An inspiration to others

We were talking generally about the Parkinson's Disease Society, Jack, and the fact that you retired only recently?

I retired from Adair and Neely's in May of this year. When I say I retired I mean I changed from an active role into a passive role and would be officially classed now as a consultant. Still within the company, but there in an advisory role really.

You are a very familiar figure about the town...was it the fact that you have Parkinson's that maybe it 'forced your hand' a bit...would you rather have stayed at work?

Yes, I would have preferred to work on and was quite happy to work on but I felt, in the early days I had always said once I stopped being able to do the thing right then it was time to look at yourself, because the nature of the funeral business is that you have to give your all, really, 24-hours a day, seven days a week. With the onset of Parkinson's I was finding it a struggle to do that - the night work - obviously you could be out all night. You could be out all night three or four nights a week, and years ago when you were young and fit it wasn't a problem, but I felt come the time when the Parkinson's was setting in, that I wasn't fit for it.

How does it actually effect you, Jack?

It has slowed me right down. It is basically a deficiency of a chemical called dopamine in the brain, and basically a cell dies or a few cells die and that causes extreme tiredness, slowing down and I mean slowing down big time, it causes severe aching of the limbs most of the time all of the time like a toothache type ache. For some - and I am not too bad - there is a tremor. It used to be called the shaking palsy, rather crudely, you know? We have this tremor and I was able to disguise it for a long time, but then it got so bad...well I don't try and disguise it any more. So the onset of Parkinson's...I was 67, and I thought 'Time to bow out actively' for the sake of myself and for the sake of the public I felt I wasn't able to give them all that I wanted to give them.

What age were you when you discovered that you had it?

I was 60.

Really?

Just turned 60...probably a year before that I knew I had it or I had a very strong suspicion I had it.

But you hid it?

I hid it. Well, the first time it actually hit, I remember it fondly, being in Cyprus on holiday and we were playing a card game at night, and the cards were diddling all over the place. I was leaving cards down on the table and was shaking and the people with me were saying 'What are you diddling about?' you know? So that shake kept going and I started to feel not 100 per cent, so eventually I plucked up the courage and went to the GP. I wouldn't be the type who would run to the doctor, I would say 'Ach it'll go away', but I realised myself something had to be done, so I went to the GP and he had his suspicions initially but thought 'Not you, you would not have Parkinson's', but referred me to a consultant. Eventually I got a brain scan and eventually the bombshell hit me. It was a bombshell.

How did it make you feel?

Coming from someone who had, for instance, led expeditions through the Duke of Edinburgh Award Scheme over the Mountain of Snowdonia, had canoed, had rock climbed, was very very active and all of a sudden said 'I have Parkinson's, what's the future?' I'll be very honest, from the onset of the diagnosis for about three to six months, I felt very sorry for myself. I didn't want to know anybody, and 'Why me?' and I blamed the world and blamed everybody...

I suppose that anger phase was something you just have to go through...

Yeah, anger it was a wee bit like bereavement: The anger, the shock, the grief, the 'Why me?' the 'If only'. Those are all the words associated with bereavement and I sort of grasped, and then one morning I said to myself 'You have a choice here, you can either feel sorry for yourself for the rest of your life and get worse and worse with depression, or you can fight it and get up and go.' From then on, thankfully, I done that.

You do do a phenomenal amount - even last week we had a photo of cheque presentations and all sorts...was it a conscious decision then to show the disease who's boss?

Yes, we like to control the disease. Obviously we will never win that battle, but we will certainly have a damned good fight at it. I joined the local branch of the Parkinson's group having got over that initial shock, and I found there were people there a damn sight worse than me who were able to laugh and grin and talk normally and I thought 'What the hell are you feeling sorry for yourself for? Look at these people'. Now, I have a colleague in Strabane, a funeral director who has fairly advanced Parkinson's, Michael Quigley, and he has got the greatest sense of humour and outlook on life and if anything he has guided me and made me the way I am now. The glass is half full instead of half empty. So it has really been all go since that.

