Coping with ALS

Coping with ALS involves a focus on managing symptoms and maintaining quality of life through medical care, assistive technology, and supportive services. At ALS United Rocky Mountain, we are to support individuals and their families navigate the challenges of the disease.

Finding Quality of Life

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

Finding Purpose and Meaning

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.

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

Some people may 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.

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 or communicating by video, phone, text, chat, or email. It might mean being active and engaged on social media. Or it could 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, partner, or whoever is your primary caregiver. How you interact and get along will be a significant factor in the quality of both of your lives. If your interactions are often contentious, it can make a challenging situation worse. You and your partner will need to communicate your needs directly and figure out how to best address them.

It is normal to feel angry and frustrated when you lose the ability to do things that you used to do by yourself. Though it is okay to feel angry, 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 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 some 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 – Exercising to the point of fatigue after your ALS diagnosis can drain your energy and set you back. A moderate exercise program developed by an experienced physical therapist, though, may be beneficial.
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 be more independent.
Mental Health – This affects nearly every facet of our lives, including how we feel, think, act, and relate to others. Learn how you can improve your mental, emotional, social, and physical well-being on our Mental Health and ALS page.
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.

Adapted from the ALS Functional Communication Scale, Roman 2014

Coping with Your ALS Diagnosis

Learning you have ALS is shocking, life-changing news. It is important to give yourself time to absorb and process your diagnosis. You do not need to read everything about ALS right away, and you can wait to tell others until you feel ready. There is no way to know how your ALS will progress. We suggest taking things one day—and one step—at a time.

Finding Support

You do not have to do everything yourself, or figure everything out on your own. ALS professionals and organizations can help guide and support you. If you’re not ready for outside support right now, just know that there are resources available when you need them.

Here are some ways you can develop a strong support network:

Attend an ALS clinic - This team of professionals will monitor your health, make recommendations, and guide you every step of the way. Studies have shown that attending an ALS clinic once every few months can improve your quality of life and help you live longer. Find a clinic.
Connect with you Care Service Provider - Experienced, caring professionals can answer your questions, connect you to resources, loan you equipment, and much more—all at no cost.
Join an ALS support group - Support groups can provide a place to connect with and learn from others facing similar challenges. There are virtual support groups for people living with ALS, caregivers, family, and friends. Find a support group.
Develop a local support network - It can be hard to ask for help, especially when you’re used to being independent, but accepting help when you need it can be very helpful for both you and your caregiver. Family, friends, and the larger community often want to help if they know what you need. Learn how to coordinate and ask for help.
Addressing Anxiety - When you are diagnosed with ALS, it is normal to worry about what will happen to your body, your family, your finances, and other aspects of your life.

If you think you could use some help or guidance, start by reaching out to your ALS neurologist and ALS clinic team. Contact your clinic coordinator between visits or talk with your social worker and neurologist during your visit.

You may also want to ask to meet with a mental health professional like a counselor, psychologist, or psychiatrist to talk about strategies for reducing your symptoms. Your ALS clinic or ALS Care Coordinator may be able to recommend a mental health professional in your area who has experience working with people living with a disability or chronic or terminal illness.

Your neurologist or mental health professional might suggest taking medication for anxiety. Many people diagnosed with ALS have found that medication has helped them sleep better and feel more like themselves again. Accepting this help can improve your quality of life during this difficult time.

If you decide to take medication, do so under the guidance of your ALS neurologist or mental health professional. It may take some adjusting to find the right medication and dosage.

Sharing Your ALS Diagnoses

Receiving an ALS diagnosis can be overwhelming. You may need time to process and absorb everything that is going on before you feel ready to tell others. And you may want to take this time to figure out the best way to tell your family and friends. If you are working, you will also want to understand when the best time may be to let your employer know about your diagnosis.

How and when should I tell family and friends?

Deciding how you will tell family and friends is very individual and will depend on you and your relationships. You may want to think ahead of time about what you want to say and how you want to say it. There is no one right way to do this. Keep in mind that people’s reactions may vary.

Telling family and friends may open the door for love and support that can help you through this difficult time. If you are unsure or worried about how to tell people about your diagnosis, talk with your ALS clinic social worker or a local ALS organization representative for guidance.

How should I tell my child or teenager?

You know your child best, so you will know the best way to deliver the news. That said, it is important to plan what you will say and how you will say it.

What you say should be honest and age appropriate. For young children, you may want to speak in simpler terms about what is happening now and may not need to go into much detail yet about the future. Older kids and teenagers will need more information and likely have follow-up questions. They may also go online to learn more, so it’s best for them to get clear, straightforward answers from you first.

You might find it helpful to learn more about ALS ahead of time so you can answer questions about the disease. To calm some potential fears, you may want to cover some basic facts up front, such as the fact that ALS is not contagious.

Be clear that you are always available to answer questions and talk more about it. Also let them know that it is fine if they want to talk to someone other than you, such as another adult in their lives or a child counselor or psychologist. There are also children’s support groups. Remember to inform your children’s teachers about your diagnosis and discuss ways the school can help provide support.

As the disease progresses, keep in mind that your children may welcome opportunities to help by providing care and support and assuming more responsibilities around the house.

