Zoe

Meet Zoe...

Zoe lives in London with her daughter, Darcy, with her older daughter, Charlie, living nearby. After injuring herself during Terrioritail Army training, Zoe noticed early symptoms of MND whilst recovering. She was diagnosed in 2022. As Zoe and her daughters navigate the challenges of life with MND, they seize each day to make new memories together and with their wider family. 

Life before MND

"I wanted to give something back to the community, so I joined the Territorial Army."

I have two daughters, Charlie who is 29, and Darcy who is 13. I live in London with my daughter Darcy and Charlie lives very locally, so we’re all close.I was diagnosed with MND in 2022. I've always been driven career wise and I started my own business supplying loose leaf tea and tea bags to wholesaler and coffee shops after working in finance as a commercial manager. 

A couple of years ago, I wanted to give something back to the community, so I joined the Territorial Army (TA). As I was progressing fitness wise in the TA and job wise with my tea business, I noticed my back kept freezing out. I had slipped, which turned into Cauda Equina Syndrome (a rare but serious condition that involves extreme pressure and swelling of the nerves at the end of the spinal cord) which would have made me paralysed if I didn't have an emergency operation. I had another major operation a couple of months later. 

Early symptoms and diagnosis

"After 12 months of tests I was diagnosed with motor neurone disease."

I was in recovery after my back operations for 12 months – I had to learn to walk again! Whilst I was in recovery, I noticed my hands started to lock out. I thought it might have been carpal tunnel because I was having to isolate the rest of my body while I got better so felt I was putting my strain on my hands. Because of my spinal injury I had gone for another two weeks of in-house rehab and during one of the sessions, I told the consultant about my hands locking out and they referred me back to the neurologist at Charing Cross. 

In 2022, after 12 months of tests and a couple of misdiagnoses, I was diagnosed with motor neurone disease (MND). It’s the slower progressing MND, known as PLS. I think it was a bit of a relief when I was told because you don't know what you're dealing with, you don't know what's going on until you get that diagnosis and have a name for it. 

Research

"I think we should get equal opportunities to take part in drug trials."

I'm was on the Lighthouse II phase 3 research trial but getting accepted on the trial wasn't an easy process. I found it by looking on the Association’s website at the live trials page and went for the one I felt more aligned to. I found the consultants team phone number online and contacted them direct. At first, they told me I wasn’t progressing fast enough, but I wrote a letter and pleaded with them to let me on, and it's took nearly a year to get accepted. I feel like everyone should be offered something, at least. I found it annoying because I’m a slow progressor, and I think you must be within two years of diagnosis and have fast progressing MND before you can be considered for most drugs trials. I understand why, but I also think we should get equal opportunities to take part in drug trials.

Family fundraising

"To see them all come out and make a massive effort feels so good, and I feel supported."

It’s been surprising and heartwarming with my friends and family. It’s lovely to be able to get involved and raise money for other people who need things as well. Up to now, we’ve done a parachute jump, one of my friends did the 15,000 steps a day challenge. Everyone has been so supportive. My sister got a place in the marathon with the MND Association. She actually has MS herself which is makes it even more special that she's running it.  Even my mum and stepdad – and people who can’t get out and do the things we do – try to put their own spin on it. They’ll do car boots and things like that. A whole day of doing a car boot for MND and they keep doing them once a month. It's just been lovely. 

My niece works for an accounting firm and every year or two years they pick a charity to fundraise for and they voted for the MND Association. They've done a sponsored walk from Preston to Blackpool, charity days at work, and they finish off the year with a big ball - the last one raised over £12,000! We had such a laugh. It's just nice to make memories with everyone and have fun. The doctor consultant from Lancashire and Cumbria did a speech as well about MND. That was quite hard for my family and friends. 

To see them all come out and make a massive effort feels so good, and I feel supported. I think they're at a loss what to do. So, for them, it's good they can actually do something. Especially the kids. Any Christmas or birthday present we get we make sure we do experiences, or things we can do together that can raise money or raise awareness whilst making memories. 

