Publications
Advocacy
Behavior
Understanding Behavior in Huntington’s Disease: A Guide for Professionals
Arik C. Johnson, Psy.D., Jane S. Paulsen, Ph.D., 2014, 66 pages. A must-read for anyone who deals extensively with an HD-affected individual, this book explains not only the behavior challenges created by HD, but their origin in the HD-affected brain. By understanding the basis of these behaviors, the authors are able to suggest effective ways of dealing with and preparing for them. The book also covers environmental, individual and health factors that contribute to behavior problems. Problem-solving tips and techniques are given for behaviors arising from communication difficulties, memory problems, cognitive break-down and emotional instability.
DOWNLOAD: Click here for a FREE PDF DOWNLOAD.
SPECIAL OFFER: Thanks to a generous educational grant, HDSA is able to offer this updated guide available to HD families and their medical professionals at no cost.
Since the first edition of Understanding Behavior was published in 2000, much has been added to our understanding about HD including behavioral changes that take place along the continuum of the disease.
Written specifically for medical professionals, this second edition contains strategies that can be shared with caregivers as well as case studies that illustrate many of the most challenging behaviors associated with HD.
Click here to fill the form and get a printed copy of this guide.
caregiving
HDSA FAMILY GUIDE SERIES:
Caregiver’s Guide to Communicating with Healthcare Providers – Huntington’s Disease
HDSA, 2010, 18-page booklet. An introduction to working with healthcare providers and talking about Huntinton’s disease.
DOWNLOAD: Click here for a FREE PDF DOWNLOAD.
PURCHASE: You may also order bound, printed copies of this publication by calling 800-345-4372
A Caregiver’s Guide to Huntington’s Disease
US Huntington’s Disease Genetic Testing Group Revised 2003, 27 Pages. Presents the current diagnostic usefulness of genetic testing for HD and discusses the results of surveys that evaluate issues related to testing individuals at risk for this disease. This publication is extremely useful not only to those working in the HD community, but to all professionals who care for patients with adult-onset genetic disorders.
DOWNLOAD: Click here for a FREE PDF DOWNLOAD.
HDSA FAMILY GUIDE SERIES:
Long-Term Care
HDSA, 2019, 35-page booklet. This guide is designed to help families facing the challenge of HD learn more about long-term care and to understand what may be involved in arranging this care for a loved one.
DOWNLOAD: Click here for a FREE PDF DOWNLOAD
PURCHASE: You may also order bound, printed copies of this publication by calling 800-345-4372
Caregiver Guide for Mid to Late Stage Huntington’s Disease:
For Long-Term Care Facilities and In-Home Care Agencies
2014, 116 pages. This guide will provide caregivers with the information and resources that they need to provide the best care to persons with HD — to work through the difficult symptoms to reach the person behind the disease, and to allow the person to function as well as possible each step of the way. The goal of care for the person with Huntington’s disease is to promote independence, freedom of choice, and ability to function within the confines of safety for the person, the family, and the care team.
DOWNLOAD: Click here for a FREE PDF DOWNLOAD.
SPECIAL OFFER: Thanks to a generous educational grant, HDSA is able to offer free printed copies of this guide to professionals involved with long-term care facilities and in-home care agencies.
Click here to fill the form and get a printed copy of this guide.
A Caregiver Guide for HD Families
The Caregiver Guide for HD Families includes discussion on the benefits of physical and occupational therapy and nutrition along the continuum of disease progression but also offers practical suggestions for unique home caregiving issues such as driving, the role of young adults as caregivers and managing JHD at home.
To download the electronic copy please click here
clinical care
A Physician’s Guide to the Management of Huntington’s Disease (3rd edition)
Martha A. Nance, MD, Jane S. Paulsen, PhD, Adam Rosenblatt, MD, Vicki Wheelock, MD, HDSA 2011. Includes in-depth information on principles of treatment, genetic testing, medications, management of cognitive and behavioral problems and a new section with case studies.
DOWNLOAD: Click here for a FREE PDF DOWNLOAD.
To order bound, printed copies of this publication click Here
Foreign Language publications
Serie de Guías Familiares: Comunicación con los Proveedores de Salud: Guía para los Cuidadores
SPANISH / 18 pages
Revisado por: Vicki Wheelock, M.D. Centro de Excelencia de la HDSA
Editado por: Karen Tarapata & Deb Lovecky, HDSA
Traducido al español por: Arelis E. Martir-Negron, M.D.
DOWNLOAD: Click here for a FREE PDF DOWNLOAD.
