The number of Irish people with Parkinson’s disease is predicted to double over the next 20 years, even as a new study shows that treatment in Ireland is already well below international standards.
Parkinson’s disease is a progressive neurological disorder caused by a shortage of the chemical dopamine in the brain, which is involved in controlling movement. Some 12,000 people carry the disease here, according to the Parkinson’s Association of Ireland (PAI); parkinsons.ie.
The new survey of more than 1,000 patients reveals that less than half were seen twice a year by a specialist, which is the international standard. It showed a high rate of hospitalisation of Parkinson’s patients over the previous 12 months and found that only 17 per cent met a Parkinson’s nurse specialist while in hospital.
Over a third of those surveyed experienced three or more hours of disability every day due to their disease.
"Our ageing population is talked about a lot, but the problem is being put on the back burner while the attention is focused on the emergency department and acute care crisis," says Richard Walsh, a consultant neurologist at Tallaght hospital. Walsh carried out the survey, Treating Parkinson's 2015, with the support of the PAI and Move4Parkinson's Ireland. Treating Parkinson's is being launched today.
“We have a large population moving into advancing years and living longer,” Walsh adds, “which will give rise to a surge in Parkinson’s diagnoses over the next 20 to 30 years, putting a huge strain on resources in and out of hospital. This is something that needs to be planned for.”
Of those surveyed, 65 per cent were aged 65-75; 25 per cent were over 75; and 12 per cent were over 80. Some 7 per cent worked full-time outside the house and 11 per cent worked part-time or in the home. Another 22 per cent were unable to work or had retired early due to their condition.
One of the main challenges for Parkinson’s patients is that the length of effectiveness of the medication diminishes over the years. For example, Levodopa, the standard medication for Parkinson’s, is turned into dopamine and increases the levels of this chemical in the brain, treating symptoms such as stiffness, tremors, spasms and poor muscle control.
While most patients do well on three doses of Levodopa a day for the first five years of treatment, after this they need to increase the frequency of the doses, often quite significantly, to get the same duration of benefit.
“If you use the comparison of a car,” Walsh says, “Levodopa is like fuel for people with Parkinson’s. They need it to move. In the space of 10 minutes, a person can go from normal movement to being stuck frozen in a chair.
“And the longer they are left like that without their medication, the stiffer and more frozen they get. They become timelocked to their pills.”
Walsh points to a particularly worrying finding. Of the 32 per cent of Parkinson’s patients hospitalised within the past 12 months, 34 per cent of those had difficulty receiving their medication on time. This reflects pressure on nursing staff and lack of education around medication, he says.
“Only 17 per cent of patients met a Parkinson’s nurse specialist during their stay in hospital,” he says. “There are only five of these positions in the country when we probably need 30. We don’t have adequate staff to meet current demands, and our levels are hopelessly inadequate for future needs.
“We have a half-time nurse [in Tallaght hospital] for a population of 800,000, and many of my neurologist colleagues around the country have none at all.”
As well as being hospitalised more often, Parkinson’s patients tend to stay 25-50 per cent longer in hospital than patients without the disease. Access to a neurologist is a huge challenge. It is not unusual for patients to wait a year or more for their first appointment due to the low number of neurologists in Ireland, Walsh says.
Another major difficulty is access to advanced therapies for the disease, including deep brain stimulation (DBS) and pump therapies, which deliver medicine directly into the body.
“Only 3 per cent of Irish Parkinson’s patients have had access to DBS,” Walsh says, “which is well established as a standard treatment for patients with medication frequency issues.
“We have a lot of patients who are experiencing motor fluctuation throughout the day and are very good candidates for this treatment who are not getting access because they have to travel to England.
“If you are a patient who can’t even move for large parts of the day, getting to Dublin is impossible, never mind leaving the country. A lot of patients are shut off from this treatment, which would render them far less disabled.”
The survey highlights the burden placed on carers of Parkinson’s patients, a burden which is set to rise over the coming years.
More than 40 per cent of those surveyed had relied on a carer over the past 12 months, while 22 per cent relied on somebody to remind them to take their tablets.
What is Parkinson’s
Parkinson’s disease is a progressive neurological disorder, which so far cannot be cured. Some people progress more slowly than others, and symptoms can be effectively controlled with medication for many years.
Parkinson’s results from a shortage of the chemical dopamine in the brain. We all lose some of this chemical as we get older – in fact, the loss starts at birth.
However, it is only when we have lost about 80 per cent of our dopamine that we begin to have symptoms. People with Parkinson’s lose this chemical at a faster rate than others.
The most common signs of Parkinson’s disease are tremors (involuntary shaking), usually seen in one hand or foot, a slowness in movement and an increase in rigidity (stiffness).
Problems such as depression, anxiety and constipation are also very common among patients.
Treatment for the disease involves medication, physiotherapy, occupational, speech and language therapy, counselling and psychiatry where necessary, and dietary advice.
Deep brain stimulation has been shown to have remarkable results for medication- resistant movement disorders such as Parkinson’s.
This is a surgical treatment involving the implantation of a medical device into the brain, which sends electrical impulses to specific parts.
Case study: ‘I couldn’t take any more so I went private’
Martin Kruger (70) suffered distressing symptoms for 18 months before he was finally diagnosed with Parkinson's disease last year.
“My GP sent me to see a specialist in the hospital, but nobody could tell me what was wrong,” he says. “I had a bad shake in my hand and arm for a long time, which they told me was due to a stroke I had 20-odd years before. I was dizzy, falling all over the place, but they just ignored it all.
“I kept telling them something was wrong. I waited 18 months for a brain scan and then I was given three versions of what might be wrong. I couldn’t take any more at that stage so I went private.”
Kruger moved from his native South Africa to the village of Annyalla near Castleblayney, Co Monaghan with his wife Geraldine 11 years ago. Going private, the grandfather was referred to a consultant neurologist, Dr Brian Murray, in Dublin.
He brought his brain scan with him and, after waiting 18 months in the public system, was diagnosed with Parkinson’s disease within about 20 minutes.
“He asked me a list of questions and I ticked every box,” Kruger says. “Nobody had ever asked me those questions before and my symptoms had been getting worse. I was more in hospital than out by the time I saw Dr Murray, who was fantastic. He started me on medication straight away and I’m enjoying a good lifestyle at the moment.
“I don’t want to think what I’d be like now if I wasn’t on the medication.”
Having always been a fit sportsman, the diagnosis came as a huge shock to Kruger.
“I went into a deep depression for the first time in my life, I had never experienced anything like it before. It was the fear of not knowing what was going to happen to me. I sat at my window watching people run past and, for a whole month, not one spoonful of food passed my lips. I couldn’t face food, even the smell of it. The Parkinson’s Association saved my life.”
Paddy Conaty, the chairman of the Cavan branch of the association, gave Kruger the information and support he so badly needed and encouraged him to set up a Monaghan branch eight months ago.
Kruger has made it his mission to make sure that nobody else in his area goes through what he went through following his diagnosis.
“The most important thing we do at our meetings is talk to each other, share problems and advice,” he says. “People make friends and we get guest speakers in to talk on relevant topics. People can phone me at midnight if they have a problem. I will get in my car and come to them if they need me, and they are welcome to come and talk to us.”
Kruger is heavily involved in fundraising for the association and is enthusiastic and excited about having a newfound focus for his energies.
“My advice to people with Parkinson’s is to talk about it. Don’t be embarrassed; explain to people why you shake. I have a little card that I hand to people behind me in the supermarket queue which explains that I might be a bit slow because I have Parkinson’s.
“It works like a charm,” he chuckles. “People can’t do enough for me – they pack my shopping and everything.
