Paul - Interview 12

Age at interview: 63

Age at diagnosis: 57

Brief Outline: Paul was diagnosed with Motor Neurone Disease (MND) 7 years ago, in 2003. He is a keen research participant, and currently gives regular spinal fluid samples as part of a study which aims to explore how and why MND progresses in different people.

Background: Paul is a retired toolmaker/machinist engineer. He is divorced, with four children ranging in age from 15 to 40, and 3 grandchildren. Ethnic background/nationality' White British.

More about me...

Paul was diagnosed with Motor Neurone Disease (MND) seven years ago. MND results in progressive muscle weakness, and Paul has to use a wheelchair. He is a very keen research participant and has volunteered for a whole range of studies over the years, including interviews and questionnaires as well as the current study he’s involved in. This is a long-term project, in which every few months he gives samples of blood and spinal fluid (through a lumbar puncture), has scans, takes part in tests of his brain function, and answers questions about his symptoms. The way MND spreads and progresses can vary a lot from one person to another, but no-one yet understands why or what factors affect this. It is hoped this study will provide some answers, and perhaps also help find a clear diagnostic test for MND, which does not currently exist. 

 

Paul feels it is vital to help with such research, as it may benefit other people in future, though probably not in his lifetime or even that of his children. Having lumbar punctures may not be very pleasant but he has a high pain threshold and is determined not to dwell on any negative aspects to the research. He trusts the clinical team to look after his personal data and samples with great care, and is pleased that they tell him his participation is making a real difference. Getting a personal thank you letter each time with some details about his specimens and scans is rewarding. For him the personal satisfaction of knowing he is taking part is immense, and he feels that there is great mutual respect between the academic team and the research participants. 

 

Paul is always ready to volunteer for another study. This is part of his wider approach to living with the condition, which is always to be doing something, whether it’s fund-raising, research, writing poetry, or raising awareness through his local newspaper. He is disappointed by the way the media present medical research sometimes, but feels they are important nonetheless for getting the message across. Paul says there is no type of research he would not consider. The most difficult thing he has done was to take part in an interview with very personal questions about his fears, his feelings and his sexual needs, but he was determined to do it anyway as he believes the questions are important ones to answer. To other people who are invited to take part in a research study he says, “Look at your day and see if there is anything else more important, and – I can only speak for me – there isn’t.”

 

Paul is participating in a long-term study to improve the understanding of Motor Neurone Disease (MND).

Over a period of a number of years I have been visiting my specialist. I’ve volunteered for numerous studies and certain questionnaires and so forth, and this particular one drew me to it for what it could achieve in the long run. And it appears that it’s vital to know that existing people who are living with MND are able to give various samples, and have various studies done on them to help research. And it’s an ongoing voluntary process, in which every number of months you are able to see how the illness has progressed and hopefully find what is causing it to progress. I’m now in my second year of the study, and I will continue to go along for as long as I am physically able to. 

Paul, who has MND, feels that he is better informed about his condition by participating in research. He likes to be able to inform others too.

You attend a lot of conferences?

 

Yeah, and stem cell research is talked about and explained and it’s, you’re made aware of the need for it, and it appears to be the way forward.

 

Where do you go for conferences? Where all over the country or?

 

Yeah, you tend to have various invites posted to you, and very often I will go to the majority, depending on distance, and they will be either overnight weekend events or one-day events. And you have scientists, professors, doctors and so on and so forth speak and explain, which is extremely helpful and interesting.

 

Do you think taking part in the research you get better access to some of that research information as a result?

 

I think yes, because I’m always one for asking questions, because I like talking and explaining and making people aware of MND. It might be by wearing a t-shirt. It might be by , in fund-raising collections when someone says, “What is MND?” I need to be adequately able to describe in, at the very minimum, layman’s terms but, at the very most, professional terms, what MND is. And people show a great deal of interest in that. And so I’m constantly asking my specialist and other people questions that I can pass on to people who ask me.

Paul is rewarded by the thought of helping other people and the research staff.

It sounds like you have a good relationship with the staff in the clinic?

