Living with amyotrophic lateral sclerosis (ALS) brings many changes. The goal of treatment is not only to manage symptoms but also to help you live life to the fullest. Care focuses on mobility, comfort and independence.
At Banner Brain & Spine we want to help you every step of the way and work with you to create a personalized plan for you and your family.
Is there a cure for ALS?
Currently, there is no cure for ALS, but treatment and expert care can help. Many people live longer and stay more active with early, coordinated care. Your plan may include medicines, therapies, equipment and support for you and your caregivers.
What you can expect from ALS treatment:
- Focus on quality of life: Your care team helps reduce symptoms, prevent problems and keep you active.
- Slow disease progression: Some prescription medicines may slow how fast ALS affects your body.
- Support at every stage: Your care plan changes as your needs change.
- Ongoing research: New therapies and clinical trials are being studied. Your team can help you explore options.
Everyone’s journey is different. Your care team can discuss in depth what to expect and guide you through the process step by step.
Medications use to threat ALS
The U.S. Food and Drug Administration (FDA) has approved medications to help slow ALS or manage its symptoms.
Disease-modifying medications
Medications can be used to help slow progression of the disease. They include:
- Riluzole (Rilutek, Tiglutik): This drug may reduce damage to motor neurons caused by excess glutamate, a chemical messenger in the brain. It can extend survival. Riluzole comes in tablet or liquid.
- Edaravone (Radicava, Radicava ORS): An antioxidant that may slow loss of physical function. Given as IV infusion or oral liquid.
- Tofersen (Qalsody): Designed for a rare, inherited form of ALS caused by mutations in the SOD1 gene. It is given by spinal injection.
Symptom-management medication
Your health care provider might also prescribe treatments for relief of other symptoms, including:
- Nuedexta: Helps with sudden, uncontrollable laughing or crying (pseudobulbar affect)
- Muscle stiffness and cramps
- Excess saliva (drooling)
- Mood changes
- Sleep and energy
Therapies that help manage ALS symptoms
Therapies can help you move, communicate, eat and breathe more easily.
- Physical therapy (PT): PT helps with movement and pain. Your physical therapist can teach gentle stretches, range-of-motion exercises and energy-saving tips. PT also helps prevent stiffness and teaches safe ways to move or transfer.
- Occupational therapy (OT): OT helps with daily activities like dressing, bathing, cooking and using devices. Your occupational therapist may suggest home changes, like grab bars, shower chairs, ramps or different seating options, to make life safer and easier.
- Speech-language therapy: Speech-language pathologists help with speech and swallowing. They can teach techniques to speak clearly and recommend communication tools. They also guide safe eating to avoid choking.
- Respiratory therapy: Breathing muscles can weaken over time. Early respiratory therapy focuses on teaching airway clearance techniques, cough support and breathing exercises. Noninvasive ventilation (often called BiPAP) can help you breathe more easily and sleep better.
- Nutrition support: Good nutrition helps your strength and energy. A registered dietitian can help you get enough calories and protein, choose safe textures and plan meals. They also monitor weight loss and dehydration, which can happen as swallowing becomes more difficult.
Assistive devices and equipment
Tools can help you stay independent and safe. Your care team will help you and caregivers choose, fit and learn to use the equipment, and they can coordinate updates as your needs change.
Mobility and daily living aids
- Canes, walkers and ankle-foot orthoses (braces)
- Manual or power wheelchairs
- Transfer boards, lift systems and adjustable beds
- Adaptive utensils, dressing aids and bathroom safety items
Communication tools
- Speech-generating devices that speak what you type
- An eye-tracking or head-mouse system if hand movement is limited
- Voice banking early on, so devices can use a recording of your own voice later
Swallowing and nutrition support
- Blenders, thickening agents and safe-texture meal plans
- Feeding tubes (such as PEG) are used when needed for proper nutrition
Breathing support
- Cough-assist devices and suction machines
- Noninvasive ventilation (BiPAP) for sleep or daytime use
- In some cases, invasive ventilation may be considered based on your goals and values
Therapists and care coordinators can help with equipment orders, insurance and training.
Palliative care, hospice care, emotional health and caregiver support
Palliative care helps people with serious illnesses manage their symptoms and improve their quality of life. It can help people who have an incurable, progressive illness transition to a care system that focuses on quality of life and comfort rather than medical interventions.
Hospice care may also be considered as ALS progresses. Hospice provides comfort-focused support at home or in a facility. Hospice is a program that provides you and your family with caregiving needs, necessary equipment and medications. All therapies in hospice are focused on quality of life, reducing pain and anxiety.
Support services may include:
- Help with pain, shortness of breath, sleep and anxiety
- Counseling and spiritual support
- Decisions about feeding tubes or ventilation
- Advance-care planning, so your wishes are known and honored
Caregivers also need support. Banner Brain & Spine can connect families with local respite care, support groups, mental health services and community programs.
Your ALS care team at Banner Brain & Spine
ALS care is a team effort. At Banner Brain & Spine, our multidisciplinary team approach brings together multiple experts in a single, coordinated plan, often during the same visit or through virtual care.
You will have regular check-ins and a direct contact for questions between visits. If you receive care across Banner Health locations or need hospital services, we share information so you don't have to repeat your story.
You also have opportunities to explore clinical trials or research-based treatments, when appropriate.
How to get started
Early care leads to better outcomes. If you or a loved one has ALS, or you’re being evaluated for ALS, reach out now. We will explain your options, answer your questions and plan the next steps.
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