What about holidays? Have you been on holiday?

No. That is because airlines in general and most hotels abroad, as well as I imagine most cities in other countries, are not disabled-friendly in any shape or form. It is a major obstacle, although some people do get round it by making lavish preparations to go to places. Obviously some of the big airlines might be able to help, but unfortunately the budget airlines are definitely not disabled-friendly. For a person in my condition the hassle and stress of travelling anywhere far is formidable. There are a few places abroad where one might go, such as a hotel in Malaga that’s very disabled-friendly. It has all the necessary equipment. It’s English run, actually. It’s got hoists and medical beds etc, but getting there is a major problem. However much I’m keen and active, as matters stand at present it’s always going to be a difficult situation. There are issues of going to the airport, hanging around at the airport, getting past check-in and through customs, being moved about, and moved from my wheelchair- because you have to be physically moved onto a special trolley to get onto the aircraft. The hassle of going anywhere abroad is difficult enough, but the cost is prohibitive, because of course medical equipment and facilities are extremely expensive, so that any hotel that caters for disabled people has prices that are about twice that of a normal price of a hotel room. We’d also have to buy upgraded seats with long – haul airlines or at least three seats with short – haul airlines, and take at least one of my carers with us. So the price is prohibitive.

I do have a nebuliser for my phlegm, which may be due to a sinus problem, but for whatever reason I have it I frequently don’t have enough strength to remove it through coughing. Naturally the imagination runs riot with additional problems like this. There have been occasions when I’ve imagined that I’m short of breath or that I’ve difficulty swallowing because I’ve got Motor Neurone Disease, and things like that. Up to now, thankfully, such apparent symptoms, except for my phlegm, have been mostly the products of my imagination. All this does affect the psyche, but on the whole I try and not think about it. I do not think much about the future, because if I did, I’d go mad. We have to take each day as it comes, because this time next year they might find a cure, or they might not. My condition might stay the same, or improve, or get worse. It’s pointless to start wondering, ‘What will happen this time over next year?’

I don’t get tired very easily. I’m rather a bit of a fighter. However, it is a hassle to have to require someone to feed me, wash me, dress me, put me in the wheelchair, and do all the other chores around me and for me. It doesn’t take so long, but with my limb muscles largely paralysed the minute that I’m moved I feel the need to stretch. It is, of course, true to say that obviously after a busy day – for instance I go for a walk and then later I’ve got something else on, and then I go home – I am rather more tired than I would be if I were well and able to get out myself. So tiredness comes into it. Worse, actually, are side effects such as sitting in the wheelchair for long periods, which causes discomfort in the back, the bottom part of the spine and the buttocks. That can be a major irritant and a major source of pain, which is why my nurse or carer spreads ointments on the affected parts to try to ease that situation.

I’ve been going with a stick for about thirty years because of chronic back pain. Whether that had a bearing on the odds of Motor Neurone Disease developing I don’t know, because I’ve had a back condition and was in frequent pain since I was young. I was on Brufen tablets for about twenty years. In terms of the current illness, namely MND, in the autumn of 2004 of course what happened was the first onset of my leg weakness [deletion]. I’d been tripping more and more, which I thought at the time might be because I’d had a very serious pneumonia at the beginning of that year and I thought I was excessively tired and trying to get around too soon. At first I put it down to that. But the first serious thing was when I went to a friend’s house and I had to go to the toilet. I managed to walk halfway up before my legs failed me and I had to be dragged up to the top. Afterwards I gingerly walked down again. That was the first time I really felt there was something seriously wrong with my legs. This was about September 2004 – no, it was October 2004. Then about a month later, in November 2004, I had to resort to a walking frame with wheels. First of all I was given one of those triangular walking aids without a seat, and then I got a proper and steadier one where I could sit down. I used that second aid until the spring of 2005, when I found that even that was becoming too hard.

Over the spring and summer of 2005, I was finding less ability to walk at all, and from about April 2005 I started using a wheelchair on a regular basis. In about June or July 2005 I took some hesitant steps with the help of my day nurse and her husband during a walk in a local park. In the autumn of the same year, with the encouragement of, and a considerable amount of assistance from, my nurse and my carer, on a few occasions I managed to take a few steps whilst still living upstairs – we’ve now moved down to the ground floor. They were trying to encourage me by saying ‘Well, practise what you can with your legs. I emphasise that this was on only a few occasions and then my legs just folded, and stopped working altogether. So my last steps were in around October 2005.

Have you ever used a scooter, one of those electric scooter things, or only the wheelchair?

I couldn’t use an electric scooter because my arms by then had failed. Following on my right hand’s deterioration my left hand started to fail in the summer of 2004, and whilst it declined slowly, by the end of 2004 I was no longer able to do anything useful with it. I was virtually paralysed in both my arms and hands.

We were told by the wheelchair people, ‘Obviously you can use the wheelchair, but try and walk as long as you can possibly walk. If you sit in the wheelchair you’ll never get up again. I took their advice. I did try, still in the latter half of 2004, to do some leg exercises. That became increasingly difficult as time went by and my legs got weaker, and increasingly there were occasions when I wasn’t able to get up from the floor.

