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Sandy - Interview 36

Age at interview: 59
Age at diagnosis: 55
Brief Outline: Sandy was diagnosed 5 years ago (2002) after noticing weakness in one arm. His arms have been worst affected, and now his speech and neck muscles are deteriorating, but he can still walk well.
Background: Sandy is a retired Royal Navy sub-mariner, married with 2 adult children. Ethnic background/nationality' White British.

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Sandy first noticed weakness in his right arm about five and a half years ago (2001). He started dropping small items. At first his GP suspected it was a trapped nerve, but after six months things were getting worse. The GP referred him to a neurologist and MND was diagnosed in the Spring of 2002. Sandy was alone when he was given the diagnosis. He was told to 'go home and put his affairs in order', which was a total shock, but he prefers to be given information directly and honestly. The first person he told was his son, who was waiting to take him to watch a football match with colleagues from the golf club where he worked. He told all his colleagues straight away, and then told his wife as soon as he got home. He broke down telling his wife and then his daughter the following morning. 

Sandy had never heard of MND before, and was glad to be told about the Scottish Motor Neurone Disease Association, where he obtained lots of information. His local MND Clinical Specialist has been invaluable in providing information, helping obtain benefits, and ensuring care is co-ordinated. He feels he has a wonderful team of staff, and the physiotherapist, occupational therapist and speech therapist have all been very helpful in organising care and equipment. At home he has a page turner so he can read, a special mouse for his computer, an environment control system so he can control the TV and telephone etc., and an adapted bathroom. A Clos-o-Mat toilet enables him to look after his own personal hygiene, which he finds valuable. The OT and physio have helped adapt a neck brace to support his neck muscles, as the ones already available did not suit him. He is still able to walk three or four miles wearing his neck brace.

Sandy continued working as the golf club secretary for three years until his arms became too weak to hold the telephone and write at the same time. His wife has also stopped working and is now his main carer. He has kept active through fund-raising for MND, and he and his wife try to get away on short holidays as often as they can. Sandy sometimes feels frustrated and emotional, but does not get depressed. He takes the view that everybody is dealt a hand of cards and it's up to the individual how you play them. He tries to take a positive attitude, take each day as it comes and 'make the best out of a bad hand'. He has volunteered for research projects and lives in hope that a cure will be found soon.

 

The consultant neurologist told him to go home and put his affairs in order. It seemed blunt but...

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When, when the consultant neurologist told me of the, of his diagnosis, he said, 'There's no easy way to tell you. The best advice I can give you is to go home and put your affairs in order.' Now I thought about that and thought, you know, 'There must be a better way.' But personally I like the direct man-to-man touch. There was no beating about the bush. I knew exactly where I stood. And to a large extent with a service background that's what I've been used to. So it didn't bother me at all. I think, given the choice, I think I would prefer to be told directly what was, what was wrong. And I was quite happy with that.

Were you given any information at the time?

Not on the day. Shortly after diagnosis, a lady who's known as an MND clinical specialist contacted me and she informed me about the SMNDA, Scottish Motor Neurone Disease Association. And I got lots of information from them. I met various people who have either suffered directly or who have lost relatives with the problem. So in a short while we, my wife and I were, were able to become pretty knowledgeable about the problem and there was, we knew exactly where to go for advice.

I just want to ask you about your feelings when you were actually diagnosed.

Well, I was shocked. I, I didn't expect that at all. I'd led a pretty active life. I'd played sport all my life. I was a 6-handicap golfer at the time. And I knew all that was going to go. No, I was shocked. That's all I can say on that. I'd never heard of MND until that day.

 
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He told his son first as they were going to a football match after the appointment. He told his...

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At this point he [the consultant neurologist] asked if I had any idea what might be wrong with me. I had thought of Parkinson's disease or Alzheimer's because of the fasciculation I was experiencing, but he ruled these out. He told me I had Motor Neurone Disease and that at present there was no known cause or cure and that average life expectancy from diagnosis was 14 months - I should go home and 'put my affairs in order'. Well, I was gutted, never in all my wildest dreams did I expect this. I had heard of MND, Don Revie and David Niven came to mind, but why me? There had been no mention of any relatives ever suffering from this and so it was completely spontaneous.

I left Neurology and made my way along the long corridors of the hospital with a million thoughts going through my mind. What do I tell my family and friends and when do I tell them? My employer and fellow work mates had to be told - but how? Were we financially secure and ready to cope without my salary? Could I continue to live in our flat? These questions and many, many more all had to be answered in time, but my son was waiting for me and he would know something was wrong. I could not tell my wife - she was working until 10 pm and so was my daughter, but my son was waiting for me -he would have to be told. We were also supposed to be going to a football match - it was decision time!

On arrival at my car I told my son to drive down to the beach where we parked and I gave him the news. No airs and graces just the facts. He showed little signs of emotion, but that's him - I had my first 'bubble'. I felt a little better after this and so decided to go to the match, after all why should I spoil the fun of others. My friends were all keen to know how the appointment had gone and so I told them. It must have been one of the most subdued corporate affairs I had ever been to. After the match we took the long drive home, my wife still knew nothing of this and I was dreading telling her. On meeting her I broke down again, blurted out the news somehow and we went to bed, both crying. Oh! and Scotland were beaten 2 - 0. What a day, but I think the decision to go to the match was the right one, sub consciously I was already Living with MND. 

