Coping With Amyotrophic Lateral Sclerosis (ALS)

Living with amyotrophic lateral sclerosis (ALS) is challenging. The physical limitations of the condition and the psychological and emotional effects of having a significant disability can feel overwhelming for people who have ALS and for their families. 

Working with healthcare providers who are familiar with ALS and can help you maximize your capabilities is essential as you learn to cope with the day-to-day impact of your disease. Using well-established approaches can be helpful for you and your caregivers.

You and your family will have to select which approaches are right based on your personality, priorities, and which aspects of ALS have the most significant effects on your life. This article will discuss coping with ALS emotionally, physically, socially, and practically.

Emotional 

The ALS disease process doesn’t specifically cause emotional changes. But many who face disability from ALS experience symptoms of depression and anxiety. It’s important to seek help for any emotional symptoms you are experiencing. 

Professional support can take the form of counseling and talk therapy. Some people may also benefit from medication that treats depression or anxiety. You can discuss this option with your therapist and physician to determine whether you want to try medication to help manage your mood.

The emotional aspects of living with a disability may change over time.

For example, depression or anxiety can be more severe:

• Before the diagnosis, when you don’t know the cause of your symptoms
• When faced with the diagnosis
• As the disability becomes more severe

For many people living with ALS, the emotional impact of the diagnosis may lessen as the disease progresses.

Personal Participation 

Though the emotional aspects of living with ALS may require support from professionals, you can also take an active role in your emotional health. Research shows that people with ALS who talk about their disease and prognosis do not experience negative consequences and may benefit from active engagement.

Consider your preferences and how you may want to express yourself and participate in your mental healthcare.

Physical 

There are several physical aspects of coping with ALS. These include adjusting to and managing motor weakness, pain, difficulty eating, and an inability to breathe independently as the disease worsens. 

To manage these serious limitations, you will need assistance from caregivers as well as the use of specialized devices that can help you. Caregivers may include family, friends, and professionals.

Family and friends can often help in the early stages of the disease but are generally not able to manage the medical aspects of care, which can include tasks such as administering medication into a feeding tube.

Home Monitoring

You may need to monitor some effects of your condition periodically.

For example, you may be instructed to:

• Take certain measurements that reflect your respiratory abilities by using a pulse oximeter at home.
• Weigh yourself so your providers will be able to monitor your nutritional status.
• Monitor the factors that make your pain better or worse.

Social 

Living with ALS can have a substantial impact on your social life. There are likely to be places that are not wheelchair accessible where you cannot go and enjoy the company of other people. It can take a great deal of effort to continue to maintain a social life while living with ALS, but it is possible.

You can continue to interact and enjoy the company of people who have previously been part of your life before your diagnosis of ALS. Additionally, even while coping with the significant impact of ALS, you can meet new people and make new friends at any stage of your disease.

Going Out

Though the physical limitations of ALS are quite severe, the disease does not impair your immune system, and therefore, you can go out in public. You can continue to go to places that you enjoy, whether it is in nature or in scenic or public destinations.

For example, your caregivers may be able to assist you if you would like to go to museums, attend a concert, or enjoy going to the park or the beach. If there is a paved wheelchair-friendly way to enjoy any place, there is no reason that you can’t go there.

Besides asking friends family and caregivers to take you where you want to go, you can also sign up for community services that provide transportation and assistance with getting around.

Hosting

For many people, hosting others is an important part of socializing. If you have previously enjoyed hosting people in your home, it can become challenging as your disease progresses. You can still invite people over and open your home to friends, but you will need help from others for these gatherings.

Support Groups 

Support groups can be one of the social outlets that you enjoy with ALS. You can meet others who are dealing with the same issues that you are. You can receive and provide advice, encouragement, companionship, and friendship.

Your family may also benefit from joining the caregiver support group so that they can share their experiences with other people who are going through the same challenges.

Understandably, you might not want your social life to be associated only with others who are living with ALS. It is up to you to decide how much you want to incorporate ALS and ALS support groups into your social life.

Practical

Living with ALS requires many lifestyle and day-to-day adjustments. You may need to move to a different home or have changes to the structure of your home, such as wheelchair accommodation. Home adaptations may include the installation of rails and making sure you can access everything you need at home without using stairs.

You will also need to ensure that bathing is accessible and safe. This can include having well-placed showerheads installed and getting temperature controls for the bathwater to avoid burns.

Sleeping and sitting will also require taking certain measures to avoid pressure sores. You will not turn or change positions as usual during sleep and while awake due to the muscle weakness that ALS causes.

Work 

Some people continue to remain employed even after an ALS diagnosis. If this is your situation, you will only be able to work at a job where accommodations are available. This may include wheelchair accessibility, voice recognition, assistance from other employees with some of your work-related tasks, or potentially incorporating some remote work.

Summary

Amyotrophic lateral sclerosis results in progressive disability, which leads to challenges in coping with the condition. You may need emotional support, including that of a mental health professional if depression or anxiety impacts your life. You will need caregiver support as the condition progresses and impacts your ability to move, eat, and breathe.

You can continue to maintain a social life with caregiver support and may benefit from support groups. Your living accommodations may need modifications for accessibility.