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, Dallas, 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.
- 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.
- The Patient Advocate Foundation ALS Medicare Resource Line
- The Oley Foundation can help with Peg tube needs.
- Here for Texas Mental Health Navigation Line – 972-525-8181. The Here for Texas Mental Health Navigation Line is a free help line offering guidance, information, resources, and support for mental health and substance abuse issues.
“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 in English or Spanish 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. Download it in English or Spanish.
- 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. Download it in English or Spanish.
- Changes in Thinking and Behavior in ALS – Addresses how thinking and behavior may be affected by ALS. Download it in English or Spanish.
- 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. Download it in English or Spanish.
- Understanding Insurance and Benefits When You Have ALS – Provides strategies and helpful hints to better navigate health insurance and benefits. Download it in English or Spanish.
- Managing Symptoms of ALS – Discusses a variety of symptoms that may affect you when you have ALS. Download it in English or Spanish.
- Functioning when Mobility is Affected by ALS – Covers the range of mobility issues that occur with ALS. Download it in English or Spanish.
- 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. Download it in English or Spanish.
- 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. Download it in English or Spanish.
- Adapting to Changes in Breathing When You Have ALS – Explains how breathing is affected by ALS. Download it in English or Spanish.
- Approaching End of Life in ALS – Examines thoughts and feelings about dying and end of life. Download it in English or Spanish.
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.
Resources for having tough conversations about advanced serious illnesses and ALS with children and families
Grief Out Loud is a series produced by the Dougy Center for Grieving Children
- Episode 19: Advanced Serious Illnesses
- Episode 67: Creating Legacies in the Face of a Terminal Illness
- Episode 8: Living in Dying, Dying in Living: Grieving Before Death
Below are organizations we can list as possible resources for Anticipatory Loss, Bereavement and Grief Resources in Texas that offer free counseling and peer support to youth, children, and in some cases, young adults up to age 25.
Wonders and Worries – Austin and San Antonio
Wonders & Worries provides free, professional support for children and teenagers through a parent’s serious illness. Working with each family to determine if the child or teen would thrive best in individual sessions or group sessions. For example, siblings may meet together or have separate support plans. Using the exclusive Wonders & Worries Illness Education and Coping Curriculum, the sessions are customizable. The individual sessions are free of charge and available for ages 2-18.
The Christi Center – Austin and Central Texas
The Christi Center helps build wellbeing by offering people who have experienced the death of a loved one the opportunity to connect with others. When grief is not endured in isolation or ignored, our community is stronger, and helps our clients weather all of life’s storms. We offer support groups where people connect and find a safe space to explore the emotions that are part of the grief process, activities to help maintain a healthy relationship with the deceased, and community education so that we are all better equipped to help the grieving people in our lives. Understanding that grief does not have a cure, but requires ongoing maintenance, our services are available for however long they are needed, and are always free of charge. We serve children, teens, and adults, supporting people at all stages of the life cycle, in order to build a healthier culture around death and grief. Our services are open and available to Austin and all of Central Texas, with group locations across the Austin area and in Williamson County.
Journey of Hope – Dallas, Plano, and Frisco
Journey of Hope Grief Support Center is a non-profit organization dedicated to providing group grief support to children, adolescents, and their parents or adult caregivers who have lost a loved one to death; there is no fee for our services. Journey of Hope offers these services in a warm, caring, and nurturing environment where the feelings of grief, pain, and loss may be expressed. Trained volunteer group facilitators lead participants in their personal journey toward healing and healthy reconciliation of their grief. Presently, our program is the only open-ended one that focuses on the needs of children and their families. Those we serve determine when to begin and how long to attend Journey of Hope.
ChristianWorks – Dallas and Fort Worth
With its foundation deeply rooted in Christian principles, the purpose of ChristianWorks for Children is to help children and their families meet and overcome even the most difficult challenges in their lives. We strive to facilitate the building of a healthy, loving family for every child we meet. Through their flagship, GriefWorks, program they provide a safe and loving environment where children and teens can share their stories of loss and explore their grief openly. Our GriefWorks program is a free grief support groups for children ages 5-18 and their families. Agency does not work with anticipatory loss. Groups are Free; Individual services are based on a Sliding Scale.
New in 2020, ChristianWorks will launch its very own summer bereavement camp for kids.
Children’s Grief Center of El Paso – El Paso
A non-profit organization that provides healing and hope in a safe and loving environment for grieving children, teens and their families following the death of a loved one. By sharing their experiences and feelings in a peer support group, families learn that they are not alone and that there is hope for their future. Peer grief support groups are held for children 5-18 and their parents or guardians and young adults 18-25. Group sessions allow families to interact with peers who have suffered similar loss and to express their fears, anger, guilt and sadness in a safe and loving environment. Utilization of art, music, therapeutic pets and other tools help promote the healing process.
Agency can do a one-time individual session with families experiencing anticipatory in El Paso.
The WARM Place – Fort Worth
The WARM Place is a nonprofit agency that provides peer-support groups for children and their families after the death of a loved one. Founded in 1989, The WARM Place has companioned over 38,000 children and their families along their grief journey. Our program, led by trained volunteers, provides a safe environment for children to express feelings and emotions as well as the opportunity to meet with children and families who are experiencing situations similar to their own. Families are never charged a fee for our services, there are no geographical limitations, and no time limits – families are welcome to participate as long as the children are receiving benefit from the program.
Bo’s Place – Houston
Services for Adults: Open, ongoing support groups are available for people who have lost children or spouses. Spanish speaking groups are available. No individual services are available. Services for Children: Groups are offered for children ages 3-18, for the Loss of a Parent or Sibling-Services are not available for anticipatory loss. Services are free.
Family Tree Program – Dallas and Denton
Free counseling services for families who are experiencing difficult changes.