Honoring ALS Awareness Month
May is ALS Awareness Month, a time to recognize those living with Amyotrophic Lateral Sclerosis (ALS) and the families who support them. ALS is a progressive neurodegenerative disease that affects a person’s ability to move, speak, and eventually breathe on their own. Because of the complex and evolving care needs, understanding St. Louis ALS care options is essential for improving quality of life and reducing stress on families.
Whether you’re just beginning to explore care or facing a crisis moment, this guide will help you navigate the full spectrum of ALS care in the St. Louis area—from home support to skilled nursing and hospice.
The ALS Journey: Why Planning Ahead Matters
ALS progresses at different rates, but it always leads to increasing physical limitations. What starts with a slight weakness in a hand or leg can evolve into challenges with walking, eating, and breathing. Early care planning allows individuals and their families to make informed decisions and maintain dignity throughout the journey.
Early-Stage Support: Home and Community-Based Services
In the early stages of ALS, many individuals remain at home with support from family or professional caregivers. Local organizations in St. Louis offer:
- In-home personal care and nursing
- Physical, occupational, and speech therapy
- Assistive devices and home modifications
- ALS-specific support groups and education
This stage is also a good time to begin long-term care planning and connect with specialists in ALS care.
When Skilled Nursing May Be Needed
As ALS advances, care needs often outpace what can be safely managed at home. Families should consider transitioning to a skilled nursing facility when:
- The person needs 24/7 supervision or medical care
- There is increased risk of falls, infections, or respiratory failure
- Feeding tubes, ventilators, or advanced mobility support are required
- Caregiver burnout becomes significant
When evaluating St. Louis ALS care options, look for skilled nursing facilities with:
- Experience caring for ALS or similar neurodegenerative conditions
- Respiratory support and on-site therapy
- A person-centered care approach
- Communication aids for non-verbal residents
VOYCE’s ombudsmen help monitor quality and advocate for residents in over 500 long-term care communities across eastern Missouri.
Understanding Hospice and When to Consider It
Hospice care provides comfort and dignity during the final stages of life. It’s not about giving up—it’s about choosing compassionate care focused on quality of life. For people living with ALS, hospice may be appropriate when:
- Life expectancy is estimated at six months or less
- There’s a desire to stop aggressive treatments
- Symptoms like shortness of breath, weight loss, or infections worsen
- Emotional and spiritual support becomes a priority
Hospice services in St. Louis can be delivered at home, in nursing homes, or in dedicated hospice centers.
Legal and Planning Considerations
Because ALS can eventually impair communication and decision-making, early planning is essential. Families should:
- Complete advance directives
- Appoint a healthcare power of attorney
- Discuss feeding tubes, ventilators, and life support preferences
- Explore insurance, Medicaid, and Medicare options
VOYCEconnect can help you understand what resources are available and connect you with trusted care providers.
Local Resources for ALS Care in St. Louis
Families exploring St. Louis ALS care options can turn to these specialized local resources:
ALS Association – St. Louis Regional Office
- Care coordination, equipment loans, support groups
Website: www.als.org/mid-america
Phone: (314) 876-7008
Washington University ALS Center at Barnes-Jewish Hospital
- Multidisciplinary care, research, therapy, and respiratory support
Website: https://alscenter.wustl.edu/
Phone: (314) 362-6981
St. Louis University Hospital – Center for Neuromuscular Diseases
- Diagnosis and treatment of ALS and related conditions
Website: https://www.slu.edu/medicine/neurology/index.php
Phone: (314) 977-6082
VOYCEconnect
- Personalized help finding long-term care, hospice options, and care advocates in eastern Missouri
Website: www.voycestl.org/voyceconnect
Phone: (314) 919-2403
You Don’t Have to Do This Alone
ALS is overwhelming, but with the right support, you don’t have to navigate it alone. Whether you’re seeking in-home help or trying to choose the right nursing facility, there are trusted St. Louis ALS care options available to support your journey.