November 2012 Open door

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MS Trust publications

Order form For a full list of publications visit www.mstrust.org.uk/pubs where items can be read, downloaded or ordered.

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 Living with fatigue MS and me - a self-management guide to living with MS MS explained Primary progressive MS exposed Talking with your kids about MS Kids’ guide to MS The young person’s guide to MS

Factsheets Regularly updated, we now have more than 20 titles available including

The MS Trust publishes a range of books, factsheets, DVDs and web based resources on a wide variety of topics. A selection is shown in the order form and the full list can be seen at www.mstrust.org.uk/pubs, where items can be read online, downloaded or ordered.

Books for families MS affects the whole family but it can sometimes be difficult to discuss the changes that MS brings when a parent has MS. These MS Trust books may help.

Kids’ guide to MS (for under 10s) Follow two cartoon characters as they find out about MS and some of its symptoms.

Depression Pregnancy and parenthood Stem cells Talking about MS Vitamin D

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

Date / /

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.

The young person’s guide to MS (10-16 year olds) Includes information about MS and its effects as well as some of the questions, concerns and emotions that a teenager may experience and have difficulty discussing.

Talking with your kids about MS (for parents)

Name Job title (if health professional) Address

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

Discussing MS with children may seem daunting and how and when you decide to do this will differ from family to family. Neuropsychologist Jo Johnson looks at some of the concerns parents may have and suggests how to approach the discussion, some of the things children may want to know and what other parents’ experiences have been.

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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www.mstrust.org.uk

Inside this issue...

November 2012

Welcome to the autumn edition of Open Door

Psychology and MS

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This edition of Open Door has a theme based around coping with the challenges of living with MS, including at diagnosis (page 10). This can range from knowing which questions to ask when considering drugs or therapies, to more complex issues such as finding ways of dealing with changes in mood using mindfulness or cognitive behavioural therapy. One of the more difficult challenges is the transition from relapsing remitting to secondary progressive MS and the articles on pages 8 and 9 discuss this topic. We know from people with MS and health professionals that there is very little research on the impact of this transition and even less in the way of information resources. Therefore we have launched an appeal to carry out some research to help us develop information and education resources to support people whose MS has become progressive (see page 8 and the enclosed copy of Make a Difference). We have recently funded the MRI scanning for a phase II study in Bristol into a stem cell therapy that aims to reduce the build up in disability that often accompanies progressive MS. Encouraging results from the phase I study suggested that using a person’s own stem cells may help to achieve this aim. It’s very early days for the research, but we have chosen to support it as we believe it offers real hope for the future (see page 3).

Volunteering

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C2C - coast to coast

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I know many people were inspired by the volunteer games makers at the Olympics and Paralympics and this quarter we are delighted to feature Anne Radcliffe’s story of how rewarding she finds volunteering in her local community. We are always pleased to receive personal stories for our website or Open Door and if you would like to write something please get in touch. Very best wishes and thank you for supporting our work,

Also inside: Making treatment choices

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News

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Santa’s on his way

Research update

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It’s not too late to order your Christmas cards from the MS Trust. Not only will you be supporting our work, but you will also be raising awareness of MS and the help we can offer. Our full range is available at www.mstrust.org.uk/christmas

Secondary progressive MS

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Transition to SPMS

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Info needs research

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Pam Macfarlane Chief Executive

MS Trust publications 16 www.mstrust.org.uk

Freephone: 0800 032 3839


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