That is so true, because you don't sit down!

No. Part of the condition is, sitting is your worst time. I could quite easily get up here now and go, sitting is a major problem. The palsy, the shake starts, and you get irate so I get up and go and I push myself. Now that's maybe counter productive sometimes, because the body can only take so much, so I start with great gusto in the morning and maybe by three or four o'clock I'm for nothing. This is one of the reasons when I looked at my own work ethics, I said 'No, you can't do it any more'. SImple things, I always use the example getting dressed in the morning, putting on cufflinks was a major, major problem, because you know my right hand is shaking like a fiddler's elbow, if you like, and you are trying to put in your left cufflink, you know? (Chuckles) I always joke when you go to the restaurant I use the clich 'People with Parkinson's shouldn't order the soup'. (Laughs) And, I blame Confucius for saying that, because you could have soup on the ceiling...these wee things which people don't realise which I, personally, have tended to look on the brighter side of and tried to make a joke of it, if you like.

It's no fun sitting there and not being able to do anything for yourself...

It certainly is not. Luckily, I'm fairly mobile and fairly self-sufficient.

You would never know when you meet you when you are out that you had it. It was a shock when someone told me...

I remember doing an interview with Radio Foyle and I can't remember who with, but the boy said 'You don't look like someone with Parkinson's', and I replied 'Well, what does someone with Parkinson's look like?' Other than if you are very advanced, it is very obvious. But, yes, I can wander about the streets with a stick to aid me.

You see, to me you just look like a gentleman who is out for an afternoon constitutional... you would never know...

Yeah, and I hope that is a legacy that I can instil in other sufferers, that all is not lost.

Tell me this, the earlier you are diagnosed and the earlier you accept you may have a problem and go to your doctor, is the prognosis better?

They say if you can get it before the onset of whatever, that drug management is much better. I think I benefited from good drug management. It is a wee bit 'hit and miss' with Parkinson's drugs. Some work, some don't and some have adverse, serious adverse effects. Six to seven years down the line I think I have got to the stage where I take, basically medication every three hours and some at night which keeps me going all night, and I have managed that now and I can lead a fairly normal life with that drug management...

You look absolutely hale and hearty...

Yes. On the face of it I've only got Parkinson's, that's the way I look at it, you know there are so many people more worse off than me, and if I'm going to get something then thank God it was only Parkinson's. That 's the way I look at it.

That's an amazing attitude to have.

And because of that attitude I threw myself into Parkinson's Foyle Branch, and eventually got elected chairperson and threw myself into fundraising. Raising awareness is one of the big things. There are 400 people in the city and the surrounding area who have Parkinson's and 200 of those people are still hiding behind the bushel.

Really?

You know? And I understand it for the very best of reasons, but it's those people that I am reaching out to.

How?

Research is a big thing. Like all the other nasty diseases in the world, we are searching for a cure. I personally think that a cure is pie in the sky, but what I am aiming for is better drug management and, obviously, the ultimate aim is a cure. But, if we can get better drug management and a better lifestyle and lifestyle management for those people with Parkinson's Disease....

That would be 99.9 per cent of the battle, wouldn't it?

Yes, then I will have achieved my aim, and you know, with fundraising, I never cease to be amazed with how generous people are. Fundraisers are a funny bunch and believe it or not you tend to feel like a beggar if you are going round doors or standing with a box shaking it, you are filling bags in supermarkets, and you know what it is like, people filling bags at supermarkets are probably the biggest offenders of the lot for not filling the bag properly. These are a lot of the ways that we raise funds and it never ceases to amaze me how generous people are in these days of economic hardship.

If someone wanted to do something for the society who and how do they contact within the Society?

Oh they can contact me on 07841076717 or the secretary, Fiona McDermott on 07779837511. My email is [email protected] and I'm quite happy to hear from anyone who wants to fundraise or get in touch for information.