 

Yes, very much so. I think when they see people are giving, caring, wanting to help, they obviously have a respect for them, and they are able to motivate them. And I just go in and say, “Any more, anything else to volunteer for?” It’s a passion that I have to give as much as I can, as often as I can, to as many as I can, and just keep doing that. And obviously the rewards are immense within oneself, because you realise somewhere, some way along the line, you are helping another person.

 

And with this particular, the biobanking one where they’re taking the spinal fluid and the bloods and so on, are you, do you know how they’re using the data? What are they doing? What are they hoping to find?

 

I am told that it’s been of great help. I never ask questions, but I’m sure that if I did I would have a response to those questions, but just knowing that it has been of immense value to them and being told that is very satisfying and consoling to me. 

Paul describes the media as a "necessary evil". He thinks it is an important force for...

I think the media is the media. I’ve been in my local paper numerous times and as much as I’m pleased that they’re, it is making people aware of MND, I cannot help but almost tear my hair out that they seek their sensational headline. But, having said that, then I’m only too pleased for the amount of people that say, “Oh, I see you in the paper. MND, I never knew you had that. What’s that about?” And I’m able to have an in-depth conversation. So it’s vital that the awareness is stepped up. It’s something which sadly a disease which claims more and more lives, so it’s on the increase, which is factual, and it needs to be addressed that that is happening, and the reasons for that, and what the intentions to stop that rise are.

 

And I know that a small proportion of that is that people live longer, so obviously more people are able to contract an illness. So I can see that side. But it is something, especially in younger people, where at this moment in time it’s still predominantly a disease in males between forty and sixty but, nevertheless, there is more and more younger men and sometimes women contracting it. And I think the awareness level needs to be constantly sought to be kept up.

 

And what about the media’s portrayal of medical research generally? Same problem?

 

They, the media is, in brackets, a necessary evil. You need to keep people informed, but not always in the ways in which we are informed, and take away the media and you lose a lot of people and their awareness. So I’m saying really that we need the media. We need to try and have as much as possible put into the media about all illnesses, and what is happening in this field. So we need less secrecy. We need a more open government, which will say, “We are going to do this”, and be seen to be doing it. I’m obviously talking about stem cell research and other - and that is really where we stand, I think.

Paul has stated in his will that he will donate his body to medical research or any other medical use, and informed his family.

I’ve, again, volunteered to donate whatever may be useful. That is etched in my will, and my family are aware of all of that. And I have had that ongoing for some time now, so that will be part of some research one day. I can’t say what they would or would not want, but whatever they would like then it’s theirs.

 

And is that, that’s specifically for research you’ve specified, or for organ donation and things as well?

 

Well, both. I’ve donated whatever parts of my body are suitable for whatever they may be wanted for, so it’s a bit of both, organ donation, research.

The possible discomfort from a lumbar puncture did not put Paul off donating. He felt like he was helping others.

Lumbar punctures can be quite unpleasant. What, what would you say about the process?

 

I have a good pain threshold and my one thought always is, “I’m going to help, no matter how uncomfortable, how long it takes, I will.”

 

So my day is already a good one before I arrive at the destination so, you know, it’s a bit like for some people if you go on a holiday there’s bound to be something that doesn’t sit well or is uncomfortable somewhere, and it’s whether you can have a mindset that tells you, “It’s important that I enjoy this holiday. I’ve waited a long time. I’ve, it’s important to me”, and let certain things not play on the mind. So any uncomfortable or hard part of the day is really not uncomfortable.

 

So it’s kind of like a sort of a minor part of it, really, as far as you’re concerned.

 

Yeah, and the - of course it’s, I’m pretty good at dentists and any sort of injection I have, so I’ve always had a good pain threshold.

Paul thinks it is essential that people participate in biobanking. He advises people to 'Look at your day to see if you think it there's anything else more important'.

I would say that to look at your day and see if there is anything else more important, and - I can only speak for me - there isn’t. So no matter how long, how difficult it may or may not be, it is vital and essential to do the research, do the study, and it’s the only way progress can be attained.