ALS support and services

Resources for people living with ALS

An ALS diagnosis is a challenging one. Learning to live with it can be a true test of your resilience and hope. However, you don’t have to go through it alone. There are many forms of support available for managing symptoms, maintaining independence and planning for your evolving needs.

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Interdisciplinary care is the best way to support your health

Research has shown that working with an interdisciplinary care team helps people with ALS live better lives – in some cases, even extending life by up to six months. At our neuroscience locations, you can meet with multiple specialists each time you visit, and they’ll collaborate with each other over the course of your ALS care. Here are some of the specialists that you may work with and how they can help you.

Rehabilitative services

Since ALS affects the connection between your brain and your muscles, rehabilitative services like physical therapy and occupational therapy can help you maintain those connections with strength, mobility and skills training that’s personalized to you. Therapists from these disciplines can also give you guidance on possible home modifications and caregiver training, as well as help you get durable medical equipment. Similarly, a speech therapist can help you with swallowing or communication concerns, including getting assistive communication devices.

Mental health care

Living with ALS can take a lot of resilience as well. Psychologists and counselors can help you and your loved ones work through emotions, find coping strategies, and introduce you to other tools for maintaining your mental and emotional well-being. A social worker can also connect you to additional resources – from support groups to financial planning tools and more.

Nutrition and energy support

ALS can cause the activities of daily living to take more energy. Energy conservation practices , hydration and a high-calorie diet are deeply important for maintaining your weight, preventing illness and supporting your overall health. Alongside a speech therapist who can help with swallowing issues and other members of your care team, a dietitian can help you find effective, enjoyable ways to meet your nutritional needs, even if you need to use a feeding tube.

Palliative care

The goal of palliative care is to improve your quality of life through symptom management and emotional support. Palliative care specialists partner with your care team to help keep you comfortable wherever you’re receiving care – whether it’s in a clinic, at a hospital or at home.

Managing emotional well-being and mental health

Finding positive ways to cope with ALS will help you through tough moments. Think about how you have successfully dealt with difficult situations in the past. Knowing what works and doesn’t work for you can help you persevere through the challenges you may face. Mental health specialists can be a significant resource in this, but there are also things you can practice on your own.

A woman in a wheelchair paints at a small easel on a desk.

Assistive devices and environment adaptations

As your needs evolve, assistive technology and equipment can play a big role in keeping you mobile, social and safe. From mobility devices like canes and wheelchairs to communication aids and modifications to your home, there are numerous ways to adapt to changes in your abilities.

Recreation and getting outdoors with ALS

Many local, state and federal organizations offer free or discounted recreational programs for people living with disabilities. Always ask if a recreational program or business offers a discount for you and your attendant.

In particular, the National Parks Service offers a Federal Access Pass to permanently disabled U.S. citizens. This program offers lifetime free entrance to all national park system areas, 50% off camping fees in federal campgrounds and reduced fees at more than 2,000 federal recreation sites.

All-terrain track chairs are available at more than a dozen Minnesota State Parks to make it easier to explore areas that may be inaccessible for regular wheelchairs. National parks also have mobility device loan programs that provide specialized devices that can be used on beaches and trails.

Medicines for ALS

The United States’ Food and Drug Administration (FDA) has approved a number of medicines for slowing the progression of ALS and managing certain symptoms. Your doctor can explain which medicines they think will work best for you and why, but it can also help to learn about them on your own.

ALS research

Research paves the way for improvements to how health conditions are treated. By participating in surveys, observational studies and clinical trials, you can help researchers better understand the effects of ALS and how they can be treated. You can also use the ALS Untangled website to find reviewed treatments that may complement your care plan. Talk with your care team to find out if a treatment or research study is suitable for you.

Financial support

The HealthWell Foundation hosts a fund to help cover medication costs for people diagnosed with ALS who meet certain criteria. Additionally, the ALS Association and Team Gleason have a number of grants, funds and other programs to help support people living with ALS.

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ALS caregiver assistance

Being a caregiver for someone living with ALS can be challenging. It’s possible to spend so much time supporting your loved one that your own physical and mental health take second priority.

More ALS resources

Along with the resources above, Your ALS Guide and the ALS Association offer a wealth of information and support for individuals and families living with ALS. In addition, the National ALS Registry helps connect people with clinical trials and organizations dedicated to helping people with ALS and similar health conditions.