Paul Gill was diagnosed with motor neurone disease last June and spent seven months preparing for the end of his life. Then, just ten days ago, he was told he had been misdiagnosed and he does not have the disease. The man who played 49 games for Leeds between 1982 and 1989 has got his life back and is in the mood for celebrating.
What symptoms did you have that led to your incorrect MND diagnosis last year?
I was struggling with simple stuff like walking up hills and climbing steps. I play a lot of crown green bowls. I no longer had a free-flowing action. My partner, Christine, and I went to Lanzarote last February. Normally we’d walk three miles on the front, but it got to the stage where I could barely walk 300 yards. I was so tired. I came home and went to the doctors. I had every test you could imagine – MRIs, CT scans, ECGs. I had injections for vitamin deficiencies and blood tests. This went on for three months. Still no diagnosis. I had electro tests where they put needles in, measuring nerves and muscles. At this stage, I’d lost four stone, and was going downhill rapidly. I was panicking.
When were you diagnosed?
On June 18, 2023, I was diagnosed with motor neurone disease. You could have knocked me over with a feather. We were absolutely devastated. I’d lost two close colleagues at Clayton [ARLFC] who were 41 and 48 with MND, and Rob Burrow had become a national hero by this stage. I’d followed his MND journey. I have two children, aged 30 and 34. Telling them was the hardest thing I’ve had to do. The prognosis of around two years is terrible.
How did you deal with it?
The Rugby League community was incredible. Garry Schofield, in particular, was unbelievable. The support he gave me was fantastic. He came to Clayton so often to try and cheer me up. He’s raised over ten grand for MND. He’s amazing, and I can’t thank him enough. Old team-mates like David Ward, Dave Heron, Mark Conway, Dave Creasser and Simon Irving have all been over to see me. It’s overwhelming and I can’t thank them enough.
How do you go about preparing for your death?
No one can prepare you for it. One example is Christine and I are getting married in two weeks [on February 17]. We brought it forward because I didn’t know my timescale. Now it’s going to be a mass celebration. I tried to be positive about having MND, but there’s always that underlying thought that you’re dying. There’s no escaping that. Or so I thought. “When’s it going to happen?” I’d think. “How’s it going to happen?” Christine’s been amazing. She’s supported me to the hilt. She cared for me while working full-time. The MND team in Bradford are wonderful – there are physios, dieticians, breathing experts, voice experts and so on. They supported me all the way, as did the Marie Curie Hospice team.
Had you planned your funeral?
No, but it was getting higher up my to-do list. I’d sorted my finances out – things like wills, power of attorney etc. I had one eye on my funeral, but I hadn’t planned it yet. I was still struggling with mobility. I couldn’t get in the bath, but I wasn’t deteriorating as I expected. I’d stopped taking my statins, which turned out to be a blessing because what I did have was statin-induced myopathy.
When did you find out you do not have MND?
On January 25 at 1pm. I’d had an electro test, and they asked me to come for the results. Christine came with me. I wasn’t deteriorating, but MND is a one-way street, so I figured I soon would. We went in, and it was a different person to who diagnosed me. He said I’d been misdiagnosed, and that they were “undiagnosing” me with MND. I’d never heard that word before. He said, “You haven’t got motor neurone disease.” They were wonderful words to hear. I’d have collapsed if I hadn’t been sitting down. I cried my eyes out. He said I have statin-induced myopathy, which was improving because I’d stopped taking statins. I’d been taking 40mg a day of atorvastatin prior to my MND diagnosis. It had impacted my muscles, which can be a side effect of statins. He said I might not get back to 100 percent health because of my age – I’m 66, but my mobility and strength have improved. I’ve put a stone and a half back on. Last Sunday, watching Bradford v Leeds, I stood for two and a half hours. I couldn’t have done that a few months ago. We still can’t get our heads around the news. It’s a miracle.
Amazing. I’m so pleased for you. What has the reaction been?
I’ve never been hugged as much as in the last week. Kevin Sinfield rang to say he couldn’t believe the news. What a bloke he is. I watched him running from Headingley to Bradford before I was diagnosed. Friends have raised so much for MND, and they’re still proud of that even though I don’t have it. I’d like to say a massive thank you to Jason Hirst and Nigel Wood at the Bradford Bulls who have supported me so much. They invited 50 of my family and friends as well as 40 ex-Bradford and 40-ex-Leeds players to their friendly last Sunday, which turned out to be two days after I found out the news. Initially, the day was all about helping me and raising funds for MND, but it turned into a celebration instead.