What’s your general attitude to progression? Do you try and keep it to the back of your mind? Are you looking out for symptoms? Are you thinking ahead about what other equipment you might need?

Well, we obviously have tried to react as matters progressed. Perhaps it was a mistake, because maybe I should have earlier gone for a hoist downstairs etc. We tended to just say, ‘Well, let’s see what happens with the equipment we’ve got.

To a large extent this approach was fine, except that some of the equipment took time to install. I had to be washed, for example, in bed for a good few weeks before they installed a bath lift. But otherwise we tended to sort of take things as they come.

That’s the trouble, isn’t it, it’s this lead time on equipment, that sometimes if you haven’t already got the plans in place that you, you get high and dry for a bit, before it.

Yes, I tend to feel, though – there is a point to that. There is that point that you’re then left high and dry – in the literal sense as far as the bath [laughs]. But again I feel that anticipating that you’re going to be worse makes you worse. I’ve always felt that. And that’s why I’ve tried to resist it.

I take noni juice’ [which] has a lot of serotonin’ and ginseng, which apparently has a beneficial effect on the muscles. I take these on alternate days. After which, in order to assist my bowel movement I take, not necessarily yogurt, because that is also a bit artificial, but proper sour milk, either bought from a Polish shop or made by ourselves. I’m also given fruit juice to drink before breakfast. After that I have breakfast which at least two or three times a week includes egg, because apparently egg white and yolk are very good for the muscle tone. Thus I frequently have boiled eggs. I also have fruit with a cereal, or various cheeses on toast, or jam or honey on toast. And that’s breakfast. Then I have at lunchtime a proper meal, which usually includes fish, because fish, apparently, is more beneficial and less toxic than meat. In the evening I tend to eat rather little because I have a sedentary lifestyle and need to be careful about how much I eat. I’ll therefore eat perhaps a sandwich or something.

Now, one other thing’ I drink – I won’t say copious amounts – but I drink alcohol. And I refuse to be told not to. The reason for that is it’s an excellent antidepressant. Wine at any rate contains a detoxifying agent, and many stronger drinks have other beneficial properties. I will not change my lifestyle in that way. In fact I’m trying not to change my lifestyle at all wherever possible, except I can’t do things that I used to do.

In April 2005, as suggested by a friend of ours, we went to see a doctor in a clinic in Germany, in Hanover, Germany. This doctor was claimed to be able to help cure or at least improve the condition of people with neurological illnesses like mine. We went over there, and they did blood tests on me to find out what if anything was in the blood that might be causing this. Surprisingly it came back positive for Lyme Disease or Borrelium, a tick-borne disease which amongst its many symptoms can cause paralysis. Now obviously one can say that this is all nonsense and that he was just trying to get money out of us because it was a private clinic that we went to, but many independent people we met claimed to have had the same symptoms which greatly improved after treatment with a strong, especially prepared antibiotic. Since then we have found a number of websites which refer to a possible linkin some casesbetween Lyme Disease and certain neurological conditions. Furthermore I’ve been an avid walker in woods and fields. I love nature. I’ve often crawled into places you probably wouldn’t imagine going into, looking for mushrooms in the autumn amongst other things. It is an unfortunate fact that ticks are becoming more common in this country, probably due to climate change, and some of the ticks have parasites that can cause some rather nasty illnesses including Lyme Disease. The doctor prescribed antibiotics for the Borrelium or Lyme Disease, and other medicines which supposedly act positively on the neurological condition from which I was suffering. At that time I didn’t know until I spoke to other sufferers and went into websites dealing with Lyme Disease that it can cause paralysis if left untreated. In the beginning a range of different symptoms, a feeling of influenza, rashes on the body, swollen glands, etc, may occur which may or may not come out at the same time.

Lyme Disease sufferers can feel generally ill, but unless they can pinpoint where and when they were bitten they have no way of really knowing that they’ve been infected. Giving busy lifestyles they may not give their medical problem much thought until it becomes much worse, and by then it may be too late to tackle easily. Now as far as I was concerned I didn’t know that it might cause paralysis.

Apparently lots of people get it on the Continent. Here it’s less known because the spread of ticks is rather slower and less common, although they’re beginning to be widespread in the south of England. We therefore had hope that perhaps it was something to do with that, yet in this country we were met with disbelief by the medical establishment. The idea that I might have Lyme Disease was dismissed by the medical profession in this country almost out of hand.

Given what we had heard and what I had read in various websites concerning symptoms of Lyme Disease, this caused us to wonder whether my condition may have been brought on or made worse by an infected tick. I’ve had three bouts of pneumonia in recent years and had all sorts of colds that I couldn’t get rid of. Amongst symptoms I did experience a lot of itching and swollen glands under the armpits. I also had frequent redness and discharge behind the ears and in my navel. I was told by my nurse, however, that it could be simply caused by the fact that I was ill. Many of the symptoms remain and many parts of my body are affected by itching. I gathered from various websites that these effects can also be caused by Lyme Disease. After I took three sets of antibiotics, which were given by injection, according to further tests done in Germany my Lyme Disease appeared to be on the way out. We therefore didn’t go back to Germany again, especially as it was expensive, and having retur