Roland

Age at interview: 61

Age at diagnosis: 50

Brief Outline:

Roland has a rare form of Motor Neurone Disease (Progressive Muscular Atrophy). He is part of a study using blood samples, scans and other tests to improve the diagnosis and understanding of MND. He has also agreed to donate his brain to a brain bank.

Background:

Roland is a retired computer consultant. He is married with two grown-up children. Ethnic background/nationality' White British.

More about me...

Roland has had a rare form of motor neurone disease (MND) called progressive muscular atrophy for about 11 years. He was diagnosed in 1999. He has taken part in many research studies at various NHS specialist centres. It seems obvious to him to take part, because it may help him and even if it does not it may help others in future. Only one study was a really unpleasant experience, as it involved having a tube down his nose, but he was impressed that the consultant running the research had tried out the procedure on himself first. He also withdrew from another research project which involved drinking a particular fruit juice, which tasted so horrible he could not continue.

 

The study Roland is currently involved in is a 5-year study which involves giving regular blood samples every 6 months, as well as taking part in MRI scans and various tests of brain function such as an eye test. The study aims to look for biomarkers – particular characteristics of the samples – which can help explain why the disease progresses differently in different groups of people, and may also help provide a better diagnostic test for MND. It’s not to difficult for him to get there, and he spends 4-5 hours there for each research visit. Just recently he has found it more difficult to get up onto the scanner table, because of problems moving his arms and legs, but the staff help him.

 

Some people in the study are also giving regular spinal fluid samples by having a lumbar puncture. Roland has had a bad experience with a lumbar puncture in the past, when he felt quite panicky and felt staff were not communicating with him properly. So he opted not to have the lumbar punctures in this research project, and has been told his data will still be valuable. 

 

He is hugely impressed with the dedication and manner of the staff involved, and the way they keep him informed of progress with the study. He finds it really interesting to chat to them while the tests are being conducted. He has encouraged several of his friends to become involved as healthy volunteers, to act as controls for the study. He has also agreed when he dies to donate his brain to a brain bank for research into neurological conditions. He is not religious and cannot see why he should worry about his brain being used for research. However, Roland found the information and questionnaire he had to fill in were worded in very complex medical jargon, which neither he nor his consultant neurologist found easy to understand. This contrast with all his other research experiences, where he thinks things have been very well explained.

 

Roland decided not to have a lumbar puncture as part of a research study on Motor Neurone Disease as he'd had a previous bad experience. It was not an essential part of the research, so he was able to continue giving blood samples.

One thing I don’t take part in and that’s - I’ve forgotten what it’s called.

 

A lumbar puncture?

 

Oh yes, sorry, yes the lumbar puncture. I had one ten years ago when I was first diagnosed and it wasn’t a very pleasant experience. The consultant asked if I could have some, or if he could have some trainee doctors in to help me – well, not to help me, to take part in the process to see what a lumbar puncture involved. And he also said that whatever I did I mustn’t, whatever I do I mustn’t move. And so we started off with the puncture, and he and the trainee doctors all had a chinwag about what the weather was like that day or whatever, forgetting me, the patient, and I started getting a bit panicky, I was - and in the end I shouted out to one of them, or shouted out to them, “I’m the patient here. I’d like a little bit of confidence-building, please”, and then I got, well, one of them started talking to me, which is all I wanted, just reassurance and comfort, comforting. But it’s put me off lumbar punctures from then on. And I’ve heard plenty of good results with lumbar punctures, but in the [Motor Neurone Disease] study I’ve been told it’s not essential for the study for me to have a lumbar puncture, so I’ve decided I won’t.

Roland wants to help people even if he will not personally benefit from taking part in research. But it just might help find a cure in his lifetime.

I like the idea, I like the feeling of being able to help other people, and if it was, I suppose I’d still be keen to help other people even if I knew it wasn’t going to help myself. I did take part in another research project that was to do with drinking fruit juices, and that seems fairly innocuous and easy to take part in, but I had to drink a particular fruit juice, oh, once or twice a day? Anyway I lasted a couple of days on that project and the fruit juice tasted so foul that I just – I mean, I was given a month’s supply and told to take, you know, two of these every day, and I just said to myself after a couple of days, this is, this is too painful, it’s too much like hard work. And I just sent the box back [laughter] with my apologies and for wasting their time and they were very good about it, and they didn’t like the stuff either, I think.

 

That’s quite a problem. It’s got to be palatable, hasn’t it, if people are going to comply with the treatment?

 

Indeed. I have no idea what it was... supposed to achieve. It was some university project. But also, as I’ve said, it’d be silly to say, if a cure could be found for MND in my lifetime, then I’d be foolish not to want to take part in research to help find this cure.

Roland has arranged for his brain to be donated to a 'brain bank' for research. He found the paperwork for this was worded in very complicated language.

I have donated my brain to a brain bank in [county]. That’s... was surprisingly quite difficult to manage. Apparently it is useful, or will be useful, for my brain to be donated, but the - just to be a bit negative - the paperwork involved was awful. And it was written in, well, by - let’s be rude – by, if you like, a PhD student who put everything in medical terms, and I didn’t have a clue as to what many of the questions meant. And I took it along to my consultant neurologist, and he took one look and he couldn’t understand it either. Anyway we got a simplified form out of that and...

