When I was 10, my great-grandmother passed away. Growing up, I had some great memories with her. She liked to sing me nursery rhymes as we stood by the window, my little hands clutching the grills as I peered outside and she pointed to the building opposite my house and told me that that was the school I would go to when I was a
‘big girl’.

She was a woman far ahead of her time; modern, fluent in English and the
very personification of elegance and class. She would sometimes recount how she had fought alongside some of the nation’s great freedom fighters for our Independence and even gone to jail for the same.

I still remember how her eyes would light up whenever she spoke about something she was passionate about.
At the tender age of 6, as I started to discover life, my great-grandmother (or ‘Dadi’ as
I used to call her) began to lose herself. Post my great-grandfather’s demise, she had
become increasingly quiet and secluded and was soon diagnosed with Alzheimer’s.

I was very young at the time but a very observant and curious child. It was
the little things she started to forget first- where she had kept her wallet and the way home followed by the bigger ones- her relatives, family members and finally, herself.

I saw my proud, independent great-grandmother regress into an almost child-like state where she needed to be taken care of, fed and often bathed. The responsibility of her care was handled mainly by the women of the household- my grandmother, mother and aunt and at later stages, professional help was brought in.

I saw the love, care and affection with which they took care of her but also the toll it took on them. I witnessed the toll neurodegenerative diseases have on a family- not only the patient but the caregivers as well.

World Brain Day

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Every year, the 22nd of July is internationally celebrated as ‘World Brain Day’.
It began in 2014 as an initiative of The World Federation of Neurology (Public Awareness and Advocacy Committee) with the aim to increase public awareness and promote advocacy related to brain health. 1

The Theme

This year, the World Federation of Neurology (WFN) has partnered with the
International Parkinson and Movement Disorder Society to raise awareness for Parkinson’s Disease, a neurodegenerative brain disease that affects the mind, movement and almost all aspects of brain function.
Through this initiative, the WFN is working alongside more than 122 global organizations to advocate for improved patient care, education, and additional research for those living with Parkinson’s Disease and their caregivers. 2

The Hurdles

Parkinson’s is a chronic, neurodegenerative disease that affects movement and almost all aspects of brain function. The motor dysfunction coupled with non-motor symptoms can significantly limit the patient’s ability to perform typical day-to-day activities resulting in the poor quality of life and dependence on others.

There are more than 7 million people with Parkinson’s disease worldwide and the illness affects many more than this number through its impact on families and caregivers.
While the distinctive symptom of Parkinson’s Disease is shaking and slowness of movement, the degenerative disease affects movement, the mind and brain function generally disrupting sleep and cognitive ability, causing pain and gastrointestinal issues, provoking anxiety and depression and reducing motivation and quality of life.

Early diagnosis and access to effective treatment are vital in order to help patients find relief and enhance their quality of life. 3

However, the diagnosis is often delayed or
worse, the condition is misdiagnosed and the symptoms poorly treated.
This may have detrimental effects on the patient’s health and final outcome. Moreover, access to quality neurological care, treatments, and essential medication is unavailable in many parts of the world.

Statistics state that last year, while the NIH allocated more than U$6 billion on infectious diseases research, less than US$300 million was spent on PD research.
PD breakthroughs heavily depend on devoting more resources to advancing this field of research. 4
Additional resources are needed to conduct further research regarding the
cause, onset, progression, and treatment of this disease.
This will help to ensure early diagnosis, effective management and improvement of overall quality of life of patients and their caregivers.

Parkinson’s and COVID-19

Although Parkinson’s patients are not more likely to be infected by COVID-19 than the general population, being older puts them at risk for more severe infections. Also, a higher mortality rate due to COVID-19 has been described in advanced Parkinson’s patients and tied to older age and longer disease duration. 5

Additionally, as a result of disruption to the healthcare system by this ongoing pandemic, Parkinson’s patients are experiencing significant challenges in accessing ongoing care due to the cancellation of appointments and the difficulty of scheduling routine treatments, potential medication supply issues and disruption to research, and clinical trials.

The pandemic has also had a significant impact on family life, relationships and the emotional wellbeing of the patients and caregivers.
Caregivers are struggling to cope
on their own without help from family members or respite and other services.

In these trying times, in addition to educating ourselves and spreading awareness regarding this neurodegenerative disorder, we must also do our bit to help the patients and their caregivers in whatever way we can- be it volunteering to talk to elderly patients, helping out with groceries and essentials or donations to NGOs.

– By Divya Samat

References:

1 https://wfneurology.org/world-brain-day-background
2 https://wfneurology.org/2020-07-19-wfn-wbd
3 https://wfneurology.org/2020-07-19-wfn-wbd
4 https://www.journalofparkinsonsdisease.com/covid-19-may-compound-social-and-eco
nomic-burdens-parkinsons-disease
5 https://parkinsonsnewstoday.com/2020/06/02/covid-19-exacerbates-some-parkinsons
-symptoms-study-finds/