Management and Current Treatment of Parkinson’s Disease

Parkinson’s Disease is a progressive neurological condition. It is second most common neurodegenerative disease after Alzheimer’s Disease. However, experts believe we are facing a Parkinson’s Pandemic due to an ageing population, improvements in diagnosis, and advancements in research. Parkinson’s is the fastest growing neurodegenerative disorder.1

Written by Lisa Wynne, Parkinson’s Nurse Specialist, Parkinson’s Ireland

In 2020 experts estimated that globally 9.4 million people are living with Parkinson’s Disease (PD). Experts believe the prevalence of Parkinson’s has double in the last 25 years. The rise in PD prevalence calls for attention to the increasing individual and societal burden and the pressing need for measures to address and impact this challenging disease. 2

What do we think? There are many myths associated with Parkinson’s disease:

• It is the disease of an older person.

• Parkinson’s is just a tremor.

• Parkinson’s only affects movement.

• Everyone is the same.

What do we know? In Ireland it is estimated that 15,000 – 18,000 people are living with Parkinson’s. A diagnosis of Parkinson’s is more commonly made in a person over the age of 65 years. However, there are approximately 1800 people diagnosed with early or young onset Parkinson’s in Ireland. These are those under the age of 65 and can range from 21 years old and older. Juvenile Parkinson’s can affect any person under the age of 21. Parkinson’s affects slightly more men than women.

Parkinson’s disease is a loss of a neurochemical called Dopamine.

As we age, we lose dopamine but with Parkinson’s it is lost at a faster rate. Dopamine is responsible for smooth movement 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 PD remains unknown. It is believed that a combination of age, genetics and environmental factors play a role.

Diagnosis & Symptoms

There is no definitive blood test or scan that can diagnose Parkinson’s. 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. PD research surrounding genetics & diagnosis is rapidly evolving, in 2023 researchers had a significant breakthrough in the development of a tool that can reveal key pathology in PD- a biomarker evident in CSF.3

The three initial symptoms evident in a person with Parkinson’s may include a tremor- usually unilateral. However, 70% will display the symptoms of a tremor, 30 % of those won’t. Bradykinesia (slowness in movement) – a change in pace of walk for example, and thirdly rigidity for example smaller amplitude in arm swing. There are some who will experience symptoms for years before a diagnosis is given. These are referred to as prodromal symptoms. It is estimated that by the stage symptoms emerge, the person has lost 60-70% of dopamine supply.

Motor symptoms associated with PD are sometimes the tip of the iceberg. Parkinson’s may present 40 potential symptoms both motor and non-motor. Examples of motor issues include: tremor, rigidity, facial masking, tremor, shuffle and balance. Examples of non- motor issues include: bowel & bladder issues, sleep, speech, hypotension, anxiety, apathy, mild cognitive changes. A Parkinson’s Ireland members survey (2022), showed that sleep was the top issues experienced by 70% of participants, followed by motor issues and thirdly speech/ oral issues – 58%.

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, may be prescribed by a physician and this can optimise symptoms and 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 (DBS). These may be considered in advanced Parkinson’s when oral medication is no longer effectively managing symptoms. The national DBS service was launched in 2021 in Ireland with dual site location in the Dublin Neurological Institute, Mater Hospital & Beaumont Hospital. Another significant milestone for those in Ireland who may be eligible for treatment.

Living effectively with Parkinson’s disease requires not only taking medication but also learning about the disease, the treatment, and the necessary tools. Promoting self-awareness in turn encourages self-management. The WHO describes self-management as a critical component to delivery of care “countries where ageing populations and the growing burden of non-communicable disease means that there is ever greater demand for health services.”4

Live well with PD- KEES toolkit. At Parkinson’s Ireland we have developed the KEES toolkit to assist in self-management and efficacy when living with Parkinson’s. The toolkit focuses on the below areas and forms the basis of our ‘Newly Diagnosed

Programme’. Developed in 2023 the programme takes place virtually, over a period of 4 weeks and includes a follow up with participants for up to 20 weeks. The structure of this programme is to educate, increase selfmanagement and advocacy in a small group setting to assist those living with PD. This course takes place quarterly and is facilitated by our Parkinson’s nurse specialists . Those interested can contact our national office to be placed on the waiting list.

Knowledge – Information from reliable sources and at an appropriate level suitable. Knowledge promotes self-efficacy of a chronic illness, to improve ownership of the condition and maintain person centred care.

Education – The aim of this knowledge is to educate on medication, optimise symptom control and improve adherence to prescribed medication.

Four crucial aspects to optimise PD medication are:

1. Consistent Timing. Meds on Time, Every Time!

2. Advice to be taken with/ without food

3. Avoiding Constipation

4. Hydration

Medication alongside complimentary therapies are key pieces to the symptom management jigsaw. Hence a personalised and holistic approach and care plan.

Exercise – Exercise is essential in the management of motor and non-motor symptoms. An emphasis should be placed on the psychological benefits for PD. It is becoming increasingly evident, in research, that exercise may have the potential to slow the progression of Parkinson’s Disease. Regular, high level exercise and when maintained showed strong evidence of slower deterioration in those with PD. This was evaluated using several assessment tools.5 Further research is needed into the specific role of exercise and disease modification.

Support – Recognise and Reach Out.

