Authors: Mr. Kailash Ganga, PhD Scholar, PSW, Neuropalliative and Supportive Care, National Institute of Mental Health and Neurosciences, Karnataka, India. Dr. Priya Treesa Thomas, Additional Professor, National Institute of Mental Health and Neurosciences, Karnataka, India.
Our experience in the journey with an 18-year-old boy who was diagnosed with Spinal Muscular Atrophy (SMA) Type II is reflected here, emphasizing how the inclusion of neuropalliative care helped regain comfort, dignity, and psychosocial well-being, not just for him but also for his family.
Referred to our Neuropalliative and Supportive Care (NPSC) team at age 17, this young adult had already experienced a lengthy path of gradual physical deterioration. He had been receiving neurological care for over a decade after receiving a very early diagnosis of SMA Type II. By the time we met him, he was completely dependent on a caregiver for daily living and mobility. Alongside his physical condition, he exhibited signs of severe psychological distress, such as low mood, irritability, sleep disturbances, and statements of helplessness and death wishes. Adding to his difficulties was a major life event: the loss of his father to an unexpected heart attack in 2018 left the family emotionally shaken and economically strained, adding to his difficulties.
His mother, the primary caregiver, had taken on multiple responsibilities, including caring for her younger son and working in the garment sector to sustain the household. She remained steadfast in her dedication to her son’s welfare in spite of the hardship. Initially overwhelmed, she battled sleep issues, appetite loss, and the psychological effects of providing care. The burden was visible and persistent. However, through consistent engagement and empathetic listening, our NPSC team assisted her in processing her feelings and investigating flexible coping mechanisms.
After doing a thorough examination, our multidisciplinary team, including social workers, medical officer, occupational therapist, speech and language pathologist, and nurses, created a long-term support plan. This involved organizing hospital admissions for urgent medical needs, including pneumonia, managing panic episodes with psychiatric input, and assisting with respiratory care through pulmonology referrals. We worked directly with the family to enhance understanding of the illness and trained them in essential daily care practices, including
personal hygiene, dietary management, and the importance of physical activity within his restrictions.
To ensure continuity of care, we mobilized support through institutional resources after realizing the family’s financial difficulties. During the home visit, environmental assessments led to suggestions for changes, including the use of an assistive device—an electronic wheelchair—which greatly enhanced the patient’s comfort and mobility. We also helped ensure access to essential services and benefits by changing current disability documents to UDID cards.
As part of our intervention, we assisted the patient in using his electric wheelchair, which was initially supplied by his former school. Due to damage to the battery and other components, the patient had been unable to participate in social activities and faced significant difficulty in reaching the hospital during emergencies over the past five months. The NPSC team contacted the Easy Move Company regarding the repair. The company received and repaired the vehicle, and it was released and returned to the patient once the necessary payments were made.
Over time, we saw steady progress not only in the patient’s psychosocial well-being but also in his mother’s capacity to handle the responsibilities of caregiving. The team built a relationship of trust and shared resilience through continuous telephonic follow-ups, hospital-based interventions, and home visits.
Most importantly, his quality of life visibly improved as a result of our support. His mother and elder brother have shown their appreciation for the NPSC team’s ongoing support. They noticed a positive change in his emotional state and confidence, especially when he was encouraged and enabled to participate in activities such as delivering a speech during programs. These experiences strengthened his identity outside of the sickness by giving him a sense of recognition and purpose. The family has repeatedly expressed their gratitude for the team’s constant presence and assistance throughout the journey.
This young man has been recognized by other stakeholders for receiving consistent support. This journey reaffirmed for us that palliative care is about being there for families dealing with a chronic neurological condition, not only about controlling symptoms. It is about empowering caregivers, providing company through uncertainty, and maintaining dignity, even in the face of chronic suffering. We are still determined to support this family going forward, doing so with humility, kindness, and hope.
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