Yes I’m on the riluzole Again some people say that it only increases your life expectancy by 3 months but to me 3 months is better than nothing. I’ve heard other people saying they get really bad effects from Rilutek and it makes them very ill. I was ill on it for the first couple of months but after that I’ve had no ill effects since. It was making me ill in the fact that it was making me feel quite nauseous and shaky as if I was about to come down with something. And I did vomit quite a bit with it, on it. But once I’d got past the first couple of months I’ve been fine. My body’s obviously got used to it now so. I would say persevere with it for the first few months at least anyway before you decide to give up on it. And as I say, if it does give you a three-month extra it’s better than nothing at all.

So you persisted with it.

Yeah I have, yeah.

And you decided to go on, to take Rilutek. Did you?

Yeah. Well, when we first went and he gave me the diagnosis, on that very first day, he said, ‘You can get this today and start taking it straight away. So I sort of did. I’ve not had any side effects that I’ve noticed anyway. I’m, to, to be perfectly honest I don’t think it does any good. That’s my honest opinion but you know, you’d be a fool not to take it if it doesn’t have any side effects and it might do some good. You know, because afterwards you’d only regret it afterwards. So, so I take it. It’s no trouble to take it, so. I also took other things like because there’s always rumours going around that such and such a thing might be helpful like co-enzyme Q10, or lots of vitamin E and stuff. And, you know, from time, and creatine was another one at the time. And none of these have been sort of proved although some of them they have done trials on them, and for some of them I think they are still doing trials on co-enzyme Q10.

So I did take those for a while thinking maybe they’ll do some good and I should take them just in case. But later on I sort of stopped taking them because it, you can spend quite a lot of money on them and you’ve no real knowledge that they do any good either. So I think most people are like that, when they first get diagnosed, because as well as sort of organising all the aids and things they need they, they try and find out, you know, they imagine that there must be something that, you know, and, and that soon they’re going to find a cure and there’s something just round the corner or they could take this supplement and that’ll work and, and I think later on you sort of realise there isn’t [laughs] Because if there was, you know, obviously if there was then, then, I think as you get to accept the illness more, so you know that you really have got it. And you also accept that there isn’t any known cure for it. So.

The only successful medicine that is proven in trials seems to be to take riluzole or Rilutek, one of those is the generic name, I can’t remember which, and vitamin E and vitamin C, which are as antioxidants. I remember being rather disappointed when I discovered that they seemed to extend the average life expectancy six months or so. What I don’t know, and nobody really has done the research to find out, but it seems to be intuitive, is that if you are deteriorating slowly then it extends it longer, and if you are deteriorating very fast, with central core, then you don’t get the full six month benefit, may be three. I don’t think the statistics have been done on that.

Are you taking that?

I take that. It has one slight downside, and that is that one of my liver functions, the function that deals with toxicity, is raised. It should be 30, 50, something like this. In mine it’s been 130, 180. There was a drug trial that we did for a drug from Japan, which proved to be negative, proved to be totally ineffective, which they worried about, they didn’t let me start it the month I was supposed to start it because of this liver function being raised. But I’ve lived with it for five years. It doesn’t seem to have any effect on me. It’s only one of the liver functions. I mean, they test for about five things each time I have blood tests, and it’s only this toxicity test.

I did go on to a minocycline test, well, I need to be tactful here, I did take minocycline, which is the result of one or two tests, which is currently being tested. And I was put on technically a drug trial. And I was taking it originally because I had a bit of a problem with my skin, which I think is probably related to the other drugs I take. I seem to have flaking skin, itchy skin, itchy forehead. Anyway the minocycline would have perhaps cured that. It may have raised that. I’ve certainly been off it now for five or six or eight weeks, because it seemed to raise this particular count in my liver. I’ve recently had another blood test to check if the count has gone down and it was the minocycline. If it hasn’t, it’s just a cumulative effect of the riluzole. I take nothing else.

Footnote’Mincocyline is an antibiotic normally used for severe acne. Previous research suggested it may delay onset and prolong survival in MND, but the most recent clinical trial results reported in May 2007 have been disappointing. Seewww.mndassociation.org/research/research_explained/

Oh, well, I decided not to have – what’s it called, the?

Riluzole?

Yes. Because I thought I would have it after talking to professor. He said, ‘Well, you can always abandon it. And then when I got home I realised how long it takes to get rid of things in your body. And I seem to have responded very badly with side effects to almost every medication I’ve ever had. And so I thought, again, what matters is quality of life, not side effects and battling. Just to take the natural flow of things.

I have a great friend from, mind you another friend of mine, living in Canada. He had cancer and he had treatment which knocked him out for the last year. He was a professor of English. And it just, you know, it was worse than being dead. And I think a lot of people say, ‘There are no effects. But I don’t think I’ll risk having side effects, because the anti-cancer things have all given me side effects. And as I say, I think I’ll go with the flow. And hopefully by living a sensible life I can keep up for as long as the, it lets me, and see things clearly when I’m not tired [laughs] and so on.

