Ellen van Broekhoven (dietician), Dirk Gaasbeek (nursing home physician), and Maartje Veninga (speech therapist) work in a nursing home with a special unit for patiens suffering from Huntington's Disease. They discovered that there were no ready answers to questions in relation to, in particular, nutrition for patiens suffering from this disease. It is for this reason that they decided to pool their knowledge and experience into a very practical guide and to supplement it with information from the skimpy scientific literature on this subject.

The book provides insight into the nutritional problems that exist among patients suffering from this disease from the point of view of various disciplines. With that, it appears time and again that communication, i.e. to understand what the patient wants and to which degree it is possible to discuss problems of vital importance. That is why communication comes up extensively. Another question that is raised is whether or not tube feeding may be a good alternative if regular feeding is no longer possible. What makes this book so unique is that it serves as a comprehensive guide for medical practitioners and paramedics. "Nutrition and Huntington's Disease" brings together all of the available knowledge and experience on this subject in a clear guide for use by doctors, nurses, dietitians, speech therapists, physical therapists and ergo therapists. In this recommendation, Prof. Dr. H.P.H Kremer, neurologist, says: "I warmly recommend this book to those who, either in their work or in the family, have to deal with patients suffering from Huntington's Disease. This is the first practical publication in this field and I hope it will inform and inspire many people."

Recommendation

One of the frustrations of working with people suffering from Huntington’s Disease is the fact that a causal treatment does not exist (yet). Our ideal is to find a drug that slows progression of the disease or that cures patients with Huntington´s Disease. As long as this ideal has not been realised, it seems as if we can do nothing about the disease. However, for those directly involved in the care for those patients it is clear that we can do very much. The core of our “treatment” currently consists of attempts to make life at all levels as bearable and pleasant as possible. It is remarkable, therefore, that little has been published about aspects of those attempts, let alone that they have been subject to any form of scientific research. As data lack, the best thing to do is to rely on experience of those who treat and care for the patients.

The authors of the book at hand possess the experience.
The book results from expertise gained in the nursing homes Heemhof and Hullenoord in the Netherlands, in the past years. This nursing home is specialised in the care for patients suffering from the Huntington´s Disease. The authors were impressed by the feeding and weight problems so often seen in their patients and from their experience and expertise they have developed solutions for those problems. They describe swallowing problems, advise about identifying malnutrition and present recommendations for optimum nutrition. Since the introduction of the so-called PEG tubes for artificial feeding, a lot more is possible than before to maintain patients with swallowing disorders in an optimum feeding condition. However, this form of artificial feeding raises its own ethical dilemmas. You will also find information about that aspect.

I warmly recommend this book to those who, either in their work or in their family, have to deal with patients suffering from Huntington´s Disease. This is the first practical publication in this field and I hope it will inform and inspire more people. But above all, I hope it will help our patients.

Prof. Dr. H.P.H. Kremer, neurologist.

Abstract

Its progressive course makes Huntington´s Disease (Chapter 1) a dramatic disease with progressing disabilities. Furthermore, it is a hereditary disease, which may affect complete families. Although the genetic causes of the disease are known in full detail, we still cannot cure it. The nutritional needs (Chapter 2) of patients with Huntington´s Disease may increase up to 5000-6000 kcal daily; most patients do not succeed in meeting their needs. Sometimes, with nutrient enriched diets, they succeed in eating 4500 kcal daily at most (Chapter 7).
Apart from increased energy needs, almost all patients have to deal sooner or later with swallowing disorders (Chapter 4). Advice about posture and devices may make eating and drinking easier. Communications with patients suffering from Huntington´s Disease is impaired, but not impossible. In order to record an anamnesis and to provide advice, it is important for health care workers to know how to communicate with their patients (Chapter 3).
Motor limitations, swallowing impairments, decline of cognitive functions and changes in their character may lead to limitations in feeding behaviour (Chapter 5). Chapter 6 describes how malnutrition may be recognised.
Constipation often occurs in the chronically ill and may be related to the nature and consistency of the food. Vomiting is an often recurring complaint of patients with Huntington´s Disease. Chapter 8 tackles the causes of constipation and vomiting and offers advice on the subject.
If even energy enriched diets are insufficient and the swallowing disorders become insuperable, artificial feeding through a PEG tube may be taken into consideration (Chapter 9). The PEG tube may add to the quality of life, but the patient may also feel that it lengthens his life (suffering). The authors think it self-evident that a careful consideration should take place, together with the patient and the people involved in his care, before a PEG tube is placed (Chapter 10).
Many drugs have an intended or unintended effect on swallowing, speaking, the oral cavity, pharynx, esophagus and stomach. Chapter 11 provides an overview.
The subtitle of this book is: “A multidisciplinary approach”. Many disciplines are involved in the care of patients with Huntington´s Disease, especially when the disease is in advanced stage. May this book, written from practice in a nursing home (Chapter 12) be a handy guide for all involved.

