Acknowledgments
This book is a rewrite and expansion of MDA’s 1997 publication, When a Loved One Has ALS: A Caregiver’s Guide. That book was revised twice, but after a decade it was clear that a revision wasn’t enough. Much had changed — new information, new resources, new insights. Most important, comments and requests from caregivers and from MDA staff made it obvious that it was time for a new book.
In addition, this book is a companion piece to MDA’s 2005 publication, Everyday Life With ALS: A Practical Guide. While Everyday Life is written for the person with ALS, and focuses on techniques and equipment for daily living at various stages of the disease, this new book is addressed to the family caregiver, whose experience of ALS is certainly as intense and all-consuming as that of the person with the disease. Together, these two books are intended to guide families living with ALS to answers to many of the questions that arise in that experience.
The MDA ALS Caregiver’s Guide is most indebted to those caregivers who’ve corresponded with us, participated in Web discussions and been interviewed for articles in the MDA/ALS Newsmagazine. Their candid sharing of their personal experiences, questions and emotions guided MDA’s staff in deciding what issues should be addressed in this book.
Tremendous gratitude also goes to the ALS experts who reviewed the content and helped shape the book into an accurate, helpful volume. These include:
- Valerie Cwik, M.D., MDA medical director and vice president — Research
- Annie Kennedy, MDA vice president – Advocacy
- Augie and Lynne Nieto, co-chairpersons, MDA ALS Division
- Joshua Benditt, M.D. Director of Respiratory Care Services University of Washington School of Medicine Seattle
- Greg Carter, M.D., Codirector MDA/ALS Center at the University of Washington Medical Center Seattle
- Jane Howard, M.D., Codirector MDA/ALS Center at Vanderbilt University Medical Center Nashville, Tenn.
- Rebecca Axline, L.C.S.W. Clinical Social Worker MDA/ALS Center at Methodist Neurological Institute Houston
- Jodi Bales, O.T.R./L Clinical Supervisor Forbes Norris MDA/ALS Research Center San Francisco
- Kate Bednarz, R.D. Clinical Research Coordinator Eleanor and Lou Gehrig MDA/ALS Research Center Columbia University New York
- Louie Boitano, M.Sc., R.R.T. Pulmonary Clinic, Northwest Assisted Breathing Center University of Washington Medical Center Seattle
- Winston Cheng, M.S., CCC-SLP Section Chief, Speech-Language Pathology Columbia University Medical Center New York
- Ginna P. Gonzalez, M.S.N., A.R.N.P. Director of Nursing Kessenich Family MDA/ALS Center University of Miami Miami, Fla.
- Ellen Ladage, R.D., C.N.S.D., L.D.N. Nutritionist MDA/ALS Center at Vanderbilt University Medical Center Nashville, Tenn.
- Amy Roman, M.S., CCC-SLP Augmentative Communication Specialist Forbes Norris MDA/ALS Research Center San Francisco
- Ron Trasky, L.C.S.W. Centennial, Colo.
In addition to MDA’s Publications staff, the following members of the MDA team deserve special acknowledgment: Michelle Morgan, vice president – Health Care Services; Scott Wiebe, director of Outreach Initiatives; Anne Swisher, divisional health care service coordinator, Houston; Susan Whatley, health care service coordinator, Nashville; and Paula Orandash, health care service coordinator, and Jamie Morrone, case aide, Orlando, Fla.
Several families who are living with or have lived with ALS were kind enough to review drafts of this guide and provide feedback to improve the content. We deeply appreciate the contributions of:
Diane and John Huberty, Fort Wayne, Ind.; Jeff and Lisa Lester, Lebanon, Mo.; Steven and Helene Nichols, Clifton, Va.; and Beckie Poucher, Winterville, N.C., who lost her husband, Rick, to ALS in 2006.
The quotations used throughout the book are all from ALS caregivers or people with the disease. Unless otherwise credited, they were taken from previously published MDA materials or from Internet discussions, especially the invaluable Living With ALS list serv at http://health.groups.yahoo.com/group/living-with-als.
A word about the photography. Several new photos were shot just for this guide by David Ricketts, MDA health care service coordinator in Salt Lake City, who went above and beyond the call of duty with talent, grace and sensitivity.
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| The cover photo, taken in 2007, captures a moment in the life of the Stafne family of Minneapolis: Kirsten, Scott and daughter Eva. Scott received an ALS diagnosis in 2004. The Stafnes since have welcomed another daughter to their family, Miranda, born in 2008. |
Many thanks to the families who consented to pose for new photos: Gary T. Cothrun II of Tucson, Ariz.; Augie and Lynne Nieto of Corona del Mar, Calif.; William F. and Joleen D. Barker of Farmington, Utah; Betty Lamb and Vincent Villella of Midway, Utah; Rick, Tamara and Emily Tuttle of Orem, Utah; Maddie Christensen of Riverton, Utah; James and Karla Peery and Heather and Jeff Bissegger of Salt Lake City; and Alan R. and Shaun Alderman of South Jordan, Utah.
A number of photos were used in previous MDA publications and a few were provided by family members
for this guide. Among those pictured are: Jimmy and Barbara Adams, Frank Andrews, Darlene Bates and grandson Noah, Ron Edwards, Marcie Gibson and Share the Care friends, Glenn and Joan Graham, Richard and Pam Holland, Glen Houston and physical therapist Jeanine Schierbecker, Diane Huberty and family, Karen Jorgensen and Patricia O’Connor, Jeff Lester and family, Steve and Helene Nichols, Lee and Leonard Picton, Don Taylor, Nick Vatsis, Daryll and Sonia Victorio, Bill Wilcoxson and son-in-law Jeff Lascheid, Cathy Wolf, and Vicki Wolff and granddaughter Kaity.
And finally, deep appreciation goes out to all caregivers, who inspire us daily with their stamina, humor, ingenuity and love.
The MDA Publications team |
