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What do we know of Young Onset Parkinson's disease (YOPD) that occurs before 40 years of age, and can affect lives of women at work and home?
Parkinson’s Disease or PD is a neurodegenerative disease that causes nerve cells in the area of the brain that controls movement to weaken or die.
The term ‘neurodegenerative’ means that it’s a condition involving the degeneration of the neurons (cells) in the brain that progresses over time.
The human brain has certain chemicals called neurotransmitters that send messages to different parts of the body to control our bodily functions and movements.
There is a small area in the brain called the substantia nigra. In this area, an important neurotransmitter called Dopamine is produced. Dopamine is responsible for allowing you to feel pleasure, satisfaction and motivation, and helps control the muscles. When you feel good that you have achieved something, it’s because you have a surge of dopamine in the brain.
When it comes to Parkinson’s disease, there is a loss of dopamine-producing cells. As for the symptoms- they begin when there is a reduction of around 70%-80% of dopamine-producing cells.
As the disease progresses, dopamine in the brain decreases, even more, raising problems with movement control, errors in planning of a movement, muscular stiffness, tremor, and mood disorders.
While one may think getting diagnosed with Parkinson’s might be the end of it all, one should understand that there are exercises and medications through which one can curb some of them.
Idiopathic Parkinson’s disease
Idiopathic Parkinson’s, or what we usually think of like Parkinson’s Disease, usually begins between the age of 55 to 65. It rarely occurs before the age of 50. The main symptoms of this include tremors, slow movements, trouble balancing, trouble walking, and rigidness of muscles.
Juvenile and Young-Onset Parkinson’s disease (YOPD)
Juvenile PD is constituted a rare disease that onsets before the age of 21. On the other hand, Young Onset Parkinson’s Disease is something that occurs before the age of 40. The symptoms of these are similar to PD.
Drug-induced Parkinson’s
Drug-induced Parkinson’s occurs when a drug interferes with dopamine production and/ or transmission in one’s body. This also usually is seen in older people, and the symptoms include tremors, rigidity, slowness of movement, and gait disturbance.
When I sat down to research PD, I had a slight idea of what it was, but my knowledge about what it exactly is, and how people with PD go about their lives was limited.
But, when I started reading about it, I grasped that PD doesn’t just occur to older people, and there is an entire demographic we fail to consider- the YOPD.
Young Onset Parkinson’s Disease is slightly different from PD. While PD occurs in people after the age of 50, YOPD occurs in people younger than 50. In India, about 3% of India’s 2 Million people are affected by YOPD- which is around 60000 people.
Moreover, the challenges faced by this demographic are completely different to that of a person that has crossed 50. These people are actively working in their jobs and fulfilling other non-professional job responsibilities like housework, child-rearing and pregnancy too.
I interviewed four women- Ayesha, Priti Patil, Nilam Deshpande and Anuja Zore (consent given) via an email interview. These four women are a part of PDMDS- Parkinson’s Disease and Movement Disorder Society. PDMDS is an Indian organisation meant for people with Parkinson’s. Let’s see what these women have to tell about living with YOPD.
All the four women I talked to, didn’t have any issues with pregnancy and child-rearing as they had already passed that time of their lives. However, they had similar experiences with menstruation- fatigue, difficulty in changing sanitary pads, weakness and hormonal changes.
YOPD appears before 50, and most working individuals- especially women, have to work multiple jobs in both their professional life and personal when they go home, cook food for the family and do household chores. Handling the disease with all these things is difficult as they tend to hide the disease sometimes in the fear of being outed or treated differently.
On this, Priti Patil told me about the alienness of this concept-YOPD. She said,
“It is, even to me or even my closed ones, no one ever come across something like this ever since until I researched myself on my exponentially rising symptoms like shaky hands, difficulty in holding a pen, tiny writing, even my signature wasn’t recognized the by banks (tremors in medical jargon), difficulty in moving my limbs, feeling exhausted, fatigue, depression- which were highlighted after going through several scholastic scientific kinds of literature.”
