A Caregiver's Handbook for Advanced-Stage Huntington Disease
Author and Editor:
Jim Pollard, MA
Suzanne Imbriglio, RPT
Estelle Klasner, MA, CCC-SLP
Allen J. Rubin, MD
Gayle Sanders, NHA
Winkie Simpson, RN, BN
Huntington Society of Canada, 1999
This is an excellent book which is full of practical information on caring for someone with Huntington's Disease. It includes an overview of Huntington's Disease, and a description of what advanced-stage HD looks like. The book describes a "trio of disorders" including movement changes, cognitive changes, and emotional changes.
Some of the topics covered in this book are:
Each chapter contains information relating specifically to Huntington's Disease. It includes suggestions on how to cope with various problems and how to make things easier for the person with HD. In addition, there are many caregiver tips and nutshell case studies interspersed throughout the chapters.
There is a chapter on advanced-stage medical issues, such as sleep and sleeplessness; unexplained screaming; excessive sweating, temperature, and thirst; frequent urination and constipation; seizures; high fevers; contractures; and severe chorea. There is also an appendix listing voluntary agencies and another appendix giving rehabilitative/adaptive equipment and product information.
I highly recommend this book for anyone who is caring for someone with Huntington's Disease. If you have a loved one with HD in a nursing home, I would suggest that you donate a copy of this book to the staff. It is not an expensive book, and it is very easy to read. It can be ordered from:
There is also a copy available online at:
Created and maintained by Renette Davis. Send comments to her by clicking : here.
Created: Mar. 11, 2000
Last updated: Nov. 30, 2010