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He can understand why people feel driven to try anything in the search for a cure, but he's reluctant to spend thousands of pounds on unproven treatments.
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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. |
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He is keen to volunteer for any research programmes. He had some problems getting riluzole prescribed.
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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 GP's 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. |
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If you explain your mobility problems and ask people for help they are usually very kind and sympathetic.
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I think people have been sympathetic. You know I make it quite clear that I've got problems or the problems that I have when I go into somewhere. A better example in a way would have been, would be the hygienist at my dentists. They've changed her now but when she read my notes which said, you know, I'm motor neurone disease and can't use my arms. She was, I wouldn't say horrified but she was worried that she couldn't give me the suction tube to hold whilst she was cleaning my teeth. And I said, “Well we'll try it and see how we get on.” Her first thought was quite negative really. But as long as you, I mean people are amazingly kind if you let them know you've got problems whether it's getting things from top shelf of Marks & Spencer's or well helping you up when you fall over on occasion. I mean I haven't fallen over for I think about five months but it does happen. It will happen again I'm sure. As I said in general people are amazingly kind.
The best thing you can do is to ask. Just standing there like a lemon looking at the top shelf lovingly is and waiting for a member of staff to come by you could be there a long time. So it's quite a few helpful people in our local Marks & Spencer's [laugh]. |
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The consultant who diagnosed PMA 7 years ago gave him no further information and did not suggest he contact the MND Association. He would have liked to know more.
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In the penultimate meeting with the neurologist or test session with the neurologist we had asked what he suspected might be my problem and he did say motor neurone disease. At that point I knew nothing about the disease. And I didn't go rushing to the Internet to find out other people's opinion of it because I'm well aware that there's as much bad stuff out there on the net as there is good stuff. And who was I to well frighten myself shall we say unnecessarily, well not unnecessarily, prematurely.
When we went back for the final consultation the neurologist had made his mind up and he told me there and then that I had progressive muscular atrophy and that was about it. There was, as far as I recollect, there was no prompting, “You go along to the Motor Neurone Disease Association” or he did say, “You could go to another neurologist for a second opinion”. And he actually advised quite strongly that I did so. I suppose partly because it was PMA that I had which is relatively rare even for a rare disease. That was probably about the best advice he gave me if you like. And subsequently I did go to another hospital, another neurologist and came up with the same conclusion. But in terms of advice and care and that sort of thing there wasn't any available. I think things probably have improved but whether that particular doctor has improved his ways, I've no idea.
What would you have liked to have had then at the time? What information would you have liked to have had from them?
I suppose I would have liked to have more specific information about PMA. This is going back about, what eight years, something like that. So I'm not entirely sure what the Motor Neurone Disease Association website had to offer in those days. Anyway I wasn't put in that direction, pushed in that direction or advised to go in that direction. I think just more information about Motor Neurone Disease and well particularly my PMA.
The doctor, the neurologist did say that he obviously couldn't make any promises but that ten years was a sort of rough norm, ten years of life after diagnosis was a rough norm for people with PMA. And I've had it, as I said, getting probably on for eight years now and I'm still walking around and still toddling to the shops. I don't cook but some people say I couldn't anyway. So I think I'm doing much better than, well than 10 years anyway. And for which I'm grateful when compared to the vast majority of people who live for perhaps two years after diagnosis. |
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He advises everyone to contact the MND Association and take up the help and advice available from local branches.
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There's an awful lot of help out there if you want to try and use it. I'm aware that there are number of people around who don't think the Association can do anything to help them, or they think that the Association are too negative and that with a very positive attitude you can beat the disease. Well I think that's - it's just my personal opinion - I think that's not a very good attitude to take. Be positive at all times, try things - and also try and plan for the future as well...
