Emotional and psychological support for people with or affected by MND

✓Supports this

“A wide range of emotional responses to an ALS/MND diagnosis is expected and normal, not a sign of coping badly.”

Treats strong and mixed emotions as expected after an MND diagnosis, and lists shock, denial, frustration, anger, fear, guilt, sadness and grief among the natural responses.

Your experience is individual, but natural responses to a difficult diagnosis are to be expected and may include the following.

Section 1: What can I expect?, page 4

✓Supports this

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

Says emotional lability affects some people with MND, explains it as an abnormal motor response rather than an emotional one, and says medication may help if it limits what you do.

Emotional lability (known as pseudobulbar affect) affects some people with MND.

Section 3: How do I manage emotional lability?, page 26

!Qualifies 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.”

Gives the same figure of up to half, and adds that these changes usually have little or no effect on daily life. It also qualifies the figure by stage: it rises to 8 out of 10 people in the late stages of MND.

Up to half of people with MND have changes to thinking and behaviour.

Section 1: What can I expect?, page 10

✓Supports this

“Intimacy and sexuality are recognised topics to raise with an ALS/MND care team.”

Has a section on being open about intimacy and sexuality, and tells people not to feel embarrassed asking their health and social care team, and to ask for a referral to a specialist if the team lacks the knowledge.

Try not to feel embarrassed about asking your health and social care team for guidance – if they don't have the relevant knowledge, ask to be referred to a specialist.

Section 2: How do I manage challenging emotions?, page 20

!Qualifies this

“Weakness, fatigue, breathing changes, positioning and equipment can all affect what is comfortable or possible.”

Names symptoms, medical interventions and assistive equipment such as a head support among the things people worry about. It also draws a distinction the answer does not: MND itself does not affect sexual function, and it is reduced mobility that makes sexual expression harder.

MND doesn't affect sexual function, but reduced mobility can make sexual expression more difficult.

Section 2: How do I manage challenging emotions?, page 20

✓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.”

Lists the association itself among the sources of help, and describes a helpline that gives emotional support and introduces people to local branches, groups and trained visitors, for people with MND and for their carers and families.

MND Association: for guidance, information, services and emotional support, including regional support.

Section 5: Who can help?, page 35

✓Supports this

“Asking why me, and questions about meaning and faith, is a normal response to a diagnosis like ALS/MND rather than a sign of coping badly.”

Lists feeling why me among the natural responses to an MND diagnosis, treats strong emotional reactions as expected rather than a problem, and says a faith leader or a palliative care or hospice team can help you explore these questions.

Remember that emotional reactions are natural when facing challenges.

Section 2: How do I manage challenging emotions?, page 11

✓Supports this

“Grieving losses while still living through them, sometimes called anticipatory grief, is a common experience in ALS/MND.”

Lists sadness and anticipated grief for the losses ahead, including changes to life goals, among the natural responses to an MND diagnosis, and later advises easing anticipatory grief by being open with the people close to you.

You may feel sadness due to your diagnosis and anticipated grief for the losses ahead, including changes to life goals.

Section 1: What can I expect?, page 6

✓Supports this

“Putting a difficult feeling into words, alone or with someone else, often takes some of its intensity away.”

Advises making space for painful feelings and sharing them, writing them down or letting yourself cry, and gives the reason directly: hiding strong emotions tends to make them worse.

Strong emotions can get more intense if you hide them.

Section 2: How do I manage challenging emotions?, page 17

!Qualifies this

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

Agrees that talking therapies help people cope, and is explicit about the limit: they do not make the underlying problems go away.

Talking therapies cannot make problems go away, but can help you cope with them.

Section 2: How do I manage challenging emotions?, page 23

✓Supports this

“Palliative care teams provide emotional as well as physical support, and can be involved at any stage rather than only near the end of life.”

Lists the specialist palliative care or hospice team among the professionals who help with emotions, and says to try to access this kind of care from the point of diagnosis.

Specialist palliative care or hospice team: for practical and emotional support to achieve the best possible quality of life with a life-shortening illness.

Section 5: Who can help?, page 34

✓Supports this

“There is professional emotional and psychological support aimed at carers and family members in their own right.”

Has a whole section for people in a caring role. It points carers to their own needs assessment and a possible referral to counselling, and says palliative care and hospice teams often offer similar support to carers and close family.

You may also need a referral to counselling.

Section 4: How can I get help if I support someone with MND?, page 30

✓Supports this

“Stress and low mood are common among people caring for someone with ALS/MND, and carers need support in their own right.”

Says carers are likely to face challenging emotions including sadness, anticipated grief, loss and anger, calls guilt a common one, and tells carers to get their own needs assessed and to consider counselling.

As the care demands increase with MND, physical and emotional stress can impact heavily on carers.