If you prefer, print this order form, fill it and send it by mail to:
Atlant Zorggroep
Huntington Unit Secretary
P.O. Box 10
7300 AA APELDOORN (The Netherlands)

Or fax it to that number: + 3155 - 5067201

FACES OF HUNTINGTON'S
By Carmen Leal-Pock
ISBN: 1-894169-10-7

A book for and about those who have Huntington's Disease, and for others who care by

Faces of Huntington's is a unique and evocative collection of writings which illuminates the many facets of HD. At once tragic, uplifting, frightening and inspiring.

To order a copy: Send check or money $19.95 to Living hope, Inc., P.O.Box 952163, Lake Mary, FL 32795-2163, USA.

Send Email enquiries to: promo@digital.net

Please mention in your order:
Send my donation to the Marjorie Guthrie Fund of the International Huntington Association.

HUNTINGTON'S AND ME - A GUIDE FOR YOUNG PEOPLE
by Alison Gray
with drawings by Bronnie Webb
published by the Huntington's Disease Association (Wellington) Inc.

"Huntington's Disease is a family disease. When someone in the family has it, everyone becomes involved - parents, grandparents, aunties and uncles, sons and daughters. Everybody's lives change.
Young people have to come to terms with the fact that their mother or father or grandparent is not like most other people. They have a condition that is uncurable, gets progressively worse and can be passed on through the generations.
Young people affected by Huntington's need to have correct and up to date information as early as possible - they want to know the truth and this must be provided in such way that it is informative and factual, as well as supportive. With predictive testing available to those eighteen and over, the young must have this information early so they have time to consider the implications of testing, not only on themselves, but also on their family and friends.
This book provides the latest information about HD and offers strategies for coping with immediate and long-term challenges. It is soundly based on the experiences of youn people themselves. Some have just learned that HD is in their family, others are considering predictive testing. Some have already experienced the sad loss of a parent.
The book shows that the experience of coping with HD is not all negative. Young people in HD families gain strength and courage. They learn to face the present and the future with love, acceptance, compassion and hope. This book is an essential guide for that journey - for both young people and adults.

COSTS:
New Zealand: NZ$15 inclusive GST, package & postage
Australia: US$7.- inclusive package & postage
Other countries: US$7.50 inclusive package & postage

ORDER:
Graeme and Elaine Bradley
RD 1, Bulls
New Zealand
tel/fax: +64 - 6 - 327 6703

UNDERSTANDING BEHAVIOUR IN HUNTINGTON DISEASE
by Jane S. Paulsen, Ph.D.

A practical guide for individuals, families and professionals coping with HD.

BOOKS FOR PROFESSIONALS:

HUNTINGTON'S DISEASE, second edition; edited by Professor Peter S. Harper MA, DM,FRCP, published by Saunders ISBN 0-7020 2153-9

A PHYSICIAN'S GUIDE TO THE MANAGEMENT OF HUNTINGTON'S DISEASE
by Neal Ranen, Carol Peyser and Susan Folstein.

Can be ordered with the Huntington Society of Canada, The Huntington Disease Society of America and iha@huntington-assoc.com

UNA GUIA MEDICA PARA EL MANEJO DE LA ENFERMEDAD DE HUNTINGTON
By Neal Ranen, Carol Peyser and Susan Folstein

Can be ordered with the Huntington Society of Canada, The Huntington Disease Society of America andiha@huntington-assoc.com

HUNTINGTON'S DISEASE -clinical, genetical and epidemiological aspects
by Dr. Sabine Siesling
ISBN: 90-9012709-7

BOOKS IN SPANISH:

HUNTINGTON: TODA UNA HISTORIA

A series of stories related to HD, some of them translated from the book "Faces of Huntington's" with permission of its author Carmen Leal.

PROBLEMAS DE CONDUCTA EN LA ENFERMEDAD DE HUNTINGTON

Una guía practica para individuos, familias y profesionales que conviven con la EH
Dra. Jane S. Paulsen

Como explica su autora en el prefacio, éste “es un libro escrito tanto para las personas que sufren la enfermedad como para los que les rodean, pero siendo también útil para médicos de cabecera, psicólogos y psiquiatras. El objetivo del libro es intentar comprender mejor los diferentes factores que influyen en la conducta de los enfermos de Huntington y ofrecer métodos que permitan controlar estas conductas difíciles."

CUIDANDO AL ENFERMO DE HUNTINGTON - Una guía básica-

Editado por la Asoc. Corea de Huntington Española (ACHE) con la colaboración de:
Sra. Dolors Galarza, enfermera y Logopeda
Dr. Erica Orejas, Médico en rehabilitación y medicina Física
Dn. Javier Guerreria, Trabajador Social
Marta Fatás, Neuropsicóloga.

Manual de cuidados al enfermos de Huntington ncaminados a mejorar su calidad de vida.
Descarga la versión en pdf aqui