And I should have said earlier regarding newly diagnosed patients is that they should get in contact with the Association as I said, and the head office has a website which is very useful, good starting point I would say. And I think the website is www.mndassociation.org. There are also local branches scattered around the country. And these branches have people called visitors who basically can visit you at your home if you request them to do so and give advice and guidance as to any problems you might be experiencing or might be experiencing in the future. The local branches also can and do provide funding for anything, really, whether it's a stair lift or a motorised scooter or whatever. I mean they may not be able to pay the whole value but they'd certainly be able to make some sort of contribution and give advice as to where to buy the equipment from. |
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For the first year Roland did not want to go to a support group. He worried about seeing others, but also that others might be upset to see him because he has PMA.
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If somebody who's wanting, thinking about going along to a branch but was perhaps a bit anxious about going what, what was it like when you went at first and what are the benefits of going?
Oh that's a very good question. In the, well probably my first year possibly longer I didn't want to go to any association meetings. Partly because I, mainly I think probably because I didn't want to see people who were poorly and were in a state, situation that I would be in some point in the future. A sort of a mini denial if you like.
And also I was aware that I was going to, you know I would not be typical. I'd, might sound a bit silly but I was a bit conscious that if I'm wandering around claiming I've got motor neurone disease and I'm there for year after year it might upset, upset people who were, weren't, hadn't been given very long to live, you know, one or two years. I mean that was, a silly idea of mine. And on the same vein it, it has been a little bit shocking on occasion. So we've, we've been going to both branches regularly for the last, I don't know, five or more years. And I can remember one occasion we heard a, two new members, patients talking about their experiences and six months later they were both dead which is a, well a bit shocking really.
So that's something that's going along to the group is something you had to deal with because you, you get to know people like that.
Yes, yes. Having said that one of the branches has at least two people who are in the same situation I'm in. So, well, just proves we're all different and you can't make, shouldn't make generalisations. There's no point in, it's, there's no need not to make friends on the basis that they won't be around in six months time because who, who's to know. And one of the, the guys is I think had the disease for over twenty years and he's trying to emulate Steven Hawking, I think, but who knows? |
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He tries to keep warm and avoid falls - his arms are too weak to break his fall. He uses his head to operate the shower, and has learnt to 'throw his arms' to grab the door handle.
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As the disease has affected me or as for how it has affected me it, as I said it basically started off with muscle wastage on one shoulder and then it moved to the other shoulder. And has moved to my hands after that really. I can still throw my arms around and I can use my hands but not very well. And if I get cold then my arms and my hands in particular become almost useless. I can still throw my arms around so I can. If I want to reach a door handle I can, I throw my arm at the door handle, grab it hopefully and then turn it although the turning part is necessarily quite weak because my strength is quite weak because I have no muscle or little muscle.
So the main thing about my condition as it is now is to remember to stay warm and not to fall over. Because again with no use of my arms if I trip and fall which is quite a common thing for MND patients to do I've got no way of breaking my fall. And it doesn't matter if it's on grass that's ok but if it's on concrete and there's an awful lot of concrete around the world nowadays I've got to be very, I've just got to be careful not to do so.
And when my partner and I go out walking we tend to hold, well link arms. But we're both aware that if I start falling then the best thing she can do for me is to let go because if we both go down in a heap and she gets hurt then I've done neither of us a favour by, I mean I might get hurt as well but that's. If there isn't anybody to look after me then that's, we've doubled the problem if you like.
Do you have any aids to help you with walking?
No. The only thing that might help me is, would be to get an electric scooter or something like that at some point in the future. But as for aids in walking that would involve carrying something around and moving it. And if it was a stick then I couldn't use, I couldn't move it. I couldn't lean on it and move it or lean on it and pivot. I mean, as I said I've got no strength in my arms so anything like that it wouldn't work. If I went for a trolley or something like, you can get stands which have wheels on and you can push them along but I think it's the same. It gives me, I've still got the same problem that I'd have to have to have the strength in my arms to move whatever device that was trying to help me.
And how long ago did your arms start becoming weak?
