Sad absence still of Parkinson’s disease awareness

http://www.theguardian.com/society/2015/apr/22/sad-absence-still-of-parkinsons-disease-awareness

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“Imagine how distressing it would be to be laughed at in the street,” starts Jenni Murray’s moving article about the ridicule her mum suffered because of her Parkinson’s symptoms (My mother wasn’t drunk – she had Parkinson’s, 20 April). The day this appeared – the start of Parkinson’s Awareness Week – my friend gave her neighbour a lift to hospital. He had a severe droning noise in his head, was anxious that this might be related to his (benign) brain tumour and didn’t feel able to drive. The NHS helpline had told him to go straight to the nearest accident and emergency department.

Said neighbour is a cheerful, intelligent man who was diagnosed with Parkinson’s about 20 years ago, while still young. He was a godsend when I myself was diagnosed: a living example of someone leading a happy, worthwhile life, even with Parkinson’s. At the hospital’s reception, my friend waited while her neighbour went to the desk.

As he started to explain the problem, the receptionist noticed his tremor, turned and called across the department to my friend: “He’s got issues, hasn’t he?” Both friend and neighbour were too shocked to respond, then the receptionist loudly repeated her comment. My friend and her neighbour subsequently left and drove to another hospital, where he was treated with appropriate courtesy. But the whole experience was very distressing for them both. Thank you for printing a reminder of what a difference patience and understanding make to the quality of life of those struggling with the symptoms of neurological diseases. How sad, though, that such an article is still needed.Bev MaydonLondon

• Jenni Murray’s article movingly describes the heartless suffering that can be inflicted by an unthinking society on people with difficult illnesses such as Parkinson’s. She is right to raise this issue. The feelings of loss of self-worth that can result from such callous treatment can lead some with Parkinson’s to feel that death might be preferable. It is such concerns that cause many people, including those with disabilities, to worry about proposals to introduce what is euphemistically being called assisted dying into an increasingly utilitarian society.Ilora FinlayCo-chair, Living and Dying Well

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