ALS Mental Health

Used across the whole answer

✓Supports this

“Anxiety and low mood can each make thinking feel slower or less clear.”

Says worrying thoughts from anxiety can disrupt the ability to think clearly, and describes clinical depression as a condition that affects how a person thinks as well as how they feel, listing difficulty concentrating among its symptoms.

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.

Addressing Anxiety

Background the team read

Used across the whole answer

✓Supports this

“Involuntary laughing or crying can be part of MND itself, and it can be treated.”

Describes pseudobulbar affect in people with ALS as sudden, unpredictable episodes of laughing or crying that are difficult to stop, and says medication can manage it.

There are medications available that can be effective in managing the symptoms of PBA.

Understanding Pseudobulbar Affect

✓Supports this

“Up to half of people with ALS/MND have some change in thinking or behaviour, and for most these changes are subtle and have little or no effect on daily life.”

Puts a figure on it: cognitive change can occur in up to half of people with ALS, and for most that means gradual, subtle changes rather than the more noticeable picture of frontotemporal dementia.

Recent research indicates that this can occur in up to 50% of those living with the disease.

Monitoring Cognitive and Behavioral Changes

Used across the whole answer

Used across the whole answer

✓Supports this

“MND/ALS associations often provide emotional support themselves or can point to local counselling and services experienced with the condition, for the person and their family.”

Says the local ALS organisation, alongside the clinic, may be able to recommend a mental health professional nearby with experience of disability or serious illness.

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.

Addressing Anxiety

!Qualifies this

“Many ALS/MND teams and clinics either include psychological support or can refer you to it.”

Agrees the team is the place to start but is explicit that provision is patchy, and suggests asking them to recommend someone experienced with ALS or serious illness where the clinic has no service of its own.

Some but not all ALS clinics offer mental health services.

Being Open to Counseling

Used across the whole answer

✓Supports this

“Low mood, anxiety or hopelessness that becomes heavy or constant is a reason to seek professional support.”

Draws the same line between ordinary low days and clinical depression, lists persistent sadness, loss of interest and hopelessness among its symptoms, and frames it as treatable rather than as something to endure.

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.

Identifying and Treating Depression

Used across the whole answer

✓Supports this

“Talking with a trained counsellor or therapist helps people work through feelings, fears, grief and coping.”

Says a skilled counsellor or therapist can help someone struggling with overwhelming emotions, anxiety or depression build insights, coping skills and techniques for current and future challenges.

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.

Being Open to Counseling

Used across the whole answer

Used across the whole answer

✓Supports this

“Sadness, anxiety or hopelessness that persists or is hard to shift is a recognised sign that professional support may help.”

Lists persistent sadness, loss of interest, pulling away from others, disturbed sleep, difficulty concentrating and feelings of hopelessness as symptoms of clinical depression, and says to raise concerns rather than wait.

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.

Identifying and Treating Depression

✓Supports this

“A local ALS/MND association runs or knows the support groups and online communities available in your area.”

Names finding a local ALS organisation as one of the building blocks of a support network, because it can provide support, connect you to resources and answer questions.

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

Developing a Strong Support Network

✓Supports this

“People living with ALS/MND commonly feel isolated and cut off from others.”

Says that feeling isolated and disconnected is a common part of living with ALS, and treats staying connected with others as part of looking after mental health.

When living with ALS, it is not uncommon to feel physically or emotionally isolated and disconnected from others.

Staying Connected with Others

Background the team read

Further reading

Emotional wellbeing and mental health in ALS/MND

Further reading

On the emotional side of ALS/MND, which often includes changes to relationships

Further reading

Accessing emotional and mental health support

Further reading

On the emotional side of living with ALS/MND and ways people cope

Further reading

Kinds of professional emotional and mental health support

Further reading

Questions to ask about mental health support

Further reading

Recognising when to seek mental health support

Further reading

On emotional wellbeing and when to seek help. It is written for the person with MND, not for carers, and may still be useful background.

Further reading

On the emotional side of ALS/MND, including low mood and anxiety that can affect thinking

Further reading

On emotional wellbeing and when to seek help, including for low mood

Further reading

On the emotional side of ALS/MND, which can help tell mood changes apart from pseudobulbar affect