While Ayesha said that people generally consider Parkinson’s as having tremors- it’s much more than that. Most people only know a part of what Parkinson’s is!
However, things were a little different for Nilam. She lives in a small city where there is no awareness of Parkinson’s in general. When she visited the orthopaedic doctor and physiotherapist after experiencing tremors, they didn’t validate her diagnosis and suggested she faked it.
When I asked the three women if the stigma associated with YOPD affects their professional life, here’s what I got to know. Here’s what Priti said:
“YOPD shows two different personalities depicting reality. Firstly, people around the vicinity of a person with YOPD would stare at their prominent symptoms like tremors, rigidity, dyskinesia, hyperkinesia, etc. Several mornings, the patient has stiffness, so there are situations wherein they might turn up late for work. But, it might go into the assumption of being lazy.”
While highlighting more on what women go through, she added:
“Women- are anyway taken up as the weaker section of the workforce, and with such health conditions, it is a dire need for her to actively contribute to the mainstream workforce. Although there are well-articulated Rights for Person with Disability Act 2016– no policies are designed to implement those.”
Despite workplaces being more open, people are still unaware of what YOPD is, and unfortunately, educating people in workplaces is almost impossible.
When I asked if there is workplace awareness about YOPD, I got different answers.
Ayesha said that it depends on what kind of workplace you work in; if it is a highly educated and intellectual workplace, people tend to be aware of YOPD- while Anuja Zore completely denied any awareness of it where she worked.
However, for Priti Patil, it was a pleasant experience as her workplace is vocal and open about YOPD and PD in general.
Sometimes, it’s a challenge for working women to go and disclose their illnesses to their colleagues. So, women tend to hide it to avoid getting fired or being treated unfairly.
However, our interviewees have different views on this. While Priti Patil says that she started losing the confidence she had in her successful career, she realised approaching the illness with a holistic approach can do wonders. Moreover, after she told her mentor about her illness, they responded to her with kindness and positivity.
Similarly, Ayesha and Anuja Zore said the same thing about being vocal about their illness to avoid miscommunication. For Nilam, she worked in a place with a health background so people knew what Parkinson’s was.
It’s good that these women came forward, leaving their fears aside and were accepted happily.
In an Indian setup, women are brought up with an expectation of responsibility in their minds. It builds up involuntarily when they get married and have kids- the responsibilities keep on increasing.
However, when these women get diagnosed with PD, it takes a toll on their mental health as they’re deprived of their responsibilities overnight.
Unfortunately, the patriarchal expectations don’t go. When interviewing them, all three had similar answers as to how women should let go of the patriarchal expectations. Families of these women need to understand the gravity of their diagnosis, and not force them to adhere to these expectations.
For Nilam, things weren’t smooth initally. Many thought she was just faking it to get out of work. However, her immediate family’s support was constant so she didn’t worry much.
Every single person needs support from their loved ones, friends and colleagues. But, when it comes to women with Parkinson’s, they certainly need more support.
Women are overburdened caregivers anyway, but when diagnosed with PD, they don’t want to feel like a burden to others.
Families should be sensitive about PD. Priti Patil says that the most important thing is to understand the condition scientifically. Once families understand the condition and stop demanding unnecessary (sometimes impossible) things- everything automatically settles down.
These small acts of inclusion can make a person with PD and/or YOPD feel included. Things become slightly easier for them when they know their family is beside them- no matter what.
Parkinson’s may limit some things for these women- but they come strong out of it. I would end with a quote from Ayesha:
“Take care of them now that they need you. Pamper and support them. Now it’s your turn to give back.”
Image source: a still from short film Everything is Fine
I am a journalism student with a penchant for writing about women and social issues. I am an intersectional feminist and an aspiring journalist. I identify as she/her. read more...
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