The following resources go into greater detail and may be helpful for you and your family:

The ALS Society of Canada has thoughtful guides for parents, children, teens, and educators, all with the goal of helping young people cope when a family member is diagnosed with ALS. You can download these printable PDF booklets.
Hope Loves Company is a nonprofit organization based in New Jersey that provides educational and emotional support to children and young adults who have or had a loved one with ALS. Every year, HLC hosts three-day camps at no cost.
Inheritance of Hope (IoH) is a national charity with the mission of inspiring hope in young families facing the loss of a parent. IoH serves these children and their families with resources and relationships for the challenges they face. Through online, on-site, and on-going offerings, families faced with an ALS diagnosis can find community and support with others who “get it.”
The ALS Association has a graphic novel for children, a book for teens, a guide for parents about talking with and supporting children, and a guide for educators working with children impacted by ALS. You can download or order these youth education books and guides.

What should I tell my employer?

This will likely depend on the progression of your symptoms and your type of work. If your symptoms are apparent or are affecting your ability to do your job, you may need to talk with your employer sooner. Before talking with your employer, you may want to strategize with the social worker at your ALS clinic and ALS United Care Coordinator.

If you want to continue working for financial, professional, social, or other reasons, your employer may be able to make workplace accommodations that will help you work as long as possible.

Keep in mind that once you stop working, you can apply for Social Security Disability Insurance. If you qualify, it will provide you with a monthly income as well as health insurance through Medicare. The waiting period for people diagnosed with ALS has been eliminated, so you should begin receiving your benefits soon after applying.

ALS Mental Health

Mental health refers to our emotional, psychological, and social well-being. It affects nearly every facet of our lives, including how we feel, think, act, and relate to others. When you’re living with a disease like ALS, it is important to remain aware of how you’re feeling and seek support when you need it. Tending to your mental health can have a positive impact on your day-to-day quality of life.

Keeping in mind that everyone will cope and adjust differently, the rest of this page explores potential challenges to your mental health and suggests ways you can improve your mental, emotional, social, and physical well-being.

Developing a Strong Support Network

Perhaps the most important thing you can do is develop a strong support system that can help guide and support you throughout your ALS journey. For medical support, it is essential to find a team of ALS medical professionals, ideally at an ALS clinic, that can monitor your health, provide care, and make recommendations for equipment and other interventions.

On an emotional level, many people impacted by ALS find it helpful to attend ALS support groups where they can connect with and learn from others facing similar challenges. Some people prefer instead to rely on close family and friends for emotional support.

On a logistical level, developing a network of family, friends, and services that can help with everything from care coverage to chores can help reduce stress for everyone.

Staying Connected with Others

When living with ALS, it is not uncommon to feel physically or emotionally isolated and disconnected from others. Yet socializing and maintaining relationships is often what brings us joy and lifts us up during hard times. A decades-long Harvard research study on happiness concluded that the most important factor in a person’s happiness is continued relationships and connections with others.

As ALS progresses, it can become more difficult to socialize and communicate with others. With the right mobility equipment and communication devices, there are ways to either socialize in person or connect with others via video, phone, email, text, or social media.

Practicing Self-Care

When living with ALS, there are a number of things you can do to improve your overall well-being. Getting good nutrition, for example, can help you maintain your weight and have more energy. Finding ways to sleep better can improve your mood, energy level, and overall outlook on life. Doing range of motion and stretching exercises can help you maintain greater flexibility and experience less pain and discomfort each day.

Following your ALS medical team’s recommendations, such as getting and using prescribed mobility and respiratory devices, is another way to improve your quality of life.

Be Aware of How You Are Treating Others

Though you may feel sad, angry, frustrated, overwhelmed, and helpless at times, it is not okay to lash out at others. Try instead to share how you’re feeling and find constructive ways to communicate with your caregivers and loved ones.

You have the ability to be kind to others, which can improve quality of life for everyone. You can also help your caregiver recharge by understanding their needs and accepting outside help like respite care.

Being Open to Counseling

The physical challenges of living with ALS are so great that they often receive the most attention. But the psychological challenges and overwhelming emotions brought on by ALS deserve equal attention and support.

If you are struggling with overwhelming emotions, anxiety or depression, or if you are just finding it hard to make it through each day, a skilled counselor or therapist can work with you to develop insights, coping skills, and techniques that can help you better manage your current and future challenges.

There can be a stigma around going to “therapy,” asking for help, or even just acknowledging that you may be struggling to cope. Asking for help is not a weakness, and working with a trained mental health professional can be the key to finding peace of mind and a renewed sense of control over the areas of your life that you can control.

“The psychology of learning how to live with the disease is really, really important,” says Joel Goldhirsh, former wealth fund manager living with ALS. “If you need a therapist, get a therapist. There's nothing wrong with it. It's a horrific disease, and if it's going to help you and your relationship with your partner, spouse, or friends, it’s money well spent, time well spent.”

If you think you could benefit from mental health support, reach out to your ALS medical team for suggestions. Some but not all ALS clinics offer mental health services. If your team does not, ask if they can recommend a skilled professional who has experience working with people either living with ALS, a disability, or another chronic or terminal illness.

