Living With ALS

Navigating the road ahead

Living with ALS will change the way you do many things. Here are 10 ideas that may help motivate and prepare you to move forward more confidently.

  • Set realistic goals

    Setting goals can help you focus on the things you want to accomplish. It may help to be patient, stay positive, and be realistic and specific in what you want to achieve.

  • When you need help, just ask

    You might be determined to do as much as you can on your own. While this is a great attitude, be sure to ask for help when you need it. It is also a good idea to check in with your healthcare provider (HCP) about things you should not be doing on your own. Asking for help is good advice for your caregiver, too.

  • Do your best to plan ahead

    Doing so can help ensure you have the things you need so you can feel more comfortable and prepared.

  • Stay social

    Staying connected to the people and things you love may help you face each day feeling more positive.

  • Make the most of tools and services

    Talk with your HCP or care team to learn about helpful tools and services, such as physical therapy. This may help enhance your quality of life.

  • Make your home easier to navigate

    Consider things like moving your bedroom to the first floor and installing a raised toilet seat. Modifications like these can help you get around more safely, easily, and independently.

  • Be resourceful

    There are also many types of medical equipment, assistive devices, and simple modifications that can help you do things on your own longer or make you more comfortable.

  • Consider the benefits of therapy

    You and your family may have a lot of feelings, emotions, and concerns to work through. You may want to seek the guidance of a trained professional to help you work through them.

  • Ask questions

    There will be many new and different things to learn about and consider. If you're ever unsure about anything, it's always a good idea to ask.

  • Set up a treatment plan

    Work with your HCP to see what treatment options may be right for you.


Connecting With Your Care Team

A collaborative approach to ALS management

To help manage ALS, it is important to work collaboratively with healthcare providers (HCPs) from many different areas of expertise. Each expert becomes a member of your personal care team.

The goal of this team should be to work together to come up with and maintain a care plan that best fits your needs, not merely treat the disease.

Members who may be on your care team and how they can help

As recommended by the ALS Association, it can be helpful to work collaboratively with many of these healthcare providers.

Team Member Resource For
Primary care physician General medical care
Referral to ALS specialist
Management of other health conditions
General neurologist ALS diagnosis
ALS symptom management
Referral to ALS specialist
ALS specialist (neurologist) ALS diagnosis confirmation
Management of ALS
Referrals for other specialists
Nurse who specializes in ALS Questions about ALS or treatment plan
Occupational therapist who specializes in ALS Mobility issues, positioning body, conserving energy
Making modifications to home
Choosing and accessing assistive devices
Physical therapist who specializes in ALS Exercise safety
Durable medical equipment
Dietician who specializes in ALS Nutrition and hydration
Appropriate changes in food texture and consistency
Gastroenterologist Nutrition and feeding tubes
Pulmonologist Breathing concerns and problems
Strategies to optimize breathing
How to use non-invasive ventilation
Speech pathologist who specializes in ALS Issues with speech/communication
Assistive speech technology
Social worker who works in ALS Counseling
Community resources
Help with legal and financial issues
Psychologist Coping strategies
Monitoring for depression
Addressing family dynamics
Infusion site-of-care staff
(if receiving Radicava®)
Scheduling and managing treatment appointments
Questions about receiving treatment
Primary caregiver Everyday care and emotional support
Help scheduling and getting to appointments
Help managing needs and services
Searchlight Support Out-of-pocket cost support options
Infusion resources
Product information
Family and friends Emotional support
Assisting caregiver
ALS organizations Education and support
Download a printable version of this chart, which allows you to add your healthcare providers' contact information.

Benefits of working with an ALS clinic

You can find many experts for your care team under one roof at an ALS Association Certified Center, which is commonly called an ALS clinic. These clinics are located across the country, giving people with ALS access to some of the best ALS HCPs.

This multidisciplinary approach allows people with ALS to receive care from a variety of HCPs during a single visit.

If you have been diagnosed with ALS and are not already working with a multidisciplinary ALS clinic, ask your HCP about this valuable approach for managing your care.

The information and advice provided here are general in nature and are not intended to be a substitute for professional medical advice, diagnosis, or treatment. You are strongly encouraged to seek the advice of your doctor or other qualified healthcare provider with any questions regarding a medical condition.

Important Safety Information

Before you receive Radicava® (edaravone), tell your healthcare provider about all of your medical conditions, including if you:

  • have asthma.
  • are allergic to other medicines.
  • are pregnant or plan to become pregnant. It is not known if Radicava® will harm your unborn baby.
  • are breastfeeding or plan to breastfeed. It is not known if Radicava® passes into your breastmilk. You and your healthcare provider should decide if you will receive Radicava® or breastfeed.

Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.

What are the possible side effects of Radicava®?

  • Radicava® may cause serious side effects, including hypersensitivity (allergic) reactions and sulfite allergic reactions.
  • Hypersensitivity reactions have happened in people receiving Radicava® and can happen after your infusion is finished.
  • Radicava® contains sodium bisulfite, a sulfite that may cause a type of allergic reaction that can be serious and life-threatening. Sodium bisulfite can also cause less severe asthma episodes in certain people. Sulfite sensitivity can happen more often in people who have asthma than in people who do not have asthma.
  • Tell your healthcare provider right away or go to the nearest emergency room if you have any of the following symptoms: hives; swelling of the lips, tongue, or face; fainting; breathing problems; wheezing; trouble swallowing; dizziness; itching; or an asthma attack (in people with asthma).
  • Your healthcare provider will monitor you during treatment to watch for signs and symptoms of all the serious side effects.

The most common side effects of Radicava® include bruising (contusion), problems walking (gait disturbance), and headache.

These are not all the possible side effects of Radicava®. Call your healthcare provider for medical advice about side effects. You may report side effects to Mitsubishi Tanabe Pharma America, Inc. at 1-888-292-0058 or FDA at 1-800-FDA-1088 or www.fda.gov/medwatch.

Indication

Radicava® is indicated for the treatment of amyotrophic lateral sclerosis (ALS).

Please see full Prescribing Information and Patient Information.