Joe

Age at interview: 25

Brief Outline:

Joe is 25 and works full time as a plumbing and heating engineer. Ethnicity: white British.

Joe’s grandfather developed MND when his mum was young, and in 2016 his grandma and auntie died of the disease. Joe would be open to learning more about MND but is not interested in genetic testing himself; he would rather deal with it if it happens.

More about me...

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 numbered”. 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.

Joe isn’t one to worry about what might happen in the future. Knowing he could have an increased risk of developing MND doesn’t affect his life; he plans to deal with it “as and when”.

It definitely hasn’t changed me. But knowing that even there’s a risk I could have it, I’ll just worry about that as and when it comes up, if it does. That’s kind of how I’m going to do… it’s the same with everything, I don’t sort of sit and worry about what could happen, it’s kind of like if anything happens, I’ll deal with it. Kind of what I do with it, so no, I wouldn’t have said it affects me at all.

Joe’s mum asked him whether he would be interested in having pre-symptomatic genetic testing. He didn’t have to think about his answer, but “just knew” he didn’t want to know.

Like I say, my mam asked, I just said no without thinking about it. And I didn’t have to think, I just knew, like, it was one of those… as you’re hearing the question come out, you just know, like, no, I didn’t want to know this. The minute she said you can find out whether you’ve got it, it was a no. That was pretty much me.

Joe felt that receiving a positive pre-symptomatic genetic testing result “would mess with us”. In his mind, that would mean his “days are numbered”.

If I get the result saying that it’s, let’s for argument’s sake say, “Yeah, you’re going to get it or you have it,” like I just don’t want to know. In my mind, like I say, I could be wrong, but going off what I’ve sort of witnessed last, or seen happen, is that it will kill you eventually. In my mind, if I get told I’ve got it, it’s like, right, in my mind, days are numbered in that sense. I know obviously I might not have it, but like if I get told I’ve got it, like that’s, personally it would mess with us so I just didn’t want to find out. I thought it would be easier just to see if it comes up. So that’s purely why I didn’t want to get it, trying to get sort of, do the test and find out, kind of thing. I think it would just mess with us personally, so I just didn’t want to get it done.