Parkinson’s disease is a progressive neurological condition. It is the second most common neurodegenerative disease after Alzheimer’s disease. Due to the increase in the ageing population, diagnosis and improvements in research, Parkinson’s is the fastest growing neurodegenerative disorder.¹

In 2020 it was estimated that globally 9.4 million people were living with Parkinson’s disease. It is believed the prevalence of Parkinson’s has doubled in the last 25 years, increasing individual and societal burden as well as highlighting the pressing need for measures to address and impact this challenging disease.²

There are many myths associated with Parkinson’s disease: ‘It is the disease of an older person’; ‘Parkinson’s is just a tremor’; or ‘Parkinson’s only affects movement’. 

In Ireland it is estimated that 15,000-18,000 people are living with Parkinson’s. A diagnosis is more commonly made in a person over the age of 65 years. However, there are approximately 1,800 people diagnosed with early or young onset disease. These are those under the age of 65 and range from 21 years old. Parkinson’s affects slightly more men than women. 

Parkinson’s disease is caused by a loss of dopamine-producing cells. As we age, we lose dopamine but with Parkinson’s it is lost at a faster rate. Dopamine is responsible for smooth and controlled movement. It also plays a role in sleep, motivation, cognition and mood, hence the potential symptoms some may experience. The exact cause of Parkinson’s remains unknown. It is believed that a combination of age, genetics and environmental factors play a role. 

Diagnosis

The diagnosis of Parkinson’s may take time and investigation. There is no definitive blood test or scan for diagnosis. Therefore, diagnosis may be based on clinical assessment, history of symptoms including genetic history, a DaTscan (imaging of brain’s dopamine) and finally a response to medication prescribed. 

The three initial symptoms evident in a person with Parkinson’s include a tremor which is usually unilateral – 70% of patients will display the symptoms of a tremor but 30% will not – bradykinesia, for example a change in pace of walk for example, and rigidity, smaller amplitude in the arm swing. 

Some patients may experience symptoms for years before a diagnosis is made. These are referred to as prodromal symptoms. Those living with Parkinson’s may experience 40 potential symptoms both motor and non-motor. Examples of motor issues include: tremor, rigidity, facial masking, shuffle and balance. Examples of non-motor issues include: bowel and bladder issues, sleep, hypotension, anxiety, apathy and mild cognitive changes. 

In a Parkinson’s Ireland members’ study carried out in 2022, sleep was the top issue experienced by 70% of participants, followed by motor and speech/oral issues. 

Treatment

There is no cure for Parkinson’s disease. Research is ongoing into potential disease-modifying treatments that may delay its progression. Medication to manage symptoms can improve quality of life. Advancements in treatments have been in the area of complex therapies such as drug device delivery systems and deep brain stimulation. These may be considered in advanced Parkinson’s when oral medication is no longer effectively managing symptoms. 

Living effectively with Parkinson’s disease requires not only medication but also education. Increasing awareness and level of knowledge encourages self-management to improve ownership of the condition and maintain person-centred care. The WHO describes self-management as a critical component to delivery of care in: “countries where ageing populations and the growing burden of non-communicable disease means that there is ever greater demand for health services”.³

Parkinson’s Ireland toolkit

At Parkinson’s Ireland we have developed the KEES toolkit to assist in self-management and efficacy when living with Parkinson’s: 

• Knowledge
• Education on medication
• Exercise
• Supports.

Knowledge

Obtaining information on Parkinson’s. What is it? Who is affected? How to live well with it? Patients should gain those nuggets of information from reliable sources and at an appropriate level suitable to where they are in the course of the disease.

Education about medication

Medication can provide symptom control for a long period. The aim of education is to optimise symptom control and improve adherence to medication. Keeping a diary can be helpful.

Setting realistic goals is important. What is the medication and how will it help? How long will it be before an improvement is seen? How is the medication best taken? The four crucial aspects to optimise medication are:

• Consistent timing
• Following advice to be taken with/without food
• Avoiding constipation
• Hydration.

Medication alongside relaxation and distraction techniques are the key pieces of the symptom management jigsaw. What works for one person may not work or be suitable for another. Hence, a personalised approach and plan is important. 

Exercise

Exercise is essential in the management of motor and non-motor symptoms. We know the physical benefits of exercise for issues with balance, gait, rigidity/stiffness and strength. There are also major psychological benefits:

• Building confidence
• Increasing serotonin production 
• Improving sleep and mood 
• Improving wellbeing. 

Research has suggested that exercise may have the potential to slow the progression of Parkinson’s disease. Regular, high level exercise when maintained has shown strong evidence of slower deterioration. This was evaluated using several assessment tools.⁴

Further research is needed into the specific role of exercise and disease modification. However, it is recommended that aerobic exercise should be advised for all to try to get moving physically and to get the brain moving.⁵ A variation in exercise, to provide a challenge both physically and cognitively and at a level of high intensity, is recommended. It should be adapted to the individual’s level of ability. Some exercises found to be beneficial include Tai Chi, dance, yoga and aqua therapy.

Support

Seeking support can be daunting but is an essential component of the toolkit. This network can come from peer support and the wider circle of health professionals. It is helpful for family members to have a level of knowledge and understanding of the condition. Participating in research opportunities is a positive step and an opportunity to contribute to the future pathway of Parkinson’s.

Parkinson’s Ireland is a national charity to assist, educate and connect those living with Parkinson’s, family members and health professionals. We currently receive no core funding from the Irish state, which means we rely heavily on fundraising and donations. Parkinson’s Ireland provides a support line including access to a Parkinson’s nurse specialist and dietitian support. In addition to our headquarters, there are 15 branches providing local support and classes.

Our members can avail of online classes including a nurse clinic, physio-led exercises, mindfulness and wellbeing, singing and yoga. To find out more visit www.parkinsons.ie or call 1800 359 359.

References

1. Bloem BR, Okun MS, Klein C. Parkinson’s disease. The Lancet. 2021: 10291; 2284-2303
2. ‌Maserejian N, Vinikoor-Imler L, Dilley A. Estimation of the 2020 Global Population of Parkinson’s Disease (PD), [abstract]. Mov Disord. 2020; 35
3. World Health Organization. WHO global strategy on people-centred and integrated health services. Geneva: World Health Organization, 2015 https://iris.who.int/handle/10665/155002
4. Tsukita K, Sakamaki-Tsukita H, Takahashi R. Long-term Effect of Regular Physical Activity and  Exercise Habits in Patients With Early Parkinson Disease. Neurology. 2022; 98(8): e859-e871
5. Alberts JL and Rosenfeldt AB. The Universal Prescription for Parkinson’s Disease: Exercise, Journal of Parkinson’s disease.2020; 10(s1):21-S27