Dr. Nicole D’souza, a Neurophysiotherapist, in her interview with DEOC explained the Parkinson’s Disease (PD), the support that is available and accommodations that employers can provide to ensure a non-discriminating and an inclusive workplace.
1. Parkinson’s Disease is included as a disability in the Rights of Persons with Disabilities (RPWD) Act 2016. Can you please explain in layman’s language about the disease?
In India, more than 1 million people have been diagnosed with Parkinson’s Disease, and we see this number rapidly rising. Parkinson’s Disease (PD) is a neurological disease (related to the brain) usually resulting from deficiency of a chemical called dopamine. This is because the dopamine-generating cells, (types of nerve cells) in the Basal Ganglia (part of the brain) die slowly. Without dopamine, the nerve cells in that part of the brain cannot properly send messages to the different parts of the body resulting in the symptoms seen in PD.
2. Do young people get the disease? What is the usual age of its onset?
Young onset Parkinson’s Disease (YOPD) occurs in people younger than 50 years of age. However most people with idiopathic or typical Parkinson’s Disease usually develop symptoms at 50 years of age or older. There is also a Juvenile Parkinsonism which occurs in people below the age of 21 years.
3. What is the available treatment?
There is no known cure for Parkinson’s Disease. The goal of the treatment is to control symptoms. Medications control symptoms, mostly by increasing the levels of dopamine in the brain. Doctors usually prescribe levodopa (L-dopa), which helps replace the brain’s dopamine. Other drugs may be prescribed that affect dopamine levels in the brain.
Surgery may be an option for some patients with Parkinson’s Disease. These surgeries do not cure Parkinson’s Disease, but may help ease the symptoms. Deep brain stimulation is one such surgery.
Although medications are the mainstay of treatment, patients with PD require interventions from a multidisciplinary team (Physiotherapist, speech therapist, occupational therapist, psychologists, dietician, etc.) to enable them to live independently and to their fullest capabilities.
4. How does Parkinson’s Disease functionally affect an individual?
Parkinson’s Disease is an illness that affects the part of the brain that controls how one moves his or her body. Its initiation can be so slow that one doesn’t even notice it at first. But over time, what starts as a little shakiness (tremor) in the hand can impact various essential daily activities like how a person walks, talks, sleeps, and thinks.
A person with Parkinson’s Disease experiences an array of symptoms like shaking (tremor) of the hand, legs or mouth, slowness of movement, stiffness in the body, problems with balance and even pain. The collective effect of which, is an inability to perform even essential daily activities like eating, bathing, dressing, walking or even sitting down and getting up from a chair.
Their ability to speak usually gets affected, limiting their ability to communicate with others. They may also suffer from cognitive and mood impairments like memory loss, depression, hallucinations, delusions and anxiety. All this greatly affects their quality of life and that of their families.
5. Can people with Parkinson’s Disease continue to study/work?
Most people who have Parkinson’s Disease live a normal to a nearly-normal lifespan, but the disease can be life changing. For some people, treatment keeps the symptoms at bay, and they’re mostly mild.
For others, the disease is much more serious and really limits what they’re able to do. Parkinson’s has 5 stages ranging from mild symptoms that occur only on one side of the body and are not disabling, which then progress to symptoms on both sides of the body, and balance and walking issues.
In the last stage of PD a person may be bedridden. However it is important to know that people may remain at a certain stage for years together and may never reach the 5th stage.
Even though Parkinson’s Disease can have a big impact on a person’s life, with the right treatment and help from a multidisciplinary team, they can still be functional and delay the progression of the disease.
There are a number of people with PD who, in spite of their difficulties, still hold a regular job. They range from Directors of companies, to managers, to surgeons, to teachers, to beauticians and blue collar workers. Internationally, one of the most famous young individual with PD is the actor and philanthropist Michael J Fox. He continues to act, manage his foundation and advocate for the rights of persons with PD.
6. What accommodations are required in the workplace?
Due to lack of awareness about PD, there is a lot of stigma associated with it. Thus many people with Parkinson’s Disease choose to hide their disease from their employers and colleagues because of the fear of losing their jobs. Persons who get diagnosed with PD during the prime of their lives have faced hardships at work trying to maintain the same intensity and quality of work that they used to. This has led to many being fired from their jobs, forced to take early VRS or others who left because they just couldn’t cope with the added stress and lesser performance.
With the inclusion of PD as a disability in the RPWD Act 2016, we hope to see more people with Parkinson’s Disease being supported in the workplace.
Following are some suggestions for employers:
- Equal Opportunity Policy: Frame an Equal Opportunity Policy in line with the RPWD Act 2016. It will not only provide confidence to the employees to share about their difficulties and seek accommodations, but also help Managers in providing the right support to the employee.
- Awareness: Create awareness about Parkinson’s Disease among employees and employers. It is important to be aware that even though people may have certain visible symptoms like tremor, slurred speech and change in posture and style of walking, mentally they can still be high functioning.
- Financial Support: PD is an expensive, incurable disease and loss of employment can put a significant strain not only on the person with Parkinson’s Disease, but on the extended family as well. Hence, certain financial support would really help in accessing better treatment options.
- Individualized Accommodations: Flexible timings, assistive technologies, personal assistant, restructuring jobs, time to go for rehabilitation therapy are some of the accommodations required in the workplace.
7. What assistive technologies are useful for people with Parkinson’s Disease?
There are a number of devices, apps and living aids available for those living with Parkinson’s Disease. However, most are not available in India. Some examples are the liftware eating tools, writing tools, wearable technology etc. You can view more options on https://parkinsonsdisease.net/living-with-pd/assistive-devices/
People can access apps which help them track their symptoms or give them more information on PD and exercises for PD. Assistive aids like the laser cane are now available in India. https://enabled.in/wp/chalte-raho-parkinsons-patients-walking-stick/
8. What support groups exist in the country?
The Parkinson’s Disease and Movement Disorder Society (PDMDS) currently has 55+ centres in 11 States in India. At these support groups free multidisciplinary therapy is provided free of cost to all people with Parkinson’s Disease. For information about these support groups you can visit the website www.parkinsonssocietyindia.com
9. Tell about yourself/your organisation and the work that you do.
My name is Dr. Nicole D’souza. I am a Neurophysiotherapist with a Masters Degree in Physiotherapy in Adult & Paediatric Neurology. Since 2011, I have been the Head of Therapy at the Parkinson’s Disease and Movement Disorder Society (PDMDS). The PDMDS is a charitable society started in 2001 by Dr. B. S. Singhal, a renowned neurologist. The aim of the society is to raise awareness about PD, provide free therapy for people with PD and improve the quality of life of people with PD and their families. PDMDS also provides free medications and assistive aids to needy individuals with Parkinson’s Disease. For people with PD who are homebound we have outreach services. Currently, the aim of the society is to extend its services to people living in smaller states, rural and tribal areas with limited or no resources for people with Parkinson’s Disease.