Yeah, so I seen the neurologist about six months after I see - more, more than that, more than that, it was eight months after I noticed something wrong. He sent me for the test, EM, EMR test and EMG, which was again four months to wait. After that they sent me the letter from the hospital. So I will see the neurologist - I think it was about again five months. I tried to call him. Nobody answered the phone. I left messages on the answerphone. Nobody called me back. I called the hospital. They told me, I asked them if I can see private. They say, 'Yes, tomorrow.' They contacted me with a private neurologist in the same hospital. I make appointment for next day. They say so they will have my results. They have only half of it, without the scan, brain scan. And they then say, the doctor says according to this thing I should be seen by neurologist straight away. He say only half of it, the EMG test. And he make appointment - he haven't charged me any money because he say he cannot charge me because he got only half of my things - and he make appointment with my doctor, the doctor who was supposed to see me within the four or five months, for next morning. And he says, 'So probably this is motor neurone disease.' But he sent me for another MRI of the spine. I wait another four months. After that he say so he will send me to his colleague. I wait another three months because they sent the letter to the wrong address [laughs]. And they say, 'So probably it's motor neurone disease.' But what type, nobody knows. They don't say, at least they don't say nothing.

So how long was it altogether from when you first started thinking something was wrong to getting to this point?

'Over a year, much over a year. One and - nearly one and a half.

But you know, the speed how they work is - I went to Poland in August - September. I'd been waiting for MRI test here of the spine. They give me about four months to wait. I call them, I call, I find in the Internet somewhere, actually it was in the same hospital but a private company, they could do tomorrow, '1200, on same machine which normally they're doing for rest of them. But it's four months waiting. I went to Poland, I spoke to someone. They called to a hospital - it's again private, private, but most of the jobs there were for sort of NHS in Poland. They call them, and they says if I want I can be there tomorrow at 5.00. And it cost 100, sorry, 500, 500 - 500 Polish Zloty, which is 1 to 6, below '100, which cost '1200 here. And we went there. They did the thing. It was about half an hour, 45 minutes. I ask, 'How long we have to wait?''They say, 'So the result will be ready for Monday, because it's Friday evening.'

So that's'

I say, I say, 'So I want to go back to England on Monday.' She said, 'I will talk to them.' And I had Cds, two Cds and the photos and everything within less than one hour. And here, results 5 working days.
 

So in the January, I saw the consultant again, and he still said, 'Could be something or nothing, I don't know. Let's see which way it goes.' I said, 'Oh, OK.' He never mentioned motor neurone, and although I was extensively on the web, and I have got a slightly medical background, my father and stuff, and I do seem to know slightly more about it than a lot of people, somehow or other I missed the connection between the dropped foot and motor neurone, because if I had Googled 'dropped foot' and 'motor neurone' I'm afraid it probably would have said one of the first symptoms. For some reason I missed it, so I never thought about motor neurone. I thought the first symptom of motor neurone - how I could glean this - was something to do with the throat. But I got that wrong. In fact it's often the foot. But, OK, I missed it. So I was in sort of blissful ignorance, and being as by the January I still wasn't much worse, I wasn't that worried. I was a bit, obviously a bit anxious that this, we were now stopping running. I was still going to the gym, I was still doing the swimming, but I, you know, I was still, anxiety was starting to creep in here because we didn't know what it was six months down the road.

But I wasn't too bad. I mean, I could go on norm-, fairly normally, walking. And then January, February, March - in the May the running was all over. And I decided I'd take up walking instead, perhaps join the Ramblers or something. So I joined the Ramblers, and I had two fairly disastrous walks in the May. They were too long, I wasn't up to it. They were both of 10k, and one of them I remember was in the May and it was 10k. Hmm. I got half way round and I was swaying, my balance was going, you see. My balance was going. And I couldn't keep straight. And I still had no stick at this time, and the foot was still a bit funny, and I was like swaying. The balance was, was going. My balance was just not right. I could fall over quite easily for, to the sides, you know?

June, I was due back at neurology, so I didn't worry because my appointment was booked. And I walked in and I said, 'Well I've just been on two walks, you know, 10k, and it's not looking good.' He said, 'Well, you know,' I think he said something like, 'Well that was quite a distance, anyway.' I said, 'OK, all right.' He said 'I don't, I don't know what it is. You were clear on the, clear on the MS. Don't think it's that, you know, because, because' - then he said, 'because MS tends to have a sensory factor, and I'm sticking needles in you and you know where they are. So I think we'll, you know, rule that one out.' I said, 'Well what else could it be?' He said, 'I don't know,' he said, 'could go either way, I don't know.'

He never mentioned motor neurone. In one way, I'm really glad, because I was in blissful ignorance. In another way, I wish he'd said, 'It could go either way - for God's sake start enjoying your life, because if it does go one way, you know, if there's something you want, somewhere you wanted to go, some' - you know, like that. I, I wish he'd said something like, 'Go for it. It could be nothing, but if you've got the burning and you wanted to go on holiday and there's somewhere you wanted to go, go now.' But he didn't. I wish they'd said that, something like that, and just to - you know. Anyway we were, so now we were a year down the road and we still haven't got a diagnosis.
 

At that stage my GP said he thought I might have spinal muscular atrophy, SMA, so I then thought, 'Well, perhaps that is it.' And he said, 'It is not as bad as motor neurone.' And so off I went to a conference for SMA, because I thought, 'Well, if I am going to have this, I want to know about it.' So I went off to a conference and there I saw my present neurologist. I had seen another neurologist - yes, I told you that. I saw another neurologist and he said straight away, 'You are at the wrong conference.' And he didn't actually say, 'You have got MND', but he said, 'You are at the wrong conference.' So I wasn't as shattered as I might have been, I suppose, because I think I guessed that.

So then I went to see him and he's absolutely super and he's a specialist in MND, and I went to his again NHS clinic and he saw me and this was - let's see what date that was. This was last year. So they kept on stressing you won't die with SMA. Well, you know, it was all really just to make me feel happier I think. I think they knew that I was fussing.

I am still thinking it is SMA right up until January '06 and going on through January '06, sorry, until I went to see the neurologist. After going to the SMA conference I went to see the neurologist. And I went in July, and he immediately said, 'You have motor neurone disease', which he then proceeded to say, 'I expect that is a shock to you.' And I said, 'Yes, it is a shock to me.' And he gave me a tape of what he said. He then talked to me, talked it through and a brilliant tape of what it meant. And so then I came home and then I started dealing with it.

Now what do I say? It is shattering. I have very bad kind of moments but on the whole I think that it is true to say that 75 or 80% of the time I am extremely happy. I have got my head round it. I have reduced my lifestyle completely down from what a lot I was doing and, you know, although as I say some moments are very, very dark and black because you think you are getting better, getting worse and it is a bit black. That is enough of that.

I don't think it would have made a scrap of difference whether I had known at the beginning or not, and I think possibly psychologically they were all right. They were getting me up to the stage when I would accept the fact that I had this terminal disease. So I wouldn't blame anybody. I prefer the way the last specialist did it. But it could well be that he realised that I had been brought up to accepting this.