I stood up and did a speech in the Trevor Foster Lounge. I told them my news. The ovation was utterly amazing. There were grown rugby men crying their eyes out and hugging me. Then I was taken to the directors’ lounge where 150 people were having a meal, and they got me to do another speech! I’d met Schoey on the Friday. He had goosebumps at the news, and he hugged me. He has been a rock to me.
Do you have any plans beyond your wedding?
We’re going to Benidorm on our honeymoon. Then Cheltenham Races in March and Croatia in May. I’d planned these when I thought I was dying. Now they can be celebrations.
Onto rugby, if it’s not too much of an anti-climax after all that, if you could relive one day from your career, which would it be?
When we won at Widnes in the Challenge Cup in my first season in 1983. We’d beaten Wigan on my debut, which is another highlight, but Widnes were the cup kings and big favourites, and we went with a young side. I kicked three goals. It was on Grandstand, and we beat them 12-6. I taped it and watched it several times!
Tell us about the BARLA tour you went on in 1982.
It was to Papua New Guinea and Australia for six and a half weeks. It was a fantastic experience. PNG were developing in terms of rugby, yet people walked for seven days to watch a match. The game there is huge. We lost the Test to PNG 16-14. The penalty count was 22-2 against us – very dubious refereeing! We had a good team. Mick Appleyard was captain. There was Dave O’Connor, Gary Johnson, Gary Cotterill who played for Leigh and Kevin Pape, who’s a legend in Cumbria.
Were Clayton your only amateur club?
Yes, I only played for them and Leeds. I played as a 16-year-old from 1974. I didn’t sign pro till I was 23. That would be unheard of now. I returned to Clayton after Leeds. I coached them too, and we won ten Bradford Cup Finals and five Pennine Cup Finals. I’m very proud of that record. We played Queens at Headingley in the Yorkshire Cup Final before about 5,000 people. It was 9-9 at full-time, but we lost 13-9 in extra-time. John Bastian told me last week that was the best amateur game he’s ever seen.
How did you come to sign for Leeds?
When I toured PNG, I met Harry Jepson because he was managing the GB Colts at the same time. We spoke about me moving to Leeds and they were on my doorstep when I returned! I signed that summer and waited a couple of months to get my debut against Wigan in November 1982. I won my first seven matches, which included Widnes away and Warrington at home when I scored two tries. Then that fateful day came on February 27, 1983 – my eighth game. Saints at home in the Challenge Cup. We lost, and I broke my leg in five places. It was a nothing tackle, but I couldn’t get up. Wardy was shouting at me to play the ball, but I couldn’t feel my leg. I wasn’t screaming in agony. I just couldn’t feel it. I’ve never seen the incident, so I still don’t know what happened. I was out for over twelve months. I was in such a great place when it happened too.
Who were your best team-mates?
John Holmes was the greatest by a mile. He was my best mate. It hit me hard when he died. We always drank together. We played Alliance together. We coached the Alliance together. He was incredible. I admired Dave Heron, one of the most underrated players I’ve ever seen. He was a top-of-the-ground player, who would have been a sensation in summer rugby because the firmer grounds suited him. As leaders go, David Ward was phenomenal. I respected him as a player and a coach. I played with lots of Australians too. In one match, I was number one and Dave Heron was 13, and the rest were pretty much Australians. Andrew Ettingshausen was amazing. Eric Grothe – what can you say? Another who impressed me was the centre Tony Currie. He was brilliant.
How did you end up at prop?
I played fullback, wing and prop. Do you know anyone else who has played in those three positions? When I broke my leg, I put a stone on. It was hard to get it off again. I fancied moving into the forwards and enjoyed it when it happened in 1988. I played a few games there, and we won at Saints and Hull KR. I also played in the forwards for the Alliance team who I later coached with John. It was so rewarding bringing youngsters through. Norman Francis was a crowd favourite; Martin Smithson was a great kid. I also coached Phil Turner, Richard Gunn, Paul Worthy, Ikram Butt, Mark Lord and Vince Fawcett, who probably didn’t get the chances he deserved at Leeds. Paul Anderson also started with us and went on to have a great career. We were enjoying it, but then David Ward got sacked, so we all went. Doug Laughton came in and brought all his own people in which is understandable. I thought Leeds were harsh with Wardy. David and Norman Smith were great people. Norman was the Alliance coach when I was first there and then he was David’s assistant with the first team. He was superb.
How are you feeling now?
I’m still in disbelief. I sometimes shake, thinking how lucky I am. I feel so joyous. I’m 66 and I’ve been given another go at life!
