Motor Neurone Disease (MND)

Una & Bill - Interview 49

Age at interview: 62

Brief outline: Una's husband Bill first noticed symptoms at the end of 2005 and was diagnosed aged 63. A ventilator greatly improved his energy levels for nearly a year. He had a PEG fitted but does not yet use it for feeding.

Background: Una is a retired former NHS Patient Involvement Facilitator, married with 3 adult children (1 died recently). Ethnic background/nationality: White Irish.

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Una's husband Bill started to notice symptoms two years ago in Autumn 2005. He developed a slight cough when eating. He also became very slow and tired, and Una noticed fasciculations (muscle twitching) in his legs. He was referred to a respiratory consultant. By the time they went for the appointment, she had already been looking for information on the internet and started to suspect it might be some kind of degenerative neurological condition. He was referred to a neurologist as well and had an electromyography (EMG) test which was inconclusive. At the next appointment she asked if it might be MND and the doctor said she was glad she'd asked that question because it was a diagnosis they were considering. She felt she and Bill had different attitudes to information - he didn't want to know anything until it was certain whereas she wanted to find out more. When the diagnosis was finally made, they were referred straight away to the MND Association regional co-ordinator, who was brilliant and gave them all the support and information they needed. Their GP retired around this time, and the new GP also turned out to be an excellent support, as well as their occupational therapist.

By this stage Bill was having more difficulty breathing, and it was suggested he have a PEG fitted while he could still have an anaesthetic. They had not realised the maintenance the PEG would require but now they are used to it it's fine. He does not yet use it for feeding. Having a ventilator has made a huge difference to his levels of energy. He now uses it about 12 hours per day (mostly at night) and attends a sleep clinic for regular monitoring. The staff at the sleep clinic and the hospice he attends for respite care have had helpful conversations with him about maintaining his breathing and thinking about his quality of life. They advised him about making a Advance Decision to Refuse Treatment (ADRT) previously known as 'Living will' which they keep in a bottle in the fridge, with a green emergency cross on the door. He hopes to be able to stay at home with care provided from the hospice, which has provided wonderful care and support.

They try to lead as normal a life as possible, but Bill can get frustrated at times. Una copes with the emotion, expressing her love through practical tasks, otherwise she fears dwelling on it too much would not help either of them. One of their daughters died ten months before the diagnosis, and she sometimes feels she hasn't been able to grieve properly for her daughter. She found it very helpful to go on a carers' course at the hospice, where she was able to talk to other carers about the conflicting feelings she has and to know she wasn't the only one to find it hard to live with. MND Association support groups have also provided great emotional support and human warmth to them both.


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