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Advocacy

Live Out Loud

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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.

Understanding Behavior in Huntington’s disease

2nd edition
Written and edited by Jane Paulsen
1999

Click here to download

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 simply ADDING TO CART or by calling 800-345-4372 ext 222.

QUANTITY:

Price: $2.00

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, 2009, 24-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 simply ADDING TO CART or by calling 800-345-4372 ext 222.

QUANTITY:

Price: $2.00

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 order your copy please click here

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.

PURCHASE: You may also order bound, printed copies of this publication by simply ADDING TO CART or by calling 800-345-4372 ext 222.

QUANTITY:

Price: $7.00

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 219.

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 219.

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 simply ADDING TO CART or by calling 800-345-4372 ext 219.

QUANTITY:

Price: $2.00

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 ext 219.

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Price: $2.00

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 ext 219.

QUANTITY:

Price: $2.00

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 ext 219.

QUANTITY:

Price: $2.00

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 219.

QUANTITY:

Price: $2.00

Datos Rapidos Sobre la EH

SPANISH / 2 pages

DOWNLOAD: Click here for a FREE PDF DOWNLOAD.

Guía Para Medico Sobre el Manejo de la
Enfermedad de Huntington Tercera Edición

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 publication by simply ADDING TO CART or by calling 800-345-4372 ext 222.

QUANTITY:

Price: $2.00

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 simply ADDING TO CART or by calling 800-345-4372 ext 219.

QUANTITY:

Price: $2.00

Long Term Care Monograph

Report based on the work of the HDSA Long Term Care Workgroup

DOWNLOAD: Click here for a FREE PDF DOWNLOAD.

HD & HDSA Brochure

Contains information about HD and HDSA.
Click here to 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 simply ADDING TO CART or by calling 800-345-4372 ext 219.

QUANTITY:

Price: $2.00

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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 simply ADDING TO CART or by calling 800-345-4372 ext 219.

QUANTITY:

Price: $7.00

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 simply ADDING TO CART or by calling 800-345-4372 ext 219.

QUANTITY:

Price: $2.00

Juvenile HD and the School Experience: Education and the Child Affected by Juvenile Onset HD

Edited by Martha Nance, MD.  This book provides support and guidance to schools who have a student with Juvenile HD

DOWNLOAD: Click here for a FREE PDF DOWNLOAD

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.

HD Profile Card: A form that can be personalized with an individual’s photo and identifying information.

My Crisis Template: A form that can be personalized with emergency numbers.

To order your free copy please click here

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).

To order your free copy please click here

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 associalted 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 simply ADDING TO CART or by calling 800-345-4372 ext 219.

QUANTITY:

Price: $2.00

Recipes from the Heartland

Recipes, nutrition tips and swallowing startegies for HD families prepared by members of HDSA’s Upper Midwest Region. Recipes from the Heartland was created especially for individuals and families affected by Huntington’s disease. Each recipe was carefully chosen by HD families in the Upper Midwest who have prepared these meals for their own families. Makes a great gift!

Please note: the Recipes in this cookbook may or may not be appropriate for your loved one living with HD. Please consult your speech-language pathologists, dietician or physician before serving any new foos or preparation for your loved one.

PURCHASE: You may also order bound, printed copies of this publication by simply ADDING TO CART or by calling 800-345-4372 ext 219.

QUANTITY:

Price: $15.00

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 ext 219.

PERIODICALS

HDSA Year in Review / The Marker

Annual review highlighting news and events concerning HD care, advocacy, research and other HDSA inititiatives in support of individuals with Huntington’s disease, their families, and healthcare professionals.

DOWNLOAD: Click links below for FREE PDF DOWNLOADS.

Year in Review 2016

Year in Review 2015

Year In Review 2014

The Marker: 2013

The Marker: 2012

The Marker: 2011

HDSA’s Toward a Cure Newsletter

Toward a Cure provides information and opinions and relays items of interest to individuals with Huntington’s Disease and their families, healthcare professionals and interested friends and supporters.

DOWNLOAD: Click links below for FREE PDF DOWNLOADS.

Toward a Cure- Winter 2013

Toward a Cure- Winter 2012

Toward a Cure- Winter 2011

We Are HDSA!

We are HDSA! is a support group newsletter which communicates news and events to HDSA support groups across the United States. We are HDSA! features upcoming educational events, information about potential guest speakers for meetings, and articles of interest to the HD community.

DOWNLOAD: Click here for a FREE PDF DOWNLOADS

We Are HDSA! February/March 2015We Are HDSA! June 2012
We Are HDSA! Dec 2014/Jan.2015We Are HDSA! April 2012
We Are HDSA! Oct./Nov. 2014We Are HDSA! February 2012
We Are HDSA! August 2014We Are HDSA! January 2012
We Are HDSA! June/July 2014We Are HDSA! October 2011
We Are HDSA! April/ May 2014We Are HDSA! September 2011
We Are HDSA! Nov./Dec.2013We Are HDSA! August 2011
We Are HDSA! September 2013We Are HDSA! July 2011
We Are HDSA! June 2013
We Are HDSA! April 2013

 

Personal and family issues

Is Daddy OK?

Janet Howes, ACSW 2004, 24 pages Book is ideal for kids, age 6 through 12 who have a parent, family member or other adult in their life who is affected by HD. Book is intended to serve as tool for parents to read along with children or as a starting point for discussions about how the story relates to their specific experiences.

A percentage of the proceeds from this book go to HDSA programs.

PURCHASE: You may order bound, printed copies of this publication by simply ADDING TO CART or by calling 800-345-4372 ext 219.

QUANTITY:

Price: $12.95

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 simply ADDING TO CART or by calling 800-345-4372 ext 219.

QUANTITY:

Price: $2.00

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 simply ADDING TO CART or by calling 800-345-4372 ext 219.

QUANTITY:

Price: $10.00

PERSONAL NARRATIVES

Homeward Journey
The Poetry of Leslie R. Foor

Leslie R Foor, 2003, 140 pages. Depicts a young writer’s life through the art of poetry. Mr. Foor was affected by HD in his mid thirties but he never gave up hope. He continued to write poems until his struggle with the disease ended at the age of 48.

Percentage of the proceeds from this book benefit HDSA programs.

PURCHASE: You may order bound, printed copies of this publication by simply ADDING TO CART or by calling 800-345-4372 ext 219.

QUANTITY:

Price: $14.95

The Greatest Man I Never Knew

Elizabeth Baxter, 2012 168 pages.  A story about a daughter coping with the loss of her father, the man she never knew.  In the story, she describes some of her own struggles and strengths since she herself is at risk for Huntington’s disease, the same disease that had robbed her of her father.

PURCHASE: You may order bound, printed copies of this publication by simply ADDING TO CART or by calling 800-345-4372 ext 219.

QUANTITY:

Price: $22.00

It’s Better to Laugh Than Cry

Clarence Vos, 2013, 83 pages.  A look at one family’s journey through Huntington’s disease and efforts to stay positive through the journey.

PURCHASE: You may order bound, printed copies of this publication by simply ADDING TO CART or by calling 800-345-4372 ext 219.

QUANTITY:

Price: $10.00

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 simply ADDING TO CART or by calling 800-345-4372 ext 219.

QUANTITY:

Price: $2.00