Getting married wasn’t “on the books” for London couple Craig Pollard and Alex Herd for a long time. But that changed when Alex got diagnosed with motor neurone disease (MND) in 2021, aged 30.
“We decided to get married as a bit of a consequence of Alex’s diagnosis,” explains Pollard, 35. “It wasn’t something that was on the books for us before, especially as being gay, marriage wasn’t available to us when we were younger, so wasn’t necessarily something we’d aspired to.
“But then thinking about the legacy we wanted and how much time we had together, we saw it as a good way of bringing our families together and celebrating something really positive in our life.”
MND affects nerves in the brain and spinal cord which send signals to muscles. There is currently no cure, so as muscle loss gets worse over time – affecting movement, speech, swallowing and breathing – it eventually leads to death. It’s uncommon and mostly affects people in their 60s and 70s, although as Herd’s diagnosis shows, MND can occur in younger adults too.
The charity Challenging MND, which helps people with MND, has the ‘opportunity to create amazing memories’, funded the couple’s big day last year – a fabulous festival-inspired party officiated by drag queen Just May from RuPaul’s Drag Race UK Season 4.
They had already been together for a decade, so the wedding was a “celebration of all the things we’ve enjoyed together over the last 10 years”, Pollard notes (plus “lots of glitter and sparkle – it was perfect”). It was also the last time Herd went a full day without using a wheelchair. “So it was the very last moment we possibly could have done that,” adds Herd, now 32. “And we can look back at that as a really special day.”
He first started noticing symptoms in early 2021 – muscle twitching then weakness in his hands and arms, before his legs became increasingly affected. Herd used a manual wheelchair for a while but recently switched to an electric one.
“That’s changed my life quite a lot,” says Herd. “While I was in the manual wheelchair and Craig was pushing around, I sort of felt like I didn’t really exist anymore, because everyone would interact with him, and I wasn’t responsible for where I was. But now I’m in control of my movement, I feel like I’m more interacting with people myself.”
The diagnosis has been challenging on multiple levels, individually and as a couple. MND doesn’t present with exactly the same patterns for everyone – so there is no guidebook as such, and navigating support services relies on a lot of self-advocating. Things such as specialist physiotherapy and occupational therapy can be helpful, along with home adaptations.
“Having MND, you have to get used to things changing,” says Herd. “I mean, I can’t necessarily relate at this point to someone who’s been in their wheelchair for their whole life, but because things keep changing, you can’t really get used to it properly. So it’s very difficult for me to kind of keep hold of my identity.”
In a recent survey, Challenging MND found 63% of people living with the MND had felt marginalised or ‘othered’ because of their condition, while 51% felt others see MND as their identity. In addition, 80% said they felt isolated, and 69% worry about being a burden to their family.
Feeling ‘othered’ is something Alex found himself thinking about while attending Pride London recently.
“It’s almost more like something I’m doing, than something other people are doing – because I’m seeing people doing what I would’ve been doing a year ago, it’s still fairly fresh for me, so I’m still comparing the before and after,” he reflects. “At Pride, lots of people get to see themselves represented in the crowds, and that’s nice. But then I realised how much more of a minority people in wheelchairs are. It made us realise how different our situation is now, our priorities and expectations in general.”
Music has been an important way for him to stay connected with his identity.
“I’ve been making music for over 10 years, so it’s nice I’m still able to do that. I think as much as possible, people in a situation like this need to try and keep doing the things that made them happy before,” he says.
While he can no longer play his guitar, Herd made voice recordings to use an instrument and creates tracks on his computer, using foot pedals as he can no longer click the mouse. Since his diagnosis, he’s actually been finishing a lot more songs. “I have less distractions now!” Herd quips. “But using music as a communication tool, that’s definitely become more important to me.”
Challenging MND also supported the couple with a trip to Eurovision – “which was really touching and we made great memories”, says Pollard. They’re also grateful to support from the Motor Neurone Disease Association, who provides a local area liaison, and their local St Christopher’s Hospice has been “really helpful”.
These things make a huge difference. “Something I’m very conscious of as an able-bodied person is watching Alex have to come to terms with first of all being disabled, then being visibly disabled, and then being disabled in public – there’s been a lot of different elements we’ve had to really tackle,” Pollard reflects, citing navigating public transport as one of the main everyday challenges.
There’s an emotional toll too. “My energy levels are a lot lower than they used to be, and my capacity for stress. I feel like I already have this much higher baseline of anxiety about various things, so it feels much easier to become overwhelmed,” says Herd. “I think the only thing we can really do is just try and focus on the next thing, rather than worrying about everything.”
As members of the LGBTQ+ community, there are sometimes other nuances to their experiences. They’ve noticed LGBTQ+ events are doing well with accessibility, but representation can be a more subtle matter.
“There’s definitely an element of the community who are very mindful of others and very empathetic, which I think has been where I’ve learned a lot about different people’s experiences in my life,” says Pollard. “But when it comes to the overall society of the community, I think there’s still a large proportion of it based on image, based around being cool and trendy. So it’s quite easy for people with accessible requirements to be kind of ignored in that space.”
As for their experiences in public, Craig says: “We have struggled to feel like we can take up space. First of all being LGBT, we often don’t feel that safe in certain spaces, public transport we’ve had trouble on once or twice in the past, so you’re always a bit uneasy. With moving into being more visibly disabled and needing more accessible requirements, that’s something we’ve to discuss and manage.”
Thanks to Challenging MND, the couple are banking up the joyful times.
“They offered to support our wedding, which was really special, and without them we probably wouldn’t have had it,” says Pollard. “That isn’t just a memory for us, it’s a memory for our families and friends too. It was really special.”
Challenging MND aims to support and empower those living with MND to create lasting memories for themselves and their families. To date they’ve raised in excess of £1.1million and supported over 100 families.
