Motor Neurone Disease (MND)

Ann & Barry - Interview 48

Age at interview: 54

Brief outline: Ann's husband Barry was diagnosed with MND about 10 years ago (1997) at the age of 49, after two years of symptoms and tests. (Since identified as primary lateral sclerosis - PLS).

Background: Ann is a retired hospital administration clerk, married with 2 adult sons. Ethnic background/nationality: White British.

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Ann first noticed something was wrong with Barry around twelve years ago (in 1995) when she saw his muscles twitching after he'd been swimming on holiday. At first they dismissed it, but then he went to his doctor. (He was in the army at the time). The doctor thought it might be arthritis and referred him to a rheumatologist. After nearly 2 years of investigations ruling out other conditions, they decided it was MND. By this time Barry was starting to lose his balance when walking and had a lot of falls. 

Although they have since been told he has PLS (primary lateral sclerosis), at the time of the diagnosis they were told to go home and put their affairs in order, as Barry was not expected to live long. They moved to a small bungalow, thinking Ann would soon be on her own. They also moved to a new area. Looking back this was the wrong decision, and if they had known then that Barry would still be alive ten years later they would have made different plans and decisions. Thinking that Barry would die soon, they withdrew into the home and Ann feels she put her own life on hold to make the most of her time left with him. She became quite depressed wondering how long he had left, until it became clearer that his progression was very slow. She continues to take mild antidepressants. Their social life is limited, but Ann manages to get out with friends every now and again. 

Barry doesn't like people to see him using a wheelchair when he used to be so fit and strong, so he tends to stay at home. He does not like to feel weak and dependent, and becomes quite anxious about going out. He uses a Nippy ventilator (non-invasive ventilation)​ at night, which they believe has been crucial in keeping him going. Three times he has stopped breathing, once at night time, and the Nippy (non-invasive ventilation) alarm alerted Ann. She shook him till he came round, but it was a frightening experience. 

Barry's speech has not been affected by his condition. Because his arms and legs are now very weak, Ann has to provide a lot of practical caring support. Three weeks in the year they have respite care from their local hospice. Barry would rather be at home, but he knows she needs a rest and the care is very good. Ann still goes to visit him every day when he is there but it gives her a chance to catch up with things that need doing in the house or garden.

Realising she has become a carer has been difficult. Barry misses being able to hold her hand and cuddle her, though she makes sure she cuddles him as often as possible. Neither of them wants to have paid carers in to help and would rather manage at home on their own, and they have not been closely involved with any support groups. They feel they have good support from their GP and neurologist when they need it. They take each day as it comes, and Ann has stopped worrying about the future as much as she used to.       


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