And something that I’ve found that helps me quite a lot with that is relaxation and belly-breathing. And also aromatherapy oils, like frankincense and lavender. Just inhaling on those is really, it feels like it opens up my lungs and it stops me panicking about feeling like I can’t get enough breath. And so also now that I’ve had that a few times and I know what causes it, I’m able to relax out of it much more quickly. Mm.

Do you take any other alternative, complementary therapies?

No. I’ve, I’ve, it’s mainly been aromatherapy. I’ve had a massage, particularly of my feet. I get very bad circulation and blue feet. Although people think that they’re just very tanned, so I just let them think that, but actually they’re blue [laughs]. But, yeah, they get, they get very cold. And it’s, it’s actually just really lovely to have touch, you know, the feeling of human touch. So massage is lovely. I haven’t really dabbled into reiki or acupuncture, really. I’ve had a little bit of acupuncture, but only a couple of times. And that’s just really more down to availability than anything. I think if someone was saying, offering me some and ‘Can I come round and give it to you’ then I’d take it. But, you know, I think I just sort of haven’t, haven’t really found somewhere on my doorstep or to make it easy.

And I think in terms of those sort of things, I do, I do, I’ve done a mind-body-spirit course – a couple of those, actually, in New Zealand, and I’ve found them hugely supportive. They really, really have helped me, and really helped me think about life and things in a very, in a spiritual way. But not in a, not – that sounds heavy – but just in a very, opening my, it feels like it’s opened my eyes, really, and has made me face a lot of things that weren’t always that easy. But it’s meant that I’ve processed them. And I think that’s been much – you know, a really healthy approach for me. It’s taught me meditation, and I do use meditation tapes, particularly if I have an upset day when I just sort of wake up and I’m just feeling really down, which I get every now and again. Again I’m lucky, I don’t, it doesn’t bog me down, but every now and again I’m just having a real down day, and, and if I put on a meditation tape and just do a half-hour meditation, I just come out the other, other side completely different and feeling much calmer inside, and stronger. So that’s a hugely beneficial tool. And it, and that’s what I felt like the course gave me, was tools to deal with things. It taught me belly-breathing, the value of water and, and just really the power of the mind really over your physicality as well. And really I know that if I did meditation every day it would be very beneficial for me. I still don’t do it [laughs]. But I know that it’s there to draw on if I need it.

When I was still at the stage where the diagnosis looked like being peripheral neuropathy, I tried a course of acupuncture. I should say that I’m not a huge believer in alternative therapies, but I’m prepared to give anything a try. And also quite often what you find in these situations is that friends and relatives and so on think you ought to try something. So sometimes I’m quite happy to go along as much as anything else to keep them happy, sort of for their benefit as much as for mine. Anyway I did try a course of acupuncture. Which was all right, in the sense that afterwards for a short time I’d feel quite sort of relaxed. But there’s obviously no longer term benefit from it that I was feeling. I continued with it really for quite some time, but obviously after awhile I decided it was too expensive to justify it, just for sort the very minor benefits I was getting. But one unexpected benefit if you like was that when I started receiving, when I was given more hospital tests, checking nerve conductivity, which involves sticking needles into you, I didn’t mind that as much as most people. And in fact the specialist concerned was rather surprised by just how well I was tolerating it. Of course the thing there was that after you’ve had about forty needles stuck into you for acupuncture, then it was really much less of a concern having a few more stuck in just for some electrical tests. But I think in other respects mostly the, I felt it worth going on for some of these alternative therapies, as much as anything else to keep other people happy, rather than having any great belief in it myself.

Six months on I have cranial-sacral therapy, acupuncture, and aromatherapy massage on my face. My energy is improved with these treatments. Also the circulation to my hands is better and my sinuses are clearer. This is to improve my wellbeing and to cope with the MND. When I over-exert myself, I produce excess saliva. This is very troublesome and drags me down. At night I suffer from a dry mouth which is equally distressing.

