Love, and other drugs: How these Mumbaikars are living with Parkinson's Disease

Last week as the World celebrated Parkinsonrsquos Day 67yearold Borivli resident Geeta Nene found herself reflecting on the journey she and her husband Govind have been on for more than two decades The turn of the new millennium brought with it changes they hadnrsquot anticipated Govind began complaining of tremors aching limbs and a heaviness in his body he couldnrsquot explain Alarmed they visited a doctormdashonly to be met with a diagnosis of Parkinsonrsquos DiseaseldquoWe had no idea what Parkinsonrsquos even wasrdquo Geeta recalls ldquoIt started with his legs shaking then eventually both his hands It was painful to watch him struggle But it is what it is Over the last 25 years wersquove both learned how to live with Parkinsonrsquosmdashhe as the patient and me as his caregiverrdquoParkinsonrsquos Disease PD is a progressive neurological disorder that primarily affects the substantia nigra the part of the brain responsible for producing dopamine As dopamine levels deplete the body begins to betray itselfmdashmanifesting as tremors stiffness slowed movement balance issues and an overall decline in motor function But thatrsquos just the beginningDiagnosed with Parkinsonrsquos in 2021 Yogesh Ruparel continues to hold on to one of his most cherished traditionsmdashplaying the dhol during Gudi Padwa processions Despite the challenges he remains committed to this ritual This year he played the dhol nonstop for an hourDr Maria Barretto CEO of the Parkinsonrsquos Disease and Movement Disorder Society PDMDS explains that the diagnosis is only the first hurdle ldquoMost people are simply told lsquoItrsquos a chronic conditionrsquo Thatrsquos it No one prepares them for whatrsquos nextrdquoAccording to her patients and their caregivers are left to navigate a minefield of confusion and more importantly stigmaBarretto a psychologist who has been with PDMDS for over 20 years was drawn to this work after realising how little awarenessmdashand supportmdashexisted for those living with the disease ldquoBecause of the fear of stigma people often donrsquot talk about itrdquo she says ldquoThis silence creates more confusion Friends and even family members may not understand whatrsquos happeningmdashwhy someone is suddenly moving slowly has a tremor or is behaving differentlyrdquoThe Parkinsonrsquos Disease and Movement Disorder Society PDSM was built on the ethos of creating a space where people could meet others living with the same conditionmdashnot in a hospital but in a community setting Last week patients of PD met at Our Lady of Salvation Church in Dadar to do movement exercises PicsAnurag AhireFor 58yearold Yogesh Ruparel the silence was something he refused to accept He first noticed a strange tremble in his toe in early 2021 while sitting in his living room in Worlimdashjust as the second COVID19 wave hit the city ldquoMy father had Parkinsonrsquos too and at the time he was bedriddenrdquo he says ldquoSo when I felt the tremor my mind went straight to ParkinsonrsquosrdquoAfter six months of several consultations and countless unanswered questions the diagnosis was confirmed Though he had anticipated the outcome hearing it spoken aloud was devastating ldquoI entered a phase of denial I had just lost my father to COVID three months before Everything had collapsedrdquo Already dealing with Ankylosing Spondylitis a chronic inflammatory condition that affects the spine Ruparel felt like Parkinsonrsquos was the final blowBut then came a turning point ldquoOne day my son said to me lsquoJust accept it Papa Wersquoll work on this togetherrsquordquo That moment he says snapped him out of despair He began sharing his diagnosis openly started physiotherapy started going to the gym and signed up for dance movement therapy ldquoI didnrsquot even know I could dancerdquo he laughs ldquoBut the rhythm just took over It was freeingrdquoDr Sakshi Lalwani and Tejali KunteDance Movement Therapy DMT has become a key tool in holistic Parkinsonrsquos care Tejali Kunte a Clinical Psychologist and Dance Movement Therapy Facilitator who has worked with many individuals with PD explains ldquoThe mind and body are deeply connected With Parkinsonrsquos that link becomes even more critical Anxiety worsens tremors tremors increase anxiety Movement helps regulate bothrdquoUnlike performancebased dance DMT focuses on autonomy expression and presence ldquoWe teach patients how to listen to their bodies breathe through tremors and recognise what their symptoms are telling themrdquoThis form of therapy is especially powerful given the range of nonmotor symptoms that come with PDmdashmany of which remain under reported Depression anxiety sleep disturbances hallucinations and even gastrointestinal issues are common ldquoPatients might not know their insomnia or constipation is related to Parkinsonrsquosrdquo she adds ldquoThis