Community Groups
Parkinson's Association Patient Conference
By Marian Newman
10, Jun 2012 - 09:54

Mayo patients urged to attend major upcoming conference.

Ireland has a third-world standard of care for people with Parkinson's Disease and other neurological disorders, board member of the Parkinson's Association of Ireland (PAI) Una Anderson Ryan has stated.

Urging local patients and family members to attend the most significant gathering of Parkinson's patients in Ireland - a one-day National Patients Conference on 17 June 2012 that will kick off the Movement Disorder Society's 16th international Congress in Dublin - Ms Ryan said that Ireland is poorly prepared for the inevitable rise in incidence of Parkinson's Disease over the coming decades.

The Parkinson's Association of Ireland National Patients Conference will be held on June 17th next at the National Conference Centre and will be attended by over 700 patients from around Ireland. It will open the week long MDS conference, which will be attended by 5,000 delegates, including some of the world's leading movement disorder experts, a number of whom will speak at the Parkinson's Association of Ireland Patients' Conference .

"Latest research shows that 17% of the population in Ireland have a neurological condition and Parkinson's accounts for a large proportion of that. Yet we only have half the recommended number of neurologists working in our public health system," said Ryan.

"The statistics say we are getting this horribly wrong. Only one in four people here are able to access the national rehabilitation centre and we have just six rehab consultants when the recommended number for our population is 26. Internationally we compare very poorly. We have only one neurologist per 200,000 and Italy, by contrast, has one per 1,000."

"Incidence levels of Parkinson's are expected to double by 2050 and unless we start taking this seriously in Ireland we will reach crisis levels long before that. In fact, we are not far off it already."

"Care levels in Ireland for Parkinson's patients are simply not good enough. We all appreciate that money is in short supply but delivering proper levels of care will, in fact, save money as it will keep patients out of more long term care, which is a huge drain on the State."

Pat O'Rourke, Chairman, Parkinson's Association of Ireland said that approximately 1,200 of Ireland's 8,000 Parkinson's patients are in need of a surgery that could change their lives but yet have to travel to the UK, France and elsewhere for it. The surgery, Deep Brain Stimulation, has only been trialled twice in Ireland but the HSE has, in the meantime, been sending patents abroad for the surgery at a cost of up to €50,000 per patient.

"Only a small number of the people who can actually have this treatment, and who would benefit enormously from it, are even aware of it. So far the HSE is paying for this surgery abroad when it would be much cheaper to perform it at home and we could then treat so many more."

"What we need is a neurosurgeon with the necessary experience and a dedicated MRI scanner and the lives of thousands of people could be made so much better. Unfortunately, there is a point with Parkinson's that the patient reaches a point where this treatment is no longer of value."

Parkinson's Disease is named after James Parkinson who lived between 1755 and 1824. In 1817 he published a small book entitled ‘Essay on the Shaking Palsy' in which he described his own observations on six patients who had involuntary shaking of the arms, legs and body. James Parkinson recognised that the features of all these six patients were very similar and differed from other medical causes of shaking that had been known up to that time. He called the new disease paralysis agitans (shaking palsy) but a French neurologist, Charcot, later suggested that the disease be named Parkinson's disease in honour of the man who first recognised it and this term has remained ever since.

Parkinson's is a progressive neurological condition which directly impacts upon about 8,000 people who have Parkinson's in the Republic of Ireland. Parkinson's is primarily caused by the degeneration of nerve cells (or "neurons") in a part of the brain that controls movement, called the substantia nigra. Normally, these nerve cells produce dopamine- a chemical messenger or "neurotransmitter"- which is used by the brain to control movement. In Parkinson's, the production of dopamine is reduced and the muscle tension and movement are affected. The main physical symptoms of Parkinson's are tremor, muscle rigidity and slowness of movement.

Parkinson's Association of Ireland was established in 1987 and is celebrating it's 25th Anniversary this year. The Association provides services and supports to people affected by Parkinson's Disease in Ireland.

Parkinson's Association of Ireland is a member of the European Parkinson's Disease Association and has participated actively, hosting the EuroYapmeet (YOPD) in 2005. It is also a member of the World Parkinson's Disease Association and the Neurological Alliance of Ireland.