Founder President’s Speech

Presidential address
The last decade was memorable for me in more ways than one. Ten years ago, in August 1995, an idea to start a lay organization to help patients with Parkinson’s disease (PD) took root. Two luminaries Mr. BG Shah and Dr Gandhi joined hands with me to realize this dream. Mr. BG Shah was a reputed and much sought after Charted Accountant and Dr Gandhi was a renowned Pediatric Surgeon and academician who laid the foundation of pediatric surgery in India. Despite demanding carriers both of them were keen to start work on this mammoth task. Both were afflicted with PD. But both successfully battled the disease for better part of their lives without letting it take ascendance. Both passed away in their ninth decade leaving behind an organization which began with three men toiling away in a basement but at the last count, boasts over 6000 members around the globe.

In the decade since its inception Parkinson’s Disease Foundation of India (PDFI) has not only grown in numbers but has also kept pace with innovations in information and technology. We have a dedicated Webpage, a quarterly newsletter and frequent seminars which provide a forum for patients, caregivers, doctors, paramedics and social workers involved in care of patients with PD to get together for dialogue and exchange of notes. All this while our aim has been to provide psychological support and educate patients and their families about Parkinson’s disease with the belief that an understanding of the disease paves way for early diagnosis, appropriate and timely treatment, improved compliance and better doctor patient interaction.

The last decade has seen many exciting developments in treatment of PD. Most medicines being used for Parkinson’s disease are available in India. We now have two new dopamine agonists – Ropinirole and Pramipexole in the market. Both of these are non ergot derivatives unlike their predecessor bromocriptine. Two other but lesser known dopamine agonists Travistal and Carbegoline are available too. Entacapone, a drug which blocks dopamine metabolism in the brain thereby prolonging the duration of action of levodopa is being widely prescribed. A new preparation of levodopa called Syndopa MD has been recently introduced. This is a dispersible formulation with very rapid onset of action. It is the ideal preparation when rapid ON is desired like, in early mornings.

Over the last decade surgery for Parkinson’s disease too has become a well accepted treatment modality. Long term follow up of patients enrolled in multi-center trial of deep brain stimulation (DBS) of either subthalamic nucleus (STN) or globus pallidus (GPi) has shown that the treatment continues to provide significant benefit even after four years. One such study was conducted at eight centers across Europe and Canada. It included 49 DBS STN patients and 20 DBS GPi patients. There was a decrease in percentage of OFF time and percentage of ON time with dyskinesias, after surgery. The levodopa equivalent dose fell from 1039mg/day to 859 mg/day for the STN patients; for the GPI patients it rose from 1074mg/day to 1418mg/day (the difference is statistically insignificant). Many new drugs are under study. An ADAGIO study (Attenuation of Disease progression with AGILECT/AZILECT Once –daily) is underway. It is the largest clinical trial so far, to investigate disease modification in PD. Patients are being enrolled in Europe and North America. It will determine if Rasagiline can modify progression of PD. An entirely different treatment rationale is being explored in the US. A Cancer Prevention Study II Nutritional Cohort examined 147000 men and women from 1992 onwards. These people were questioned about use of painkillers they took and – on follow up – on incidence of PD. Surprisingly the ones who used painkillers had a 35% lower risk of developing PD than nonusers. This suggests that inflammation may be a pathogenic mechanism in PD. As collary anti-inflammatory drugs may be the new panacea. But this remains to be studied further. Though steeped in controversy stem cell research continues to stir excitement.

What the next decade will be like is yet to unfold. Where we go from here remains uncharted. But the future definitely looks promising!