Mental Health

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Seeking and accepting support when you need it can help you find peace of mind and have a renewed sense of control.

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.

It is also important to find a local ALS organization that can provide support, connect you to resources, and answer your questions.

​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.

“Don’t be an asshole,” says Joel Goldhirsh, who adjusted his attitude after realizing he had been making life unpleasant for those around him.

“As the person living with ALS,” he says, “you have to realize that it’s not all about you. There are other people that are affected by the disease, especially a spouse or partner. Looking out for their well-being is just as important as thinking about your own.”

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?