This handbook has been a team effort over the last two years. Our thanks to
the following people who contributed 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 signi-ficant 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
Thank you, team!
A joint initiative of the Huntington Society of Canada and the Foundation for the
Care and Cure of Huntington's 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
May our effort improve the care of those who suffer HD until that happy day!
Hopefully, any day now...
The fact that you're reading this handbook shows a commitment to the person
with Huntington disease (HD) in your care. He is a very special person. He was
probably doing well in life before HD began to show itself. Most likely, he
had begun a career and family.
But as his HD progressed, he faced challenges that we probably will never have to face. The list of things he has already lost to this relentless disease would force most of us to abandon all hope. He's lost his job, his friends, his independence, and his ability to care for himself. He may feel guilty that he's put his children and his grandchildren at risk for HD. And he may see his disability as a burden he has imposed on both you and his family. And now he's in your care.
You, the caregiver, are a very special person too. Whether you are in a long-term
care facility or at home, the challenges of caring for this person with HD
may seem daunting at times.
Most health care professionals-nurse aides, nurses, social workers, rehabilitation therapists, and psychologists-finish their
careers never having cared for a single person with HD.
Simply by caring for one person with HD, you are about to gain a wealth of know-ledge and experience. By becoming a partner in his care, by understanding how HD progresses, and by recognizing how it affects his mood, thinking and movement, you can affect his life in a very positive way. Maybe to a degree far greater than anyone else you've ever had in your care. He's in good hands!
Purpose Of This Handbook
The aim of this handbook is to familiarize you with HD, so that you can recognize
its symptoms and know what to expect as it progresses. Included are some general
principles of care and tips that other caregivers have found helpful. By antici-pating the problems you'll face as the disease progresses, you'll be better
prepared to find solutions for them.
Families touched by HD often say that understanding HD is the hallmark of a
good caregiver. That is, if you understand that it is a disease of families, a disease of
both body and mind, and a challenging disease with no cure and no easy answers,
you'll do well. If you persevere through his adjustment to you, recognize
and support him through his anger and his sadness, and communicate with him, then the good days will outnumber the not-so-good and you'll be an excellent caregiver...
because you will really understand HD.