Amby Costello interview, copyright Victoria Mary Clarke, 2003

Supposing one day you noticed that your thumb was acting funny?  Wouldn’t move, when you wanted it to move.  But you had broken that same wrist a few times and you had hit the thumb with a hammer plenty of times, so you reasoned with yourself that there probably wasn’t anything wrong.  And you carried on working.  Heavy work, laying blocks.  But gradually you noticed that your arm was getting weaker, wasn’t behaving the way it used to.  So eventually you decided to go for a check up.  And after a year of tests,- blood tests, biopsies, all kinds of tests,- you were referred to a specialist who told you that you had three years left to live, how would that make you feel? 
Amby Costello couldn’t believe it.  Didn’t believe it and still doesn’t, because  that was in 1991, nearly twelve years ago and he’s still here.  The diagnosis is Motor Neurone Disease, but even that, he’s not sure about.  If the neurologist who diagnosed Motor Neurone knows what he’s talking about, why is Amby not dead?  And why did it take so long to reach a diagnosis?  And why are his legs still working?  He has lost the use of his arms and shoulders, but everything else still works.  There are too many unanswered questions, Amby says, for him to be anything but sceptical about the whole thing.  So he’s just taking it one day at a time and making the best of whatever happens, as it happens.
Neither Amby nor his wife Margaret knew what Motor Neurone was.  Margaret had to ask a nurse that she knew, who said that she didn’t have all the facts, but she knew it wasn’t good.  The couple later discovered that the signals between Amby’s brain and his muscles were not getting through, because of damaged nerve endings and that this would more than likely be progressive, so that he could find himself in a wheechair, like Stephen Hawking, who is perhaps one of the best known Motor Neurone patients.  The neurologist that they spoke to said that there was nothing that he could do, that there wasn’t any cure and that no treatment was available.  Which was true.  According to the Irish Motor Neurone Association, a cure has never been found and there are no recorded cases of remissions, anywhere in the world.  Around eighty new cases are diagnosed in Ireland every year and each year, seventy five people die from the disease.  The average life expectancy is three years from diagnosis.
‘But he said to go back and see him again, if we needed to,’ says Amby, who is chatting to me in the front room of his home, where I have dragged him away from a Manchester United game.  Luckily he’s not a huge fan of Man U, he tells me, grinning.
Why would you go back, if there were nothing he could do?
“Exactly.”
Amby carried on working for the three years that he was given, and then for another year after that.  But gradually, his arms were going.
“There are three people like me, in Ireland, who have lost just the arms.  But all Motor Neurone patients are different.  In a lot of cases, it affects the throat , the breathing, eating and swallowing.  Thank God it hasn’t affected me like that yet, that’s the thing I fear most because you basically smother to death.”
  He can now feel his legs getting weaker, he says.  But that could be from lack of exercise.
“  I used to do a lot of walking, but I don’t anymore.  I did used to swim, too, just on my back and I was doing really well until I had an accident in the pool.  I slipped, as I was trying to get out, and I banged my head and was knocked unconscious.  So I gave up the swimming!  If I fall, I can’t protect myself, so I have to be very careful where I walk and I have to look at every footstep, in case I trip.  And my balance isn’t good.  Otherwise, I am doing okay.  I’m still here, anyway!”
Amby has always maintained an optimistic outlook.  He never believed that he only had three years to live, and has carried on as best he can, adjusting to every new change as it happens.  His quality of life changed dramatically, but he has been able to hold onto some of the things that he loves. 
“I listen to a lot of music.  I’d like to be able to read, so I have a page-turner on order.  And I’m waiting to get a voice-activated computer, which I’m looking forward to.  With that, I could write a few letters, or maybe my life story!  Something for my kids to read, when I’m dead.  I have six children and seven grand-children.  They keep me going.”
He has also been able to keep his relationship with Margaret.  Was that difficult? I ask.  They both laugh.
“No.  We don’t fight any more than we did twenty years ago.  Nor any less!”
Margaret points out that the most difficult thing has been the fact that Amby does not qualify for any kind of pension or disability allowance, because he didn’t accumulate enough stamps and because she works full time and this puts a strain on things.  He doesn’t even qualify for a bus pass, or a free television licence.  And he was financially independent since the age of fourteen, when he started working.  If the couple got divorced, they point out, Amby would qualify for all of the disability allowances and benefits, so the State doesn’t make it easy for people in this situation to stay together.   The fact that Margaret is caring for him isn’t recognised, and she doesn’t get any assistance for doing so, even though she works full time and then has to look after Amby when she is at home.  This is something they would like to see changed.
Was there ever a time, I ask, when you would have despaired, and given up on living?
“I’ve never given up on it, no.  I take one day at a time.  I lose the head, an odd time and get a bit depressed, maybe.  But not as often as I used to.”
He points out, though, that the last three cases of assisted suicide in Europe have all been Motor Neurone patients, most notably Reginald Crew, in Zurich, whose family may yet be prosecuted in England.  Amby says he doesn’t know what he would do if he got to the stage that Reginald was at, of being completely paralysed.  But he believes that a person should have the right to choose assisted suicide if they are in that situation, as long as it is properly organised.
There is only one treatment available, for the disease, it’s called Rilutek and Amby participated in the trials for it.
“  I had to fly to Newcastle every month, for eighteen months.  Which cost an absolute fortune, because none of the health boards were interested in financing it.  My plane was three hundred pounds return.  And I wrote to Aer Lingus, asking them to help, but they weren’t interested.  So I’m delighted they are getting a good shake-up since.  They deserve it!”
At the end of the trial, he was offered the drug, and was told that it would prolong his life by three months. 
“I don’t know how they came to that conclusion, it’s ridiculous.  I took it for six months and it made me extremely ill.  So I stopped taking it and I warn other patients who are offered it that they might just as well take a sugar lump.  Drugs are very expensive and the drug companies are making money out of it.”
Eithne Frost from the Irish Motor Neurone Association says that many other patients have reported tolerating the drug, but that it is impossible to say whether it prolongs life as we don’t know what would have happened if the patients hadn’t taken the drug.  Some people have tried acupuncture and reflexology, which Eithne believes can alleviate pain and improve general morale, but as yet no-one has ever recovered.  Amby thinks that alternative medicine is a waste of time.
“  A lot of people turn to religion and praying, too, but that’s not for me either.  Not that I don’t believe, or anything.  I just don’t see any point in it.”
You’re contradicting yourself there!  I point out.  He laughs.
“Am I?  I believe in God, but I don’t believe in miracles from statues or holy men rubbing your head and healing you!”
Does he think God can make miracles?
“If He’s around, He probably can.  I haven’t seen any lately!  I believe in a Higher Power, maybe more than God.”
And has he asked that Higher Power to intervene?
“Oh, I’ve asked it on a few occasions, yes.”
And has it replied?
“Well, maybe it has.  I don’t know.  I’m still here eight years after I should have been dead.  So maybe my prayers were answered.  Up to a point!  But I’m just going to live as long as I can and go when I have to.”
Is he resigned to that?
“Ah, yes.  I know I won’t live to be ninety, but I’ll live as long as I can.  Who knows, probably something else will kill me, before Motor Neurone does!”
Before I leave the house, Amby shows me a contraption that he has designed in order to be able to light his pipe, without the use of his arms and another, a kettle, which he has specially adapted.  And he asks me to say that he is more than willing to talk to anyone who has been diagnosed with the disease, and to offer any advice or support that he can.
Amby Costello can be e-mailed at  acmc@eircom.net
Irish Motor Neurone Disease Association 1800 403 403