Section 4: How can I get help if I support someone with MND?, page 29

✓Supports this

“Thoughts of self-harm and other crisis feelings can ease with the right practical, medical and emotional support.”

Says suicidal thoughts can happen alongside depression, fear, or worry about being a burden on others, that support can ease them, and lists a GP, a specialist palliative care professional, someone you trust and 24-hour helplines as people to talk to.

Practical, medical and emotional support can help bring ease of mind.

Section 1: What can I expect?, page 6

✓Supports this

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

Describes depression in MND in almost the same words, as feeling persistently sad, anxious or worthless or losing interest in things you once loved, and treats it as a reason to seek professional help.

Depression: you may feel persistently sad, anxious or worthless, or have lost interest in things you once loved.

Section 1: What can I expect?, page 6

✓Supports this

“Trouble sleeping, eating or concentrating can come from ALS/MND symptoms as well as from mood, including changes in breathing, and should be raised with the GP or care team.”

Makes the same link from the other direction. It leads its list with shortness of breath, extreme tiredness or problems with sleeping, and goes on to pain, stiffness or cramp, speech, and swallowing problems or loss of appetite, as MND symptoms that affect mood. It tells the reader to ask the GP or health and social care team for guidance if they have them.

MND symptoms can affect mood. Ask your GP or health and social care team for guidance if you experience:

Section 1: What can I expect?, page 4

✓Supports this

“Relaxation and mindfulness techniques that work through the breath can be harder if ALS/MND affects breathing, so get help choosing ones that suit you.”

The MND Association booklet states this caveat where it describes mindfulness techniques, and tells the reader to get help choosing a suitable one rather than deciding alone. It says this of mindfulness; the answer extends the same caution to self-led relaxation, which uses the same breathing techniques. Who to ask varies by country, so the answer names the ALS/MND team alongside the GP.

Some mindfulness exercises use breathing techniques, which may be more difficult if MND affects how you breathe. Ask your GP to help you find suitable mindfulness techniques for MND.

Section 2: How do I manage challenging emotions?

!Qualifies this

“Some people with ALS/MND find complementary therapies ease stress and how they feel day to day.”

An MND booklet lists massage, acupuncture and aromatherapy as therapies used alongside conventional medicine and says some people find they ease symptoms, anxiety and stress. It also says mindfulness can reduce stress and depression. It names those therapies rather than every one listed here, so the answer's wider list goes beyond what it covers.

Some people find they can help ease symptoms, anxiety and feelings of stress.

Section 2: How do I manage challenging emotions?

✓Supports this

“With pseudobulbar affect a person may laugh or cry without feeling especially happy or sad.”

States the mismatch directly and gives the same examples, laughing when sad and crying when happy, as the reason responses do not match the feeling underneath.

This is why your responses may not match how you feel.

3: How do I manage emotional lability?

✓Supports this

“Options for pseudobulbar affect can include practical strategies and, for some people, medication.”

Covers both. It suggests practical steps such as telling the people around you what may happen and telling them how you want to be supported, and says separately that medication may help if the symptom limits what you do, through a GP or a referral to a neurological specialist.

If it limits what you do, medication may help - ask your GP for guidance or referral to a neurological specialist.

3: How do I manage emotional lability?

✓Supports this

“Pseudobulbar affect happens because ALS/MND can affect the nerve pathways that regulate the outward expression of emotion.”

Gives the same explanation and names the pathway: MND can affect the route between the outer layer of the brain and the brain stem, and the result is a motor response rather than an emotional one.

MND can affect the pathway between the outer layer of the brain and the brain stem.

3: How do I manage emotional lability?

✓Supports this

“Emotional changes in ALS/MND, including low mood and involuntary laughing or crying, can be treated, so they are worth raising.”

Covers both halves of the bullet. It describes talking therapies, mindfulness and complementary therapies for low mood and anxiety, and says separately that medication may help emotional lability, through a GP or a neurological specialist.

If it limits what you do, medication may help - ask your GP for guidance or referral to a neurological specialist.

3: How do I manage emotional lability?

✓Supports this

“Grief in MND commonly begins before the death, as losses accumulate, and this anticipatory grief is a normal response.”

Names anticipatory grief and treats it as an ordinary part of living with MND for both the person and the people close to them, listed alongside the other emotions the booklet expects rather than as a warning sign.

Ease anticipatory grief: you and those close to you may feel grief in anticipation of losses to come.

Section 2: How do I manage challenging emotions?, page 18

✓Supports this

“Feeling numb, frightened or unable to think about practical things after a diagnosis is a normal reaction.”

Says that natural responses to a difficult diagnosis are to be expected, and lists shock, which can leave someone shaking, sleepless or exhausted, and fear, anxiety or panic among them.

Your experience is individual, but natural responses to a difficult diagnosis are to be expected and may include the following.

1: What can I expect?