JW

Age at interview: 68

Brief Outline:

JW is 68 and is a retired teacher. He has 2 adult children and is widowed. Ethnicity: white British

JW’s wife Jean rapidly developed difficulty talking in 2010 and was later diagnosed with MND, caused by the C9orf72 gene variant. JW cared for Jean until her death in 2013. He remains hopeful for research progress and a future treatment or cure.

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In the late summer of 2010, JW’s wife Jean rapidly lost her ability to speak. Apart from her speech difficulties, Jean was still able to do most things, and JW describes this period as “normal life”; they managed well and were able to go on trips and holidays in Europe and the USA. Jean’s condition gradually deteriorated over the next three years. She eventually lost most of the use of her arms and legs and had increasing difficulty eating, which caused her to lose a lot of weight. Towards the end of her illness, she also showed changes in her thinking and behaviour. 

Jean was eventually diagnosed with MND. Although this was already suspected, the family were glad not to have a formal diagnosis until there was no doubt, as “there’s nothing you can do about it”. Around this time, Jean and JW unexpectedly connected with relatives abroad on a genealogy website. One of Jean’s relatives asked whether any family members had been diagnosed with MND, and it came to light that it was not only Jean and her father (who had also died of the disease) that were affected. Jean and JW then saw a genetic counsellor and she had a genetic test to establish whether she could have an inherited form of MND. Through this, it was discovered that she had the C9orf72 genetic variant. JW cared for Jean until she died in December 2013. In 2018, one of her two brothers also died of the disease.

JW and Jean have two adult children. JW has individually discussed with them how they could be affected by MND, particularly with regards to genetic testing and options around starting a family. However, this isn’t something they talk about regularly. There have also been some conversations with Jean’s wider family about the possible hereditary implications of the disease.  

JW tries to keep up to date with research around inherited MND. He receives newsletters from the MND Association and has attended two conferences focused on research in this area. JW and his family have fundraised for the MND Association over the years. They have been especially involved in a campaign to raise money and awareness around inherited MND and to promote research into it. JW is hopeful for research progress in the future. 

JW benefitted from bereavement counselling for about a year, which was offered through the hospice where Jean died. He is grateful for the support of his family and friends and encourages other families in a similar situation to talk to the people around them.

JW’s wife, Jean, was diagnosed with MND-FTD, caused by the C9orf72 gene variant. Seeing her health decline was “horrible”.

It was just getting worse and worse. The PEG feed, the wheelchair, the visions… Because I should have said, perhaps… it wasn’t just seeing her dad [having visions] and things; my wife’s character completely changed. She wasn’t at all like she’d been, even in the spring of that year, she got very inside herself, she was even more difficult, increasingly difficult to communicate with. You know, got emotionally upset in ways that she’d never been before, we’d been married a long time. It was horrible. Then the paramedics having to come, and then the people with the bloody hoist, it was rubbish.

So to be honest, at that time, you were living day to day, watching a gradual decline get increasingly declined, to someone that you’d known and loved for so long. Almost literally, she was disappearing before our eyes. 

JW wrote a letter to his children and his wife’s siblings to share the news that she had an inherited form of MND, caused by the C9orf72 gene variant, and what this could mean for them.

I wrote a letter, handwrote it, a rare thing, and copied, photocopied one for Jean’s – my wife’s- two brothers, one for my daughter, one for my son, exactly the same letter, explaining what we’d found. And advised them to do what they wanted with it: talk to us about it, see a genetic counsellor, do what they wanted. But I wanted to do it in a written way because I didn’t know how to do it face to face, frankly. It was easier to do it by writing.

I told, I quoted, I wrote in a less medical form what the letter from the genetic counselling people at, who had done the test said. It was a very well-written and very nicely done letter. So I basically took that, changed it around a bit and said, “We now know it is not just motor neurone disease”, because they were not a million miles away from knowing that already, because of the time it was. Remember, from Spring 2013, we knew, really. “But it had this genetic form that had been diagnosed, if you took yourself to your GP, they would happily arrange for genetic tests and counselling.”

JW’s first thought when he realised he’d be looking after his wife’s PEG was “Oh, God”. He adapted quickly, because “it’s a case of having to, isn’t it?”

The only thing is, you focus on the – it’s a cliché, but you focus on the day and the week, yeah? And you do that. And then there’s another one, yeah? I remember when the very nice lady, the nutritionist lady came to talk about the PEG-feed thing, and I said, “This is great, who’s going to come around and do it every day?” she said, “No, you’ll do it, Mr. [surname].” “What?” I said, “Oh, I suppose, yeah…” I mean, three times a day, you weren’t going to get a nurse in three times a day, that would be madness, wouldn’t it? But at the time, it never occurred to me because I’m not at all a practical person, and all this bloody, had to you know, had to be all done right, you know? This is a thing in your wife’s tummy. Got to be kept clean and everything and the delivery of the stuff and all that, and setting it up three times a day and learning how to do it. I thought, “Oh, god,” but actually within a week, it was no problem. Because as mum used to say, it’s a case of having to, isn’t it?