Mary
Mary is 49 and works full time as an office manager. She has two children, who are 15 and 21. Ethnic background: white British
Mary found out about inherited MND in her family after her father was diagnosed. She then was told that that her grandmother and great-aunt had also died of the disease. Although Mary worries about developing MND in the future, she tries to stay positive.
Mary’s father was diagnosed with MND in 1998, shortly after she had her first child. She found out that it was an inherited form when a relative mentioned that her grandma and great-aunt had also died of the disease. The family then asked her father’s consultant whether it was hereditary, who confirmed that this was likely. At this time, Mary’s main concern was for her dad; looking back, she feels she didn’t fully understand MND because she hadn’t seen anyone go through it. It was only after her father died, around two years after his diagnosis, that Mary began to process what this could mean for her and other family members.
Mary does not know the gene variant responsible for the disease in her family, as her father did not have a genetic test before he passed away. Although part of her wishes she could have the option to be tested, Mary can’t see any advantage of knowin, as having the gene variant would not mean she would definitely develop the disease. She also worries that she would find it hard to cope with a positive result and that this would impact how she lives her life. If there was a treatment available to stop MND from developing, Mary thinks she would feel differently about testing.
Mary is particularly aware of bodily changes like muscle twitches, choking on food, or falling over. She has been to see her GP about these concerns and was referred to a specialist for more tests. On both occasions she received normal results, which helped put your mind at res. Although Mary is now coping better, and tries to stay positive, she feels she is getting closer to an age where MND could develop.
In Mary’s family, MND is not often discussed. Although Mary and her sister sometimes talk about it if they have seen something on the television or are worried about a particular symptom, mostly they discuss it on a surfac level. Mary has not yet told her children about inherited MND in the family. She doesn’t want them to live with the worry that they could get it and change their views on life. However, she questions whether she should tell them, so they can make their own choices around starting a family. Mary isn’t sure how she would approach this discussion or where she could seek advice on how to go about it.
In the past, Mary has joined online forums on MND. She found that speaking to other people in a similar situation was helpful because you could relat. However, Mary feels she got a bit obsesse with looking up information and stopped using these sites. Nowadays, she uses the MND Association website to keep up with research progress and look for opportunities to help with studies.
Mary has not been offered any professional support around MND, either when her father was diagnosed or since his death. Mary feels that support to families affected by inherited MND needs to be improved. She thinks this is especially important after the death of a loved one, as other relatives may still be living with worries about their future. Mary encourages other families in a similar situation to stay positive.