11 April is World Parkinson’s Day; this is a campaign established by Parkinson’s UK aimed at promoting awareness of a complex neurological disorder called Parkinson’s disease (PD). This is a disease that many will have heard of yet understanding of it is still lacking. Parkinson’s UK, formerly the Parkinson’s Disease Society, was founded in 1969 by Mali Jenkins. Mali’s own sister, Sarah Jenkins, suffered from PD, and the charity grew from Mali’s desire to educate herself on her sister’s condition, and consequently provide support and education to, and share experiences with others affected by PD. The three key aims of the charity remain largely the same today from when it was first started: to help patients and their families with the problems arising from PD; to collect and disseminate information on PD; and to encourage and provide funds for research into PD . PD is the second most common neurodegenerative condition, after Alzheimer’s disease, and is estimated to afflict 1% of the over 60s population worldwide . In light of the current COVID-19 pandemic, it is more important than ever that we remain mindful of PD sufferers, as they are among the most vulnerable in our society.
PD is a progressive and irreversible neurodegenerative condition with three key motor symptoms: rigidity, bradykinesia (impaired, slow movement) and resting tremor. In addition to motor symptoms, cognition can also be affected; patients with PD commonly experience symptoms of depression and anxiety, changes in emotional state and behaviour, sleep disturbances, and dementia . PD is an age-related disorder (most affected patients are over 50), and is largely idiopathic, although in the last 20 years genetic risk factors for PD have been the subject of increasing amounts of research . Popular opinion has hypothesised that environmental factors may also be involved; however, it is likely that both genetic and environmental factors play a role in the disease.
The impact of COVID-19 on patients with Parkinson’s disease
COVID-19 – first identified in Wuhan, China – is an infection caused by the pathogen severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) , and is discussed in greater detail in a previous Porterhouse Medical article entitled COVID-19: Just another coronavirus? The characteristic symptoms of COVID-19 include a fever, dry cough and shortness of breath. Individuals with PD do not have an increased risk of contracting the virus compared to those without the condition, as PD does not result in immunodeficiency. However, because of the age-related nature of PD and the physical deficits associated with it, sufferers are at a greater risk of developing a more severe form of the illness if they contract the virus. The respiratory complications that can occur as a result of PD, such as changes in the strength, tone and compliance of muscle tissue of the airways and chest wall could leave patients susceptible to more severe illness [6,7]. The government has advised PD itself does not put patients in the extremely vulnerable group, but it is still vital that patients follow the social distancing measures laid out by the NHS  and government  for the public. The NHS will contact extremely vulnerable individuals directly from 24 March, and these individuals should follow the specific shielding guidance given.
The social distancing measures put in place for the public’s protection may present further issues to patients with PD, who are likely to require significant emotional and practical support in their day‑to‑day lives. Reduced support from care workers due to illness and the need to self-isolate may affect assistance with activities such as food preparation, or physiotherapy exercises. Given the cognitive symptoms of PD, isolation from friends, family and support groups may also have a profound impact on the psychological wellbeing of PD patients – potentially worsening symptoms of depression or anxiety. It is therefore important than lines of communication are kept open between PD sufferers and their support system, which may be achieved via phone calls, text messages and video calls, to prevent feelings of isolation or loneliness.
Additionally, for many of the medications that are prescribed to treat PD, such as levodopa and apomorphine, consistent dosing is critical. Inconsistent dosing due to lack of access to medication can result in uncontrolled symptoms – such as the inability to walk and speak – and it may take a patient with PD a long time to recover from such an incident . It is important to ensure that patients with PD have sufficient means of obtaining their medication while COVID-19 social distancing measures are in place, and that steps are taken to ensure that patients are taking their medication on time. This may include an alarm set on the patient’s phone, or a call from a support worker to remind the PD patient.
Get involved to promote awareness and understanding
Balancing the need to practice social distancing with the support and assistance that those with PD require in their everyday lives will be challenging, and so it is more important than ever to increase understanding and awareness of PD. This year, for World Parkinson’s Day 2020, Parkinson’s UK is asking for anyone affected by PD – either as a sufferer or a supporter of a friend or family member with the disease – to send in stories of their experiences to be published on an online map on the Parkinson’s UK website. By sharing a wide variety of experiences, World Parkinson’s Day 2020 aims to dispel misconceptions and raise awareness and understanding of the disease. Further information about World Parkinson’s Day 2020 and help, support and guidance that is specific to PD in the time of the coronavirus pandemic can be found on the Parkinson’s UK website: https://www.parkinsons.org.uk/.
- Parkinson’s UK. Our history. Available at: https://www.parkinsons.org.uk/about-us/our-history. Accessed April 2020.
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- Advice for everyone – Coronavirus (COVID-19). Available at: https://www.nhs.uk/conditions/coronavirus-covid-19. Accessed April 2020.
- UK. Coronavirus (COVID-19): what you need to do. Available at: https://www.gov.uk/guidance/coronavirus-covid-19-information-for-the-public. Accessed April 2020.
- UK Parkinson’s Excellence Network. Caring for your resident with Parkinson’s. Available at https://www.parkinsons.org.uk/sites/default/files/2020-02/B114_Caring%20for%20your%20resident%20with%20Parkinson%27s_FINAL_WEB_2019.pdf. Accessed April 2020.