A Caregiver's Handbook for Advanced-Stage Huntington Disease

This handbook has been a team effort over the last two years. Our thanks to the following people who con- tributed to the final product: Gerrit Dommerhoft, The Netherlands; Lori Quinn, PhD, New York, NY; Herb Rukin, Lowell, MA; and Mary Shea, Toronto, ON.

We are also indebted to the following people who reviewed and commented on various drafts: Phyllis Bain, Fonda, NY; Roseanne Cetnarskj, Edinburgh, Scotland; John Evans, Housatonic, MA; Charlyne Hickey, Rochester, NY; Tracey Plourde, Toronto, ON; Gerleine Schoonover, San Antonio, TX; Steve Smith, Norfolk, England; Bob Stein, Lancaster, PA; and Seth Washburn, Louisburg, NC.

Carol Moskowitz, RN-C, New York, NY and Martha Nance, MD, Minneapolis, MN edited the manuscript and made significant contributions to both text and tone. My son, Jimmy, managed word processing and computers, and my wife, Maureen, reviewed many drafts. Shirley Procell of Bossier City, LA contributed her prayer. Thank you, team!

A joint initiative of the Huntington Society of Canada and the Foundation for the Care and Cure of Huntingtons Disease, this publication represents the final project overseen by now retired Executive Director of the Huntington Society of Canada, Ralph Walker. Ralph's determination over the past two decades to fill the void of information about HD has been a profoundly generous contribution that resonates throughout North America and, literally, around the world. The collection of educational materials produced by the Society is a national treasure graciously shared with people seeking information about HD on every continent.

This is also the final project for the Foundation for the Care and Cure of Huntington's Disease (FCCHD). In keeping with the wishes of its late founder, Dennis Shea, the Foundation will cease operation in June 1999. As Program Director of the Foundation, Liz Mueller has spent more than a decade bringing people from diverse backgrounds together to collaborate on two missions: curing HD, and improving the quality of care given to those who have HD. She's been a fine coach, confidante, collaborator, contributor, and colleague to many.

All of us who worked on this handbook are grateful to have collaborated with Liz and Ralph on this project.

The Huntington Society of Canada wishes to thank The Trillium Foundation for funding the publication of this book.

On a more spiritual level, our collective gratitude to the hundreds of people who suffered through Huntington disease and taught us the lessons contained herein along the way. We pray for a cure for HD. Until there's a cure, there's only care. May our effort improve the care of those who suffer HD until that happy day! Hopefully, any day now...