your kids about MS NEW Kids’ guide to MS - for children aged 6-10 Young person’s guide to MS - for people aged 10-16

MS factsheets Regularly updated, we now have more than 20 titles available Bowel problems Oral drugs - cladribine / fingolimod Clinically isolated syndrome NEW Depression NEW Vitamin D NEW

Chatroom transcripts Fatigue transcript NEW

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

Depression Depression is an under-recognised and undertreated symptom in people with MS where half of all those diagnosed will be medically depressed at some time in the illness. This factsheet looks at the causes of depression and how it can be managed. Clinically isolated syndrome A first episode of neurological symptoms can be an indicator of what may turn out to be multiple sclerosis. In the absence of a second episode or of a definite diagnosis, this is referred to as clinically isolated syndrome (CIS). This new factsheet examines the typical presentations of CIS, different assessments that might be recommended, treatments for CIS and starting disease modifying drug therapy, and risk factors associated with CIS converting to MS. These factsheets and other MS Trust publications can also be downloaded from our website or read online at www.mstrust.org.uk/publications

I enclose a cheque payable to the MS Trust If you Gift Aid your donation, we can reclaim the tax! I would like 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

Date

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You must pay an amount of Income Tax and/or Capital Gains Tax in each tax year (6 April 2010 to 5 April 2011) at least equal to the tax that the MS Trust will claim from HM Revenue and Customs on your Gift Aid donation(s) for that tax year. Please notify us if you change your name or address.

Sexuality and MS - a guide for men Sexual problems are rarely discussed symptoms of MS and many men are unaware of treatments that might be available and how to discuss what they are experiencing with their partner or with a health professional. Having published Sexuality and MS - a guide for women in 2007, the MS Trust is about to start work on an equivalent resource for men. To help us make the contents and design of the resource as helpful as possible, we are asking men to complete a brief, anonymous survey about the problems they have encountered and how the new resource might be best presented.

Name Job title (if health professional) Address

Postcode Telephone number A copy of the MS Trust’s data protection policy is available on request

To request a survey, either write to the address below or visit www.mstrust.org.uk/men

Return to: MS Trust, Spirella Building, Letchworth Garden City, Herts, SG6 4ET

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

May 2010

Inside this issue...

Welcome to the Spring Edition of Open Door

Yoga

8

The arrival of this Open Door should coincide with the General Election results and it will be interesting to see what challenges lie ahead for us all, as tackling the public finances deficit becomes a reality rather than a topic for debate. A recent survey via the MS Trust website asked 'what is your most valued source of support for your MS?' Along with close family, MS specialist nurses were top of the list. In 2001 a unique research project funded by the MS Trust at South Bank University London, demonstrated clearly the benefit of MS specialist nurses both to people with MS and in financial terms to the NHS. The research showed that having an MS specialist nurse in post could generate a net saving of over £64,000 in a year, purely from a reduction in admissions to hospital.

Bowel management

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Gliding down

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The MS Trust has campaigned since 1996 for MS specialist nurses. The number has grown from three to around 220, but this is still some 150 short of the number needed to support 100,000 people with MS. Yet once again MS nurse posts are under threat, easy targets for NHS cutbacks where short term gains outweigh long term benefits. MS Awareness week may have just ended, but raising awareness of the challenges of living with MS does not go away. MS nurses are a vital part of the support system, therefore the MS Trust will continue to campaign for MS nurses and support those in post, through information and education and by promoting the value of their role wherever possible. Very best wishes

Pam Macfarlane Chief Executive

Also inside: CCSVI

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News

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Research news

4 6

I Talking with your kids about MS

MS and me self-management

I Exercises for people with MS

MS Tissue Bank

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Read more about these on pages 6 and 13

New from MS Trust

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New from the MS Trust I MS and me - a guide to self-management

Wheelchair rambling 14 16

www.mstrust.org.uk

www.mstrust.org.uk

Call: 01462 476 700

Info Service news

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