‘After the doctor said “Parkinsons” to me, I never heard another word'

Bandon Parkinson’s campaigner Tony Wilkinson is hopeful of a positive outcome to his call for three dedicated nurses to carry out much-needed home visits to the over-900 Cork sufferers

A BANDON-based campaigner for Parkinson’s sufferers has said he is hopeful that he will get a positive response to a suggestion to fund community nurses for sufferers throughout Cork.

Tony Wilkinson has been asking for a minimum of three nurses for the county who can liaise with recently-diagnosed sufferers, as well as do home visits for all of those suffering with the debilitating condition.

There are 967 sufferers of the condition, in Co Cork alone.

‘All the EU countries, including the UK, have Parkinson’s nurses now,’ explained Tony. ‘We have five of them in this country – but they are all at the end of a phone line.’

Tony, who was diagnosed with the neuro-degenerative disease at 57, three years ago, says that he was lucky to have been in the UK at the time.

‘Within two weeks of being diagnosed there, you have a visit from a nurse. And she was the one person who really got me to grips with things. She assessed me and gave me a very detailed description of the condition.’

Tony says this meeting was invaluable to him because on the day he was diagnosed, as soon as he heard the doctor saying the word ‘Parkinsons’ he never heard another thing.

‘But the nurse saw me walk, and assessed my house, and gave me really good advice on what I needed. She told me to get a cane and said “please don’t be one of those people who is too proud to get a cane, because you are already stumbling and some day you might have a very bad fall”, and she was right.’

He says she also offered great advice on posture, because he was already ‘crumpled up like a question mark’.

‘I was ex-military and she said press down on the cane and pretend you are on parade, and she also taught me how to use the steps in my house. She said that all standard steps are about an inch too high for me, so she taught me how to go up and down steps.’

The nurse can see how you are feeling and can adjust your medication too, he adds.

Tony admits that this is all the kind of help that he could not have got over the phone, and he is mystified that the Irish system doesn’t provide a similar service.

‘We have figures from the Parkinson’s Association in the UK to say that each nurse will represent a saving of €300,000 in avoiding consultants’ visits, avoiding unnecessary hospital visits, and shorter hospital stays,’ he explains.

He says: ‘I hope they don’t say “we will give you one nurse” because that is like a car with no headlights – it works, but you can’t use it all the time. We need three, because I will otherwise be handing them a list of the members and asking them who to leave out.’

As a member of the Cork Parkinson’s Association, Tony has been helping to build ‘stepping stones’ of groups, working outwards from the city. Now there are monthly meetings in Bandon, Skibbereen and a number of North Cork towns, with plans for groups in Glengarriff and Castletownbere in the coming months.

‘They are about fun, chat and information,’ he says of the meetings, which are open to anyone who wants to come along. 

He often brings in documentaries to watch about Parkinson’s and they are especially fond of one directed by sufferer Richard Curtis, writer of The Vicar of Dibley and Mrs Brown’s Boys, called Parkinson’s: The Funny Side, which has won several awards.

Last week Tony attended a meeting with the Health Select Committee in Leinster House. He said they got a lot of support from independent deputies Michael Collins and Danny Healy Rae, and also from FF deputy Margaret Murphy O’Mahony.

But, he said, despite having made represenations to junior health Minister Jim Daly, he has heard nothing back.

However, the chairman of the Health committee, Dr Michael Harty TD, was very interested in the nurse suggestion, he said, and he is hopeful of being called to give evidence at a special sitting of the committee in the autumn.