The impact of MND on immediate family 

"She tells me she doesn’t really remember me not being ill."

I have a 13-year-old and when I think about it, I've been ill for quite a long time now. Two years with my MND so far and probably a year and a half with my spinal injuries and recovery. She tells me she doesn’t really remember me not being ill. I think she’s getting used to my MND and it's progressing slowly at the moment, so we're just going through it together. She doesn't see a massive difference or a massive change from one day to the next.

That’s why I’ve come back to London as well because this is what Darcy knows and her sister, Charlie, is round the corner. If anything happens to me in the next five years, she’ll will be moving in with Charlie. Darcy knows she can just go round at any time, and she can speak to her about the stuff that she doesn’t feel comfortable speaking to me about.

I have to think about how to answer some of her questions in an age-appropriate way. I've always said, even before MND, that any of us could go at any time, and life is precious. 

Association support 

"The grants from the MND Association are just amazing."

The Association has helped me with a wash dry toilet so I can keep my independence for as long as I can. I’m having a wet room installed and I know it’s going to be amazing. All the taps are all censored so I don’t have to use my hands to turn them on. In the kitchen I have an electric boiling water dispenser, so you press a button once and it makes one cup of boiling water, rather than trying to lift the heavy kettle and burning myself. My car's been adapted now, so I've got extra steering.

The Association also supports my hobbies. We've got a family gym membership, because our local leisure centre has a heated poll which really helps because my muscles get so tight. 

The grants from the MND Association are just amazing. What they do to help and support is incredible. My daughter Darcy was offered some counselling with Barnardo’s through the Children and Young Peoples team. She had one or two sessions but has decided not to continue right now. But to know it’s there if she needs it is great. I would never have known about that service if it wasn’t for the MND nurse at my hospital, so I felt really supported and the referrals were done so quickly. 

Managing the impact of MND and fatigue 

"It’s important to find time for yourself and try to do things that help."

I’m getting better at asking for help with things like the cleaning. I can do things, but the day after I can’t move for the whole day so I’m getting better at waiting and asking for help. I do find it really difficult, but I’m starting to get over those barriers. 

I have a very active social life, even now, but I’m learning to say no to things. I have to think, ‘is this important to me? Is this going to help raise awareness of MND? Is it going to help the community?’ if the answer is no, I don’t go. I have to be really strict on my time. It takes a good few days to get over an event or going out, so I have to make there’s nothing else planned for a few days after. 

I feel like I'm putting my eldest daughter, Charlie, under a lot of pressure to do and keep on top of stuff. With Darcy, my younger daughter, I do ask her to do a few things, but I think she already feels the pressure of being a young carer. Sometimes, I’ll ask her to get me some water or bring it through from the other room, whereas normally I would do that for myself, or I have to book the shopping order to arrive when she's around so she can carry it in. 

It’s important to find time for yourself and try to do things that help. MND traps you in your body, and there's only so much you can do in the day before having to rest. I'm not a person that would normally watch TV and things like that, but you're forced to because you can't hold a book, for example. I'm constantly listening to podcasts and trying to take my mind off stuff while I’m resting. It's hard to get your head around. 

Advice for others

"This is about your journey. It's not about everyone else, you've got to do what's right for you."

Make time to go over the situation for yourself. Get yourself informed and get ready to fight, because if you don't push, things will happen slowly, but you need to be 10 steps ahead as much as you possibly can. But when you do fall, or come up against it, you’re half expecting it because you've educated yourself, you've understood, you've read the information, and you've tried to take control of the situation. 

Speak to somebody outside of the family that's neutral. This is about your journey. It's not about everyone else, you've got to do what's right for you. 

I've always been that kind of person, who would say, ‘if I died at any point, I know I've lived my life to the full.’ Everything I wanted to do; I've achieved. I’ve travelled loads, I've got any regrets, so I just try and carry on with an extra level of awareness. Going forward, I feel like it's a gift and I embrace every day.