Quality of Life with ALS

Your approach to living with ALS will play a very important role in your quality of life. Many people still live with purpose, meaning, and joy after their diagnosis. Staying connected with others, prioritizing important relationships, building a support team, and taking good care of yourself are a few ways you can improve your quality of life.

Finding Purpose and Meaning

Knowing that your life has a sense of purpose and meaning can help you cope with the physical limitations of ALS. Finding something that brings you joy or satisfaction can give you something to look forward to and shift your perspective.

Your sense of purpose may come from your family, friends, work, faith, hobbies, or other pursuits. Or, you may find deep satisfaction in something new after your diagnosis, like traveling or getting involved with the ALS community.

Some people focus their energy on leaving a legacy. This could mean creating new memories with your children or grandchildren, writing a memoir, writing or recording messages for loved ones, voice banking, or anything else.

“When you take things by the day, it allows you to appreciate things like you never have before, big things like a sunset or a child, and small things, like a song on the radio, or a kiss. Each day is a gift.”

– Tim Green, Former NFL Player living with ALS

Staying Connected with Others

Relationships are often what bring us joy and help us through hard times. Staying connected with others can help you feel more engaged and less isolated.

This might mean seeing family and friends in person. It might mean communicating by video, phone, text, chat, or email. It might mean being active and engaged on social media. Or it might mean going out and attending events, even if you’re in a power wheelchair. Though it will not be as easy as before, there are transportation options that can help you get out into your community.

Prioritizing Your Relationship

Your most important relationship will likely be the one with your spouse or partner, or whoever is your primary caregiver. The quality of this relationship can be a significant factor in the quality of both of your lives. If your interactions are often contentious, it may make a challenging situation worse. You and your partner will need to communicate your needs and figure out how best to address them.

It is normal to feel angry and frustrated when you lose the ability to do certain things that you used to be able to do by yourself. It is okay to feel angry, but it is not okay to be mean. Try not to take your frustrations out on those around you. Your caregivers and loved ones may not fully understand what you are going through, but they’re probably doing their best to help. Or maybe they’re not even sure how to help, or how to talk with you about it.

Being open and honest with your loved ones can help you feel more connected and less isolated. It’s fine to say how frustrated you are. It’s okay to cry. This is not easy for your caregiver, either. Your caregiver may be feeling angry and frustrated, too.

We encourage caregivers to read our caregivers section, and we encourage people living with ALS to learn how to care for your caregiver.

If you continue to struggle and feel stuck in negative patterns, you may want to talk with your neurologist and the social worker at your ALS clinic or local ALS organization, or meet with a couples counselor to improve your dynamics.

Building Your Support Team

Your caregiver and loved ones may feel stressed and overwhelmed by what they have to do—and by what they don’t know. Communicate openly and honestly with them about how they can best help you and how everyone can work together as a team.

As the disease progresses, your caregiver and inner circle will likely need additional support themselves. Even if it feels uncomfortable, it is important to ask for help from your family, friends, and the larger community so that your loved ones can have some life balance and avoid caregiver burnout.

Taking Good Care of Yourself

When you’re living with ALS, it is especially important to be good to your body. Below you’ll find suggestions for living a life of wellness that can help you feel better, be more comfortable, and have more energy for the things that are important to you.

Sleep – Lack of sleep will affect anyone’s daily outlook—and people living with ALS can struggle with sleep. There are a number of ALS-specific tips and strategies that can help improve your sleep.
Nutrition – Inadequate nutrition can lead to weight loss and accelerated muscle deterioration. Eating well and staying hydrated can improve your strength and energy levels.
Energy Conservation – Basic activities of daily living can lead to fatigue and exhaustion. A number of strategies can help you conserve your energy for the things that matter most.
Range of Motion Exercises – Immobility can lead to joint stiffness and pain. Stretching and range-of-motion exercises can alleviate pain and preserve maximum movement.
Exercise – Overexertion after your ALS diagnosis can drain your energy and even weaken your muscles. Moderate exercise may be beneficial. Learn about exercise and ALS.
Equipment – Using equipment for ALS does not mean you’re giving up. Getting the right devices at the right time can help you stay safe, conserve energy, connect with others, and stay independent longer.
Mental Health – If anxiety or depression are interfering with your sleep and daily life, reach out to the social worker at your ALS clinic or local ALS organization. Left untreated, anxiety and depression can create their own set of challenges on top of ALS.
Self-Advocacy – Being proactive when it comes to your ALS care should result in a better quality of life for you. Learn how to get organized, ask the right questions, and advocate for yourself.