HYDERABAD: Most of us begin walking at the age of one. While it seems like a struggle initially, overtime walking becomes involuntary and effortless. Similarly, balance, fine motor skills like writing, drawing also evolve with age and eventually become involuntary. All these actions and more can be collectively called ‘movement’. While some of us experience some difficulties with walking and balance in our late 60s, people with Parkinson’s disease suffer from significant movement difficulties that depreciate their quality of life drastically as the disease progresses.
Parkinson’s disease is a movement disorder presenting with motor symptoms such as:
- Slowness of movement
- Postural instability
However, almost all patients with Parkinson’s also suffer from non-motor symptoms like:
- Speech and swallowing difficulties,
- Depression and anxiety,
- Constipation and urinary troubles,
- Sleep anomalies,
- Hallucinations and delusions,
- Cognitive problems like memory, attention and visuo-spatial reasoning.
It is because of a combination of these symptoms, that everyday become a challenge for people with Parkinson’s.
In fact, the realities of a person diagnosed with Parkinson’s go beyond the visible symptoms and the financial strain that this disorder brings due to its irreversible and progressive nature. These
patients, like any of us, have lived their whole life independently, having handled all their responsibilities almost single-handedly. A diagnosis of Parkinson’s, then makes them people who are surviving within themselves struggling with denial, loss of independence, fear of social stigma and embarrassment, social isolation, feelings of self - directed anger, changing personal and family dynamics and a lot more. The saddest truth is that several of them do not move beyond this stage.
The Founder of the Parkinson’s Disease Movement Disorder Society (PDMDS) and neurologist DrBS Singhal wanted to have a common platform for those afflicted by this condition - for them to be able to congregate, share, educate, motivate, inspire and become empowered. Thus, the Parkinson’s Disease and Movement Disorder Society was founded, an all India Charitable Society established in 2001 under the Societies Registration Act of 1860. PDMDS has centres across India, like Maharashtra, Goa, Gujarat, Telangana, Karnataka, and West Bengal.
This eases the accessibility to people with Parkinson’s, provides rehabilitation based on the multidisciplinary model of care which draws from the fields of neurology, physiotherapy, occupational therapy, speech therapy, psychology and cognition, diet and nutrition, and alternate therapies such as music, dance and arts. These therapies are systematically used as adjuncts to medical therapy for Parkinson’s worldwide but are not used as much in India.
The society’s centre in Telangana is located at NIMS Hospital, Panjagutta, in Hyderabad. We conduct our sessions in the Department of Neurology with the support of Dr Rupam Borgohain and Dr Rukmini Mridula. This centre was started two years ago with the objective of spreading awareness, providing specialized, holistic care to each patient with Parkinson’s disease in Telangana. Over these two years, we have seen nearly 200 patients in this centre, some of whom even come from places like Warangal and Guntur just to attend our sessions. Many aspects like occupational
therapy, nutrition for Parkinson’s, education about psychological and sleep symptoms, were unknown to patients and they found it enriching to know about them. We provide them with handouts that they can take home, so that what is learnt in the session is adapted into their daily lives. We also assess patients on how much they have improved overtime as a result of these
therapies, so that we have a scientific way of identifying our services and their efficacy. Parkinson’s is a progressive condition and eventually, many patients become home-bound. For these patients, we provide free home visits to guide them about changes that can still be made. Our other welfare activities at PDMDS, Hyderabad include, providing free medications for the needy, assistive devices like wheelchairs and disability certificates for those who need it. We also conduct awareness sessions at old age homes, senior citizens groups, medical groups to create awareness about
- The uniqueness of our approach is that our services are specially designed only for Parkinson’s and other movement disorders, which provides patients with therapies that are scientific, innovative and in depth.
- Another direct benefit is that our services are free of cost, which makes it accessible for patients from all strata of society.
- What is most enlightening in our journey with patients at PDMDS, however, is that they now know that they are not alone. The feelings of isolation, anxiety and even guilt go away as soon as they realize there are several others suffering like them. In our sessions, patients meet others with Parkinson’s and their families, share, interact and feel emotionally motivated to bring new changes into their lives. Our vision for the state of Telangana, is to make sure we reach out to every single person with Parkinson’s and provide them with innovative and culture-specific methods of care and rehabilitation.
Meghana Pradeep Co-coordinator & psychologist at PDMDS