Living Library
eFeature - A Family Member with Multiple Sclerosis
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MS in the Family
http://www.mstrust.org.uk
Focusing on young people's day at the Walton Centre in Liverpool, this article offer details
on their views. It gives details on the event, how it came about and what it entailed. The most
interesting part of the article is the last section in which the children at the event give their
thoughts and views on MS.
Focus on the Family
http://www.msif.org
This MS International Federation magazine takes a special look at families and MS. It
examines issues that are relevant to families and MS, including sensitive issues such as divorce.
There are articles on how MS changes a family, how to encourage children to talk about changing
relationships, and steps to take to avoid carer burnout. You can download the magazine (via PDF) or
subscribe, and this issue (number 3) is well worth a read.
Family Changes by Keep S'myelin
http://www.nationalmssociety.org
This is an issue of the children’s magazine from the American MS Society website that looks
at how family life changes when you live with MS. It has stories, cartoons and games to help you
talk to your children about MS and how the family changes and continues to change because of it.
There is also a parents' pullout section to give you some ideas and advice on how to use the
newsletter to best effect.
What MS has Taught Me
http://www.nationalmssociety.org
An article that is written by a teenager whose mother has MS. The author looks at the impact
that MS had had on her life and how she feels about her mother. A very interesting article that
gives a real-life view on how a child feels when a member of their family has MS.
MS and Parenting
http://www.msif.org
This article from the Multiple Sclerosis International Federation examines the issues that
must be examined when thinking about starting or extending a family. Genetics, relapses and
disability are just a few of the areas covered.
Let’s Talk MS for Parents
http://www.msforparents.com
This site is a goldmine of information. There are several areas of the site offering
articles. These include: The challenges of parenting with MS, Questions and situations some parents
have experienced, issues such as effects on school life, how children feel and react over time, how
the disease affects the family, and how to prepare your family for cancelled activities or hospital
stays. There is also a chatroom, message board, a quiz, links, resources and even tips!
You and Your Family
www.ms-society.ie
A short article from the Irish MS Society that looks at the impact of diagnosis on children
and friends. Such questions as 'How much and what exactly should you tell your children?' are
answered. It may be a short article, but it is packed with useful advice.
Support for Family Members
http://www.msif.org
This is an excerpt from the Multiple Sclerosis International Federation’s ‘Principles to
promote the quality of life of people with MS,’ which outlines the way healthcare and other
organisations can better support families of people with MS. These include access to respite care,
family counselling and training. There are links providing further information on each of the
principles.
Social Interaction
http://www.msrc.co.uk
An article from the MS Resource Centre that examines the impact of a positive diagnosis for
MS - in particular, changes in personality. It is a frank look at how the symptoms of MS, such as
sexual dysfunction, anger, denial and cognitive impairment and even abuse, can affect a family. A
hard-hitting article that aims to air some of the issues not always discussed about MS.
Family at Jooly’s Joint
www.mswebpals.org
Jooly’s Joint is a UK community website. The founder Julie Howell set up the sit, after she
was diagnosed with MS, as a way to learn about the disease. The site now has over 10,000 members
and has a special family section where you can meet people in a similar situation all around the
world. Please note that you must be 16+ to use this service
Books and Pamphlets
Multiple Sclerosis: A Guide for Families
http://www.amazon.co.uk
The latest edition (3rd) of this book looks at the impact of MS on the family. It provides
strategies and resources on how to cope with the disease. This page from Amazon.co.uk provides
details on the book and allows you to purchase it.
Someone You Know has MS: A Book for Families
http://www.nationalmssociety.org
A brochure for families produced by the American MS Society. It is written from the
perspective of a child called Michael whose mother has MS and therefore covers areas of concern for
him. These include: what is MS, who gets the disease and why, and how he copes with feeling angry
or scared. This is something you can read with and then discuss with your child and then discuss
the issues your child may have surrounding MS.
Multiple Sclerosis: The At Your Fingertips Guide
http://www.amazon.co.uk
This book answers 200 questions from people with MS and their families. There is an
examination of the impact of MS in a family, the emotional upheaval involved and how to adapt as a
family. It also offers practical advice on a whole host of subjects such as children,
relationships, work, and travel. This page from Amazon.co.uk allows you to purchase the book.
MS Trust
http://mstrust.org.uk
Pamphlets available from the MS Trust are free and truly varied. This index page allows you
to order or download them. Titles include, 'My Dad’s got MS,' 'Talking about MS with Your Family
and Friends', 'MS Explained', and 'Fatigue'.
MS Society
http://www.msociety.org.uk
This is the section where you can find all of the Society’s publications. Included are 'My
Mum’s got MS', 'Genes and MS', the 'Carers' Handbook', 'Relationships and Intimacy', 'MS and Your
Home' and a video called 'Does Someone You Know Have MS?' Just fill in the form and the
publications will be sent to you.
Non-MS Family Sites
Channel 4’s Family Magazine
http://www.channel4.com
This is an online magazine from Channel 4. It offers information and advice for the families
of today. Whether you are looking for information on how to communicate, solve sibling rivalry, on
stepfamilies or on caring, this site has it. It offers sensible and practical advice drawn from the
programmes it airs, such as Trust Me - I’m a Teenager.
Care for the Family
www.care-for-the-family.org.uk
This site aims to promote strong family life. It contains articles such as how to grow
through difficulties, ten tips for relationships, and giving children a sense of value. There are
also details on various events like the 1-2-1 challenge, and father’s evenings. The site also
contains a downloadable magazine (PDF) and an enewsletter.
BBC’s Parenting Site
www.bbc.co.uk/parenting
The site brings together a huge number of resources and information. There are all the
parenting and children’s programmes produced by the BBC, such as Little Angels and Tweenies, as
well as information on finances and finding a school. Articles and advice is also offered on
getting the work-life balance right, helping your children learn, playing with your children and
childcare. Plus an interactive area and enewsletter. A very useful resource!
The information and reference materials contained in this page are intended solely for the information of the reader. They should not be used for treatment purposes, but rather for discussion with the patient's own physician. MSActiveSource.co.uk (maintained by Vision360 Limited) does not control or edit these pages and can therefore not assume responsibility for their content. All visitors to the site agree to read and abide by the complete terms of the legal disclaimer.