Living with ALS

Being diagnosed with amyotrophic lateral sclerosis (ALS) changes life in many ways. ALS affects your muscles, making it harder to move, speak, eat or even breathe. But living with ALS is more than dealing with symptoms. It’s about finding new ways to cope, getting support and protecting quality of life for you and your loved ones.

At Banner Brain & Spine, we know the physical, emotional and practical challenges of ALS. We’re here to help you manage daily life and connect you to the support you need.

What it’s like to live with ALS

ALS affects people differently. It can be hard to know how fast the disease will progress. You may notice:

• Physical changes: Your arms, legs or hands may get weaker. Walking, lifting or daily tasks can become harder. Speaking, swallowing and breathing may also be affected over time.
• Emotional changes: You may experience feelings of sadness, frustration or anxiety. Loved ones may feel the same as they adjust alongside you.
• Changes in how you see yourself: Living with ALS can affect your mood, motivation or sense of purpose.
• Independence changes: Once-easy tasks, such as dressing, cooking, or writing, may now require extra help or specialized tools.

Living with ALS isn’t only about medical care. It’s also about keeping dignity, staying connected to loved ones and finding joy in everyday moments. 

Learn more about the symptoms of ALS.

Daily challenges and how to handle them

Even with ALS, you can stay active and independent for as long as possible. Small changes can make daily life easier. 

• Eating and swallowing: Speech therapists and nutrition experts can teach safe ways to eat. Special cups, utensils and tools can help.
• Moving around: Physical therapy, mobility aids and simple home changes can reduce fall risks and help you stay active.
• Speaking and communication: Speech therapy, voice banking and communication devices or apps can help you stay connected.
• Personal care and safety: Home changes like grab bars or shower chairs, assistive equipment and caregiver support make bathing, dressing and daily routines easier. 
• Caregiver help: Sharing responsibilities between family, friends and home health aides can reduce stress and keep everyone safe. 

Learn more about treatment and care.

Emotional and mental health

ALS affects not just the body but also the heart and mind. Coping with ALS may cause emotional strain and caregiver burnout. 

Ways to cope:

• Talk with a counselor or therapist to process feelings and build coping strategies.
• Join a support group to connect with people who understand ALS.
• Try stress-relief practices such as meditation, deep breathing, journaling or gentle exercise to help manage stress.
• Caregivers should take breaks and ask for help when needed.
• Share your feelings with loved ones to feel less alone.

Making important decisions

ALS may mean planning ahead for your care. It can be difficult to think ahead, but planning early can help you feel more in control:

• Advance care planning: Create advance directives and living wills to ensure your wishes are honored.
• Financial and legal planning: Meet with a financial advisor or an elder law attorney to prepare for medical costs, insurance and legal documents, such as powers of attorney.
• Long-term care options: Exploring home care, hospice or assisted living before you need them can provide peace of mind.
• Technology support: Devices for communication, mobility and daily living can help you stay independent. 

Talk with your health care team about these choices to make transitions easier.

Support for ALS caregivers

Caring for someone with ALS is an act of love, but it can also be hard. You may be helping with meals, medications, hygiene and emotional support. Over time, the role may grow as your loved one’s needs change.

Caregiver tips:

• Learn safe ways to lift, feed or bathe your loved one. 
• Take regular breaks to rest and recharge.
• Learn about the disease so you can anticipate needs and provide better support.
• Accept help from family, friends or home health aides. 
• Join a caregiver support group or talk with a counselor.
• Discuss limits, needs and feelings with the person you care for.
• Look into financial and legal resources early on.

You don’t have to do this alone. Banner Brain & Spine offers support to both caregivers and patients. 

Finding community and support

You don’t have to face ALS alone. Many organizations and programs can help:

• The ALS Association: Offers support groups, loaned equipment and education on living with ALS. 
• Muscular Dystrophy Association (MDA): Provides research funding, clinic referrals and patient resources. 
• National Institute of Neurological Disorders and Stroke (NINDS): Offers current research and information about ongoing clinical trials. 
• Banner Health social work services: Help connect you with local assistance, counseling or care coordination. 
• Benefits.gov and Disability.gov: Tools to learn about financial, caregiving and housing support options.
• U.S. Department of Veterans Affairs (VA): Provides medical benefits for all veterans diagnosed with ALS. 

Even small connections, like online forums or community groups, can help you feel less isolated and more empowered.

Why Banner Brain & Spine supports the whole ALS journey

ALS care should go beyond medical treatment. Our multidisciplinary team, including neurologists, therapists, social workers and palliative care specialists, partners with you to provide comprehensive and compassionate support.

From the first diagnosis through every stage of ALS, we work alongside patients and families to ensure comfort, dignity and meaningful living.

Talk to a Banner ALS specialist

No matter where you are in your ALS journey, you don’t have to walk it alone. Our specialists are here to answer questions, guide care and connect you with the right resources.

Schedule an appointment with one of our ALS providers today.