Biobanking

Roland - Interview 13

Male
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.

Audio & video

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.
 

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