Do you still see the neurologist?

Go once a year for a check-up. Not that they do too much usually. And to remind them I’m still around and also to remind them or to ask about any research projects that might be available or coming up soon. It’s in many ways I think the only thing I can do to help or the main thing I can do to help myself and other people is to put myself forward for research programmes. Unfortunately in a way PMA is as I said a rare part of a rare disease and what is I think correctly in my view needed is a solution to ALS. If that comes then one would hope that PMA is cured at the same time. And so I can understand people putting their research budgets into ALS research rather than PMA research.

And do you take Rilutek?

Yes I do. ‘It took quite a while to get it and it was before NICE, the National Institute for…

Clinical Excellence

Clinical Excellence, thank you. It was before NICE issued an edict saying that riluzole, Rilutek had to be provided for people with MND. Prior to that most, I think the majority of people who asked for Rilutek got it. And I still haven’t got to the bottom of this but as far as I could work out in [this county] there was a problem. It wasn’t being issued or that’s, that was my understanding but I found out later that it was my local Gps practice manager who was stopping it, not the county. And as you can appreciate that didn’t go down very well. It’s about ‘3,000. It’s ‘5 a tablet, two tablets a day so ‘3,000 I think it works out to about a year. I have no idea whether it’s helped me or not and neither have the medical profession. But on the basis that it perhaps adds a third to the life of somebody with ALS then one would hope that it would perhaps add a third to a person, a third of their guestimated life to a person with PMA. But as I said there’s no proof one way or the other. It’s because all patients are different. There is no norm.

Have you had any side-effects from it?

None whatsoever no. I did go and have blood tests every six months for a while but the neurologist suggested I make it a year and that’s what I’ve being doing the last few years. No problems whatsoever which I think is the norm as I understand it.

And obviously Teresa herself knew what our thinking was. I think in some ways she was probably more realistic about her situation, probably than anybody else. There were many things going on in research, new trials. It actually at times there looked as if perhaps a protocol for the treatment if not the cure or the substantial prolonging of survival time with MND appeared to be perhaps just a little round the corner, just over there, not too far away. Perhaps people like me hung on to that perhaps a little bit too much. Sort of thinking that, you know, maybe she’s going to beat this.

There seemed to be so many things coming together at the right time. There were new clinical trials on different drugs, March, April and May of 2006. We had her as a candidate on a number of different things including a trial that was being looked at in Finland. ‘When we actually contacted the people in Finland to suggest, recommend Teresa for that trial, we obviously as a courtesy contacted her consultant and said, ‘This is what we’ve got in mind and hope he hadn’t got any objections. Only to find that he had already put her forward as a candidate himself so which we thought was absolutely splendid.

How did you find out about the trials?

Basically through the Internet, forums and to a certain extent using resources which were probably more particularly designed for use by health professionals. Following up links on research and development that were reported at the different Motor Neurone Disease Symposiums which go on each year. Looking back through, at the reports and seeing if they led anywhere. Looking at similar resources in the United States and elsewhere in the world. Being aware of some of the alternative medicines and some of the more dubious things that were being reported. And obviously having to be very circumspect that there was a lot of talk at the time about a doctor in China who was doing stem cells, injecting stem cells, costing a vast amount of money. It looked good, it made sense and it was certainly sounded a very attractive option.

And one can understand why people got money together and paid these vast sums to go and have this done. The science wasn’t there. But you can understand that if people are desperate enough they will turn to every avenue. And that’s what we were doing in our way. That we were looking to see if the research anywhere was moving ahead in any corner of the world. And it was these things that led to enquire about trials both here and overseas. And certainly it may have fostered the view that perhaps we’re not very far away. Can we win some time to get to the next stage or perhaps the next drug could be the one that’s going to help buy another six months, another three months, another twelve months whatever.

Obviously I am aware that with trials that to be a candidate for a trial often the disease should not have progressed beyond a certain tipping point. And we were concerned to try and maintain Teresa’s health at the highest possible level and arrest things as much as possible. Hence looking at these additional treatments. The one that appeared most attractive at that time was supplementing riluzole with minocycline. There were mixed messages on this because the, because the trials in America did not yield the same results as the trials in the UK.

Teresa, herself didn’t seem to share the same level of optimism. She seemed to think that, took the attitude, the philosophical attitude, you know these are the cards she’d been dealt. She would play them and make the best of it and actually seemed more concerned about us and how we were going to cope after she had gone. That’s something I find very difficult to sort of come to terms with. It shows the strength of the person that she was. Even when her own mortality was the issue she was more concerned about others.