Check the mental health benefits on your insurance plan to see what is covered. Some therapists may be out-of-network and others may not accept any insurance. If you are concerned about being able to pay for counseling, ask your ALS medical team if they have any suggestions or know of any free or reduced-cost mental health services in your area.

Addressing Anxiety

When you are diagnosed with ALS, it is normal to worry about what will happen to your body, your family, your finances, and other aspects of your life.

However, if you begin experiencing symptoms such as heart palpitations, shortness of breath, or uncontrollable worrying thoughts that disrupt your sleep, well-being, or ability to think clearly, it is important to discuss these symptoms with your ALS care provider. These may be symptoms of anxiety, and severe anxiety can have a significant impact on your quality of life.

If you think you could use help or guidance, start by reaching out to your ALS neurologist and ALS medical team. Contact your clinic coordinator between visits or talk with your social worker and neurologist during your visit.

Your neurologist or mental health professional might suggest taking a medication that can help ease symptoms of anxiety. Many people diagnosed with ALS have found that medication has helped them sleep better and feel more like themselves again. Accepting this help could improve your quality of life during this difficult time.

If you decide to take medication, do so under the guidance of your ALS neurologist, primary care doctor, or mental health professional. It may take some adjusting to find the right medication and dosage that works best for you.

You may also want to ask to meet with a mental health professional like a licensed counselor, social worker, psychologist, or psychiatrist to talk about strategies for reducing your symptoms. Your ALS clinic or local ALS organization may be able to recommend a mental health professional in your area who has experience working with people living with a disability or chronic or terminal illness.

Identifying and Treating Depression

Some studies have suggested that people living with ALS are at a greater risk of developing clinical depression after their diagnosis. Clinical depression is more than just feeling sad or “depressed” at times. It is a medical condition that impacts how you feel, think, and handle daily activities.

Clinical depression can include symptoms such as:

Persistent feelings of sadness
A loss of interest in hobbies and activities
Pulling away from others
Negative thinking
Disturbed sleep patterns
Difficulty concentrating
Feelings of hopelessness

There can be other symptoms as well. Most importantly, if you or your loved ones are concerned that you might be depressed, contact your ALS neurologist to share your concerns and create a plan to help you feel better.

Depression is not a character flaw or sign of weakness. It is a common, treatable medical condition that can be triggered by any number of causes, including being diagnosed with a chronic disease like ALS.

Depression is often treated by a combination of therapy and medication. Cognitive behavioral therapy is one method that can teach you how to manage negative thoughts and develop coping skills that you can use to break out of depressive states. Antidepressant medication can improve the way your brain uses certain chemicals that control your moods and help you handle stress.

Reaching out to others is the first step to getting unstuck and finding a new path forward. Learn more about depression from the Mayo Clinic and National Institutes of Health.

Monitoring Cognitive and Behavioral Changes

Some people diagnosed with ALS can experience cognitive changes in addition to physical changes. Recent research indicates that this can occur in up to 50% of those living with the disease. It can be helpful for you and your loved ones to be aware of this possibility so you can identify and address issues if they arise.

For most, this means gradual and subtle changes in thinking and behavior over time. But for some, possibly up to 15% of those diagnosed with ALS, it can mean the more noticeable symptoms of frontotemporal dementia (FTD), such as inappropriate behavior, irritability, impulsivity, poor judgment, and impaired social skills. People affected by FTD may not be aware of these changes to their thinking and behavior.

If you or your loved ones are concerned about cognitive or behavioral changes, tell your ALS neurologist. Either your neurologist or a neuropsychiatrist will be able to evaluate you and make a diagnosis. This is important because when people are experiencing symptoms of FTD, they may be less able to make sound decisions and comply with important medical recommendations.

An FTD diagnosis can prompt loved ones to take a greater role in coordinating medical care and helping make medical, financial, and other decisions.

Understanding Pseudobulbar Affect

Some people living with ALS experience pseudobulbar affect (PBA), which is a condition characterized by sudden and unpredictable episodes of laughing or crying that are difficult to stop. Though it can make social interactions challenging, pseudobulbar affect does not necessarily mean that a person has cognitive, behavioral, or emotional issues.

If you are experiencing inappropriate expressions of emotion, talk with your ALS neurologist. There are medications available that can be effective in managing the symptoms of PBA.

Finding Quality of Life

Receiving an ALS diagnosis is shocking, life-changing news. It is common to feel overwhelmed by powerful emotions like fear, anger, sadness, and grief. Yet at some point, many people begin to accept the diagnosis and adjust to their new reality of having this illness.

Once this begins to happen, the question can become: How will I choose to live my life with ALS?

ALS does not have to define who you are or consume your every thought. You may have little control over how ALS affects your body, but you do have some control over how it affects your mind and outlook. Your approach to living with the disease will play an important role in your quality of life.

In addition to practicing self-care, developing a strong support network, staying connected with others, and seeking help when you need it, you can reflect on what quality of life means to you. Does it include spending time with your family and friends? Continuing to work? Enjoying old hobbies or new pursuits? Traveling? Seeking peace through religion or spirituality?

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