21st June is World Motor Neurone Disease Day and we bring you a positive story of how palliative care can ease suffering in Bangladesh
Authors: Shafiquejjaman Saikot1, Dr. Mostofa Kamal Chowdhury2
“However difficult life may seem, there is always something you can do and succeed at” – Stephen Hawking
Motor neurone diseases (MNDs) are a group of rare neurodegenerative disorders that selectively affect motor neurons, which control voluntary muscles of the body. It causes weakness getting worse over time. Currently there’s no cure for MND, but there are some treatments to help in improving quality of life. Some people may live with the condition for many years.
One of the patients of ‘Compassionate Narayanganj’ community based palliative care project, Mahmuda Jalal, 67-year-old has been suffering from MND for the last 9 years. Her academic and professional career was quite colorful. After completing her post-graduation successfully, she was involved in the teaching profession for long 35 years. Towards the end of her professional career, she was working as the headmistress of a government school in Narayanganj City Corporation. But unfortunately, she gradually fell ill and resigned from the school.
Since the onset of the disease, she had been slowly losing her physical strength. Initially, she was treated in several hospitals for this condition without any improvement. At one point, she lost the power of all limbs and became bedridden. She’s a little heavier than usual, for this reason, she could not even get out of bed or go anywhere. It was quite difficult to take her to the hospitals. After a while, she was deprived of treatment and medical services. Her suffering was limitless and she was literally counting her last days. At that point, we were informed about her condition by one of her neighbors. The project team visited and enrolled her on 1st April, 2019 and still she is receiving our services.
When we first visited her, she was suffering from various symptoms like breathlessness, dry mouth, itching, loss of appetite, sleeplessness, vertigo, weakness etc. With the support and care of the team, most of the symptoms started to subside over time. The patient cannot speak but can make sounds and use gestures to try to make others understand what she wants to express. She has two sons and one daughter. She lives with the elder son and is taken care of by the elder daughter in law.
Palliative care can significantly contribute to improving the quality of MND patients like her.
The team visits her twice or thrice a week. Since she can’t go out of the home, she is totally dependent on our service and follows the medicines as prescribed by the project doctors. If at any time the team is late or fails to visit her, she inquires and asks whether we have any problems. She is much more aware of herself, likes to do work on time. When she tells us what she needs, we deliver the service to her on time. Physiotherapy keeps her away from developing rigidity and physiotherapist visit is arranged regularly for her. She feels better with passive exercises.
She’s a pious woman and always prays on time. She didn’t give up her prayers even after becoming ill. This is to notify you, she likes to donate. Once she donated some money to our center for our poor and marginalized patients.
The elder son of the patient said, “I am much more worry-free now! How you take care of my mother would have been quite difficult for us. Please don’t leave us. The way you are serving us for my mother, we are eternally grateful to you.”
Compassionate Narayanganj is a partnership between the Department of Palliative Medicine of Bangabandhu Sheikh Mujib Medical University (BSMMU), Dhaka, the Worldwide Hospice Palliative Care Alliance (WHPCA), UK with support from the Narayanganj City Corporation. Start-up funding came from UK Aid Direct.
For last 3 years the team has been providing people who have life-limiting illnesses with a comprehensive package of care, starting with home-based care provided by local Palliative Care Assistants and volunteers. Doctors, nurses and a physiotherapist provide additional care, and the families who need it are also given medicine and food packs.
Authors: Shafiquejjaman Saikot1, Dr. Mostofa Kamal Chowdhury2
- Research Assistant, Compassionate Narayanganj
- Assistant Professor, Department of Palliative Medicine, Centre for Palliative Care, Bangabandhu Sheikh Mujib Medical University, Dhaka
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