FIGHTING ON

Former champion boxer Gene Chugg has battled a severe form of Guillain-Barre Syndrome for the past 12 months. Today he is back from the brink and celebrating life.

Gene Chugg was so weak his eyelids had to be taped back to their sockets.

The former Australian champion boxer didn't even have the strength to push his bedside hospital buzzer if he needed a nurse.

As a boxer he was nimble-footed by nature but for the past 12 months he'd been tripping over his own feet and stumbling about.

A few times, when he got home after dark, his wife, Judy, quietly thought her hubby had been to the pub and was a little under the weather so she didn't say anything.

He wasn't - Gene Chugg was in fact suffering from ascending paralysis, or in proper medical parlance, Chronic Inflammatory Demyelinating Polyradiculoneuropathy - a more severe version of Guillain-Barre disorder.

He says now he was glad he didn't know what was about to happen to him because he would have totally freaked out.

CIDP is a very rare disease of the peripheral nervous system involving gradual development of weakness and loss of sensation, predominantly in the arms and legs.

Gene, of Devonport, had always been exceptionally well, and at 54 being physically active, he admits, still defined him as a man.

Physicality was a huge part of his existence - he used to joke with the blokes who belonged to the footy club when he chopped the raffle wood they would not keep up with him and should not get jealous about it.

It was this extreme physical fitness which he believes went a long way to helping him recover.

"At about October last year I know there was something wrong but I kept ignoring it," Gene said.

"In November I starting waking at night feeling freezing cold and vomiting a little, then I would come right.

"I finally went to a doctor in December and he sent me to the hospital to get a blood test. It showed I had a high white blood count which means your immune system is trying to attack something and he put me on antibiotics.

"Throughout the year 2000 I had been for a couple of physicals but they always said I was fit and healthy."

Despite being prescribed antibiotics, Gene was still flippant about being sick because he had always managed to shrug things off and did not complete the treatment of drugs.

On January 3 when he went to Adelaide to his son's wedding, Gene finally succumbed. Feeling terribly ill in the stomach he was given a pain-killer. That night he had shocking spasms in his shoulder and could not sleep.

The next day he went to the doctor and she told him he had colic but could not explain the shoulder pains.

"I came home the next day and had awful pains in the calves of my legs and I went for a run around the block. Being a sportsperson I thought something had made me stiff but that I'd be right…I couldn't run," Gene said.

"The next morning I woke up tingling in the toes - it is just as well I didn't know what was going to happen next because I would have freaked out.

"The tingling progressed up my legs pretty fast and I went to the hospital (Judy was still in Adelaide). They did some tests and told me I had symptoms of peripheral neuropathy, which is ascending paralysis.

"They told me to come back in a week but I reckon I would have been dead if I'd done that.

"I had difficulty walking out of the hospital so I rang Judy and told her to come home…by the time she got here I could barely walk at all.

"At this stage I wasn't worried but I was confused.

"Judy went to the chemist to ask him if there were any side effects from the antibiotics and he told her to get me immediately back to hospital.

"Judy had to virtually carry me in. They performed a lumbar puncture and the doctor said 'you have Guillain-Barre'.

"I told him to fix it so I could go home," Gene said perfunctorily.

Instead, the doctor shot him to Hobart the next morning and placed him on life support in the high dependency unit.

If the ascending paralysis had made it to his respiratory system he was as good as dead.

Gene was treated and levelled out, but it is an acute illness and he crashed twice again.

It wasn't till they performed a nerve biopsy that he finally found out he had CEDP, which can reoccur.

That's when Hobart neurologist Bruce Taylor and two other surgeons, Scott Chamberlain and Andrew Hughes, set about fighting to bring him back from the brink, and it was quite a journey.

For more than a month Judy Chugg was given no guarantees about her husband's life as he floated in and out of ICU during January-February this year.

On February 24 Gene was transferred to Launceston for rehabilitation and there were still no guarantees about his survival or even whether he would walk again.

For 139 consecutive days Judy drove to the hospital in Launceston from their Devonport home.

"I had my eyelids taped back, my voice went, there was nothing that worked. I got Bells Palsy and I lost 20kg (he went down to 49kg).

"I looked like I had just been released from a POW camp," Gene said.

His diminutive wife could pick him up.

"Gene is gutsy and positive with his own thinking so I was positive, except the last time he went into intensive care when they asked me to stay at the hospital overnight," Judy said.

The doctors wanted to ventilate him but Judy refused to allow it - she knew while Gene was still in charge of his own destiny he had the best chance.

"I knew he was in a bad way to look at him but thank God the stubborn little s… pulled through…it was a make or break night and he was alive; weak, thin and skinny; but alive.

"Gene's brain was the only thing that worked, which could have made things worse in a way, but I knew if he had any say in it he could do it," Judy said.

