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Learning to live with Huntington's disease Gerda Loosemore-Reppen, independent consultant, UK, reviews Learning to live with Huntington’s disease: one family’s story by Sandy Sulaiman. 2007, London, Jessica Kingsley Publishers ISBN 978 1 84310 487 2 Available from www.jkp.com This is a book which succeeds in showing the devastating impact of Huntington’s disease – a progressive genetically inherited neurological disorder – on several generations in one family. The book is organised into chapters written by the different members of Sandy’s family to illustrate how this terminal disease – which attacks the body, the emotional self and mind – has affected the different generations and their relationships to each other. It shows their coping mechanisms and attitudes to the disease and to life. The different perspectives clarify what it means to live with Huntington’s disease and how the whole family is involved. It illustrates the dilemmas of genetic testing by contrasting two brothers’ different viewpoints coloured by their growing up in a family which was almost torn apart by the effects of the disease. One brother, who is married and engaged in further education and business, chooses to live life to the full without wanting to be tested, whereas the other cannot wait to be old enough to learn whether he himself will be directly affected by the disease. This shows that one wants certainty and the other can live with the ambiguity. I found the book compulsive reading and liked the individual stories immensely. The different family members gave convincing and very honest accounts of their experiences and attitudes to living under the shadow of a terminal progressive illness. A vivid pictureThese are very personal reflections on family life, which is rendered challenging by the havoc that the disease wreaks – both emotionally and environmentally. The book manages to paint a very vivid picture of what it must be like to live with a person with the symptoms of Huntington’s disease, which may include uncontrollable body movements, clumsiness leading to lots of breakages, swallowing difficulties, slurred speech and personality changes such as a tendency to delusion, mood swings, aggression, violence and drinking. The children – who have a 50/50 chance of having inherited the faulty gene – have developed a range of coping mechanisms, as has their father, the long-suffering carer. What makes the book so remarkable are the wisdom, hope, sense of humour and love which permeate the accounts, by far outweighing the anger and fear that are expressed by all. Coping strategiesThere are clear coping strategies described, and other books and resources are mentioned, which may be helpful to those who care for people with Huntington’s disease. The coping strategies include a sense of perspective, humour, practical tips (like getting enough sleep and time for the carer to pursue their own life insofar as this is practicable), spirituality, friendships and finding ways of venting the frustrations. The younger son’s top tips for dealing with family arguments are well worth listening to and show maturity well beyond his years. People who have the disease themselves may find some comfort from reading how Sandy is dealing with her life and how her family are supporting her and each other. Resources: Deaf Parenting websiteSabina Iqbal, Chair and Founder of Deaf Parenting UK, reports on the launch of its new website. Deaf Parenting UK (DPUK) – a national organisation run by Deaf parents for Deaf parents – has launched its new website, which has been revamped and designed by Remark! The website was launched at DPUK’s Annual General Meeting in July 2007, together with a report of achievement, looking at how far DPUK has come since it started in 2001. DPUK was set up to represent the needs of Deaf parents in the UK, who are British Sign Language (BSL) users. Most of these parents have hearing children. DPUK trustees and Remark! staff worked together on the website, and also designed a professional exhibition stand for the launch, using lots of visual images. The aim is to increase DPUK’s profile. A positive slogan – ‘Enabling confidence, empowering and supporting Deaf parents’ – was created as DPUK’s motto and displayed on the exhibition stand and website. The new website is an exciting resource bank of information for Deaf parents and professionals working with them. Every page displays BSL translation, enabling Deaf parents to have equal access to information. It includes a comprehensive list of useful resources, covering subjects such as pregnancy and birth, baby care, family life, school issues and parenting teenagers, as well as a section dedicated to children of deaf adults, and details of research papers and references. It also hosts a forum/message board where browsers can register and join the discussions to share experiences, contribute ideas and support one another as Deaf parents and professionals working with them. A news section is included on the site, highlighting DPUK’s achievements, which include attendance at the 15th World Congress of the World Federation for the Deaf in Madrid in July 2007; receipt of funding from the Local Network Fund to run 12 monthly family day events for Deaf parents and children; and DPUK’s partnership project with Parentline Plus to train newly recruited trainers to deliver Deaf parenting skills courses to Deaf parents within their local area. There is also information on all DPUK services, including befriender services, Deaf parenting skills courses, one-to-one parenting support, presentations and consultations. DPUK welcomes contributions and feedback to help develop the website. To find out more about DPUK and its services, please visit www.deafparent.org.uk DPPI |
