Time for focus on Parkinson’s disease

Sir, – As a person who was diagnosed with Parkinson’s disease (PD) in my early forties, I am deeply frustrated at the scarcity of health services for people trying to keep well in the face of this neuro-degenerative condition.

Most of us with PD get one brief (20-minute) appointment per year with a neurologist when we also badly need physiotherapy to help with balance and walking, and speech and language therapy for swallowing and speech difficulties. Personally, I’ve benefitted tremendously from physiotherapy and speech and language therapy. Unfortunately these services are not widely available.

In addition, access to nurse specialists to deal with our myriad symptoms is extremely limited, as there are just two Parkinson’s nurse specialists to cater for the 25 counties outside Dublin.

The only brain surgery which can help us (called deep brain stimulation or DBS) is not available in this country. Despite numerous promises, the pre- and post-operative screenings are not available here either. And yet, ironically, the hardware for the brain surgery has been developed and is being produced down the road in Clonmel by Boston Scientific.

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Our organisation, the Parkinson’s Association, has not succeeded in getting any core Government funding either, even though Parkinson’s is on the increase, even though we provide a helpline, a nurse call-back service and support groups around the country.

Why, I ask myself, is funding not available to organisations, like ours, providing help and support to so many people with neurological conditions around the country?

If only the Minister for Health could spend a day in my shoes, he would realise what Parkinson’s is like. I call on him to provide nurse specialists around the country, save us from travelling abroad for treatment and please, help us with our funding challenges. – Yours, etc,

GARY BOYLE,

Board Member,

Parkinson’s Association

of Ireland,

Dublin 7.