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Caring for someone with MND


Caring for someone with MND

Call our RCDA Alison Manning on 07831 349384

who will help with your concern's.

or contact our helpline.

Helpline: 0808 802 6262

Newly Diagnosed

A diagnosis of MND can feel overwhelming. You, your family and everyone close to you may need time to adjust. As difficult as it may feel at first, having open conversations about the impact of this news can be helpful. It may make it easier for everyone to share concerns, both now and in the future.

What are the likely symptoms I can expect?

Some of the symptoms you may experience

  • Muscle weakness
  • Twitching (and fasciculations)
  • Muscle tightness and/or cramping
  • Breathing difficulties
  • Swallowing problems
  • Saliva and mucus problems
  • Speech and communication difficulties
  • Fatigue
  • Emotional reactions
  • Pain
  • Cognitive changes
  • Emotional lability (also known as pseudo-bulbar effect)

What is not affected

  • Taste, sight, smell, touch and hearing
  • Incontinence
  • Sexual function and expression
  • Eye muscles
  • Heart muscles

How will MND affect my everyday life?

The challenges of MND mean finding different ways to do things and adjusting to change. These publications may help you to find ways to manage daily activity with the disease. See also our publications for Symptoms, therapies and treatments.

Is MND inherited?

It is still not possible to give a clear answer about the precise causes of MND as each individual may be affected by a different combination of triggers. However, when you are being diagnosed, a neurological consultant will probably ask you about any family history of MND or of frontotemporal dementia (FTD). If not, it is worth asking the consultant to discuss family history, as this may help determine if an inherited gene is one of the likely factors.

MND with no apparent family history:

Most cases of MND occur with no apparent family history of the disease and the precise causes in these instances are not yet known. Multiple genetic and environmental triggers are thought to be involved, with genes playing a small role. The environmental triggers may be different for each individual, so there is no simple way of identifying what may have played a role in the onset of the disease.

Information for Carer's


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