Caregiver Seminars Help Those
Who Help Others

By Dawn Muroff

In honor of National Family Caregiver’s Month, which is observed every November, our Chapter offered a variety of programs for the numerous relatives, friends and professionals who care for PALS.

On November 1, 2008, our Caregiver Seminar took place at the Los Angeles North/Glendale Hilton. Over 50 participants gathered for the day to learn self care and caregiving techniques, ask questions, and interact with vendors. In addition, they took full advantage of the opportunity to share information and get to know one another.

Welcoming remarks were made by Barbara Frova, who serves as Chapter Trustee and Chair of the Patient Services Committee; and Fred Fisher, our Chapter President and CEO. Two staff members of our Cedars-Sinai Center for ALS Care gave the opening presentations. Linda O’Connor, LCSW - Clinical Social Worker, spoke on "Self Care Strategies for Managing Stress." She was followed by Hope Gruendler, RN, MSN, CNS, Clinical Program Coordinator, who gave a comprehensive overview of "ALS Skin Care."

After lunch, Robbin Howard, DPT, NCS, Assistant Professor of Clinical Physical Therapy at USC, gave a lively presentation on "Hoyer Lifts and More: Protecting Yourself and Your PALS." For the latter half of her presentation, she was joined by David Beals, ATS, of Superior Mobility for a Hoyer lift demonstration. Attorney Daniel Bergman, of Bergman Law Group, described various legal issues that are faced by PALS and their family members and suggested a number of preventative measures they can take in order to protect themselves. Mr. Bergman, an Advisory Trustee for our Chapter, offers a variety of his services to PALS and FALS on a pro-bono basis.

To close the event, Carol Hounsell shared her personal experience of coordinating a Circle of Care for a close family friend. She provided step-by-step instructions, with accompanying handouts, to guide others in creating a smoothly functioning team made up of family, friends, neighbors, and anyone else connected with a PALS who is available to provide assistance. She emphasized that this not only helps the PALS and FALS in innumerable ways, but is a priceless experience for those who play a part in this network of support and compassion.

An attendee, whose brother has ALS, expressed tremendous gratitude as the seminar wrapped up. "Thank you for all your support! Every session was quite informative." This attendee was also pleased with the handouts. "I can go home and share this information with my family," she said.

In an effort to support, educate, and empower as many individuals in our service area as possible, we also held separate "Caregiver Days," from October through December, at six of our support group sites. They took the place of a regular support group meeting, and ran 3-4 hours. Many participants expressed appreciation for the proximity of these programs to their homes, since they can’t be away from their caregiving responsibilities for long periods of time.

The programs consisted of presentations, discussions, and time for caregivers to meet one another over refreshments and/or lunch. The support group leader and case manager(s) who regularly staff the support group were available to participants throughout the day.

Speakers’ topics included: Respiratory Care, Locating Quality In-Home Care, Proper Body Mechanics and Self Care, Resources to Assist PALS with Activities of Daily Living, Transfer Training (mechanical transfers included a Hoyer lift demonstration), Tools for Coping with Caregiver Stress, Creating a Circle of Care, and Caring for Your Back & Relaxation Techniques.

Some attendees were just beginning their ALS education. An attendee, whose husband was diagnosed in August, stated, "This is a disease we knew nothing about. The seminar was really informative. I enjoyed it. The physical therapist and his assistant showed us how to move someone…I learned how not to hurt myself while moving my husband."

A FALS who attended multiple seminars said, "Every time I come to one of these there is so much to learn. It was invaluable. The vendors were excellent."

We are grateful to the following Caregiver Day presenters for sharing their time and wisdom with us: David
Erickson, OTR/L - Loma Linda University Medical Center MDA Clinic; Leslie Frank, DP - Bodyscape; Integrative Physical Therapy; Bruce Gingles, RCP - PulmoCare Respiratory Services; Carol Hounsell and Brenda French - Caregiver Support Group Services; Vahid Kabiri, PT, and Maicze Cheng - HEALTHSOUTH; Carolyn Kopp, MS, CMC - Family Consultant, Coast Caregiver Resource Center; Carol Anne Perini, RN - Director of Education, Cambrian Home Care; Shannon Swinehart, PT - Senior Therapist, Outpatient Rehabilitation - Loma Linda University Medical Center; Gladys Zobel - Director of Family Services, Alzheimer’s Disease Association of Kern County.

We also extend our heartfelt thanks to our Caregiver Seminar Sponsors:
Buena Vista Hospice
Home Respiratory Care
Maxim Healthcare Services
Mobility Works Adaptive Vehicles
Oxyfresh.com
Superior Mobility
Tobii ATI

And our Caregiver Day Sponsors:
Albertsons Westlake Village
Brent’s Deli
PJ Salameh, Massage Therapist
Rita Cellura, R & R Body Works and Massage
Vicky Minniss, Mary Kay Consultant