Participating in research opportunities is a positive step and an opportunity to contribute to the future pathway of Parkinson’s. Support not only includes the network of health professionals but also support & education for family members and care partners.

Parkinson’s Ireland facilitate this through our local branch network and daily zoom schedule, alongside our national support line & PD nurse support.

Hospitalisation of a person with PD

Education for health professionals on the importance of Parkinson’s medication is a priority for Parkinson’s Ireland. Parkinson’s medication is time-sensitive and a delay by even 30 minutes can have serious implications for some patients. Delaying the administration of medication may have an impact on not only movement but speech, swallowing and anxiety levels. Missed doses or withdrawal of medication may lead to delayed recovery and significant deterioration of a person with Parkinson’s. In 2022 the UK Parkinson’s Audit states”58%

of people with Parkinson’s admitted to hospital do not receive their medication on time every time.”7 In addition to timing, it is important to be aware of medication that is contraindicated in Parkinson’s such as haloperidol, metoclopramide and others.

Through various research it is evident that those with PD have an increased hospitalisation rate in comparison to controls. Yes, those with PD may be at an increased risk of falls but there are multiple motor & non-motor factors that may increase hospitalisation. The younger the age of onset and length of disease duration increases the risk of admission.6 A review of hospitalisation carried out in the UK highlights the need for education for all health disciplines, guidelines & protocols for management of PD during a hospitalisation.8 Overall education

surrounding Parkinson’s may reduce the length of stay during hospitalisation, may perhaps avoid a hospital presentation to begin with and may reduce complications due to poor adherence or administration of contra indicated medications.

Conclusion

To conclude, a Parkinson’s pandemic is evident. Projected numbers are expected to double by 2040. Parkinson’s is the fastest growing neurological disorder in the world. PD is stigmatised, something that networks all around the world are collaborating to eradicate. As our population continues to age, we need to increase our awareness of this disease. If the incidence of Parkinson’s is rising our health professionals need to be equipped with sufficient knowledge and education in order to provide the best care for those with PD.

Parkinson’s disease presents difficulties for both individuals with the condition and medical professionals for a variety of reasons, such as accessibility, clear diagnostic standards, the wide range of symptoms, an individual’s reaction to treatment, and variation of the disease’s progression. Each individual’s case should be treated accordingly.

“Seven million people, seven million variants of Parkinson’s. In everyone, the disease manifests itself differently.” Bas Bloem1

Parkinson’s Ireland

Parkinson’s Ireland is the national charity that supports, educates and connects those living with Parkinson’s, family members and health professionals. We provide services through our 15 branches and also through our national office based in Dublin. The support line is available to anyone trying to navigate Parkinson’s at any stage.

Parkinson’s Ireland provides a Parkinson’s nurse specialist service which includes phone support, virtual meetings one to one or group and nationwide talks for members and health professionals. We offer a call back service for our dietician Richelle Flanagan for those with questions specific to diet, it’s role in PD and living well.

Our national office also provides online classes which our members can avail of focusing on various aspects of Parkinson’s including mindfulness, psychological wellbeing, singing, yoga & physiotherapy classes. Educational leaflets and booklets are available online or on request from our national office. If you would like to find out more

please visit www.parkinsons.ie or call 1800 359 359.

References:

1 Bloem, B. R., Okun, M. S., Klein, C. Parkinson’s disease. The Lancet. 2020. Vol: 10291, pp.2284–2303. 2021

2 Maserejian, N., Vinikoor-Imler, L., Dilley, A. Estimation of the 2020 Global Population of Parkinson’s Disease (PD), [abstract]. 2020. Mov Disord. ; 35.

3 Siderowf, A., Concha-Marambio, L., Lafontant D., Farris. C., Ma. Y., Ureni. P. Assessment of heterogeneity among participants in the Parkinson’s Progression Markers Initiative cohort using α-synuclein seed amplification: a cross sectional study. 2023. The Lancet. Vol: 22. Issue 5. Pp 407-417. https://doi.org/10.1016/ S1474-4422(23)00109-6 .

4 World Health Organization. WHO global strategy on peoplecentred and integrated health services. Geneva: World Health Organization. https://iris.who.int/ handle/10665/155002. 2015

5 Tsukita, K., Sakamaki-Tsukita, H., Takahashi, R. Long-term Effect of Regular Physical Activity and Exercise Habits in Patients With Early Parkinson Disease. 2022. Neurology. 98(8):e859-e871.

6 Okunoye, O., Horsfall, L., Marston, L., Walters, K., & Schrag, A. (2022). Rate of Hospitalizations and Underlying Reasons Among People with Parkinson’s Disease: Population-Based Cohort Study in UK Primary Care. Journal of Parkinson’s disease, 12(1), 411–420. https://doi.org/10.3233/ JPD-212874

7 Parkinson’s Excellence Network. UK Parkinson’s Audit 2022https://www.parkinsons.org.uk/ professionals/ukparkinsons-audittransforming-care

8 Aminoff, M. J., Christine, C. W., Friedman, J. H., Chou, K. L., Lyons, K. E., Pahwa, R., Bloem, B., et al & National Parkinson Foundation Working Group on Hospitalization in Parkinson’s Disease (2011). Management of the hospitalized patient with Parkinson’s disease: current state of the field and need for guidelines. Parkinsonism & related disorders, 17(3), 139–145. https://doi.org/10.1016/j. parkreldis.2010.11.009