Why do we need to beg for funding, Mr Harris?

Why do we need to beg for funding, Mr Harris?
The Parkinson’s Association is the only one of the main neurological charities not receiving government money. Picture: istock.

It can be hard to swallow when you have Parkinson’s disease writes Paula Gilmore. You may have a tremor in one hand or down one side of your body. It’s difficult to control the blister strip, to get a grip on the right spot and push a tablet out of the aluminium foil.

Then there’s the challenge of holding a glass of water steady enough to fill it with water, to get the tablet and water into your mouth. After that you have to try to swallow that tablet down.

This is just one tiny example of the many challenges facing a person living with Parkinson’s. And they may need to swallow a dozen or more tablets a day. Parkinson’s is a neurological illness. The one certainty is it gets worse over time. There’s no cure. It’s treated with drugs but they only mask the symptoms.

Martina Sinnott was 35 when she first noticed her toes curling in. She couldn’t control them. It took another three years before she was told she had Parkinson’s. There is no test to diagnose it.

Martina Sinnott with her husband John, chairperson of the East Midlands branch, Parkinson’s Association.
Martina Sinnott with her husband John, chairperson of the East Midlands branch, Parkinson’s Association.

By the time she developed symptoms she had a shortage of a neurotransmitter called dopamine in her brain. Dopamine is key to movements most people take for granted: standing up, walking, writing and talking.

Over the next ten years Martina’s symptoms got worse. If she went into a pub, she said, she avoided going to the Ladies for fear people would think she was drunk because of the way she walked.

Eventually she was using a pump to deliver drugs directly into her bloodstream. She could not get out of bed without an injection of chemicals into her system. When her medication wore off, she would get stuck in a chair, without the strength to get up from it.

Parkinson’s is rare in people under the age of 20 and is more common in people over the age of 65 but there are plenty of people with young onset Parkinson’s. As the population ages the incidence is increasing. It’s the second most common degenerative neurological illness after Alzheimer’s.

Members and supporters of the Parkinson’s Association are protesting outside Leinster House from noon today demanding better health services and government funding for our national charity. We are the only one of the main neurological charities not receiving any government money so we rely totally on fundraising and finding sponsorship. We got more than 5,000 calls to our support line last year.

In terms of health services, there’s a real need for Parkinson’s Nurse Specialists around the country.

The HSE only employs five and three of them are in Dublin. So, just two nurses are meant to cater for the other 25 counties. That’s way below recommended international standards. There should be one attached to each hospital that has a neurology department.

Most people with Parkinson’s only get to see their neurologist once a year. If they could have access to a Parkinson’s Nurse Specialist it would make a real difference to their lives.

This would almost certainly save the health service money in the long run too. Nurses are less expensive to employ than neurologists. They could help to avert the crises that mean people having to be admitted to hospital.

Then there’s the need for access to more physiotherapy and speech therapy.

Martina, who lives near Abbeyleix, says her hospital runs physio classes twice a year. Luckily, her East Midlands branch of the Parkinson’s Association makes up the deficit and has classes 28 weeks a year.

Research shows that physiotherapy and voice therapies, combined with regular exercise — particularly set dancing — can hold back some of the deterioration associated with Parkinson’s and help people to stay on their feet and lead good lives for longer.

Apart from drugs, there is a brain surgery that can have remarkable results for suitable Parkinson’s patients. Martina underwent this — it’s called Deep Brain Stimulation — in London last year. She’s had to make six trips over and back to the national neurology hospital there. Her husband, to be near her at the time of the surgery, had to rent a flat and spend three weeks in London.

We want to see Deep Brain Stimulation available on the island of Ireland to save people having to travel abroad. Last year the Department of Health told us HSE funding had been released to set up pre and post-operative services here, at the Mater Hospital in Dublin. Nothing has come on stream yet.

For Martina, the surgery was life-changing. From being unable to get out of a chair at times, she’s now walking two miles up to three times a day. She has more energy and is off all her tablets.

She only needs one skin patch of medication a day. The near-miraculous transformation is due to two electrodes and eight points of contact being implanted in her brain, although just three of the points of contact are turned on.

Martina’s husband, John, is chairperson of the East Midlands group, one of our nineteen branches which provide support for our 2,000 members nationwide.

I wish the Minister for Health, Simon Harris, could talk to Martina. Then he might truly realise the needs of people with Parkinson’s and do away with the need for us to beg for funding and nurses outside the gates of Leinster House.

Paula Gilmore is chief executive of the Parkinson’s Association

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