We now know that some people with MND also experience degeneration in parts of the brain known as the frontal and temporal lobes. The frequency, type and progression of these changes in MND are very individual, and can range from very mild and subtle changes, to a more rapidly progressive dementia.
You may find that you are laughing and/or crying at what might seem like the wrong time and you are unable to control it. This may be due to how you are feeling but commonly it is because a part of your brain that is affected by the disease is causing this to happen. This may seem embarrassing to you and disturbing to others but be reassured that this is normal. Some people have found that taking certain medication helps with these symptoms so you may want to talk to your GP or Neurologist.
Changes in cognition (thinking) and behaviour are due to the changes in how the brain works because of MND. The brain controls and manages our daily thinking and behaviours using complex systems that can be disrupted in diseases such as MND. This can result in challenges for MND sufferers and their families.
The cognition changes that occur are attention and concentration, planning and organisation, mental flexibility, reasoning, problem solving, self-monitoring and/or self-regulation. Language can be affected often with people having difficulties with word-finding. Some people can also have memory loss.
Changes in behaviour can occur in some people. These changes are more noticeable than cognitive changes, and can be distressing to family members. Some people with MND can become indifferent to the needs and feelings of others. They may have difficulty controlling their impulses, they are more likely to take more risks and avoid warnings. They may be less agreeable and more prone to anger outbursts, physical or verbal aggressive behaviour can be observed at times due to a lower frustration tolerance. New obsessional or compulsive behaviours can develop. These can include repetitive movements like tapping, humming, throat clearing, lip smacking, or more complex behaviours such as cleaning rituals, collecting, hoarding or walking fixed routes. Some people change the type of food they prefer or may binge eat.
A small percentage of people also experience new psychiatric symptoms, including delusions (feelings of persecution) or hallucinations (seeing/hearing things which are not present).
It is important to remember that it is the illness that causes these distressing changes and not everybody will experience this. However, those who care for people with cognitive and/or behaviour impairment need support. Changes in the person’s behaviour can be extremely stressful for the caregiver. Some people may benefit from mental health support services such as counselling or psychotherapy. Do not be afraid to raise your concern with the MND Multidisciplinary Team or speak to your GP or Neurologist. If necessary, ask to see a member of the team without the person being present, so that you can discuss your concerns openly.
If you have concerns over the well-being and care of your loved and are unsure who to reach out to, please speak with our dedicated services team on Freephone 1800403403 or email services@imnda.ie
