For Patients
 

Living With and Managing ALS

With 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.
 
Managing ALS

Living With and Managing ALS

With 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.
Managing ALS
Keep Up the Conversation
 

Communicating 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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Enhancing Quality of Life
 

Learn About Helpful Interventions

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.1-3

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).
ALS nutrition
Nutritional Status1
Why It’s Important:
Malnutrition affects up to 50% of people with ALS. The main cause of malnutrition is difficulty swallowing due to a weakness in the muscles that involve swallowing or chewing food.

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.
ALS respiratory function
Respiratory Function1,4
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 ALS*

You're not defined by your ALS. These tips may help you cope with and manage your disease.
living with ALS by setting personal goals
Set personal goals
Decide which goals and aspirations are most important to you, and stick to them. Concentrate on the people and things you love.
asking for help with ALS
Ask for help
If you ever have a question or need help with a task, don't hesitate to ask your healthcare provider(s) and/or caregiver.
planning ahead with ALS
Plan your next steps
Before leaving the house, always double check you have what you need to be prepared.
ALS family support
Stay social
Surround yourself with family, friends, and the things you love.
ALS home modifications
Customize your home
Consider modifying your home to be more accessible and easier to navigate.
ALS assistive equipment and technology
Explore assistive devices
There are many types of equipment that can help you maintain your independence for longer and be more comfortable.
treatment plan for ALS
Set up a treatment plan
Work with your healthcare provider(s) to see what interventions and treatment options may be appropriate.
mental health and ALS
Consider your mental health
A trained professional can help you and your loved ones cope with any emotions you're feeling.
Speak with your healthcare provider(s) about ALS organizations and patient-service groups available online and in your area.
*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.
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Treatment Options
 

Ask About ALS Treatment Options

Beyond choosing interventions to assist with nutritional intake and breathing, there are different approaches that your healthcare provider(s) may prescribe or recommend as options to treat your disease.
Unfortunately, there is no cure for ALS, but you can work with your healthcare provider(s) to find treatments that can help you.
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ALS Clinics
 

The Benefit of Working With a Clinical Team5

In addition to working with your doctor or neurologist, you can find many experts 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 living with ALS access to some of the best ALS healthcare provider(s).

Each expert becomes a collaborative 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.
Multidisciplinary care can prolong survival time and help improve your mental and social well-being.6
Your multidisciplinary team may include
ALS care provider team
 
To find a certified clinic or center in your area, visit
www.alsa.org/
community/centers-clinics/
ALS patient

Gastroenterologist

Respiratory therapist

Speech pathologist

Social worker

Palliative care physician

Pastoral care worker

Primary care physician

General neurologist

ALS specialist (neurologist)

Nurse who specializes in neuromuscular conditions

Occupational therapist

Dietician

 
To find a certified clinic or center in your area, visit www.alsa.org/
community/centers-clinics/

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:

Name: ex. John Smith

Specialty: ex. Respiratory therapist

Contact Information: ex. 555-5555, JohnSmith@email.com

Notes: Use this area to fill in any important information provided by your healthcare provider(s), such as tips, instructions, or next steps.
ALS care plan
Download a print-friendly sheet to organize your contact information.
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NEXT: CAREGIVER SUPPORT
 
References: 1. Predicting survival time in ALS. MDA/ALS Newsmagazine. http://alsn.mda.org/article/predicting-survival-time-als. Published May 2009. Accessed April 13, 2017. 2. Miller RG, Jackson CE, Kasarskis EJ, et al. Practice Parameter update: The care of the patient with amyotrophic lateral sclerosis: Drug, nutritional, and respiratory therapies (an evidence-based review). Neurology. 2009;73(15):1218-1226. 3. Lou J-S, Moore D, Gordon PH, et al. Correlates of quality of life in ALS: Lessons from the minocycline study. Amyotroph Lateral Scler. 2010;11(1-2):116-121. 4. Breathing difficulties. ALS Association website. http://www.alsa.org/als-care/resources/publications-videos/factsheets/breathing-difficulties.html. Accessed April 13, 2017. 5. Traynor BJ, Alexander M, Corr B, et al. Effect of a multidisciplinary amyotrophic lateral sclerosis (ALS) clinic on ALS survival: a population based study, 1996-2000. J Neurol Neurosurg Psychiatry. 2003;74(9):1258-1261. 6. Van den Berg JP, Kalmijn S, Lindeman E, et al. Multidisciplinary ALS care improves quality of life in patients with ALS. Neurology. 2005;65(8):1264-1267.