PURCHASE: You may also order bound, printed copies of this publication by simply ADDING TO CART or by calling 800-345-4372 ext 222
Serie de Guías Familiares: La Enfermedad de Huntington
SPANISH / 18 pages
Revisado por: Kathleen Shannon, M.D., Centro de Excelencia de la HDSA
Steven Hersch, M.D., Ph.D., Centro de Excelencia de la HDSA
Editado por: Karen Tarapata & Deb Lovecky, HDSA
Traducido al español por: Arelis E. Martir-Negron, M.D.
DOWNLOAD: Click here for a FREE PDF DOWNLOAD.
PURCHASE: You may also order bound, printed copies of this publication by simply ADDING TO CART or by calling 800-345-4372 ext 222
Serie de Guías Familiares: La Prueba Genética
SPANISH / 20 pages
Revisado por: Randi Jones, Ph.D., Centro de Excelencia de la HDSA
Ami Rosen, CGC, Centro de Excelencia de la HDSA
Traducido al español por: Arelis E. Martir-Negron, M.D.
DOWNLOAD: Click here for a FREE PDF DOWNLOAD.
PURCHASE: You may also order bound, printed copies of this publication by calling 800-345-4372 ext 222
Serie de Guías Familiares: Enfermedad Juvenil de Huntington
SPANISH / 40 pages
Editado por: Martha Nance, M.D. / Randi Jones, Ph.D. /
Suzanne Imbriglio, P.T. / Betsey Gettig, M.S., C.G.C.
Traducido por: DCM, SCVMC-Language Services (ST-4037 – 7/8/2010)
DOWNLOAD: Click here for a FREE PDF DOWNLOAD.
PURCHASE: You may also order bound, printed copies of this publication by simply ADDING TO CART or by calling 800-345-4372
Serie de Guías Familiares: Cuidados a Largo Plazo Para la EH
SPANISH / 18 pages
Revisado por: Suzanne Imbriglio, PT (Terapista Física)
Virginia Goolkasian / Ann Murfitt, MSW., LICSW
Traducido al español por: Arelis E. Mártir-Negrón, M.D.
DOWNLOAD: Click here for a FREE PDF DOWNLOAD.
PURCHASE: You may also order bound, printed copies of this publication by simply ADDING TO CART or by calling 800-345-4372
Serie de Guías Familiares: La Nutrición y la Enfermedad de Huntington: Una Guía para Familias
SPANISH / 25 pages
Revisado por: Ann Gaba EdD, RD, CDN, CDE
Editado por: Karen Tarapata & Deb Lovecky, HDSA
Traducido al español por: Arelis E. Mártir-Negrón, MD
DOWNLOAD: Click here for a FREE PDF DOWNLOAD.
PURCHASE: You may also order bound, printed copies of this publication by simply ADDING TO CART or by calling 800-345-4372
Serie de Guías Familiares: Terapia Fisica y Ocupacional
SPANISH / 34 pages
Revisado por: Suzanne Imbriglio, PT (Terapista Física)
Editado por: Karen Tarapata & Deb Lovecky, HDSA
Traducido al español por: Arelis E. Mártir-Negrón, M.D
DOWNLOAD: Click here for a FREE PDF DOWNLOAD.
PURCHASE: You may also order bound, printed copies of this publication by simply ADDING TO CART or by calling 800-345-4372 ext 222.
General Information
Huntington’s Disease: A Family Guide
HDSA, 2016, 17-page booklet. This short booklet offers an overview of HD.
DOWNLOAD: Click here for a FREE PDF DOWNLOAD.
PURCHASE: You may also order bound, printed copies of this publicationby calling 800-345-4372
Lifting the Veil of Huntington’s Disease: Recommendations to the Field from the Huntington’s Disease Peer Workgroup
Recommendations to the field from the Huntington’s Disease peer workgroup
DOWNLOAD: Click here for a FREE PDF DOWNLOAD.
HDSA FAMILY GUIDE SERIES:
Advanced Directives for Huntington’s Disease
HDSA, 2013, 28-page booklet. This short booklet offers an overview of advanced directives and special considerations around Huntington’s disease.
DOWNLOAD: Click here for a FREE PDF DOWNLOAD.
PURCHASE: You may also order bound, printed copies of this publication by calling 800-345-4372
Long Term Care Monograph
Report based on the work of the HDSA Long Term Care Workgroup
DOWNLOAD: Click here for a FREE PDF DOWNLOAD.
genetics & genetic testing
HDSA FAMILY GUIDE SERIES:
Genetic Testing – Huntington’s Disease
HDSA, 2009, 18-page booklet. An introductory guide to genetic testing for HD.
