Angi
Angi is 53 and works part-time as a cleaner in a school. She is married and has a son, Joe, who is 25. Ethnicity: White British.
Angi has lost her father, mother and sister to MND. Although she would like to know what has caused the disease in her family, Angi does not want to find out her own genetic status; she would rather deal with it if it happens.
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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 “unfortunate”. 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 “shock”. 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 it”.
Angi left her teaching position and now works part time. She said, “I didn’t want to be like my sister who worked right up until she was diagnosed… I’m enjoying myself now”.
Angi left her teaching position and now works part time. She said, “I didn’t want to be like my sister who worked right up until she was diagnosed… I’m enjoying myself now”.
That’s why I didn’t want to pick up my teaching career anymore. I didn’t want to be like my sister who worked right up until she was diagnosed, so she had no time off to enjoy anything. So that’s why I chose, I went from teaching to non-teaching, I’m in the house from 8.30 in the morning, I only do two and a half hours a day and the days are mine, I’m enjoying myself now, I don’t want a career, yeah.
Angi feels people with a family history of MND should be fast tracked for tests if worried about possible symptoms.
Angi feels people with a family history of MND should be fast tracked for tests if worried about possible symptoms.
I’m aware of any changes within me and what to look out for, so I hope I’ll be fast tracked. If I go to my GP in you know, if I notice some changes in me, whether it’s me speech, whether it’s me hand not working or a dropped foot or something like that, I would like to think I can go to the GP and ask to be referred straightaway to be tested, I haven’t got to go through the long process, you know what I mean? I would like to be able to get fast tracked if I notice any difference in myself, and I hope that would happen.
When doing up the house, Angi put in an accessible bathroom and step-free access. Even if she doesn’t develop MND, she sees this as a sensible decision as she and her husband get older.
When doing up the house, Angi put in an accessible bathroom and step-free access. Even if she doesn’t develop MND, she sees this as a sensible decision as she and her husband get older.
We bought the house in 2017, and we got it all done up and I made sure I got the bathroom done with a wider door for wheelchair access, and I’ve got, took the bath out completely and got the biggest shower, walk in shower you can get, because my son’s a plumber so it’s ideal, and we got that. So that’s set in if I need to, because my husband’s 12 years older than me anyway, so if anyone needs a stairlift we can always get in too, and we’ve got the purpose built bathroom for that, so I’ve planned ahead for that. Even if I don’t get it, as you get older you might need it anyway.