Georgia Z

Age at interview: 26

Brief Outline:

Georgia is 26 and works full time as a nanny and personal trainer. Ethnicity: white British.

Georgia’s mum and aunt were diagnosed with MND just a couple of months apart. She cared for her mum over her illness. After her mum died, Georgia decided to have pre-symptomatic genetic testing, and was told she does not carry the C9orf72 gene variant.

More about me...

Georgia first experienced MND when her aunt developed problems with her foot. A few months later, Georgia’s mum started to slur her speech, which was put down to a mini stroke. After her sister’s diagnosis, she had further tests. At the start of 2018, she was also told she had MND, and later developed frontal lobe dementia. Georgia’s mum and aunt had genetic testing which showed that they had the C9orf72 genetic variant. Georgia’s family have since questioned if her grandma, who was diagnosed with Parkinsonism, could have been affected. Georgia’s aunt and mum passed away in 2019, a few weeks apart. Over this period, Georgia also lost her dad to lung cancer, after a short illness. 

Georgia describes finding out about MND in her family as “surreal”. However, her focus was on supporting her parents. After her dad died, her mum’s symptoms became worse, and Georgia gave up work to care for her. She feels honoured to have taken on this role, though remembers it as draining and exhausting. Due to her dementia, Georgia’s mum struggled to take in information. Communication became increasingly difficult, and Georgia wishes they had been encouraged to set up communication aids earlier on. Georgia would like to see ongoing and coordinated support for carers and patients. She felt like she was teaching herself on the internet about what to expect.

As her mum’s illness progressed, they were given professional support. The carers had no experience of MND, and Georgia felt she had to manage them as well as looking after her mum. Towards the end of her life, Georgia’s mum went into a hospice, where she was treated for pneumonia. Georgia had prepared for her to come home, but she died suddenly before this happened. Georgia is glad she died peacefully.

When her mum died, Georgia decided to pursue pre-symptomatic genetic testing. She was certain she wanted to take the test, in part based on “curiosity”. She had a gut instinct that she did not carry the C9orf72 gene variant, and questions whether this made her less fearful of the outcome. Knowing she wanted children in the future was also in the back of her mind, as she wanted to be prepared. After losing her aunt and her mum, she had a feeling of “What am I really losing?”. Georgia’s main concern at this time was around telling her partner if the result was positive; he felt it was too soon, and worried about the potential impact of the results, so she did not tell him she was having the test.

Georgia had genetic counselling, before going ahead with the blood test. Because of the pandemic, she opted to receive her results over the phone. She was warned that this could take some time, but actually they were available within a few weeks. She was told that it was good news - the result was negative. Georgia felt reassured and is pleased that she will not need to consider this when planning a family in the future. However, her immediate feeling was bittersweet; one of her cousins, Harriet, has received a positive result. Georgia finds it hard to think that the disease may not be finished in her family. 
 
Georgia feels that she is a different person to before she found out about MND in her family and before caring for and losing her parents. She tries to take only positives from what has happened. MND is still part of her life, and she is committed to raising awareness around the disease, to make her mum and aunt proud.

Georgia Z found it challenging to adapt to her mum’s changing symptoms, as sometimes she was very aware and other times “it was like we’d lost her”.

That was probably where I felt like I had my own child with my mum, because some days she seemed really with us and understanding, and then other times it was like we’d lost her. I think we realised when I mentioned that she kept not understanding. It was quite obvious that there was not a communication, like a strong communication when I’d say, “Mum, you can’t, it’s dangerous for you to swallow food”, and she just wasn’t registering it. And sometimes I would - and I regret it now that I know, I’d give her nothing but love after - but I would scream and say, “Please mum, it’s so dangerous, why are you doing this? Put the yoghurt down”, and kind of looking at her like, “Why aren’t you listening?”
 
But actually when I started speaking to my mum’s friend, the consultants, they kind of explained, “Well that’s probably the frontal lobe side of things”. Because sometimes I would explain it and she’d really get it and I’d say, “You know, it’s dangerous”, and she’d nod, and then other times she’d look at me and be like, “What are you talking about?”
 
I think trying to learn that it is an up and down journey, yeah, I think that was probably the most draining bit, trying to get - and you don’t get any sleep - trying to explain things. You know, you’ve kind of lost them a bit, because with the MND for my aunt, I realised she was very much with it, just apart from her body, but you could tell that she really understood what was going on, whereas my mum, again, like we were just in and out of life, I think, yeah.
 
Just in a bit of a bubble. Sometimes it felt like she literally had this bubble around her head and didn’t really know what was going on.

 

An “instinct” that she would receive a negative result pushed Georgia Z to have the pre-symptomatic genetic test. Having lost her mum and aunt to MND, she thought “what am I really losing?”