DOWNLOAD: Click here for a FREE PDF DOWNLOAD.
PURCHASE: You may also order bound, printed copies of this publication by calling 800-345-4372
HDSA Genetic Testing Protocol for HD
Juvenile Huntington's Disease
The Juvenile HD Handbook:
A Guide for Families and Caregivers (2nd Edition)
Martha Nance, MD, 2007. This book provides readers with information about Juvenile HD, including genetic testing, when it is appropriate to perform the test, how to understand your HD affected child, and what to do if you find yourself in compromising situations as well as where to turn for help.
DOWNLOAD: Click here for a FREE PDF DOWNLOAD
PURCHASE: You may also order bound, printed copies of this publication by calling 800-345-4372
HDSA FAMILY GUIDE SERIES:
Juvenile Onset HD
Edited by Martha Nance, MD. This pamphlet defines Juvenile HD, diagnosis, specific medical issues, prognosis of the disease, financial, legal and social issues and more.
DOWNLOAD: Click here for a FREE PDF DOWNLOAD.
PURCHASE: You may also order bound, printed copies of this publication by calling 800-345-4372
Law enForcement Issues
FOR HD INDIVIDUALS & FAMILIES: Caregiver Guide & Support Documents
This booklet contains general guidelines for working with law enforcement, feedback regarding situations that may cause confrontations, and information about what to do in case of arrest or detainment.
DOWNLOADS:
CAREGIVER GUIDE: Click for a FREE PDF DOWNLOAD.
I have HD Card: A wallet card with information about HD.
My Crisis Template: A form that can be personalized with emergency numbers.
For additional copies please contact hdsainfo@hdsa.org
FOR LAW ENFORCEMENT PROFESSIONALS
& FIRST RESPONDERS:
Law Enforcement Training Guide & Fact Sheet
This booklet contains an introduction to HD, and information about managing the motor disorder, the cognitive disorder, and the psychiatric disorder. It also contains a list of supporting questions to ask the caregiver, as well as information about special issues that arise in incarceration and confinement.
DOWNLOADS:
LAW ENFORCEMENT TRAINING GUIDE: Click for a FREE PDF DOWNLOAD.
Key Points for Law Enforcement FACT SHEET: A one-page document containing key points for law enforcement (prints double-sided on legal size paper).
For additional copies please contact hdsainfo@hdsa.org
Nutrition & Swallowing
HDSA FAMILY GUIDE SERIES:
Speech-Language and Swallowing Difficulties
Karen Bryant, Ph.D, CCC/SLP, HDSA, 2014, 22-pages. provides information and resources on speech and swallowing problems associated with HD and offers case studies and potential solutions.
DOWNLOAD: Click here for a FREE PDF DOWNLOAD.
PURCHASE: You may also order bound, printed copies of this publication by calling 800-345-4372
HDSA FAMILY GUIDE SERIES:Nutrition and Huntington’s Disease
Discusses the nutritional needs in early, middle and late stage HD, provides hints for increasing calorie intake and recipes.
DOWNLOAD: Click here for a FREE PDF DOWNLOAD.
PURCHASE: You may also order bound, printed copies of this publication by simply ADDING TO CART or by calling 800-345-4372
PERIODICALS
The Marker (Formerly Research Report)
Look back on the highlights in HD research, advocacy, support and events from across the country!
Click here to access library and dowload
Personal and family issues
HDSA FAMILY GUIDE SERIES: Talking With Kids — Huntington’s Disease
HDSA, 2012, 26-page booklet. An introductory guide to talking about Huntington’s disease with kids, youth, and teens.
DOWNLOAD: Click here for a FREE PDF DOWNLOAD.
PURCHASE: You may also order bound, printed copies of this publication by calling 8800-345-4372
Talking With Kids About HD
HDSA, 2013, 111 pages. A book discussing how to have a conversation with children and family members of any age around Huntington’s disease and JHD.
DOWNLOAD: Click here for a FREE PDF DOWNLOAD.
PURCHASE: You may also order bound, printed copies of this publication by calling 800-345-4372
PERSONAL NARRATIVES
Given Away: A Sicilian Upbringing
Given Away: A Sicilian Upbringing
by Anna Randazzo
A story of a young girl’s perseverance through the the travails of World War II and beyond. An inspiring tale of the human will to triumph over adversity. 10% of the proceeds from sales of Given Away: A Sicilian Upbringing will benefit HDSA’s mission.
