Motor Neurone Disease (MND)

Roland - Interview 17

Age at interview: 57
Age at diagnosis: 50

Brief outline: Roland was diagnosed 7 years ago (1999) with Progressive Muscular Atrophy (PMA) form of MND. His hand muscles are affected but not his speech.

Background: Roland is a computer consultant, living with partner, with two children in their twenties. Ethnic background/nationality' White British.

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Nearly ten years ago, Roland started noticing muscle twinges and saw a physiotherapist, who thought he might have muscle loss in his shoulders. His GP referred him to a neurologist. He remembers some of the tests as being quite painful, especially taking fluid from his spine (lumbar puncture). After about 6 months he was told he had the Progressive Muscular Atrophy (PMA) form of MND. The consultant advised him to get a second opinion, which confirmed the diagnosis, but did not offer much in the way of information or advice. He was told he could expect to live for about 10 years, although now (2006), nearly 8 years after diagnosis, he expects to survive longer than that.

For some years he chose not to tell anyone at work about his condition, but eventually went to see a senior manager to tell them. He found doing this really difficult, and it upset him. The company made some adaptations for him such as an arm rest for using the computer. Three years ago he decided to stop working.

The muscle weakness in his shoulders, arms and hands has worsened gradually. He has found creative ways to do some things differently, and he can still use a keyboard, but he has had to stop driving.

He takes riluzole and has not experienced any side effects, though it is hard to tell if it has made any difference. Most of the care services he receives come from a regional Motor Neurone Disease Association care centre, which has been very helpful. Local social services have also been very supportive in arranging aids and adaptations at home. Sometimes he feels he has had almost too much equipment, before he really needs it.

He and his partner have taken as many holidays as possible. He has been having problems arranging travel insurance but has been talking to the MND Association about finding suitable insurance companies. He strongly recommends to people diagnosed with MND that they get in touch with the national MND Association and their local branch. Sometimes it can be upsetting to see other people with the condition at local meetings, but it can also be a valuable source of support and information.


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