Care Services Educational Material Updates

Living with ALS Resource Guides

Over the last year and a half, The ALS Association has been working with authors from ALS Association chapters, ALS Treatment Centers or Excellence and Recognized Treatment Centers, and other ALS organizations to rewrite the original Living with ALS resource guides, adding new and relevant content. The series has been developed for people living with ALS, family members, caregivers, and people interested in learning more about ALS. The guides include information on:

• What is ALS? An Introductory Resource Guide for Living with ALS
• After the ALS Diagnosis: Coping with the “New Normal”
• Changes in Thinking and Behavior in ALS
• Living with ALS: Planning and making Decisions
• Understanding Insurance and Benefits When You Have ALS
• Managing Symptoms of ALS
• Functioning When Mobility is Affected by ALS
• Adjusting to Swallowing Changes and Nutritional Management in ALS
• Changes in Speech and Communication Solutions
• Adapting to Changes in Breathing When You Have ALS
• Approaching End of Life in ALS

We are pleased to let you know that the collection of 11 guides are now available to view and download from our website. They can be accessed at: http://www.alsa.org/als-care/resources/publications-videos/resource-guides/

Guide for Talking with and Supporting Children and Youths

Additionally, The ALS Association has been working with Dr. Melinda Kavanaugh, an Assistant Professor of Social Work at the University of Wisconsin, to research, write, and produce a comprehensive guide for youths and families. Families and ALS: A Guide for Talking with and Supporting Children and Youths is the result of many years of clinical social work practice and research with families, children, and youths affected by neurological illness. While much attention is paid to the person with ALS and their adult family member/caregivers, children and youths are often voiceless, despite experiencing much of the same shock, sadness, caregiving, and grief as their adult counterparts.

Medical Information Packet

Finally, we are producing a comprehensive medical information packet and wallet card, which have been developed as communication and educational tools to help inform medical providers as well as provide pertinent insurance and family information. They may be used as a packet or as individual pages, based on individual preference and need. The wallet-sized z-card has been developed to include those fundamentally important key considerations in an emergent situation. It can be printed and folded to fit easily in a wallet, pocket, car glove compartment, etc.

The resource guides and medical information packet materials are currently being printed and we expect to have these items available on The ALS Association Care Services Order Portal sometime in the next few weeks. The Care Services Order Portal can be found HERE. The electronic versions will be available to view and download from our website, www.alsa.org, sometime in the next two weeks.