14 October 2025 Support grants

Meet Alex...

Alex lives in London with his husband Craig and their cat. He was diagnosed with MND in 2021 at the age of 30. Alex and his husband Craig made the decision to embrace life and make as many special memories as possible. From tackling Glastonbury one last time to getting married, Alex and Craig have made every day count since his diagnosis. Here, Alex talks candidly about life with MND, his passion for making music and Association support.

Alex in his powerchair outside

Early symptoms 

"I was 30 at the time and everything was telling me online that it would be very rare to get it at that age."

Alex making music

It was about six months between my symptoms starting and my diagnosis. I know some people have a much longer journey than that. The first few months of 2021, I noticed I was getting twitches mostly in my arms, which I initially thought might have been some kind of repetitive strain injury because I had been using my computer a lot for work and to create music. I went to my GP and got a referral to a neurologist. I had Googled my symptoms, and it was in the back of my mind that having twitches like this could be MND. But, that's not the most reliable way to go about dealing with a medical problem! I was 30 at the time and everything was telling me online that it would be very rare to get it at that age. But then as my symptoms were getting worse, I was getting more scared.

Testing for MND

"The thing with MND is there's not really a definitive test to tell you that you've got it."

I saw the neurologist and he referred me for three tests, but I actually ended up only having one of them. He referred me for EMG tests which is where they put needles in your muscles to measure the signal that your muscles receiving. It's quite unpleasant. They put a needle into your muscle, which as it is, is unpleasant, but then you have to tense the muscle while the needle is in to give them a reading of how strong the signal is. I was also supposed to have a lumbar puncture to take spinal fluid, and I was supposed to have some MRI scans. The thing with MND is there's not really a definitive test to tell you that you've got it. It's more like you have tests to make sure that it's not something else. It was June or July when I had the EMG tests and I was kind of freaking out so I decided to use my private medical insurance through my work to see if I could speed up the process. 

Diagnosis 

"I just felt really numb."

When I was diagnosed, I remember asking, ‘What kind of MND is it? Is it Kennedy's disease?’ And the neurologist said ‘No, it's ALS.’ I think that was when I realised this is the worst-case scenario. It's weird to think of that moment. I feel like in that moment, it doesn't really feel real. I didn't have a breakdown or cry or anything like that. I just felt really numb. 

I was on my own in that appointment, which was kind of difficult. When I told my parents about it, they were really annoyed I had gone to that ap

Alex at Manchester PRIDE

pointment on my own. We talked about it with them, and my two neurologists came back and apologised and said that there was a bit of a communication issue with my old neurologists wanting those tests to happen before I was diagnosed and my new neurologist not thinking that was necessary. 

I went immediately from that appointment to meeting the research nurse and signing some documents, giving permission for the universities to study my samples and for me to take part in research and stuff. 

Embracing life and making memories 

"I went on hikes, and we got to see the Northern lights."

We did quite a lot of things in 2022. We got married in July and we went to Amsterdam to get a tattoo of our cat from an artist we both follow on Instagram. I'd never had a tattoo before and I remember being quite anxious about it because I thought it was going to hurt but it wasn't as bad as I thought it would be. I was thinking, 'Well, it can't really be as bad as the EMG tests!'

Alex - Northern Lights

Me, Craig and my parents went to Iceland in 2022. When we booked it, we weren't sure if I was going to be able to do much, but I went on hikes, and we got to see the Northern lights. It was a really nice trip to go on. 

We went to Glastonbury in 2022. We've been a couple of times before, but this was a bit of a wakeup call to us in terms of my energy levels. They do have really good accessibility stuff at Glastonbury. There's an accessible campsite and I could still walk at that point, but they let us have a wheelchair which was helpful to conserve energy. I think that was my first experience using a wheelchair in public. It was a bit of a baptism by fire because it's crazy at Glastonbury, going down all the pathways with massive crowds heading towards you and I'm just sitting in this chair thinking, 'Please don't elbow me in the face!' Glastonbury is absolutely massive, and it was exhausting the previous times we'd gone, but this was even more exhausting for us because I had less energy and Craig had to push me when I was in the wheelchair. I think as people who had gone to Glastonbury before and enjoyed all the offers, and the nightlife and gone crazy, it was an adjustment going in 2022. And struggling to keep up with our friends, not really being able to do as much as we had done before. For somebody who's never been to Glastonbury and doesn't necessarily have expectations already, it would be good as a disabled person to go. We still had fun, but I think at the end of it, we both agreed with each other we don't think we need to do that again, but I don't regret going.

Association support and home adaptations

"The Association grants have totally changed my life."

We've had grants for various things, but mostly for our home adaptations. We had ramps installed, we had the bathroom renovated into a wet room. I had a quality-of-life grant towards a desk that's height adjustable. We also had a ramp which allows me to get outside in my chair. And the bathroom, I wouldn't be able to shower if we didn't have that. The bathroom as it was before was getting dangerous for me to use. The Association grants have totally changed my life. 

I've also used the MND Association for information like recommended travel insurance providers, because that's a bit of a hurdle – especially with certain things like the definition of a terminal illness. Travel insurance is pretty expensive for someone like me. 

Alex - recent (2025)

I went to the Association’s under 50’s Support Group on Zoom. Usually there’s someone from the Association with a specialty in a certain area like benefits and what's available, what we should be applying for, PIP and stuff like that. There was a call the other day about Continuing Health Care and there were people on that call who were quite jaded about the process which I totally get it because it's frustrating and it's difficult.

Making music 

"I’ve adapted to my MND as it’s progressed."

Music is a big part of my life. It's something that has really helped me through whatever I'm going through. I used to play guitar, that was my primary instrument, but I can't play anymore. I use a lot of samples and software to make my own music as well. It's time consuming and very difficult – even without MND - but it's fun and I enjoy the process. I’ve adapted to my MND as it’s progressed. At first I was using a specialised mouse with foot clickers and now use a device called a Quadstick. It's a special mouth joystick with sip and puff sensors. It takes a very long time but I'm still able to kind of get into that flow with it and forget I've got MND. The Quadstick is designed for playing games and was loaned to me by the charity SpecialEffect. I'm also using it to play games for the first time in years. It's pretty life-changing.

Alex and Craig - holding hands on the beach looking out at a sunset

Advice

"The uncertainty is scary, but it does leave room for hope."

I think the thing with MND is there's so many unknowns and you can get yourself worrying about loads of stuff that might not happen. It's difficult to tell somebody not to worry about things. But I think, if you're at the start of your journey, what you might have read online, or other people you might have seen, you really don't know what the journey is going to look like. The uncertainty is scary, but it does leave room for hope.

Patrick sitting outside - autumnal trees in the background
Living with MND

Patrick

13 October 2025
Patrick was diagnosed with PLS in December 2023 after experiencing symptoms in April 2022. Life with MND looks different now, but he still maintains his passion for music.
Lorraine smiling at camera
Working with MND

Lorraine

15 October 2025
Lorraine was diagnosed with MND in May 2024. She discusses the support she receives from her employer and family and emphasises the importance of living life fully, and planning for end-of-life care.
Tracy on a scooter raising money for MND
Legacy Stories

Tracy

14 October 2025
Tracy shares her journey from losing her husband, David, to MND in 2016 to becoming an Association Visitor, Branch Chair for the West Yorkshire Branch and clinic volunteer.