Gene said he was concerned when he saw the stainless steel box come up the hallway.

"I had been to a funeral prior to Christmas and it must have affected me more than I thought because when I came out of ICU, the last time they wheeled me past the chapel and I saw the pine seats and I thought hell I've topped it; is this what you see? Do you see everything when you are dead?"

Judy used to wheel him to the canteen - he had lost his sense of taste, but he liked a can of soft drink because the bubbles felt funny in his mouth. Just joking one day she asked him if he wanted her to wheel him into church and Gene totally lost the plot.

"I didn't give up hope but I did drop my bundle a bit a few times."

He thought about his will and how his wife would survive financially.

"I dropped my bundle because I would sooner go altogether than not be able to walk. I had to be treated for depression.

"When I was at my worst Bruce Taylor (surgeon) tapped me on the shoulder and told me I would walk again - 'you might not run like you used to but you will walk', he told his floundering patient.

Gene goes back to Hobart for nerve tests this month and has offered to race his mentor around the block.

He stood on his own for the first time in June and it was a joyous time but he describes his rehabilitation as cruel.

"I became terribly emotionally sensitive - I'd been put on a commode to go to the toilet and having to have someone help you knocked me about something awful. I said to a nurse 'I'll be able to do that on my own soon' and she said to me 'life won't bee too bad in a wheelchair' which devastated me."

Even worse was a physiotherapist who Gene felt like decking when he told him his goal was to get him to use a slide board that fits between a bed and a wheelchair.

He was a real mess till June and then he started to get better in leaps and bounds and came home on July 13 in a wheelchair he swore never to look at again.

Judy threw it in the shed.

Gene crawled about on the floor to get around.

"My depression had gone by then and I'm a cheeky person and I had started to get that back again," Gene said.

They didn't know at the hospital that such was his determination to get on his own feet Gene would commandeer the crutches of a fellow patient named Dennis at night and practice alone between the two beds.

His son, Duane, received daily phone updates from South Australia where he was in the air force and agonised whether coming home would send a negative message to his Dad. Daughter Naomi packed up her life in Melbourne and returned to Devonport.

Judy was with Gene every day - shaving him and feeding him and caring for him and every day she would tell him "today is going to be a better day".

She kept telling herself he was getting better, but at that stage he really wasn't.

"People would ask me and I would say he was really, really good because that was what I had to tell myself," Judy said.

His condition is now easing but he is running like a duck and is looking to get a running coach to teach him how to improve that.

He still goes to hospital at Latrobe one day a week for treatment and that will be ongoing for a long time yet.

He says his wife got him through it.

"Fear is a great motivator isn't it and I was terrified of the chair," Gene said.

"It made me aware that good health is not just luck, you have to look after yourself. I didn't really appreciate how well I was for my age and I took it for granted.

"There is a saying in my sport (boxing) that in life we are only one punch away from disaster and that sums it up."

Judy said he never once complained as a patient, but she knew he was getting back to normal when he did lose his cool one day.

"Inside (me) I was thrilled, I said 'YES' he's getting better - you didn't know it, but I was quite happy when you swore and ranted and raved," Judy said.

"I was really quite concerned he had turned into this passive quiet little old man who was really grateful when you brought his pyjamas to him."

This is the wife who pressed his toes back every day so he could feel the pain that told him his legs would work again.

"My hands had turned into little hooks and she would spend hours bending my fingers and toes because she said when she got me better she didn't want me walking like Donald Duck - I still run like a duck," Gene said.

A sense of humour was very important to both of them surviving the ordeal.

"I have him a kiss one day in intensive care and he didn't kiss me back because he couldn't - I told him 'you had better do better than that Gene Chugg or I will stray'," Judy said.

"I am a lucky man - I was in ICU long enough to see a lot of people having a rougher time than I was," Gene said.

Now Gene Chugg wants to coach boxing again, walk with his hounds and maybe go on a hunt on horseback.

He's already fishing with his mates.

His rehabilitation continues as he innovatively discovers new and interesting ways to get stronger.

"I started working out on a step ladder and now I walk along the Don Railway sleepers on my toes which are perfect for the job."

Gene was forced to leave behind a job he loved, as the carer for an autistic teenager, when he fell ill.

Judy took time off from running an after-school care program at Nixon St Primary School, but somehow managed to study in the early hours of the mornings to graduate with a diploma in children's services and is now back at work.

That pair look and sound like teenagers in love, but you can see they know exactly how lucky they are.

"I'm better now…almost…I can't feel all of me, but I'm getting there," Gene says shadow punching the air and dancing on his toes.

GBSTasmania would like to thank The Advocate newspaper for giving us permission to reproduce this story.

Back to STORIES index page