“I want to do as much as I can before there’s a chance that I can’t do it anymore”: Supermilk’s Jake Popyura on the realities of his ALS diagnosis

Having been diagnosed with the rare and fatal motor neurone disease ALS (Amyotrophic lateral sclerosis) three years ago, Jake Popyura of indie-punks Supermilk reflects on his discovery, diagnosis, and now, determination to live amidst the release of his band's third record, High Precision Ghosts.

“I first noticed symptoms when we were recording the second Supermilk album [Four By Three], right at the end of 2020. I had gone home and was moving things, slipped on the stairs, and rolled my ankle badly. It took quite a long time to heal. Once it did heal, it was fine, I could go on runs and whatnot, but halfway through 2021, I noticed when laying in bed, my toe had started to twitch, like a phantom movement. From there, I noticed – when walking or running – my foot would kind of flop and drag a little bit. I originally didn’t think anything of it, I thought it must have to do with injuring my ankle on the stairs, like a knock-on effect.

“However, I started falling over more and more; I fell down the stairs a couple of times, I fell in the shower and fell through the glass… I went to see doctors and physios, but none of them could tell me what was wrong and just told me to do exercises, even though I was doing those and it wasn’t getting any better. That started to alert me to the idea that it could be something a bit more serious.

“So, when I started to notice the symptoms increasing – up my leg, and the weakness in my arms and my hands – that’s when I went to the doctor and told them something more had to be going on.

“I was diagnosed with ALS [Amyotrophic lateral sclerosis] earlier this year, but I sort of knew in the back of my mind that when they started talking about neurological disorders, I had an inkling it was going to be ALS. It’s the thing where you know your own body. Doctors can tell you stuff until they’re blue in the face, but the only person who knows how your body is meant to feel is you.

“When I actually got diagnosed it came as a relief. Because I felt like I had already done all of the emotional work beforehand, freaking out and panicking, it was almost scarier – not knowing what it was. Knowing that my body is deteriorating, but then not having any answers whatsoever. So, when they told me, even though it wasn’t the nicest news to hear, it was a moment of, ‘I can breathe. I know what it is.’

“I’ve always struggled with mental health stuff – I was diagnosed with bipolar type II just after I turned 30 – and weirdly enough, since being formally diagnosed, my mental health has never been better. The diagnosis of ALS is such a life-changing thing, that it put a lot of things into perspective and has made me feel very grateful for the life that I’ve lived up until this point, and the life that I continue to live.

“The fact that I’ve been able to play music, on a full-on level in various different bands, since I was very young, that’s stuff that some people never get to experience. But, the fact I’ve been touring and travelling all over the place since I was 18, 19… I feel very grateful for that.

“I’ve always been self-sufficient, and try to do things on my own, but the offer of help and the constant checking in, and just showing up has been overwhelming and made me feel very lucky. It’s a beautiful thing. With Supermilk, I couldn’t ask for better bandmates.

“When we played Manchester Punk Festival in March, it was something we had been looking forward to for a while. We had a decent crowd and the energy of the room was really good, but then, during the second song, my legs were starting to shake and tremble, and my limbs were starting to feel weak to the point where I couldn’t properly play, and I had to keep breaking during the song.

“But immediately, Em [Foster], who plays guitar, saw it and she ended up stepping behind me, because she could see that I was having trouble standing up. And as soon as we finished that song, she whispered to me, ‘Shall I go and get a chair?’ and ran back immediately.

“I played the rest of the set sitting down, just the support from the band has been incredible. They offer to carry things, check to see if I’m okay, if I fall over they literally pick me up…

“The new record was written before my diagnosis. When I got the diagnosis, I made a schedule. ‘We’re recording this, we’re releasing it here, we’re touring here – let’s go.’ I want to soak up every moment of this. I want to do as much as I can before there’s a chance that I can’t do it anymore.“

Supermilk's new album High Precision Ghosts is released August 9 via Specialist Subject Records

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