World Parkinson's Disease Day: Need for More Awareness and Compassion

World Parkinson’s Disease Day is observed on 11^th April every year across the globe. Its main objective is to create more awareness and greater understanding of this dreadful disease. Through various events this year, it also aims to raise funds for research, so that better treatments are developed and eventually a cure is found. Each and every day, Parkinson’s disease patients and their families face many hurdles and challenges that are sometimes insurmountable. The World Parkinson’s Disease Day provides a unique opportunity to improve the quality of life of people living with Parkinson’s.

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Genesis of World Parkinson’s Disease Day

World Parkinson’s Disease Day was launched on 11^th April, 1997. This date coincides with the birthday of Dr. James Parkinson, who was born on 11^th April, 1755. Dr. Parkinson is renowned for his article “An Essay on the Shaking Palsy” published in 1817, in which he first described the disease.

The very first World Parkinson’s Disease Day in 1997 was a joint initiative between the European Parkinson’s Disease Association (EPDA) and the World Health Organization (WHO), which was marked by the launch of the EPDA Charter for upholding the rights of Parkinson’s disease patients with regard to disease management. The initiative was supported by luminaries from across the world, including Princess Diana, Princess Margaret, Pope John Paul II, and boxing legend Muhammad Ali, among others.

The 2019 World Parkinson’s Disease Day Theme is “United for Parkinson’s”, which follows the “Unite for Parkinson’s” campaign that was jointly organized by EPDA and Parkinson’s UK during the previous two years (2017-2018).

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Ways to Generate Awareness about Parkinson’s Disease

Awareness is the key to improving healthcare for Parkinson’s disease patients and expediting research so that a cure is found soon. It will help to make Parkinson’s a priority health, social, and economic issue. The following initiatives can be adopted to raise awareness:

• Education: This is an essential component of any and all awareness campaigns. Accurate information, tailored to the needs of the target audience is important for generating awareness
• Advocacy: Parkinson’s disease advocacy efforts will lend a voice to people living with the condition and also help to influence policymakers for initiating healthcare reforms
• Conferences / Seminars / Panel Discussions: These events will bring together academicians, physicians, scientists, policymakers, healthcare workers, rehabilitation specialists, caregivers, and Parkinson’s patients on the same platform for raising awareness about the disease
• Workshops: These will give first-hand information and training on caring for Parkinson’s patients and coping with the disease
• Art Exhibitions: Exhibitions displaying paintings, drawings and other artworks by Parkinson’s patients will not only generate public awareness and interest, but also motivate and encourage others suffering from the disease
• Social Media: Judicious use of social media sites like Facebook, Twitter, and Instagram to post photos, facts, videos, resources, and real-life stories will raise awareness about Parkinson’s, especially among the new generation
• Fundraising Events: Sponsored activities and events such as walk-a-thons, marathons, cycling, and musical performances could be organized, from which all the proceeds would contribute towards the welfare of Parkinson’s patients
• Real Life Stories: Persons living with Parkinson’s should be encouraged to come forward and tell their story to help normal people understand their trials and tribulations, as well as appreciate their achievements against all odds
• Press Conferences: Press conferences and media briefings about events and activities held on the occasion of World Parkinson’s Disease Day will help to highlight the issues associated with Parkinson’s disease to the general public
• The Red Tulip: The red tulip flower was adopted as the official symbol of Parkinson’s disease at the 9^th World Parkinson’s Disease Day, held in Luxembourg in 2005. Wearing a red tulip raises awareness and support for people living with Parkinson’s across the globe
• The Silver Ribbon: Silver is the official color of Parkinson’s disease. Wearing silver ribbon wristbands, lapel pins, stick-ons, T-shirts, charms, necklaces, and trinkets will not only generate awareness, but also raise money from the sales for the benefit of Parkinson’s patients

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Parkinsons Disease & its Challenges

Parkinson’s disease is a chronic, progressive neurodegenerative disease that usually affects people over 60 years of age, but can affect younger people as well. Research indicates that Parkinson’s disease is caused by a combination of genetic and environmental factors, but its exact cause and progression is still poorly understood.

