Robyn

Age at interview: 35

Brief Outline:

Robyn is 35 and is married with one child, who is four. She works full time. Ethnicity: white Scottish.

Robyn’s dad Jim died of MND in 2018, after living with the disease for around 14 years. Since he has died, Robyn has suffered from health anxiety. Although she sometimes worries about developing MND, she has decided not to have genetic testing at present.

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Robyn’s dad Jim was diagnosed with MND when she was 22, though the family believe that he had symptoms several years before this point. Robyn cannot remember exactly when she realised that MND was inherited in her family- she thinks it is probably “something I’ve always known”. However, growing up she didn’t know much about the disease and did not think that it would affect her immediate family. Jim unfortunately died of pneumonia in 2018, and although losing him was hard, she is grateful that he did not get to the end stages of the disease or have to cope with the pandemic. 

Robyn has traced back her family tree to try and understand where MND came from. She found multiple other relatives who have been affected, as far back as 5 generations. Although she found it fascinating to learn about their lives, she stopped doing this research because she was making herself “ill with worry”.

Robyn hasn’t been told any statistics about her likelihood of developing MND in the future, and feels that this would be hard to predict. In her great grandfather’s generation, he was the only one in 12 siblings to develop the disease, yet two of the six siblings in her grandfather’s generation died of MND. Robyn questions the influence of other genes and factors in whether a person will develop MND. 

When her dad was ill, Robyn’s main concern was for him. However, since he has died she has suffered from anxiety, particularly around her health, which has a profound impact on her life. Although this extends beyond MND, developing the disease is something she worries about, particularly when she gets a twinge or cramp. Although she feels more concerned as she gets older, she perceives the risk to her brothers higher than to herself, as the disease has only affected males in her immediate family. Because Jim developed his first symptoms in his late 40s, she takes the attitude of doing the things she wants to do now, as she doesn’t know what will happen in the future.

Robyn has talked to her mum, Sheenagh, about the results of her dad’s genetic testing. Robyn has considered pre-symptomatic genetic testing, but was advised against this by her GP, who didn’t think it would have any benefit. Although Robyn felt her GP was “dismissive”, she is happy with her decision not to pursue testing; she feels that receiving a positive result would make her worry more. Whilst she would like to know that she doesn’t have the gene variant, as she would be less concerned for her son, she knows she would still worry about other things. Robyn would reconsider testing if she was in a better place mentally, or if effective treatments became available. 

Robyn would be keen to take part in research to help future generations. She looked into donating her son’s umbilical cord for MND research but could not do this because he was premature. She is hopeful for a treatment or cure by the time her son is older.

Although Robyn appreciates the care that Jim received, she would like to see more support available for families after a loved one has died. She encourages others in a similar situation to cope with MND in whatever way works for them and emphasises that it’s okay for people to worry about themselves as well as other relatives.

Robyn has struggled with health anxiety since losing her dad; before he died, her focus was on him.

Well at the minute, I mean I’ve never had it before… I’ve always had probably a bit of mild anxiety because I’m a total panicker, I’m a worrier and I’ve always had that. And I think that my dad dying, I think for so long I focused all my worry on to him and I think that when he died all of a sudden, I didn’t have anything to worry about, so my brain decided to give me something to worry about, and I would say at the minute it, it is ruling my life to be honest with you, it is awful.

I don’t, it’s not just MND though, my health anxiety is everything. At the minute we’re in the middle of a pandemic so it is through the roof usually and it, it, I need to get this under control. And I think when I, when I didn’t have it, like when my dad was actually, had MND and I didn’t have the health anxiety, I wasn’t really that worried about getting it, if that makes sense, it wasn’t something that I thought about very much.

When Robyn had her first child, MND “wasn’t something that was going to put me off”. She points out that anything can happen in life, and that people can live a long life before developing symptoms.

We didn’t really give much thought into starting a family. But it’s not, at the time it wasn’t something that, that was going to put me off because you know, people, like people could get hit by a bus at 20, I don’t think it should put you off having kids that might live until they’re 70 and you know, I don’t think that that should put you off. But saying that, where I’m at the minute with my health and things like that, I don’t think I want to go through that again and worry about another child getting it. So no, it didn’t at the time put me off.

Robyn will tell “anybody that will listen” about her family’s experience of inherited MND. She believes there needs to be better public awareness on MND generally.

There’s a lot of people don’t know what it is, and I was totally in that camp before it happened to me - not me, but obviously to my dad, but happened to our family. And you don’t understand until, I don’t think you understand until you go through it. So, I like to tell, I will tell anybody that will listen about what happens and how I dealt with it and what we went through, because I just, I want to try and - it’s not to educate people, but I just want people to know that it’s out there and it’s awful. It’s one of the most awful things that I can think of, and a lot of people don’t even know what it is, so.
 
Everyone did that ice bucket challenge back in like 2012 or something like that, but nobody actually knew what it was for. And with MND… 100% I’m not saying that I’m perfect because there is a lot of things I don’t know what they are, you know. I don’t know what a lot of charities do, I don’t know what a lot of illnesses are, and I don’t know how they affect people, so I understand why people don’t know what it is. But if anyone’s speaking to me, a lot of people say, “I’m really sorry, I don’t know what MND is”, and that’s where I’ll be like, “Well blah, blah”, you know, I don’t hold it against anybody. But definitely I would, I just like to tell people so that they know, and it just means that more people are aware of it…
 
So it’s like awareness raising really?
 
Yeah. I mean I’m sure, I think I remember a story when my dad got chucked out of a pub because they thought he was too drunk when actually he just couldn’t walk because of MND. And I just think we need to, instead of seeing somebody struggling down the street limping or being unable to speak, why do we automatically think that they’re drunk or why do we automatically think that there’s something, you know, there’s not something else wrong. That’s maybe not what’s wrong with them.

 

Robyn’s message to other people who have an increased chance of developing inherited MND is “you can worry about everybody else, but it’s actually all right to worry about yourself as well”.

I feel sorry for anyone who has to go through this to be honest and anyone that’s seen anybody or cares for anybody die of MND. I don’t have, I don’t think there’s anything that I could say that could support anybody because it, it might happen, but it might not happen. I, I honestly don’t… I just, I just would like people to see that maybe what they’re feeling, they’re not the only one that feels that way and actually it’s okay to be selfish when thinking about things like this. It’s okay to be selfish and worry about you because, because you can worry about everybody else but it’s actually all right to worry about yourself as well.