11 April,2022 10:04 AM IST | Mumbai | Tanishka D’Lyma
Illustration/Uday Mohite
The first step in tackling an illness is to properly understand what one is dealing with. Additionally, the power of knowledge can also break stigma and help create awareness, which in turn will help us support Persons with Parkinson's (PwP) better, be it through volunteering, donating to support groups, funding research or spreading awareness.
Tejali Kunte, head of psychology at Parkinson's Disease and Movement Disorder Society (PDMDS) in Mumbai, explains, "As a psychologist, it is essential that I give information about the disease to both patients as well as family members so that they understand it and its many disabling manifestations." And so, Kunte along with other healthcare professionals help clear common misconceptions about Parkinson's Disease (PD).
REALITY: Parkinson's is often considered the disease of the elderly, seen in individuals above 60 years of age. But the onset of symptoms may even occur between the age group of 21 to 40 years, which is known as Young-onset Parkinson's. The clinical feature of a person with Young-onset Parkinson's is similar to a person with Older-onset Parkinson's. Sometimes the onset of symptoms may even occur at or before the age of 20 years, which is known as
Juvenile Parkinsonism.
REALITY: In Hindi, Parkinson's is known as âkampavat', derived from the word âkampan' that means tremor. This tremor is a prominent, visible symptom causing many to believe that every individual with tremors has Parkinson's, which is untrue. In fact, some do not experience tremors. People experience tremors due to several other conditions. Therefore, it is incorrect to always connect tremors
to Parkinson's.
REALITY: There is also a common misconception that Parkinson's is contagious. Parkinson's is a neurological condition, that is, a condition of the brain that is not contagious and cannot be transmitted from one person to another.
Dr Krupa Bare, head of physiotherapy, PDMDS, Mumbai
REALITY: People with Parkinson's can live long and meaningful lives depending on the rehabilitation and medical care received. However, as the disease progresses, the person may become vulnerable to falls and infections that can be dangerous. Parkinson's is not fatal nor a direct killer in a way a heart attack may be. Most pass away with Parkinson's disease and not from it, explains Kunte.
REALITY: This is one of the most common myths. People think that Parkinson's is only a motor condition, but there is a lot more to it. While it is true that symptoms include shaking and tremors, slowness of movement, rigid muscles, etc, non-motor symptoms over the years have also gained a lot of attention from experts and researchers. This includes cognitive impairment or dementia, fatigue, sleep problems, and even in some cases anxiety and depression. At times, non-motor symptoms can be more disabling than motor symptoms. Therefore, it is important to talk to your doctor to address symptoms for early and timely treatment.
Dr Anant Pandhare, medical director, Dr Hedgewar Hospital, BAVP, Aurangabad Kunte continues that the non-motor symptoms can include cognitive
impairment, sleep dysfunction, depression and anxiety, constipation, fatigue, hallucinations and delusions. These symptoms are often overlooked and remain unaddressed until the later stages of the disease. The non-motor symptoms of the disease not only affect the quality of life of a PwP but also cause stress and worry for caregivers.
. Education and awareness: Join the global movement to spread awareness about Parkinson's Disease this April. Also, get informed, dispel myths with facts and broaden your understanding of the illness with Parkinson's Foundation.
LOG ON TO worldparkinsonsday.com and parkinson.org
. Engage: The Brain Bridge Box is a stimulus-based kit of puzzles and art activities to help exercise cognitive and motor skills.
LOG ON TO @echoinghealthy ageing on Instagram
COST Rs 1,200
. Support groups and therapy: While there is no cure for Parkinson's Disease, there are ways for PwP to manage symptoms and lead a fulfilling life. It is also important for caregivers to seek support and take care of their mental and physical well-being, too. The PDMDS model of care includes free, community-based, multidisciplinary, evidence-based, group therapy comprising physiotherapy, speech therapy, occupational therapy, psychological and cognitive therapy, diet and nutrition, yoga and dance and movement therapy.
Dr Maria Barretto, CEO, PDMDS elaborates on the PDMDS support groups, saying, "At the PDMDS support centres, members learn about Parkinson's, its symptoms, management and treatment. The support centres provide a common platform for PwP and their caregivers to meet, share experiences and strategies, and motivate each other, reiterating the motto of the society - together we move better."
LOG ON TO parkinsonssociety india.com
