Les Turner ALS Resource Guide
The third edition of the Les Turner ALS Foundation Resource Guide provides information and resources for people living with ALS, family members, caregivers and health professionals. Assembled by the staff of the Lois Insolia ALS Clinic at the Les Turner ALS Center at Northwestern Medicine and members of the Support Services Team, the Resource Guide is available online for viewing, downloading and printing.
Reading all 11 sections at one time can be overwhelming to persons with ALS and their families. We highly recommend that you focus on the information that pertains to your present circumstances.
Resource Guide for People Living with ALS (Full Guide with All Sections)
Section 1: ALS Overview
Section 2: Medication and Drug Research
Section 3: Coping with ALS
Section 4: Resources for Daily Living
Section 5: Caring for Persons with ALS
Section 6: Nutritional Support
Section 7: Speech
Section 8: Respiratory Care
Section 9: Insurance, Financial and Legal Issues
Section 10: Genetics
Section 11: Useful Resources
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My ALS Communication Passport to Quality Care
My ALS Communication Passport to Quality Care is a tool for individuals living with ALS and their families. The 12-page Passport document, which is available in hard copy at the Les Turner ALS Foundation office or online, helps caregivers, nursing and medical staff better understand the care needs and preferences of people living with ALS. For the person diagnosed with ALS, this booklet can serve as a valuable tool to chart important information, including "things you must know about me,” such as allergies, current medications, and sleeping patterns. In addition, there are pages available to note "my likes" and "my dislikes" and to list the names and contact information for physicians and family members.
The Communication Passport empowers the person living with ALS to share who they are and how they would like to be treated by others. Conveying this information is especially important if the individual living with ALS is unable to verbally communicate and are in an emergency situation. It’s also a useful tool to go over with a hired caregiver. Having all relevant information in one place has proven to be a convenient resource for both the person living with ALS and those involved in their care plan.