Living With and Managing ALS
With amyotrophic lateral sclerosis (ALS), it’s important to be proactive about managing your disease. There are many steps you can take that may help enhance your quality of life, reduce possible symptoms, and even prolong survival.
How often should you connect with your care team?
It's extremely important to stay in contact with your healthcare provider(s).
Communicating regularly will help them monitor your disease progression, manage any symptoms you may be experiencing, and connect you with information and resources you may need. Your loved ones are also a vital source of support. They can help assist you with physically demanding tasks and also serve as an emotional lifeline.
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How can ALS interventions help?
As ALS progresses, the muscles that help with certain functions like eating and breathing can weaken, making these tasks particularly challenging. Not only are these functions necessary to maintain your quality of life, but they also can reduce your survival time if not managed properly.1-4
Below are some interventions you can choose to stay ahead of your disease. It’s important to remember that, before making any lifestyle changes, you should first speak with your healthcare provider(s).
Nutritional Status1,2
Why It’s Important:
People with ALS often face challenges with malnutrition. This can happen because of weight loss, problems eating, increased energy needs, and muscle loss. As many as 55% of people with ALS may experience malnutrition.
Taking the Right Steps:
If you can still chew and swallow safely, consume foods and liquids high in calories and high in protein.
If eating and drinking are considered unsafe, your healthcare team may consider a percutaneous endoscopic gastrostomy (PEG) tube, which is a small tube that is inserted directly into the stomach to provide a means of delivering food, liquid, and medications. Most people find PEG tubes much more comfortable and convenient than they originally thought.
Respiratory Function5
Why It’s Important:
As the muscles involved in respiration (breathing) weaken, it becomes harder to breathe. Symptoms may include gasping for air, fatigue, frequent yawning, morning headache, insomnia, and difficulty lying flat. Respiratory failure is the leading cause of death in ALS, so it’s important to intervene early.
Taking the Right Steps:
Noninvasive ventilation (NIV) can assist with breathing by using air to expand the lungs. This can be done via a face mask or nasal pillow and is intended as part-time respiratory support. Starting NIV earlier as opposed to later, when respiratory function worsens, has been shown to prolong survival.
Many patients eventually require invasive ventilation that supports the entire respiratory system. This form of respiration requires the surgical insertion of a tracheostomy tube into the neck.
Tips for managing life with ALS
After an ALS diagnosis, it can feel like there are endless decisions to be made. Remember, you don’t need to have everything figured out right away. Some things can wait so you can focus on priorities like coping with your new day-to-day life.
What you can plan for now
Talk with your healthcare provider about starting treatment early
Make a plan for managing your mental health
(eg, through counseling, exercise, or socializing)
Create weekly or monthly goals for yourself
Stay social with friends and family
Considerations for the future
As ALS progresses, there are ways to prepare to meet your changing needs. Planning ahead for changes before they happen can give you a better sense of control.6
Clothing choices
Find adaptive clothing designed to make dressing and using the bathroom easier (eg, slip-on shoes, front-clasping bras, clothing with magnetic buttons)6
Home accessibility
Make accessibility adjustments to your home (eg, adding a shower seat, reorganizing closets and cupboards to keep well-used objects in reach, or installing ramps and support bars)6
Mobility considerations
Practice how to use mobility devices before they are needed (eg, canes, walkers, or motorized wheelchairs)6
Speak with your healthcare provider(s) about ALS organizations and patient-service groups available online and in your area.
Building a strong support network
You have more help than you may realize. Between friends, family, spiritual communities, colleagues, teammates, and neighbors there are people in your life who will want to lend a hand where they can.
To make the process of delegating tasks easier, try writing the following lists:
LIST 1
Tasks that you are comfortable giving to someone else
LIST 2
People who have either offered help or who you feel you can ask for help
Compare your lists. Who is best suited for each task? You may have a neighbor who can cut your grass or a friend with the skills to do repairs or help make accessibility upgrades to the house (eg, handrails or ramps).
If you’re unsure, just ask the people in your life which task(s) they would like to help with.
These resources may help you connect with others in the ALS community.
By listing these resource organizations, Shionogi Inc. is not endorsing any particular service or group and is not responsible for the content of these sites or services. These resource organizations are provided here for informational purposes and are not meant to replace your doctor's medical advice.
How soon should ALS treatment start?
Right now, there is no cure for ALS or treatment that can undo the impairment it has already caused.
However, there are 2 FDA-approved treatments for sporadic ALS that a healthcare provider may prescribe at the same time.7
Why should you rely on a team of ALS specialists?
Treating ALS takes a village. That’s why multidisciplinary teams are made up of many different people who specialize in different areas of care. That way, they can create a care plan that is tailored to you or your loved one’s needs.7
Together with your care team, you can focus on staying mobile, comfortable, and independent for as long as possible.7
Your care team
ALS multidisciplinary care teams include specialists such as8:
Doctors
Social workers
Nutritionists
Pharmacists
Clinical psychologists
Clergy members
Physical therapists
Occupational therapists
Speech therapists
Respiratory therapists
Home care and hospice nurses
To find a certified clinic or center in your area, visit www.als.org/local-support/certified-centers-clinics/locator
Keep track of your healthcare team
As you continue your journey with ALS and work with your healthcare team or ALS clinic, you're going to come across many healthcare providers. It's important to keep their contact information in a centralized location so you can reference the right person when needed.
For each person you meet, it's important to write down the following information:
Download a print-friendly sheet to organize your contact information.
How do you navigate financial roadblocks?
Understanding coverage denials and appeals
After you and your healthcare provider decide on an ALS treatment that's right for you, you may struggle with navigating how to get your costs of care covered. This can be a frustrating process, but getting a denial for coverage is not the end of the road.
What is a denial?9
An insurance provider might say no to paying for medication, specialized care, or equipment. If they reject your claim, they will send a denial letter to you and your healthcare provider explaining why it was denied and how to submit an appeal.
What can you do about it?9
Your healthcare provider will have the opportunity to challenge a denial for you. The goal of an appeal is to ask your insurance provider to change their decision so that you can get the care your healthcare provider has confirmed you need.
How do I begin the appeal process if I receive a denial letter?
If you receive a denial letter, follow up with your healthcare provider's office so they can start the appeal process.
For your best chances at appealing a denial, your healthcare provider will send information showing that the care you need is9:
This resource may give you additional support.
By listing this resource organization, Shionogi Inc. is not endorsing any particular service or group and is not responsible for the content of their sites or services. This resource is provided for informational purposes only.