Biobanking

Paul - Interview 12

Male
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.

Audio & video

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.”
 

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