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Aziz Husain, member of The Pakistan Parkinson’s Society, explains how the organisation are able to offer free membership – and discusses the difficulties in supporting more rural areas of the country
The Pakistan Parkinson’s Society was founded by Haroon Basheer in 2008. Haroon was the former country general manager of Citibank and American Express and had a busy social life before he was diagnosed with Parkinson’s in 2005. A few years after his diagnosis he founded the Pakistan Parkinson’s Society to assist people with Parkinson’s, and change the perception of Parkinson’s as a life-ending illness. Unfortunately, Harooon passed away in January 2018.
At the Pakistan Parkinson’s Society, we aim to help those living with Parkinson’s, as well educate their caregivers and families about the disease. This is done via organising support groups, talks and annual Unity Walks. Our most recent Unity Walk was in March 2018 (all images in this feature are from the event).
One of our biggest successes has been creating awareness of the disease in the country to ensure timely diagnosis and improving the quality of life of our patients – we do this by sharing knowledge and support to both people with Parkinson’s, their family and carers.
Due to the lack of resources, we have not been able to meet all our objectives for the country. However, we are actively looking at new ways to increase the number of specialised professionals and carers in more rural parts of Pakistan.
A free-for-all membership
Initially, we charged an annual membership fee but owing to insufficient response, we abolished this charge. Anyone can now join our society at no cost and attend our events, seminars and group meetings.
We host regular meetings on the first Thursday of each month and have a variety of speakers who make presentations to raise awareness, increase knowledge and provide support for the Parkinson’s community. We also hold support group meetings in association with the Aga Khan University Hospital (AKUH), Karachi, Pakistan.
In addition, we also host seminars and talks on World Parkinson’s Day and arrange an annual partnership walk at the AKUH in Karachi. The aim of the walk is to encourage individuals to interact with the Parkinson’s community in Pakistan.
Walking canes for people with Parkinson’s
One initiative our society is involved in is the distribution of free walking canes among Parkinson’s patients to prevent falls. The distribution was carried out by the Neurology Department of Jinnah Civil Hospital – who also offer free medical care for poorer patients.
Despite these positives, very little support for treatment is available in Pakistan. Public hospitals are ill-equipped with regards to both their skillsets and infrastructure, which limits the access of quality care for patients in rural areas.
Spreading care in rural areas
We are passionate about supporting rural areas of Pakistan by providing free care and translated publications, however we are sometimes limited by our lack of financial resources and staff.
To support those living in more rural areas we have translated many of our publications into Urdu. We also recently published ‘Parkinson’s Disease: Q&A’, ‘My life My PD booklet of GSK’ and ‘Exercise for the Parkinson’s Patients’ in addition to our periodic newsletter.
There is an acute shortage of qualified and experienced neurologists in Pakistan. The neurologists in the country are mostly concentrated in the urban areas, therefore making it very difficult for people with Parkinson’s symptoms in the rural areas to contact specialists and get timely help.
To combat this problem we aim to assist medical students who are interested in studying neurology. There are more than half a million people in Pakistan with Parkinson’s and they have limited access to qualified neurologists and medication.
They usually end up going to general practitioners or family doctors with limited knowledge of the early symptoms of the disease.
National guidelines for Parkinson’s diagnosis
The Pakistan Society of Neurology, who assist our society, has published the “National Guidelines for Diagnosis and Management of Parkinson’s Disease in Pakistan” to help GPs detect and provide support for Parkinson’s. The principal author of the guideline is Dr Nadir Ali Syed, a leading neurologist in Pakistan who is also the vice chairman of the board of the Pakistan Parkinson’s Society.
The biggest success of the Pakistan Parkinson’s Society has been creating awareness in the country to ensure timely diagnosis and medical care. Our focus has also been to provide support regardless of the individual’s financial situation.
The society would be grateful to receive any support or contributions from any individual or organisation who are able to help us assist the Parkinson’s community in Pakistan.
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