I have tried various medications to relieve the excessive saliva, but none are effective. I am currently experimenting with eye drops taken orally. There is a slight relief which wears off by the afternoon. It is not troublesome when I am sitting or lying, so I conclude it’s nature’s way of telling me to rest. It comes on distressingly when I am exerting myself. By late afternoon it is worse. Tomato juice and eating by mouth seems to pacify it. By the time I was diagnosed in mid 2006, my laugh had changed. Currently, my laugh is a hilarious sound and people are unsure if I am crying or laughing. It is an uncontrollable noise, very loud, strange, and most embarrassing [laughs]. Crying is very distressing because it increases the saliva and it is easy to choke on it. When the saliva is really bad I become emotional.

I wear magnets at night to help breathing. These were offered by the local hospice and are invaluable. Apparently they have an anti-inflammatory effect so I use them to target muscle aches. I take Echinacea daily to boost my immune system, and Bach flowers – Oak and Star of Bethlehem. These help mood. I am also taking Vitamin E and make sure I have a glass of orange juice daily through the [PEG] tube.

In the last couple of weeks, that’s as December wore on I think she began to realise that she wasn’t going to get better. And one of the triggers for that was that we were still looking for potential ways to test whether it was something else or not. Not to the extent that we kept going for further referrals to other consultants in motor neurone or neurologists but different people were coming up with different ideas. And naturally in our position you follow any lead you can. A very good friend of ours’

‘and who does quite a lot of homeopathic pharmacy. She lives in [a city], and her business is in [the city]. So that she knew people and thought that we should try some Chinese alternative medicine because there might be something to do, it might be something to do with her gut, and something to do with her digestive system and therefore we at least could eliminate that by going down the Chinese medicine route, which we did. And she recommended a very good Chinese doctor in [the city], or through a friend of hers in [the city] she knew this person in [the city], who had worked at motor neurone and stroke hospitals in Northern China and was very expert at what he did and so was used to the condition that Olivia was in.

And amazingly her energy levels which by then, this was back in I suppose October, her energy levels were getting pretty low and they were completely revitalised. The acupuncture and the herbs that he was prescribing made a huge change. Whether it was psychosomatic or not, we simply don’t know. But certainly the acupuncture was not, and she began to get movement back where movement had stopped. There was no doubt about that at all.

Whereabouts was that that she got the movement back?

In her arm and legs, and the legs were getting stronger again and the arms were, the hand movement and the arm movement was getting stronger. And so that filled us with huge hope, all three of us, and our friends. And so we went back on two other occasions. This was a weeks intensive acupuncture and herbal medicine.

But there are downsides to that in that for every time we went to see the Chinese doctor it was any number of transfers in and out of wheelchairs, in and out of cars, into offices etcetera. So we were using a lot of energy as well as restoring a lot of energy so it was a balance. We did five full days the first time. We did four days the next time and then we did four days on one last occasion. By the end of that last occasion we hadn’t progressed at the rate that the Chinese doctor thought that we might progress, in his experience. And he was coming to the view that actually there wasn’t a lot more that he could do. And I suppose it was at the end of that last session which was at the beginning of December that we really came to the conclusion that we weren’t going to, there was no short term fix for this, if indeed there was a fix at all. And it had always been at the back of our minds that, you know, that it was motor neurone and we were beginning to think that perhaps it was at that stage, all three of us but we kept fighting.

I was, very soon after diagnosis I was offered something called Scannar [Scenar]. I forget how you spell it SCANN something or other which allegedly was, well it, it was a quite a good friend of ours who recommended it to us or to me. And an England rugby football international was undergoing the same treatment as our friend offered. And so we went along to this clinic and there was the international and we had a session of what this machine could do.

And it was a Russian doctor who was doing the treatment and she asked me beforehand to try and I think pinch my forefinger and thumb together as some sort of minor strength test. And then we went through the treatment and then she got me to do the same test again and of course she announced that I was ten times better as a result of the treatment and her test. But I could tell from her test that she wasn’t pushing as hard the first time, the second as she had been the first.