Well I suppose it was, I noticed, I started noticing it more after the diagnosis which was, as I said getting on for 8 years ago and it's just gradually progressed. I was going to say the fun of the disease if that's, it sounds, it probably doesn't sound, make much sense. But it's quite interesting trying to work out different ways of doing things, different ways of getting into a bath or having a shower or moving the showerhead. I mean, I do a lot of, well not a lot, I do a number of things with my head. So if I want to get in the shower and I don't want to get cold then I move the showerhead with my head one way and get the water the right temperature then get under it. Have the shower and then move the showerhead back again and then turn the shower off. And I mean that's one I've only really started practising in the last few weeks. It was, well it was fairly obvious that something to try. I didn't see it at the first.
You use your head for all of that for switching it off as well?
No not for switching it off. No I can throw my arms at the tap. |
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He is very pleased with the coordinated service provided by his nearest specialist MND centre. He feels he can email the neurologist in between visits.
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The good thing about going to the neurologist is that there are, you're probably aware, a number of care centres around the country. I think it's up to 15 now, or will be soon, where MND patients are encouraged to go. And it basically provides a number of services under the one roof which you can visit, well, on the same day, for example occupational therapist, physiotherapist, nutritionist, and the neurologist themselves. And rather than go piecemeal to Social Services or wherever, you can go to the care centre and if you obviously let them know what your interests are or what help you're looking for then you can prime them as to what matters you want to discuss and what help you think you need. In some ways the care centre I go to, it's like an extra GP, if I've got a problem that something doesn't seem to be right.
I had something about six months ago and I just wondered at it, and so I sent an e-mail off to the neurologist. And he replied that to the best of his knowledge the symptoms I was showing was nothing to do with motor neurone disease and he suggested I went to my GP. And that all took only a few days and it was nice to get that sort of informal diagnosis - not diagnosis - yes, diagnosis. But in the end I didn't go to the GP because the symptoms disappeared and the neurologist had said that, “If it goes away then don't worry about it.” Well, no - “You can go and have a, if you want to be certain, you can go and have a, go to the GP and have some tests”, and otherwise up to me whether I do anything about it or not. And I decided not and it hasn't happened since, so I'm unconcerned.
So having all the services together at one place is helpful. That's what you're saying?
Yes. So it's a deliberate policy on behalf of the MND Association to try and get these care centres around the country, as many as possible. Again in my case turning up at the neurologist once a year is not particularly beneficial to myself or to them, especially as I use e-mail to discuss things if I need to. I've also found the local Social Services, occupational therapist and physios to be very good and very responsive. |
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He has been talking to the MND Association about finding travel insurance for people with PMA. At the moment he travels a lot but without insurance.
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Holidays, well we've taken a great deal. One major problem area has been I've had to tell my insurance company that I have progressive muscular atrophy and they have excluded that from my policy. And I'm currently in negotiation with the Motor Neurone Disease Association - not in negotiation, but we're trying to find some insurance companies that will basically insure me or people with a similar PMA condition.
The Association is trying to get better deals - well, not better deals, just a deal of some sort, really, with an insurance company for people with specifically PMA. Somebody with ALS has perhaps got two years from diagnosis and the first year of that they may well be able to go on holiday. But obviously with somebody with PMA they could quite happily live, well, in my case eight years with the disease and I'm still relatively mobile as long as I don't trip over, trip up. And so we have gone on a great deal of holidays. I could list them out to you but this year I think we've been on three or four perhaps even five abroad: Cuba, California, Canada, Spain, Germany. Yes, and also trips around the UK. So I'm taking a risk by having PMA excluded from my insurance, but at the moment it's a risk I'm prepared to take.
PMA, as I understand it, is not something that's going to cause me great problems in two months' time or six - well, six months' time it might do. Who can say? Because any disease in the MND range progresses slower or quicker from one moment to the next. There's no guaranteeing what's going to happen, but we've just booked a cruise trip before Christmas and as I said I'm willing to take the chance that I won't have any PMA problems or PMA-caused problems on that cruise. But that is a major area - travel insurance, that is - where the Association needs to carry on pushing the insurance brokers to provide some leeway for people with the longer-lasting variations of the disease. |
