“Patients with aphasia (a brain disease) are not stupid or dumb. They are intelligent and smart though they have difficulty in speech and communication. A lot can be done for them”
Ms. Brooke Hallowell, senior Speech Language Therapist (SLP) from Springfield, Massachusetts, USA was speaking at the first ever meeting of Persons With Aphasia (PWA) and their family members at the auditorium of Ram Manohar Lohia Hospital, New Delhi on 18th February 2023.
Ms. Hallowell has been travelling to and working with patients, caregivers and therapists in many developing countries all over the world. She emphasized importance of Life Participation Approach in Aphasia (LPAA) wherein family and others coming in contact with PWA are encouraged and trained in encouraging PWA to participate in as many life activities as possible. Or else PWA often suffers isolation and neglect leading to depression and lost opportunities.
The meeting was organized by the Department of Neurology, RML Hospital, New Delhi and Dr. Apoorva Pauranik (Neurologist, Indore), Director of Pauranik Academy of Medical Education. Students and residents from the Department of Neurology, Physical Medicine and Rehabilitation and Nursing attended the meeting along with Speech Language Pathologists.
About 20 patients suffering from aphasia came from far off places with their families. There was lively interaction between patients, caregivers, therapists and neurologists.
Dr. Apoorva Pauranik, dispelled many myths and misconceptions. He said that there is no role for any brain-drugs, tonics, surgery and stem cells. There is no time limit as up to how many years the recovery can occur or not. Rehabilitation of PWA is possible to a great degree. Teletherapy and computer based therapy are helping reduce treatment gap. Home Based speech Exercises (print as well as digital versions) can be administered by caregivers.
Dr. Apoorva Pauranik and Ms Brooke Hallowell called upon PWA and their families to organize Patient Support Groups or Self Help Group (PSG). Such associations can do tremendous good work. They act as platform for fellowship, friendship and sharing of experiences and stories. Such interactions prove motivational. PSGs are spring-boards and vehicles for ‘Advocacy’, wherein lobbying efforts can be collectively directed towards government departments for betterment of services for poor PWA in Public Sector Hospitals.
Dr. Kuljeet Singh Anand and Dr. Jyoti Garg (Both Professor of Neurology at RML Hospital and Atal Bihari Vajpayee Post Graduate Institute of Medical Sciences) welcomed all guests and committed themselves to creation of PSG of PWA in Delhi NCR region.
Dr. __ Professor of Neurosurgery at RML, Hospital and Dr. Achal Shrivastav, Professor of Neurology at AIIMS New Delhi also addressed the gathering.
The families of PWA were given a kit of Aphasia related resources and literature in Hindi.
Dr. Apoorva Pauranik informed that similar meeting of PWA have been organized over last one year at Ahmedabad, Kota, Udaipur, Jabalpur, Raipur. More are in pipeline at Pune (3rd March 2023), Mumbai (15-16 April 2023) and Trivandrum (29-30 April 2023). The aim is to create a national level network of PWA, caregivers, SLPs and neurologists.