‘He’d go wandering. He’d fall over. He had no control over anything’

At 11.40am last Tuesday in the Coroners Court on Dublin’s Store Street, coroner Dr Brian Farrell delivered his findings in the case of the late Kenny Nuzum.

Over the previous hour and 20 minutes he had listened to evidence from a consultant neurologist and a consultant neuropathologist. The coroner accepted what he had heard, he said, and found that Nuzum’s death ultimately had been caused by CTE (chronic traumatic encephalopathy) — a degenerative brain condition brought about by repeated head trauma. Over the course of an extraordinarily long rugby career, Kenny Nuzum, who died in March last year aged 57, had suffered a whole heap of head trauma.

This was a landmark case in the game in this country, the first time the death of a rugby player had been referred to this court. By confirming the link between the demise of an ex-player and a condition which has haunted the NFL in America, the coroner moved the issue of concussion onto a new level here.

If you reckoned that it was only a matter of time before CTE washed up on these shores then you won’t be surprised where we are now.

CTE is not new, but only since the NFL agreed last year to shell out $914m to more than 5,000 former players, who had sued the league because of head injuries sustained playing gridiron, has it moved centre stage.

You will be familiar with the casual, blanket description for someone’s irrational behaviour as being down to ‘a chemical imbalance in the brain’. When it comes to CTE there is actually some truth in this. We all have a protein called tau which is pivotal to the maintenance of healthy nerve cells in the brain. When you suffer concussion, however, a biochemical reaction takes place which leads to loss of function of the tau protein. And the affected nerve cells cease to function. If you are unlucky then the next stop is CTE, and your life will never be the same again.

Currently the condition can only be clinically diagnosed in an autopsy, but advances in imaging techniques are likely to make it identifiable in the living by virtue of developing ultra-high-tech PET (positron emission tomography) scans. For the moment though we are relying on brain donation to science so that pathologists can diagnose exactly what has gone wrong. And had Kenny Nuzum’s family not gone down this road we would be none the wiser.

If you are new to the rugby world then you will never have heard of Kenny Nuzum. If your familiarity with the club scene in Leinster goes back to the 1980s, however, you’ll remember him well. Team-mates were relieved that he was in their line-up and not the opposition’s. Opponents wondered how it was that someone could play with such disregard for his own or others’ safety. 

“Only for his discipline I’m told he could have gone further,” his son Andrew says. He got sent off a lot.

Nuzum played the game when the laws relating to the scrum were significantly different to those that obtain now. In the 1970s and ’80s especially it was routine for heads to clash on engagement at the scrum. Sometimes this would have been accidental, a by-product of two front rows meeting head on and without the graduated protocol we have now. It was common enough though for prop forwards to try and intimidate their opponents by headbutting them on contact. Nuzum had a well-earned reputation as a fearsome competitor who took no prisoners. Nobody was keeping count of the number of times he saw stars. Or, in other words, was concussed.

“He got an awful lot of clatters,” Andrew says. “A lot of people are going to say he didn’t play rugby the way a lot of normal people played. That’s what’s going to come out as well — that he was a different animal to the rest of us.”

Kenny Nuzum was born in Kildare in December 1955, raised in Rathfarnham, and on leaving school at 18 joined Lansdowne, then the most powerful club in Leinster. He was a fixture in the front row of a heavyweight pack in a team that at various stages included internationals Moss Keane, Donal Spring and Mike Gibson. Long after those individuals had hung up their boots, Nuzum was still lacing his.

Andrew reckons he played regularly until he was almost 50, and intermittently thereafter, by which stage he had settled in with junior club Aer Lingus. In 2005, when they had become Swords Rugby Club, Nuzum was awarded the inaugural Hall of Fame accolade. “Referees, opposition front rows, disciplinary boards, players past and present: love him or loathe him, they all knew Kenny,” ran the introduction for that award.

Despite his fearsome reputation on the field he was very popular off it. And colourful. One former team-mate remembers a story of Nuzum driving down Mary Street in Dublin’s north inner city when he saw two men messing with the lock of a car.

Having had his own car robbed a few weeks previously, he pulled over and physically assaulted them. It turned out they were plain clothes detectives. “When they had finished sorting him out they went on the piss with him for the afternoon,” he said. “Off the field he was a very decent fella — he actually had a heart of gold.”

It was his head that was the problem though. Things started to go wrong noticeably around 2006. Nuzum ran a tarmac and line-marking business — roads and sports courts — along with Andrew, with the father looking after the paperwork.

“The business went downhill because his memory started going,” Andrew says. “He used to know Dublin inside out but then couldn’t find his way around, leaving cars all over the place. We put it down to depression at first because we lost our mother 10 years ago. Eventually he gave in to it, we’d known for a few years, and said, ‘Yes my memory is going’. We were losing work left, right and centre. Forgetting invoices, forgetting prices. Things just went downhill.”

He was referred by his GP to the Memory Clinic in St James’s Hospital in June 2011. A neurological exam was largely normal and he was diagnosed with mild cognitive impairment. Six months later, he wound up in Blanchardstown A&E department. That set in train a sequence that saw him assessed by occupational therapy and psychiatric services. They concluded he did not have any psychiatric symptoms, including depression or anxiety. His primary difficulty was memory and disorientation.

By the next year things had got considerably worse. He was back in the Memory Clinic in summer 2012 for reassessment, and they referred him to the Neurology Clinic the same month. He was diagnosed with suspected PSP (progressive supranuclear palsy), a rare brain disorder that causes problems with gait and balance. At that stage he was still living at home, in Clonee, with carers coming in at night.

