Joe first became aware of MND when his grandma developed the disease. Her symptoms started in her throat, and she eventually lost the ability to speak. Around the same time, Joe was told that his biological grandad, who passed away when his mum was young, had also died of the disease. Two years into his gran’s illness, Joe’s auntie developed difficulties with her legs and was diagnosed with MND as well. This raised some questions for Joe about whether MND could be passed down in families, as it had affected the next generation. Joe’s grandma and auntie died in 2016, within a short time of each other.

Around the time that his relatives were affected, Joe looked online to find out more about MND. He was particularly interested in how it can affect people, as his gran and auntie had been impacted in very different ways. Some of what he read suggested that MND could be hereditary, but he didn’t want to look into this any further. Generally, he found it hard to find reliable information and know what was true. What he understands about the disease is what he has seen in his relatives who have been affected; he feels that he doesn’t know much more than this, but that some further information might be helpful.

Joe is not sure what has caused MND in his family, or where it came from, as both of his grandparents had the disease. He hasn’t been told how it could impact him in the future, but perceives that there is an equal chance that he will not be affected, as to his knowledge his father’s side of the family do not have the disease. Although he sometimes talks about MND with his mum, Angi, he generally doesn’t bring this up as he is aware that thinking about his gran and auntie could be upsetting for her.

For Joe, his experiences with MND are not something he thinks about in everyday life. For him, it is the loss of his grandma and auntie that has affected him, but this would have been the same whatever they died of. He takes the approach of worrying about things if and when they happen, rather than dwelling on what could happen in the future.

Joe has had a discussion about genetic testing with his mum, who told him that there may be a test that he could take which would confirm whether he carries a gene variant linked to inherited MND. Joe had an immediate sense that he did not want to know- he would rather just live life and see what happens. He questions whether receiving a positive result would negatively impact him, as he would feel that his days are numbere. Joe would also be concerned that there could be a financial impact, particularly when taking out life insurance, as he knows that people can be asked about their medical history or illness in the family. He cannot see any benefit of finding out his genetic status at present, and would rather be in a position where he genuinely does not know.

Joe has been involved in sponsored walks to raise funds and awareness around MND. He encourages other families in a similar situation to keep going and fighting for a better life with the disease.