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New from the MS Trust

Way Ahead 2006;10(4):14-15
  1. The young person's guide to MS
  2. Living with fatigue
  3. Bowel problems in MS

The young person's guide to MS

The MS Trust is pleased to announce that the booklet we have worked on with MS specialist nurse Kerry Mutch for young people who have a parent with MS is now available.

The young person's guide to MS was inspired by a series of workshops organised by Kerry to enable youngsters affected by MS to learn more about the condition and to explore their thoughts, concerns and emotions around living with MS in their family, aligned to calls that we received here at the MS Trust.

The booklet is primarily aimed at 10-15 year olds and is split into two sections. The first aims to answer some of the questions young people may have about MS, including:

  • What is MS?
  • Will I get MS?
  • What are the symptoms of MS?
  • Is there a cure for MS?

The second section looks at how having a parent with MS can affect young people. In particular it looks at:

  • Emotions
  • Extra responsibilities
  • Possible changes to social/family life
  • Why me? Why my family?

Within this section is a selection of tips from young people for coping when they are finding things difficult. However, it also looks at the positive influences MS has had on their lives and finishes with a section of useful sources of information and support.

As well as sharing their thoughts and experiences, young people have also been instrumental in the design and content of the booklet. It was reviewed at all stages by a readers' panel consisting of some of the youngsters who attended a workshop or completed the questionnaire, one of whom also wrote the introduction to the booklet. The following are just a few of their comments:

  • "I liked reading the comments from other teens with parents with MS. It comforts me to know that I'm not the only kid in the world with a parent who has MS."
    Laura, 12
  • "I really like the 'How to cope' bit."
    Ben, 13
  • "It's bold and colourful. The important facts really stand out."
    Sam, 14
  • "Having a guide like this one would have been a great way to give me answers when I was too afraid to ask the questions."
    Sarah, 16
  • "I think this is going to be a lovely supportive booklet."
    Harriet, 10

As well as answering their questions and enabling young people to explore their feelings around how MS affects them, we also hope the booklet will ensure that other young people recognise they are not alone when facing the challenges posed by MS in the family.

We were very lucky to receive encouragement and support from the Previté family for this booklet. For their three sons MS has always been part of the family and adjusting to the change in their father from walking to wheelchair has been difficult. The family hopes that the booklet will not only be useful for young people, but that it will also be used by parents to help them understand what may be worrying their children, that it will help communication between parents and their children and even act as a catalyst for starting dialogue about some tough questions

Read, order or download The young person's guide to MS

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Living with fatigue

Living with fatigue is a new book from the MS Trust that aims to provide practical ideas and suggestions to help people manage their own fatigue.

Fatigue is a common symptom and yet it can only be effectively managed when the individual recognises and understands the effect fatigue has on their life and is prepared to find ways to work around the problems posed.

Written by Michelle Ennis, an MS specialist OT at the Walton Centre in Liverpool, and illustrated with comments by people with MS who know what it is like to live with fatigue, this book considers some of the factors that can contribute to fatigue and discusses lifestyle changes and management techniques that can help to lessen the impact of fatigue on daily life.

Read, order or download Living with fatigue

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New factsheet: Bowel problems in MS

This factsheet aims to provide people with MS who are experiencing bowel problems - one of the most embarrassing symptoms - some basic information so that they feel able to seek help from appropriate health professionals.

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