Parkinson’s patients face many challenges as the disease progresses. These include uncontrollable shaking of the hands, slow movement, and rigidity or stiffness in the limbs. They also face difficulty in balancing, chewing, swallowing, and speaking. Other problems include mood disorders, depression, cognitive impairment, and dementia.

Besides the physical and mental disabilities, Parkinson’s patients face stigmatization and discrimination from fellow members of society, which is also a major challenge. Moreover, Parkinson’s cannot be cured and there is no objective test or biomarker for the disease.

Parkinson’s Disease: Facts & Figures

• 6.3 million people are affected by Parkinson’s disease worldwide
• Over 0.2 million deaths occur annually from Parkinson’s disease worldwide
• Parkinson’s is the second most common neurodegenerative disease
• Incidence of Parkinson’s increases with age
• Higher rates are reported in Caucasians than Asians
• Men are 1.5 times more likely to have Parkinson’s than women
• Economic burden of Parkinson’s is over USD 25 billion annually
• 50 percent people don’t know that Parkinson’s is a neurological condition that affects movement
• 75 percent people don’t know that rigidly is a major symptom of Parkinson’s disease

Ways to Improve the Lives of Parkinson’s Disease Patients

• Healthcare: Healthcare facilities catering to the needs of Parkinson’s patients should be easily accessible and medicines, readily available
• Medications: Taking medicines regularly as per the schedule fixed by the doctor is very important for controlling the symptoms
• Diet: A good, well-balanced, healthy diet and drinking lots of water is recommended. This will help medicines work to their full potential and prevent constipation
• Exercise: Regular exercise for 30 minutes a day can improve symptoms and boost self-confidence. Exercises should be enjoyable for the patient, for example, dancing classes
• Sleep: Regular and adequate sleep will make the patient refreshed, improve symptoms, and increase the capacity to function properly. If fatigued, short daytime naps can help restore energy. Sleep also improves the level of dopamine in the brain
• Care & Support: Tender loving care and support from the family improves the life of Parkinson’s patients significantly. Community support and a good social circle are also very important for patients to lead a normal life
• Apps & Gadgets: Apps and electronic gadgets that can track a patient’s vital signs, sleep patterns, mental status, brain activity, and other parameters would be very helpful
• Robots: The power of robotic technology could be harnessed for taking care of Parkinson’s patients in the near future. Healthcare robots are on the horizon and will help relieve much of the burden of caregivers. They could be used for initiating conversation with lonely patients and also help with daily chores
• Research: Since research takes time to bear fruit, it plays an indirect role in patient’s lives. However, concerted efforts will lead to the development of better diagnostics and treatments for Parkinson’s patients, which could pave the way for eventually finding a cure

In the end on World Parkinson’s Disease Day, let us pool together our resources and reach out to people living with Parkinson’s across the globe to make their lives more meaningful, comfortable, and happy.

References:

1. World Parkinson Coalition, New York, USA - (https://www.worldpdcoalition.org/default.aspx)
2. World Parkinson’s Day: United for Parkinson’s Campaign, UK - (https://uniteforparkinsons.org/)
3. World Parkinson’s Day - International Parkinson and Movement Disorder Society, USA - (https://www.movementdisorders.org/MDS-ES/MDS-for-Parkinsons-Disease)
4. Information Sheets - Parkinson’s Australia - (https://www.parkinsons.org.au/information-sheets)
5. GBD 2016 Parkinson’s Disease Collaborators. Global, Regional, and National Burden of Parkinson’s Disease, 1990-2016: A Systematic Analysis for the Global Burden of Disease Study 2016. Lancet Neurol. 2018; 17: 939-53.

Source-Medindia