Motor Neurone Disease (MND)

Sandy - Interview 36

Male
Age at interview: 59
Age at diagnosis: 55

Brief outline: Sandy was diagnosed 5 years ago (2002) after noticing weakness in one arm. His arms have been worst affected, and now his speech and neck muscles are deteriorating, but he can still walk well.

Background: Sandy is a retired Royal Navy sub-mariner, married with 2 adult children. Ethnic background/nationality' White British.

Audio & video

Sandy first noticed weakness in his right arm about five and a half years ago (2001). He started dropping small items. At first his GP suspected it was a trapped nerve, but after six months things were getting worse. The GP referred him to a neurologist and MND was diagnosed in the Spring of 2002. Sandy was alone when he was given the diagnosis. He was told to 'go home and put his affairs in order', which was a total shock, but he prefers to be given information directly and honestly. The first person he told was his son, who was waiting to take him to watch a football match with colleagues from the golf club where he worked. He told all his colleagues straight away, and then told his wife as soon as he got home. He broke down telling his wife and then his daughter the following morning. 

Sandy had never heard of MND before, and was glad to be told about the Scottish Motor Neurone Disease Association, where he obtained lots of information. His local MND Clinical Specialist has been invaluable in providing information, helping obtain benefits, and ensuring care is co-ordinated. He feels he has a wonderful team of staff, and the physiotherapist, occupational therapist and speech therapist have all been very helpful in organising care and equipment. At home he has a page turner so he can read, a special mouse for his computer, an environment control system so he can control the TV and telephone etc., and an adapted bathroom. A Clos-o-Mat toilet enables him to look after his own personal hygiene, which he finds valuable. The OT and physio have helped adapt a neck brace to support his neck muscles, as the ones already available did not suit him. He is still able to walk three or four miles wearing his neck brace.

Sandy continued working as the golf club secretary for three years until his arms became too weak to hold the telephone and write at the same time. His wife has also stopped working and is now his main carer. He has kept active through fund-raising for MND, and he and his wife try to get away on short holidays as often as they can. Sandy sometimes feels frustrated and emotional, but does not get depressed. He takes the view that everybody is dealt a hand of cards and it's up to the individual how you play them. He tries to take a positive attitude, take each day as it comes and 'make the best out of a bad hand'. He has volunteered for research projects and lives in hope that a cure will be found soon.

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