TO ORDER:
In print: http://www.amazon.com/Given-Away-A-Sicilian-Upbringing/dp/0989481921
An AffaiЯ Worth Remembering With Huntington’s Disease
Price: $25.00 USD
Huntington's Disease is a progressive, life stripping hereditary disease for which there is no cure. LOVE is the most powerful medicine available in living with and caring for a person at-risk and in the throes of it. This is a Love Story that illustrates how a marriage and a family can live, survive and thrive with an illness. Humor, frustration and sadness are just a few emotions experienced by the reader. True Love prevails as this disease bruises and batters a family's spirit. Many gifts are discovered during times of illness. Incurable love and intimacy are two such gifts.
This book is the Author's journey as wife, mother, breadwinner, caregiver and widow/spouse survivor of Huntington's Disease. It is about creating “Awareness” and giving the families affected by Huntington's Disease a “Voice” to a situation that few understand including friends, family, co-workers, and the community. Huntington's Disease is REAL and knowledge of the disease and it's ripple effect on a family is REAL.
This book speaks to at least four communities, those affected by Huntington's Disease or any chronic, progressive or terminal illness; the spiritual community, those who find strength through faith in the most trying moments; the therapeutic community, those who treat individuals, couples and families affected by illness; and the medical community, those doctors and other medical professionals, whether in primary care or specialists, who treat the patient, their caregivers or other family members of the illness, which can complicate the healing process.
Book Talks & Signings:
Debbiepausig.books@gmail.com North Haven, CT, USA 203.985.8246
Purchase a signed copy from me personally at www.debbiepausigmft.com in the “Affair Worth Remembering” tab and order via PayPal, then go to the “Contact Me” tab and enter the code DALLAS15 in the notes section and any special inscription you would like. $1.00 from each book sale will be donated to HDSA. Thanks!
Or-Purchase via Print on Demand through the publisher at: www.Lulu.com/content/15318021
Watching Their Dance
100% of the proceeds from “Watching Their Dance” is being donated to HDSA
To purchase “Watching Their Dance” go to Therese's author website: www.theresecrutchermarin.com It's also available on Amazon, B&N and in Kindle, Nook, Kobo formate.
Therese Crutcher-Marin, B.S., M.S.
Member on the HDSA Northern California Chapter Board
Author of Watching Their Dance: Three Sisters, A Genetic Disease and Marrying Into a Family Living At Risk for Huntington's
Synopsis: Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s
Would you marry the man you adored if you knew he had a chance of inheriting one of the cruelest diseases on earth?
Therese Crutcher is not a risk taker. Through meticulous planning, she eliminates as much uncertainty from her life as she can. Yet during her senior year of college, blithely planning to marry her beloved John Marin, she is suddenly thrown into turmoil when John’s sisters announce they finally know what killed their mother. Phyllis had Huntington’s disease, an inherited neurological disease with horrible odds: John and his three older sisters have a fifty-percent chance of inheriting this terrible wasting disease, which slowly kills the brain cells that affect movement and cognition. There is still no treatment or cure.
Therese takes the biggest gamble of her life and marries John despite his precarious future. Thus unfolds a life filled with unpredictability, tough choices, and pain, and yet full of love, good times, and great joy. Therese comes to realize that the uncertainty she willingly took on has opened her heart to love more deeply; that acknowledging her world could change overnight has made her life richer. She has learned to overlook shortcomings and to compromise, to let go of anger when she can’t control a situation, to find joy in the simple things. Life is just too precious to waste a moment on small stuff. And though John’s sisters leave this world far too soon, the Marin siblings, she realizes, have taught her about embracing life, forgiveness, and unconditional love.
Visit my Author Website: theresecrutchermarin.com
Visit my Author Facebook Page: https://www.facebook.com/authortheresecrutchermarin/
Amazon Author Page: https://www.amazon.com/author/theresecrutchermarin
amazon.com/author/theresecrutchermarin
https://www.goodreads.com/book/show/34703766-watching-their-dance
Physical & Occupational therapy
HDSA FAMILY GUIDE SERIES:
Physical and Occupational Therapy – Huntington’s Disease
Suzanne Imbriglio, PT, HDSA, 2010. Provides helpful information and resources for people in all stages of HD. Revised and updated in 2010 to include new trends in HD care.
DOWNLOAD: Click here for a FREE PDF DOWNLOAD.
PURCHASE: You may also order bound, printed copies of this publication by calling 800-345-4372
