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Dear ALS Professionals,
During my 12 years as Director of Care Services for The ALS Association Arizona Chapter, I conducted home visits, facilitated support groups, and served on four ALS clinic teams. As I was leaving my position, the family of one of my PALS asked if I’d be interested in translating my real-world knowledge into a trusted, user-friendly website that would help families navigate the ongoing challenges of ALS. The result is Your ALS Guide. |
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This website addresses fundamental topics like care, support, insurance, and equipment and goes into greater depth in our educational guides. We have created 400 educational videos and continue to actively develop new content with ALS professionals and the greater ALS community.
We hope this site will help families make informed decisions, develop support networks, connect with resources, save money, and experience a better quality of life.
We encourage you to share our resources with the families you serve. Below you will find links to some of the guides and content they may find helpful.
You can always email me at [email protected].
Thank you for all you do,
Kim Hughes
Content Director
We hope this site will help families make informed decisions, develop support networks, connect with resources, save money, and experience a better quality of life.
We encourage you to share our resources with the families you serve. Below you will find links to some of the guides and content they may find helpful.
You can always email me at [email protected].
Thank you for all you do,
Kim Hughes
Content Director
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Order Your ALS Guide FliersALS clinics and organizations often share our fliers with families and include them in new patient packets. If you are an ALS professional, you can order free print fliers or download PDFs.
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Newly Diagnosed Guide
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This guide walks families through the most important things they need to know, from diagnosis to next steps to planning ahead. It includes dozens of video clips with Dr. Richard Bedlack and Stacey Asnani, MSW, from the Duke ALS Clinic. Visit guide.
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Home & Daily Living GuideThis practical guide aims to help people living with ALS improve their everyday quality of life and empower both family and paid caregivers with the knowledge, skills, and resources needed to provide the best care possible. Visit guide.
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ALS Equipment GuideWe have created a comprehensive online directory of medical equipment and assistive devices for people living with ALS. Learn about helpful products and purchase them if they are not already covered by insurance or available at a loan closet. Visit Guide.
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ALS Clinics Directory
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We host the most comprehensive, up-to-date directory of ALS clinics in the United States. Families can search by state for clinics that are independent or affiliated with The ALS Association, Muscular Dystrophy Association, or VA. Visit directory.
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ALS Respiratory Guide
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This highly visited guide educates families about ALS respiratory symptoms, support, and devices such as bilevels, ventilators, and cough assist machines. Families will find trusted information, helpful tips, and video clips with experts. Visit guide.
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ALS Power Wheelchair GuideThis educational guide on tilt-and-recline power wheelchairs covers qualifying and ordering, insurance coverage, home accessibility, tilting and reclining, alternate controls, adjustments, accessories, transportation options, and more. Visit guide.
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ALS Braces Guide
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This guide educates families about neck braces, wrist braces, hand splints, and ankle foot braces (AFOs). The guide includes videos and equipment demos with a Certified Prosthetist-Orthotist who has fitted hundreds of ALS patients for braces. Visit guide.
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ALS Self-Care
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This section of our website encourages PALS to practice self-care so they can remain more independent and have a better quality of life. Topics include sleep, nutrition, conserving energy, range of motion, self-advocacy, and driving safety. Visit section.
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About ALSThis section educates families about the disease through straightforward text and video clips with Dr. Bedlack. Topics include symptoms, diagnosis, progression, causes, clinical trials, approved drugs, and alternative treatments. Visit section.
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For Caregivers
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We have a dedicated section that speaks directly to primary ALS caregivers. Topics include coping, self-care, respite care, and how to ask for help. Laura, a former caregiver, shares her insights and tips for coping and caregiving. Visit section.
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