Motor Neurone Disease (MND)

James - Interview 16

Age at interview: 76
Age at diagnosis: 61

Brief outline: James was diagnosed with Primary Lateral Sclerosis (PLS) 15 years ago (1991). His wife also had MND and died 3 years ago, 2 years after her diagnosis.

Background: James is a retired carpenter/joiner, widowed. Ethnic background/nationality' White British.

Audio & video

James first noticed something was wrong with his legs when out playing golf in the 1980s. His GP referred him to a neurologist, who asked him to come back in 6 months. He also saw a neurosurgeon, but it was clear his symptoms were getting worse. Eventually he had to give up work. 

His wife spoke to a new GP at their practice, who referred him again, and this time after considerable tests the primary lateral sclerosis form of MND was diagnosed (in 1991). He already knew something about the condition, as he had a friend with it. He has been on Riluzole ever since, and has three-monthly appointments. His symptoms have progressed slowly, and he is still able to drive and to walk using a stick or a frame. He has a wheelchair and a scooter, but is determined to keep walking as long as possible. His upper body is still quite strong and he goes to the gym regularly. 

However, about 5 years ago his wife kept turning her ankle when walking. Her diabetes consultant referred her to orthopaedics, who referred her back to her diabetes consultant. James asked his own neurologist about it, and he said to bring her along to his next appointment. Once she saw the neurologist, it was discovered that she too had motor neurone disease. Her condition worsened much more quickly than his, and she died within two years of diagnosis. Towards the end it became very difficult to care for her at home, and she was admitted to hospital, where she died quite suddenly.

As a result of this experience, James has seen at first hand how motor neurone disease can affect people. He tries not to dwell too much on the future, and tries to live each day as it comes. He enjoys being taking part in the local MND Association branch, and gets involved in fund-raising and social events. It is very important to him to remain as active and independent as he can.

He believes people should have a right to make their own end-of-life decisions.


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