lack of awareness can further isolate themrdquoMarried for fortyfour years Geeta Nene and her husband Govind have been navigating Parkinsonrsquos together for almost 25 years nowmdashhim as the patient and her as his caregiver PicAnurag AhireldquoOne of the things I felt very strongly about was creating a space where people could meet others living with the same conditionmdashnot in a hospital but in a community setting somewhere they felt comfortable and saferdquo Barretto notes while recalling the ethos of PDMDS ldquoToday PDMDS has support centres across the countrymdashfrom North to South IndiardquoAccording to Barretto these are not just casual meetups Every session is structured and carefully designed with activities ranging from speech and communication therapy physiotherapy occupational therapy and even music and movement exercises These interventions are all part of a multidisciplinary approach to careOne of the traditions Ruparel holds closest is playing the dhol during Gudi Padwa processionsmdasha ritual hersquos preserved even after his diagnosis ldquoThis year I played the dhol continuously for an hour It was truly rivetingrdquoDr Maria BarrettoInspired by a conversation with his sisterrsquos neighbourmdasha man who had shut his shop and social life after his diagnosismdashRuparel decided to form a peer support group ldquoThat man told me lsquoMy life ended the moment I was diagnosedrsquo And I thought thatrsquos exactly why we need each otherrdquoToday Ruparel facilitates virtual support circles with seven other patients They meet online every few days where they share tips offer support sometimes just vent ldquoOne thing I keep telling them ismdashyou have to build an iron will You have to want to be independent and work towards thatrdquo he says ldquoSo that you can eat your own food without messing up the table Use the washroom without feeling embarrassed So that you donrsquot have to be dependent on someone for your daily routine It takes practice and a strong will But itrsquos possible Irsquom living proofrdquoAccording to the International Parkinson and Movement Disorder Society India is on track to have the largest population of Parkinsonrsquos patients globally The country sees 15 to 43 cases in every one lakh people with up to 45 per cent of those diagnosed between the ages of 22 and 49And itrsquos not just motor skills that deteriorate Vision too can decline Dr Sakshi Lalwani a neuroophthalmologist at CEDS Eye Hospital explains that Parkinsonrsquos can affect contrast clarity and peripheral vision over time ldquoIn some patients even eye movement is compromised They may struggle to look up or downrdquo She emphasises the importance of early dopamine supplementation and environmental adjustmentsmdashbetter lighting ergonomic setups and of course counselling ldquoLosing control over your vision can be psychologically taxingrdquoSome cases are far more severe Dr Ashok Patel a Bandra resident lost his brother to Parkinsonrsquos Plus Syndrome in 2018 Unlike standard Parkinsonrsquos this rare variant is resistant to medication and far more aggressive ldquoHe was bedridden for almost two yearsrdquo Patel recalls ldquoHis body stopped working but his mind stayed sharp Even when he lost his speech he could still understand everythingrdquoAnother friend of his a doctor himself lived with Parkinsonrsquos Plus for nearly a decade before passing away at 64 ldquoIt didnrsquot matter how disciplined or healthy he wasmdashhis condition just kept deterioratingrdquoAccording to Parkinsonrsquos Foundation between 20 to 40 per cent of people with PD experience some form of psychosismdashranging from confusion to vivid hallucinationsThese nonmotor symptoms can be just as debilitating as the physical ones but they often go unnoticed unspoken and untreatedBarretto recalls a session with one patient who told her ldquoI can see horses behind yourdquo It was a hallucinationmdasha symptom often triggered by Parkinsonrsquosrelated changes in the brain ldquoThese incidents show us just how complex the disease really is Itrsquos not just about movementmdashitrsquos about how people perceive the world their bodies and their place in itrdquoAnd yet through it all people like Ruparel continue to find ways to movemdashldquoMaybe getting Parkinsonrsquos wasnrsquot such a bad thing after allrdquo he says ldquoIt taught me how to live healthier explore things like dance and singingmdashand Irsquove even seen an improvement in my Ankylosing Spondylitis because of itrdquo2040 37People with Parkinsonrsquos who suffer from psychosismdashwhich ranges from confusion to vivid hallucinationsSource Parkinsonrsquos Foundation1543out of every 1 lakh people in India are diagnosed with Parkinsons4537of those are diagnosed between the ages of 22 and 49Source International Parkinson and Movement Disorder SocietyatOptionskeyd0ddb8ef8f1a62a8cdd22fac27fc5ea7formatiframeheight90width728params