Parkinson's disease

Gaynor - Interview 15

Female
Age at interview: 54
Age at diagnosis: 51

Brief outline: Gaynor was diagnosed 4 and half years ago. She takes Mirapexin. Fatigue, sleep disturbance and stiffness are the main symptoms she experiences.

Background: Married, adult children, retired social worker.

Audio & video

Four and a half years ago Gaynor noticed difficulty brushing her teeth and writing. Because of pain in her arm and shoulder, two GPs diagnosed frozen shoulder. However a physiotherapist recommended that she saw a GP interested in neurology. He noticed how she didn’t swing her arm when she walked and he told her he thought she had Parkinson’s Disease. After seeing a consultant she was put on a small dose of Mirapexin to see if the tremor she was now experiencing improved, which it did.

 

She felt it wise to tell her work colleagues at once rather than have them notice something was wrong. She found it emotional and upsetting telling others but she received overwhelming support from her friends and colleagues. She has no outward signs that she has Parkinson’s Disease, so sometimes when she tells people, she finds she has to deal with their reactions and tries to be upbeat and positive.

 

She gradually cut down her hours at work because of tiredness, and 6 months ago she was allowed to take early retirement. She is eligible for Incapacity Benefit. She does Tai Chi and has joined a choir and she now has time to spend more time with her friends.

 

She has gradually increased her dose of Mirapexin and is now on the maximum dose. She has noticed that she is much slower and more exhausted and not able to do as much housework or gardening as she used to. Her arm is sore and she feels stiff a lot of the time. She has to sleep in the day but finds it hard to sleep through the night. Still being able to drive enables her to remain independent when her husband is working.

 

Gaynor, and her family use humour to cope with symptoms and they carry on as normal. They don’t talk about the future, and they don’t know what it holds. Gaynor and her husband go on holidays and make the best of now. She did the Moon Walk last year, which took a lot of training but she felt fantastic.

 

It’s taken a while for Gaynor to accept that she has Parkinson’s Disease but she now views it as something she has got to make the best of.  She describes it ‘as friend that she’s got to know and learnt to live and walk along with.’

 

She suggests it is important to be open about having Parkinson’s Disease and to learn from other people with it. She advises others to be careful not to believe everything they read or hear and to educate their GP who may never have seen a case like theirs.

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