If you’ve been diagnosed with ALS—or care for someone who has—below are some resources you might find helpful.
ALS Association Services
Some of the services offered right here at the ALS Association of Texas:
- Support Groups – Connect with others who understand what you are going through and can provide emotional support.
- ALS Texas Clinics and Centers – Located in Houston, San Antonio, and Austin.
- Assistive Equipment and Technology – Devices that are often helpful to ALS patients and which may be available through our Equipment Loan Program.
- Navigating the System – Help in dealing with the ins and outs of Medicare.
- Military Veterans – Assistance in signing up for military benefits.
- Clinical Trials – Information on how ALS patients can help find a cure by participating in clinical trials.
- Research News – The latest in the world of ALS research.
- Stories of Courage – A look inside the lives of people with ALS who strive to achieve a good quality of life and make a difference in the world.
- ALS Texas Blog – Local news and stories of Texans living with ALS.
- Care Connection – The Care Connection program helps you organize a network of volunteers within your community to assist with any needs you may have. For example, you can schedule volunteers to help with household chores, run errands, or prepare meals.
“Living With ALS” Manuals
These 11 free manuals go in-depth about the disease and how to handle the different challenges you may face, from coping emotionally to dealing with advanced symptoms. You can find them all here or download individual manuals directly (all in PDF format):
- What is ALS? – An introductory resource guide for living with ALS – an overview, what it is, and how it affects your body.
- After the ALS Diagnosis: Coping with the “New Normal” – Addresses the psychological, emotional, and social issues you face when your life is affected by ALS.
- Changes in Thinking and Behavior in ALS – Addresses how thinking and behavior may be affected by ALS.
- Living with ALS: Planning and Decision Making – Reviews areas where careful planning and decision making will be required and helps you and your family plan for the future.
- Understanding Insurance and Benefits When You Have ALS – Provides strategies and helpful hints to better navigate health insurance and benefits.
- Managing Symptoms of ALS – Discusses a variety of symptoms that may affect you when you have ALS.
- Functioning when Mobility is Affected by ALS – Covers the range of mobility issues that occur with ALS.
- Adjusting to Swallowing Changes and Nutritional Management in ALS – Helps you understand how swallowing is affected by ALS and what you can do to maintain nutrition for energy and strength and to keep your airway open.
- Changes in Speech and Communication Solutions – Covers how speech can be affected by ALS and explores a variety of techniques, technologies, and devices available for improving communication.
- Adapting to Changes in Breathing When You Have ALS – Explains how breathing is affected by ALS.
- Approaching End of Life in ALS – Examines thoughts and feelings about dying and end of life.
The ALS Association puts out a few free publications online:
- Vision Magazine – A twice-yearly magazine with news about research, care, government initiatives, ALS awareness, fundraising efforts, and other subjects important to the ALS community.
- Research ALS Today – Another twice-yearly periodical featuring in-depth coverage of current research projects and clinical trials.
- ALS Insight – A national monthly newsletter sent via email.
- ALS Texas Newsletter – Our state chapter’s newsletter. Stay to stay up-to-date on ALS research, upcoming events, and how ALS Texas is helping patients in your community.
A few books that ALS patients and caregivers might find interesting or helpful:
- The Dysphagia Cookbook – Recipes for people with chewing and swallowing difficulties.
- Easy-to-Swallow, Easy-to-Chew Cookbook: Over 150 Tasty and Nutritious Recipes for People Who Have Difficulty Swallowing – As the title says, this book contains recipes that make eating enjoyable and satisfying for anyone who has difficulty chewing or swallowing. It also shares helpful tips and techniques to make eating easier.
- The Caregiver’s Survival Handbook: How to Care for Your Aging Parent Without Losing Yourself – Written specifically for women (though not specifically for ALS caregivers), this book offers practical caregiving advice and also helps you deal with the emotional concerns you might face.
- Caregiving: The Spiritual Journey of Love, Loss, and Renewal – Written by a caregiver, it explores medical and financial problems, spirituality, and such issues as depression, stress, housing, home care, and end-of-life concerns.
- Last Flight Out: Living, Loving & Leaving – A woman’s memoir of her fighter pilot husband’s experience with ALS.
There are many other outside resources available online, from ALS discussion forums to special resources for teens and young adults. You can find a full list of external ALS resources here.