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 six 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’s It All About? – Details about ALS, insurance coverage, employment issues, income, and benefits.
- Coping With Change – Discusses how to cope with the disease mentally and emotionally.
- Managing Your Symptoms and Treatment – An overview of treatment options for different ALS symptoms.
- Functioning When Your Mobility Is Affected – Talks about the therapies, equipment, changes to your home, and changes to your daily activities that can help you manage mobility symptoms.
- Adjusting to Swallowing and Speaking Difficulties – Tactics and devices that can help patients with bulbar symptoms.
- Adapting to Breathing Changes – Information about how ALS affects the lungs and breathing muscles and the ventilation options available.
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.