Maureen and Norman's Story - Life with Parkinson’s

Maureen has Parkinson’s and Norman, her husband, is her full-time carer. They started coming to Leuchie in 2019. We spoke with Maureen and Norman about what it was like to live with Parkinson’s and what their breaks at Leuchie meant to them.

‘I was diagnosed in 1999 but when they told me what the symptoms were I can go back to 1980. I told my supervisor at work that I had Parkinson’s but they were unsympathetic. They said to me ‘What do you expect us to do?’ I was a cook in a school and it was obviously quite dangerous being a cook with Parkinson’s. I had to go off sick for a while, but I did return elsewhere as an Assistant Cook. I only managed 5 weeks until I became so tired that the doctor just signed me off sick for good, there and then. That was in 2001. I was 57.’

At that time Norman left work too. ‘My employers weren’t very helpful either’ he says, ‘So I thought ‘sod you’ and took early retirement’. From then on Norman was registered as Maureen’s full-time carer. He got a carer’s allowance which stopped when he got his full pension.

Maureen and Norman have got family and used to enjoy travelling to visit them and to get out and about. But they found it increasingly difficult and had to stop going too far. ‘It was impossible’ Norman says, ‘There’s no equipment in any public toilets for Maureen to get up out of her wheelchair!’ Norman always has to accompany Maureen to the bathroom. She has carers who go in twice a day to wash and dress her but Norman does all the manual handling in-between and finds it exhausting. ‘It’s knackering with a capital N!’ Norman laughs. Maureen finds it difficult being the receiver of the care because she wants to do it herself. A situation many carers and their spouses will no doubt identify with.

‘We heard about Leuchie before we did anything about it. One of our friends from Eyemouth used to come to Leuchie every Christmas and talked about how much he loved it. And then further down the line we saw an advert and enquired. Our first visit was in 2019.’ Maureen stayed at Leuchie on her own the first time. She was very apprehensive, not knowing anybody. Norman took the opportunity to go up and visit his mum. He’d never put Maureen in respite before and it was his first time leaving her in anybody’s hands. ‘I felt guilty’ he says. But when he picked Maureen up he felt reassured, ‘I came here as a stranger and left as a friend’ she said.

Norman now comes to stay with Leuchie as a guest with Maureen and feels the same. ‘What do we like about Leuchie? The company, the staff, the relaxation of the place. The staff give banter and take it back. We could be anywhere in this setting - a different country even.’ Norman says he is more at ease here than at home because at home he’s on tenterhooks. ‘I can wander about the place knowing she’s in safe hands’. Maureen agrees and says ‘I feel carefree at the end of the Leuchie break.’ This raises a wry smile in Norman who quips ‘Until a few days back into the daily grind’.

At home they used to go to the Parkinson’s support group in Berwick until it closed down and the one in The Borders is a way to go if you’re feeling tired. ‘I see a neurologist every 6 months and I have a Parkinson’s nurse who used to come to the house but they’re only dealing with urgent cases now. She used to come to the house. I feel like I need to know where this goes’.

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