Angi lost her father to MND at the age of 10, when he was 42. The family were told that it wasn’t hereditary, and that it affected men. However, many years later her mother developed speech problems, which Angi recognised from when her dad was ill. She was referred to various departments, and was given treatment at a dental hospital, which Angi felt gave her false hope. Eventually, she was diagnosed with MND. Shortly afterwards, Angi’s sister became worried about her ankle, which hadn’t healed after a fall. She went for further tests and also received an MND diagnosis. They unfortunately died in 2016, aged 76 and 53.

Angi was her mum’s primary carer. She helped her with daily tasks and organising her care, so she could remain at home over her illness. She encouraged her to be independent and positive, which she believes contributed to her living for longer with the disease. Although Angi also helped her sister where she could, she wasn’t able to be as involved in her care. She feels that she did not have the same support to live well with the disease. Angi suggests that having a centralised list of aids, adaptations and services would enable people to access the help they need as efficiently as possible.

Angi and her relatives were told that what had happened in the family was unfortunat. However, at a monthly meeting for people with MND at the local hospice, Angi and her mum discovered that MND could be inherited, which was a shoc. Since then, Angi has questioned whether there could be a familial form of the disease in her family. She would like to know whether there was a link between her mum, dad and sister’s illnesses, especially as they were all affected differently. As far as she can remember, neither her mum nor sister were offered genetic testing.

Although she hasn’t been told anything about the chance she could develop MND in the future, Angi has spoken to her son Joe about the possibility that this could happen. She has told him that he might be able to have genetic testing, though so far they have both decided not to pursue this further. Angi feels that since a positive test could not tell her with certainty if or when she would be affected, she would rather deal with it if it happens. If she were to develop symptoms, she is confident that she would know what to look out for. She suggests that there should be a fast-track system for people with a family history of MND who are worried about symptoms themselves, as she would not want to go through the same process as her mum.

Angi’s experiences have impacted her priorities in life. Instead of pursuing her previous career, she now works part time. This gives her time to enjoy herself, which she feels is important in case she does develop symptoms. Angi and her husband have recently bought a house, which they have made accessible for wheelchair users. Regardless of whether she develops MND, Angi describes this as a sensible decision as they get older.

Angi has been involved in fundraising around MND and has taken part in several sponsored walks and a sponsored silence. She values the social aspect of the events local to her, and also attends an annual memorial service. Angi encourages other families affected by MND to ask for support; there’s stuff out there, you;ve just got to ask for i.