So, I guess although me and my partner weren’t ready for a baby now, there is kind of in the back of your mind, because you’d have to go through the IVF process if you wanted to avoid the gene continuing.
 
So I guess that played a bit of a part just for me; I wanted to be a bit prepared. But as well it was just, honestly, it was just curiosity. I’m a very curious person and I actually had an instinct that I didn’t have it from the start, and I don’t know if that - I mean it’s only instinct - but that actually pushed me. I was like, I don’t know, I feel like I’m more my dad. Like it was such a weird, I don’t know, I just had a gut instinct, and I think maybe that’s why I didn’t feel so fearful and I just went through with it. If I’m honest, it’s taken two of the most strongest women in our family, so what’s the loss, what am I really losing? I lived for my mum so, and you’ve taken her so it is what it is really, whatever my result is.

 

Because her partner was so against her having the pre-symptomatic genetic test, Georgia Z went ahead without telling him. She is glad she did what was right for her.

Well, the only reason why I wouldn’t have done it is because my partner was so against it. He just, from seeing my mum. We actually, we’d been together six months and then my parents were both diagnosed so he was put in the deep end with us. So he was just like “Georgia, I’m petrified, I’ve seen what your mum’s dealt with and your aunt and it’s too much”. I think he was thinking, “I’m going to be a carer for…,” like I’d already been diagnosed.
 
So yeah, I went ahead, and I didn’t tell anyone, and then I went to dinner with my partner that evening [laughs]. Well I said to my boyfriend, I did say, “Oh, I’m going for that appointment to talk about it and going through with it”, but I don’t think he was really taking me serious, I don’t think he was actually understanding what I was saying, but I didn’t push for it. I was just like, “Alright”, and at the end of the day, “If I was positive and you don’t want to be with me, that’s your loss” [laughs].
 
But I did wait to tell him and I’d actually done a video after I went to the hospital with my blood test and all the plaster, and I just said, “Today is this day and I’ve just had the test and we’ll see the results soon”, and I played that to him a few weeks later and he was like, “What?”. He was just, and then I was like, “Yeah, I came back negative”, and he just cried and he said, “I feel like I needed this without even knowing I needed this information” [laughs]. So yeah.
 
Wow
 
I will never listen. I just, if I feel something I just go for it, and I’m glad I did.
 
Yeah
 
Because in the kindest way I love him to pieces but he’s very black and white and just out of sight out of mind.

 

Georgia Z managed to put her pre-symptomatic genetic test results out of her mind, but once she was given a date she felt “nervous”.

So the consultant said to me, “Because of COVID you’ll be waiting” like you know, it was like three to four weeks, maybe even longer, maybe even six weeks. And I was like, “You know what, that’s fine, there’s no date, you know, no problem”. Then he called me randomly and said, “Oh hi Georgia, we’re going to get the results on this day”, and I was like, “Oh, I kind of wish you didn’t tell me”, because I’d managed to put it to the back of my head. Then when I had the date, I was yeah, I was nervous because then you’re kind of waiting and I was kind of waiting for the call.

Georgia Z asked to receive her genetic testing results over the phone. Having an appointment with face masks and social distancing was not the experience she wanted.

You know, when I did go to the hospital we were all in masks, so again, you know, I was going through counselling and they couldn’t really see my expressions and I guess that would’ve played a role if I looked really nervous and I seemed a bit unsure but I was saying, “Yeah, yeah, I’m fine”; You couldn’t tell because I’ve got a mask on.  Which is again why I said, you know, “Call me with the results” because to me what, there wasn’t really much of a difference getting it over the phone or seeing someone and having to be distant, and. I just didn’t like the experience. It’s not the kind of experience you want for something so serious, yeah.

Georgia Z feels reassured to know that she hasn’t inherited the C9orf72 gene variant, but knowing that other relatives could develop symptoms makes this “bittersweet”.

Yeah, I mean, you know, obviously we all die of something but I think I definitely feel more confident knowing that I’m probably not going to die of something that’s uncurable, so I think gives me a bit of reassurance just in life in general. I mean we don’t know what’s around the corner, but that I think has made me feel positive to know, you know, because I think it really stabs you in the heart to know that this isn’t curable yet.

So I feel maybe that is why I’m so positive because I, I know that I don’t have to worry about that illness because in my mind that is the worst disease out there. So to know I’m kind of safe from that is a nice feeling. But I also have to be sensitive to my family members who may or may not have it.