And subsequently I’ve contacted the MND Association about this Scannar [Scenar] product and their reply has been that there is no evidence that this product does any good. The fact this comes from the wilds of, I think it was, it was an offshoot apparently of the Russian space programme. But anyway basically I didn’t believe it. I was convinced that she was a charlatan to be frank. Unfortunately our friend is, oh I say unfortunately it’s up to her, she has bought one of these machines and is giving people therapy, using it. I guess if it, you think it’s doing you good then it is doing you good.

What I’ve not contemplated doing it and I don’t intend to is to go on any of these stem cell treatments with. I’ve seen prices in five digits, in 10, 20, 30 thousand pounds for treatment in. It used to be in the States, the USA but they now seem to have spread to China and Holland as well I think advertising stem cell implants into your brain or wherever. And as the medical profession like to say there is no evidence that any of these treatments have worked. And there’s no science behind it either particularly. Having said that I can fully understand people wanting to take any, go to any extremes to try and prevent or arrest the disease. I feel as I keep on saying I think, lucky that I’ve got PMA and I think will have it for quite a few years to come. And there’s certainly no need for desperate remedies at the moment I think.

Yeah. His, Mike’s biggest desire is to get involved in stem cell treatment. But I heard, I was stood in the chemist yesterday, actually, and there was, on the radio they were talking about it. But what we’ve been told, it’s very much still at clinical trial – not clinical trial, it’s very much in the lab. It’s not being applied to human beings, other than in places where it’s not, it’s unethical, really, you know, where – we were approached by a company in Belgium to ask whether we wanted to go over to Belgium, Holland, wasn’t it? No, it was Holland, because [name] in Holland. Sorry, it was Holland. We were approached. We’d gone onto a website to have a look – we’d seen an article in a local newspaper – we’d gone onto the website to have a look at this company and I, it was my fault, I’d forgotten that I’d left our stuff on the bottom of this email, you see, or whatever. Anyway they, they rang one day and rang to say that could we go, get a ferry and go over to Bel-, to Holland? And they were doing these, they’d got a cure for MND and all this. Well, I knew, we both knew, really, but it didn’t stop Mike’s hopes going [gestures upwards], you know, like that. Anyway Mike’s cousin, who lives in Holland, he did a bit of searching around, and to cut a long story short we found out that they were just really a bunch of cowboys, and they were taking I think it was ‘18,000 off people to go and have this treatment. And of course it was false.

Was that the place that’s been closed down recently?

Yes, yeah, the one in Holland, yeah.

Yeah.

We were approached.

I think it was on ‘You and Yours’ or one of those Radio 4 programmes.

That’s right, yeah, it was. It was closed down. Because [name], Mike’s cousin, said to us, didn’t he? ‘Just don’t even go there. The horrible thing is, and we’ve discussed it, this at length with a lot of people, the horrible thing is that when you’ve got this disease you’ll search for anything. You’ll search everywhere and, you know, and people are, are paying huge amounts of money for stuff that isn’t going to work. Now we talked to the professor down at [London hospital] last November and we had this discussion with him, and obviously we were desperate to get some sort of cure or whatever. And he convinced us that, you know, not even to go there with it. You know, he said, ‘If anything, anybody’s going to know anything about cures for motor neurone, I’ll know about it’ because he’s on like the world stage with MND. And of course with us going to [London hospital], Mike was registered with him. So anything that goes on at [London hospital], we get to know about anyway. So that was good for us to go down there. So that, that was that, wasn’t it? But we’ve heard other tales. We heard a tale, Mike’s MND nurse said she’d just heard a tale of a woman whod actually gone out somewhere, to the Caribbean somewhere and had snake venom injected into her, and paid thirty-odd thousand pound for the privilege, apparently. So there’s, it’s not hundreds of pounds, it’s thousands of pounds.

And Mike knows that, you know, we’d go and live in a tent – if we knew there was a cure for motor neurone that was buyable, we would live in a tent, we’d sell everything that we’ve got and live in a tent. But you’ve got to be sensible about things. And we have to, you know, things do pop up and you think, ‘Oh that looks interesting’ but we have to, we’ve agreed together, we’ve discussed it, haven’t we? We’ve, we’ve agreed that we will be guided by the likes of the guy in London and Mike’s neurologist, who we got on very, very well with, and they operate very closely together.