I awoke next morning feeling emotionally drained and I knew there was more to come. The President of the Golf Club [where Sandy worked as club secretary], my work colleagues and my daughter had to be told. My daughter had to be first but I did not want to tell her at work. She was the head steward at the club and would be in at 10 am. But could I keep the news from her until she finished in the evening? I doubted it! 

My first visit to the bar (not for a drink) at about 10.30am brought me face to face with my daughter and that was that, I broke down in tears once again whilst giving her the news. It was a long day after that. I met The Club President and asked if he would inform the Council of Management, I in turn would inform all other employees of the Club. I wanted everyone to know exactly what was wrong with me - rumours abound in a small community and I felt that by telling everyone myself there would be no rumours and to the best of my knowledge this seems to have worked. So with everyone told I could now return to what I enjoyed doing most - working at and playing golf.

 

He applied for Disability Living Allowance but carried on working until he could no longer hold a...

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I was told at a fairly early stage by the clinical specialist that I would be entitled to Disability Living Allowance. We filled in the application form, which I didn't find difficult, sent it away, and almost immediately we were granted it. I was still working. I worked for the first three years after diagnosis. I'm sure there are others who, who had to give up straight away, and this benefit would be of great benefit to them. And if - I know that if there are difficulties filling in the form, then there are people who will help you. Other benefits I had more difficulty with. Thankfully we've got a, a military pension and some pennies in the bank. I would hate to be in the position where we had nothing and I had to give up work immediately.

So what was it like continuing to work after your diagnosis?

It was okay. I was a golf club secretary. Most of the, the day-to-day tasks I continued to perform. I, I gradually became less and less able to write, which made taking minutes at meetings very difficult. But the club president was kind to me, and the club treasurer, all took notes. So between the three of us I was able to produce a set of minutes. Keyboard skills at that time were not too affected at all. But in the end I couldn't hold the telephone and take notes at the same time, and that was quite an important part of the job, taking bookings for parties etc. And so we decided to call it a day in April 2002 - 3 - 4 [checking with wife], 2004. And it gave us the opportunity to enjoy some quality time together. But from day one I, I asked the club president if he would inform the council of management and I told all my work colleagues, all the members there. I, I was aware that living in a village, rumours are rife. I thought by coming clean and telling everybody exactly what was going on, that would solve that problem, and I think it did. Yep.

 
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He tries to make the best of a 'bad hand' of cards. He advises others to inform themselves and...

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I think we're each dealt a hand of cards, and it's up to the individual how you play them. I tried to adopt a positive attitude and decided that' I had to make the best out of a bad hand. And I've done that.

Advice is difficult. I would advise them [newly diagnosed people] to read as much as they could about the disease and other people's experiences, because it does affect everyone differently. There is help available, and I think you have to swallow your pride and ask for it. With respect to an attitude towards the disease, I would say, 'Don't give in. Just keep doing what you're doing for as long as you can.'

 

He'd like to see a keyboard you can use on the TV set so other people can share in what you're...

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OK. And now you use the computer with an aid?

The aid is a rollerball mouse and on-screen keyboard. That is becoming more difficult now, and I'm going to be in touch with - did I mention the charity Abilitynet? I'll be in touch with them very soon to see if there's anything I can do with my feet. And we also have to think, that as my speech deteriorates we have to find a means of communicating. Now, at the moment there are one or two different keyboards that we're trying, and they're very successful. But it means everybody else must sit behind you when you're trying to take part in the conversation. But it doesn't work like that. So I'm looking at trying to put a keyboard on the TV set. I don't think it will be impossible, but I haven't yet found anybody that can do it. And that way I could sit here with the family and if I wanted to say anything, I could put it on the TV. But we'll get there.

 

He can still go on walks but not as long as he used to. He still goes to his local pub sometimes...

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Well, there's not much [laughs] I can still do that I used to do. I had a very active life. I've been known to walk over forty miles in a day. I can now walk maybe three or four as long as I get plenty of breaks. But I do have to wear a neck, neck brace for that. And at the moment we're trying to work out how best that should be worn. I miss - I had a very active social life as well, and that has obviously been curtailed. I do go to the pub now and again and I'm well looked after by my friends and staff. And I do go to the golf club, where I'm looked after. But going out for dinner and things isn't as, isn't as fun as it used to be. We still do it, but only on a rare occasion.

You mentioned in the piece that you write that you need to sit down to drink when you're in the pub. Can you tell me about that?

Well, it, it got to the stage where I couldn't stand and lift a, a pint of beer. I had to sit. And so one of the local worthies in the village gave me his stool. He's in there, I have to say, a lot more than I am. And it gets to the stage now when I walk in that whoever's sitting on that stool is asked if they would kindly get up and allow me to sit there. It's become a bit of a joke, but that's good, I enjoy it. And if anybody took offence, I wouldn't mind, I'd go and sit somewhere else. But, no, it's accepted, the staff are good, yeah.

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