Motor Neurone Disease (MND)

Marcelin - Interview 37

Male
Age at interview: 55
Age at diagnosis: 51

Brief outline: Marcelin was diagnosed over three years ago (in 2003), after several years of weakness in his arms, and later his legs. He now uses a wheelchair. His speech is unaffected. He continues to work full-time. (Partner Tess also interviewed, MND44).

Background: Marcelin is a research and technology systems engineer, divorced, with 4 children aged 27, 20, 16 and 7. Ethnic background/nationality: African.

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Marcelin first noticed cramps in his hands and weakness in his arms about 9 years ago (in 1996). At the time, he was living and working in France, having moved there from Senegal. He was referred to a neurologist who was a specialist in multiple sclerosis, and had many tests but no firm diagnosis. He came to study at a university in the UK for 2 years, and continued to travel to the UK frequently. Gradually his legs started to get weaker until one day in 2003 he flew to the UK for a work trip and was unable to get off the plane and had to ask for a wheelchair. It was in the same year that MND was finally diagnosed by his neurologist in France. Although Marcelin had done his own research on the internet and suspected it might be MND, it was still a devastating blow when it was confirmed. He felt there was no hope. His marriage was already in difficulty because his wife found it hard to cope with his condition, and after the diagnosis their relationship finally ended. Marcelin felt suicidal at times, and felt he had to grieve for the loss of his family and his health. Trying to explain his condition to his youngest daughter and knowing he would not be with his family in future was extremely distressing.

Marcelin decided to move to the UK and work here. This was part of a conscious decision to change his life and start fighting back against MND. Shortly after moving here he was admitted to hospital for a respiratory problem, and his health needs were assessed. When staff discovered he had no support at home, he was immediately referred to a disability support team. He has been impressed with the quality of health and social care he has received since. He cannot fault the way care has been co-ordinated and equipment provided, and feels he has been kept very well informed. With help from his employers and Access to Work he has been able to continue working full-time and is also studying for a work-related PhD. 

At first Marcelin took riluzole but decided it was not making any difference, so he stopped. He wishes he had been diagnosed earlier, as he believes early intervention with physiotherapy and psychotherapy could have helped, and perhaps taking riluzole earlier might have had more effect. He wants to continue to enjoy life as long as possible, but has made a Advance Decision to Refuse Treatment (ADRT) previously known as 'Living will' to say he does not want to have ventilation if his breathing becomes very difficult. He would rather let nature take its course.

His philosophy is to keep positive, keep active, and get out of the house to meet people. He goes to music therapy and hydrotherapy, and is very active in his local branch of the MND Association. He joined a sailing club for people with a disability, and there he met a volunteer who has since become his partner and now lives with him. He never thought he would start a new relationship and it has given him new hope and confidence. 

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