 

Was that the information leaflet or the consent form or?

 

It was a sort of questionnaire that went along with the... my request to donate my brain. But as I said, both I and the consultant were fairly appalled at the uselessness of the questionnaire.

 

So that was................

 

But it was about - I can’t give you examples - but it was, ‘would I mind giving’, if my brain was given to some – no, I can’t even think of the examples, but it was just put in language which was beyond me.

 

And that contrasts with your experience of the (Motor Neurone Disease study name) study?

 

Oh indeed, yes, and any other study I’ve taken part in. They’ve always been straightforward and easy to understand, and I mean this isn’t a research project and it’s just a matter of me donating my brain, but it’s speaking the obvious to say that if you can’t fill the form in, then what use is donating your brain? Well, you’ve got to make the, make life easy for people.

 

And is that an MND-specific brain bank, or other neurological conditions or?

 

I think it was other neurological conditions as well.

 

And so I think any brain tissues that can be donated, particularly from people with MND, would be well received.

 

Was that a difficult decision to make or - I mean, did you talk about it in the family or?

 

Yes. I haven’t gone to any great lengths to do so. I mean I talked it over with [name] – sorry, my wife. But again it’s a bit of a no-brainer, to use an odd colloquial term. If it’s going to help - well, obviously it won’t help me - but if it’s going to help other people then why not? And I’ve certainly no wish to be buried in a grave, I’m not religious, so if I’m going to be cremated they might as well have my brain beforehand.

Roland has been taking part in research about Motor Neurone Disease for several years. An eye test has been added to the other tests he has to do.

Tell me what’s involved in taking part in that study. What do you have to do? How often do you go and what happens at each visit?

 

The [Motor Neurone Disease] study is, as I said, five years in duration. I have to go every six months, and interestingly enough the tests that one has to undertake have changed slightly in that 18 months that I’ve been going so far. There’s an eye test that has been added, which is quite fun actually, because it involves following a ball or following things on a screen with your eyes. And it can be quite tricky, some of the questions that are asked. Other aspects of the study is to take a 50 minute MRI scan, and I’ve had several, I’ve taken several of those in the past, and it’s not a pleasant experience but it’s always interesting. Recently I’ve had to have help getting me onto the MRI scanner, but that is something that the staff there will do for you so if – well, in my case I can’t move my legs or my arms, basically - but I can still get onto the scanner so that’s not a problem. There’s a blood test that’s taken as well, which again doesn’t bother me. 

The dedication of the consultant running the research impressed Roland. He feels very close to the research team.

How would you describe your relationship with the research team?

 

Very good, we, it’s not all seriousness and having pins stuck in you. We have a bit of a laugh, and on the latest session I went along to - this is research - the consultant concerned was stuck in Spain due to the volcanic ash situation, but he made sure that the research carried on. His team were there without him, and everything was as per normal. It was very, it was interesting from my point of view to see how - what’s the word - devoted the consultant is to the research project. I mean he organised things so that they would carry on even though he was stuck in Spain. I know it’s his job, but he went out of his way to make sure that everything took place and that the MRI scan itself wasn’t wasted, because they’re very difficult to come by. MRI slots are very difficult to come by.

 

Some people have said to me in the past that one of their reasons for taking part in research is to have access to a sort of specialist team at the forefront of their field and specialising in their condition. Is that something that you thought about consciously or?

 

It is something I’ve thought about consciously, but it’s been made clear to me anyway that in all of the consultants I’ve talked to or had research with, that if I ever need any assistance or have questions or whatever, that I can contact them at any time. 

Roland describes how his neurologist spoke enthusiastically about the results of the study he took part in.

Do you get regular reports from them about how the research is going?

 

Yes, to some extent. Certainly the last time I turned up, which was my, well, my third attempt - my third sitting, shall we say - the neurologist was very enthusiastic with the result, well, about the results he’d received so far, and he was hopeful that in the relatively near future he would be able to publish something that would [clears throat] help in the diagnosis of MND. And I mean he was hoping that was what he was going to find, and it seems that’s what he’s achieved. But quite whether it’s the blood element, or the MRI scan, or the lumbar puncture bit of it, or perhaps a combination of all three, I don’t know - and the eye test as well - so from my point of view there’s about four different... studies that he’s - not studies - four different elements of the research that any one of which I suppose could help the [study name] research.

Roland is amazed that doctors want to research conditions such as Motor Neurone Disease. He thought it must be 'frustrating for them'.

Well, as far as the neurologists, the MND doctors that I’ve met, this isn’t necessarily answering your question, but I’ve found them all to be very eloquent, very helpful, very nice people. As I said before it’s, I find it amazing that they can carry on doing what they do, helping people with MND, even when there is so little they can do, and it must be so frustrating for them. I know it’s probably more frustrating for the patients themselves, but we didn’t have any choice as to whether we’re going to have our condition or not, and these doctors have decided they want to help people with MND. And long may they continue to do so.