So I don’t, you know…My partner actually says to me a lot like, “How do you feel? And how do you…” and honestly I was just like, “I feel fine”. I was - but I think that is because of my cousin’s results. You know, I’d probably be screaming it from the roof if it wasn’t the case for her, because I’d be like, “We’re done and dusted with this disease, you know, it’s never coming back”, but it’s not, that’s not the case. So yeah, very bittersweet.

Georgia Z gave up her job to care for her mum. Her carer’s allowance didn’t cover living costs and she feels there needs to be more government support for families with MND.

Carer’s allowance was like £60 a week and that just about pays one bill, which I just, I thought was disgraceful to be honest for the care I did. I was a full-time carer taking on like mental, emotion, you know, and then just to kind of get nothing. You know I had, I had to quit my job, which again I’m happy to have done that, you know, it’s my mum, I’d do it in a heartbeat, but to, I feel like it’s almost, it’s like we’re not being recognised for what we’re doing to have that, so that wasn’t great.

But then I guess the MND Association, because they do offer you know, you can fill in a form and they can give you a grant of up to £500, that was really, that was really nice, but I don’t feel like it should just be down to the MND Association to do that. I feel like the government should be more involved in that, yeah.

Looking back, Georgia Z wishes she’d been more prepared for how her mum’s symptoms would progress, particularly in terms of putting in place a speech aid.

So the one thing that I just did remember that I wish that I was pushed to do was with the speech and language therapist. They were all amazing but there was the type to speech app where it’s mentioned before you lose your voice. You can basically have, you say a word and then it gets connected on to the keypad, or you can use someone, i.e. me, I could’ve been, the speech person for my mum, where I would be saying words and then eventually she can just type and it would say a sentence out loud.
 
We quickly didn’t get that sorted and it was kind of mentioned and then, “Oh, yeah, we can do it on our next visit”, and then it got forgotten about. So towards the end of my mum’s life when her hands were going a little bit and the muscles were weakening it was hard for her to write or to text, that would’ve been really, really handy to have had that speech that she could say things immediately rather than being frustrated.
 
So I feel like that is the only thing that I wish was maybe pushed on us, because I didn’t really recognise, I didn’t know what was coming, I didn’t know how bad things were going to be and how hard communication would be. So I wish that we were just really, got explained, “This is really a good outcome, it’s a very helpful outcome towards the end. You might not feel it now but towards the end it is going to be very helpful to yourself, regarding communication”, so yeah.
 
That’s a good point. So you mean getting stuff set up so it’s ready when you need it and being told that, “You might need this so it’s best to do it now”, that kind of thing?
 
Absolutely, because although they tell you the life expectancy of MND, you don’t realise how quick things really do go downhill and you don’t have time sometimes to plan things; before you know it, a next symptom has happened and you have to focus more on that than the other stuff. So, actually getting stuff sorted immediately, because there’s no cure, I feel like we should be more aware of getting things done, the second that there is that official diagnosis.

 

Georgia Z feels there should be ongoing and proactive support for family carers. She was given very little information on what to expect as her mum’s symptoms progressed.

I think in terms of, if you’re going to be a carer for your loved one with MND, there definitely needs to be more support and maybe some kind of training, I don’t know. Because I know, for example, if my mum’s breathing went a bit funny, I would instantly call the ambulance, whereas they’d kind of say to us, “We’re happy to do the checks but actually there’s not much we can do, this is a progressive illness”. I think as much as I knew that deep down, I still had hope; I still thought both of my parents were going to come out at the end of this. So I think there’s just, that support, I think there’s actually quite a big gap of being checked up on.
 
I do feel in general there needs to be more people checking in. And we did have one young girl who was assigned to - I think she actually was possibly a uni student, and she was kind of in and out and I think eventually she went, we spoke to her for about a month and then she had to go back to uni and we didn’t hear from her. But she was meant to be our lady who stuck with us and gave us support, our support system I guess.
 
Then it wasn’t really, it was like one email, “How’s things going?” and then seven months later, “Hi, sorry, I’m not going to be around”, there’s no constant communication. My mum was having different symptoms monthly and where do I turn to? Google. I don’t really want to turn to Google to find out why my mum’s neck has dropped, why is her foot slipping, why is her jaw clenched together, what can I do to, to help all of this.
 
So it’s a hard one because I know that there’s obviously not enough maybe carers with MND experience, but I feel like there needs to be a lot more and I feel like maybe people need to want to actually be a carer for - because it’s a complex need so I can understand it’d probably be scary for some people. But there needs to be so much more support.
 
I’m grateful for the support I did have, and the consultants were amazing, they even cried to me because they couldn’t believe how lovely my mother was and that she was going to die, like what our family had been through. But for them to be like, “Oh, sorry, we didn’t hear from you, we thought everything was fine”, is that really good enough?