Until there's a cure ... there's care

Information on emotional aspects of living with MND includes:

Depression

Anxiety and depression are understandable when coping with a progressive, disabling illness.

Strategies

It may be helpful to share feelings with other members of the family or with a sympathetic outsider.
If depression is persistent and distressing consult with your doctor for further strategies such as antidepressants or counselling.


Worry

Some people find themselves worrying about situations that previously did not bother them. The 'crowded-room' feeling, and being left alone at night, are two experiences that sometimes cause anxiety.

Strategies

Adopting a deliberately calm attitude and concentrating on breathing can sometimes help. Breathing techniques can be practised when worry-free.

Ready access to a system of summoning help, and the reassurance of having someone nearby in moments of need, can be a great comfort.

For further strategies consult with your doctor.


Uncontrolled Laughing and Crying

There are times where a person with MND may have an exaggerated or inappropriate response to an emotional experience, for example while watching a sad scene in a movie someone may have a prolonged crying episode or alternatively may laugh.

The condition is known as the pseudobulbar affect or emotional lability. It is important to note that the person cannot control this emotional expression and that it does not accurately reflect how they are feeling.

Strategy

Where appropriate, ask the person how they would like you to respond to an episode. For instance, they may like you to treat the situation in a matter-of-fact way as this helps the incident to be less upsetting for the person. Consult with a doctor or medical team as in some instances medications are prescribed to manage the Pseudobulbar affect.


Sex

The capacity of people with MND to enjoy a normal sex life is not directly affected by the disease. Indirectly, however, it may play an increasingly important role for both partners.

There are three main aspects:

  • Physical effects - muscle wasting, paralysis and general fatigue.
  • Psychological factors - pseudobulbar affect, depression, and the stress of living with a terminal illness.
  • The changing nature of the relationship as one partner becomes increasingly dependent on the other who gradually assumes more and more responsibility for the care of the person with MND and for the care of home and family.

It may be helpful to discuss concerns with a specialist counsellor.