Motor Neurone Disease (MND)

Ken - Interview 34

Male
Age at interview: 59
Age at diagnosis: 58

Brief outline: Ken was diagnosed with rare inherited (familial) form of MND less than a year ago (2006). He has limited arm and leg movement, has a PEG and uses a Lightwriter to speak, but carried on working until a month ago. Interviewed through his wife Chris.

Background: Ken (aged 59) and Chris (aged 60) are a married couple with 3 adult children. Ken retired as a soft furnishing workroom manager. Ethnic background/nationality' White British.

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(Ken's speech has been affected. He tells his story through his wife, Chris)

Ken's brother died of MND ten years ago. At the time the family did not know it could be inherited. About two years ago Ken started coughing a lot and had a trickling feeling at the back of his throat. He had a hospital appointment and was asked if there was any family history of neurological problems. When he mentioned his brother the doctor immediately suspected it might be MND. This was confirmed after tests just under a year ago (2006). Although they had started to suspect this might be the diagnosis it was still a terrible shock and they did not feel the doctor who told them was very sympathetic. The worst thing was telling their children. Ken and Chris worry about whether anyone else in the family will inherit it, but hope that if they do a cure will have been found by then.

Ken's employers were very supportive; they changed his work to be more computer-based and moved his office downstairs. They continued paying him full-time for part-time hours until he retired very recently. Access to Work helped arrange transport to work and provided a 'Say-it! SAM' hand-held communication device. The speech therapist, occupational therapist and local MND Association adviser have all been very helpful in organising adaptations to the house and equipment, including a Lightwriter, a hoist, a downstairs shower, a car seat and slideboards. Chris also continued working until she recently reached 60.

The MND Association has also helped with claiming benefits such as Disability Living Allowance, Carer's Allowance and Incapacity Benefit. Chris found all the paperwork and the restrictions on when and how you could apply very challenging, and appreciated the MND Association's help. She finds it especially hard seeing her and Ken's roles reversed, where he used to be the strong one and now he's dependent on her. It is sad that he can't even give her a hug any more, but together they use humour to try to overcome sad or difficult situations. They try not to think about the future as it is too upsetting. 

They try to keep life as normal as possible - going shopping, visiting friends, taking holidays, and spending time with their children. Their adult son has moved back home, and their daughters visit often. Ken has a PEG as he was finding it difficult to eat without choking, but the family sit round the table together for meals. They have found it helps to have milestones to aim for. When Ken was first diagnosed, they were looking forward to their daughter's wedding. He did the bride's father's speech in writing and projected it onto a screen. Then they looked forward to the birth of their first granddaughter, and now they are planning a holiday with all the family. 

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