Parkinson’s disease marks the bi-centenary no one ever wanted to see
Early intervention and access to services is the key to living with Parkinson’s, yet currently people in the public hospital system can wait up to two years for diagnosis
Ronnie Gillanders (73) says that being diagnosed with Parkinson’s disease five years ago was a “major blow” to him. “I was numb at first. When I shared the news with a friend, I cried. Then, after I did my period of mourning, I consoled myself by thinking that I could have been given a worse diagnosis and told I had six months to live.”
Gillanders is one of about 12,000 people living with Parkinson’s disease in Ireland. A neurological disease caused by reduced levels of the brain neurotransmitter, dopamine, it has a range of symptoms that worsen over time. The majority of people are over 65 when diagnosed but about 10 per cent of people with Parkinson’s are diagnosed under 50.
“The main motor symptoms are stiffness, slowness, balance problems and tremor – although about 30 per cent of patients don’t have a prominent tremor,” says Dr Richard Walsh, consultant neurologist at Tallaght Hospital.
Declan Moriarty (63), who has Parkinson’s disease for more than 15 years, says that you realise over time that you can’t do things with the same speed or intensity as before. “It’s the subtle symptoms that creep up on you – like not being able to get out of the chair. Or how long it takes to do things you could do easily before – like buttoning your shirt or tying shoelaces. The ability to write disappears because your hands don’t have the looseness to hold a pen,” says Moriarty.
Other symptoms of Parkinson’s disease include bowel and bladder problems, excessive sweating, fatigue, depression, anxiety, difficulties with swallow, speech, sleep and memory and loss of sense of smell. The type, severity and combination of symptoms differ from person to person.
Ronnie Gillanders believes he had the condition for about 10 years before it was diagnosed. “I had lost my sense of smell 10 years prior to diagnosis. I also had severe sweating at night and vivid dreams.” Dr Walsh confirms that these symptoms are early signs of the Parkinson’s disease and that current studies are searching for reliable biomarkers for earlier diagnosis. “There are smell and bowel studies. The pathological changes in the brain may begin earlier in the bowel. Earlier diagnosis would be useful for preventative strategies in the future,” says Dr Walsh.
Shockingly, in Ireland, people in the public hospital system can currently wait up to two years for diagnosis of Parkinson’s disease by a neurologist. “The problem is that by the time most patients get to the clinic, they have lost 60-70 per cent of dopamine already and have probably had the disease for 10-15 years. We simply don’t have enough neurologists in Ireland even with six movement disorder clinics across our major hospitals,” says Dr Walsh.
The standard treatment for Parkinson’s disease is levodopa, a drug which is converted to dopamine in the body. The dosage is usually increased over time to compensate for the drop in the body’s dopamine levels caused by the disease. While tablets are the main form of administering the drug, some people who suffer from extreme changes in movement (without serious cognitive decline) are suitable candidates for drugs dispersed more constantly via a pump inserted into the body.
Deep brain stimulation, which sends electrical impulses to the brain to alleviate tremors via an implanted device, is another treatment option. Currently, deep brain stimulation isn’t available in Ireland but people with Parkinson’s can have the surgery at the Royal Victoria Hospital in Belfast through the treatment abroad scheme. “Access to treatment in Belfast could be withdrawn with Brexit which would present a big challenge for patients who are already quite disabled and don’t want to fly somewhere for the treatment,” says Dr Walsh. Declan Moriarty had deep brain stimulation six years ago. “My symptoms had got much worse before the operation and now when I have too much or too little movement, I can adjust the device to my liking.”
Paddy Browne is Ireland’s only Movement Disorders Advanced Nurse Practitioner (there are four Clinical Nurse Specialists in Parkinson’s disease). Based in University Hospital Galway, he provides information and advice to those diagnosed with Parkinson’s disease and their families. “The main issues for people are coming to terms with and understanding the disease and treatment. Patients can have different symptoms and respond differently to treatment,” he says.
Some 60 to 80 per cent of those with Parkinson’s will develop dementia over time, according to Browne. “It’s important however to distinguish between the slowness of thinking in Parkinson’s disease from dementia because if a patient with dementia is given higher dosage of Parkinson’s disease medication, their symptoms worsen.”
Browne says that early intervention and access to services is the key to living with Parkinson’s disease. The Parkinson’s Association of Ireland is a lifeline for many with social and educational events held through its network of countrywide branches. The organization has also funded nurse specialist posts in hospitals on a pilot basis, pending HSE funding.
People with Parkinson’s are advised to continue with their normal activities for as long as possible and maintain good relationships with their GP and public health nurse. The phrase “use it or lose it” is particularly pertinent in terms of both exercises for the body and the brain. However, those who are diagnosed with the disease at an older age can experience more rapid deterioration. Older people with Parkinson’s are also at higher risk of falling.
Physiotherapy and speech and language therapy are crucial for some and one Dublin branch of the Parkinson’s Association has started an innovative voice therapy group to keep the vocal chords active. Declan Moriarty attends this group. “With Parkinson’s, we are encouraged to make a conscious effort to “speak loud” and “move big” to fight against the disease. The classes are great fun.”
Ronnie Gillanders says that he benefits from both physical exercise and social engagement twice a week at ballroom dances. “I’ve a good bunch of friends who stick by me and dancing is one of the best things you can do for Parkinson’s.” Dr Walsh says that this disease – which was first diagnosed by James Parkinson 200 years ago today – will increase as our population ages. “We will have more neurodegenerative diseases like Alzheimer’s disease and Parkinson’s disease in the next 20 years. In Ireland, we are sleepwalking into trouble with inadequate services for age-related diseases.”