“He’d go wandering,” Andrew says. “He’d fall over. He’d been off the road for a year at this stage, he’d wander and be lost. No control over finances, no control over anything. In October 2012 we got him into James’s. We said: ‘This man can’t live on his own anymore.’ He’d rung me one night — thought he was in London. I found him in the garden, he’d fallen over and couldn’t get back up. We got him into James’s but he absconded twice from there, one day in his pyjamas, walking frame, slippers. Spotted first at the Aviva Stadium, at Lansdowne’s clubhouse. The guards were out looking for him. He was missing for five hours. Then someone reported him in Donnybrook Stadium and the guards picked him up there and brought him back. That was just before the Six Nations (in 2013). He was going to play rugby.”

In fact, he was trying to line out for the Ireland Legends against their England counterparts. A few weeks later, he would develop pneumonia, and after a poor response to antibiotics was admitted to the intensive care unit. He rallied briefly and was discharged to a general ward, but within 48 hours the beginning of multi-organ failure had set in. “A few days later he was gone,” Andrew says.

Initially he thought of donating other of his dad’s organs but the hospital explained to him that the brain would be the most useful, so it was arranged to hand it over to the Brain Bank in Beaumont Hospital. That’s where neuropathologist Professor Michael Farrell got involved.

“The family, along with Kenny, made arrangements for his brain to be donated and I suppose I saw that name,” he says. Farrell has a long background in rugby as a member of St Mary’s and having played for RCSI and Longford.

“‘Jesus, that can’t be Kenny Nuzum?’ I approached it on the basis that he had been seen by superb neurologists, they had a working diagnosis that he had PSP. At the back of my mind all the time was ‘could it be (CTE)?’ And you’re trying all the time not to jump to conclusions. So you’re doing everything you can to show that it’s what the clinicians thought it was but when I began to see the changes around the blood vessels then it dawned on me that this was not ordinary PSP. It was 10 times worse than any PSP I’d ever seen before in my life. Normally with PSP you see tau changes in certain parts of the brain but in Kenny’s case it was everywhere. We did all the genetics and looked for mutations in the tau gene, for the family’s sake: we didn’t want to be calling this chronic traumatic encephalopathy if it wasn’t, if instead it was something inherited.”

Farrell referred his findings to his colleague in Glasgow’s Southern General Hospital, Willie Stewart, a leading world figure on the issue of brain trauma. Dr Stewart spent a day in Beaumont examining slides and took away a tissue sample. He told the Sunday Independent last week: “In my research I’ve seen a lot of cases of CTE, but this was one of the most severely affected I have seen, particularly in such a young man.”

So how did Kenny Nuzum finish up in such a state? Had he a series of work accidents or other incidents where he was getting dings in the head? No. There had been one incident at work where he was struck in the side of the head by a metal bar which he was loading onto a truck. He hadn’t lost consciousness and he didn’t attend hospital. On the rugby field however he lost consciousness three times that he admitted. His family and team-mates said he had been concussed multiple times. Did nobody try and dissuade him from playing then?

“I knew when he would have been 50 he wasn’t the full shilling but I didn’t know what it was,” Andrew says. “We didn’t see it getting as bad. It was a bit of a heart problem that the doctors found out that stopped him playing. ‘You’re going to have some 20-year-old that runs into you and you’re going to get fucking killed.’ He played a game with Lansdowne over 35s maybe three years ago, and the boys said he wasn’t the full shilling at all.”

Not many people played the game the way Nuzum did. Fewer still played as long as he did. It is beyond question that he kept going far past the point at which he should have stopped. The consequences were an early death, at 57, with the last six or seven years of his life increasingly compromised by his advancing CTE.

“This case illustrates what we in the brain trauma community have suspected for some time: that chronic traumatic encephalopathy is not an American problem, it’s a global sports problem,” says Willie Stewart. “We would call on global sports to recognise that head injuries acquired during sporting pursuits can lead to long-term problems for people. One of our frustrations is that we’re battling concussion on a sport-by-sport basis, region by region, rather than just accepting that the good work in America carried out over the past decade has told us what we need to know: repeatedly injuring your brain over and over again is not good for some people. And it’s not just a boxer problem, it’s not just an American football problem, it’s not just an ice hockey problem, it’s a rugby problem, it’s a football problem, it’s a global problem.”

And it’s not new. Twelve years ago, West Brom forward Jeff Astle died from dementia that a coroner found had been caused by heading footballs over a career that included 15 years as a professional. The English FA promised a 10-year research study following the case. They did nothing. Last month FA chairman Greg Dyke wrote to Astle’s widow apologising for the failure to act, and to assure her an FA commission on head injuries had been set up. Terrific.

Three years ago in these pages Professor Farrell painted a clear enough picture on this issue: what was needed, he said, was a longitudinal study starting with teenagers to harvest enough information so that we might actually move forward. It would cost circa €1m, he said.

And what has happened since then? Above the line, very little, apart from an educational programme — which is useful — run by the IRFU. Useful but still not getting even close to the heart of the issue. Our understanding now is that a group of medics, independent of the union, are at an advanced stage of preparation for a programme that will go some way towards this.

“We will bring together the best academic minds in medicine in this country and a lot of stars from around the globe,” a source involved in the effort says. The source was a bit hazy though on how it would be funded, so with respect we’ll reserve judgement until the cash materialises.

In the meantime, there are others of Kenny Nuzum’s vintage and older who may find their golden years have lost their gloss because of what happened in their sporting lives. If they are as unlucky as he was then there is no way back. Let’s see if rugby can act now for the others, and wake itself up to move forward.