‘Paralysis spread on to my face, I lost control over my facial muscles’

Name: Manjula Prasad (54)
Condition: Diagnosed with Guillain-Barré Syndrome
Status: Recovered after almost one year

Spoken English teacher Manjula Prasad, 54, collapsed at her house in Bengaluru in July 2020. Taken to hospital, she was under the impression she had dengue fever. But within a few hours Prasad found she was unable to move her legs and had to be confined to the hospital bed. She had no inkling that it would take almost a year for her to get back to normal life.

I was down with fever and body ache. My daughter had just recovered from dengue and the doctor thought I too had it. He prescribed some antibiotics and asked me to take rest. But later that night I started getting a tingling sensation in both legs. Since I was exhausted and on antibiotics, I ignored it and soon fell asleep.

When I woke up the next day, I found I could neither lift nor move my legs. It was as if I was paralysed below the hips. I tried to get up by myself but ended up falling off the bed since my legs were feeling extremely heavy and I had almost lost full motor control of my legs. I called out for help. My husband and daughter took me to the hospital.

Since all this happened during the pandemic, I was initially quarantined at the hospital and moved to the ICU only after my Covid test. The doctors ordered for an MRI, and after the scan the neurologist told me that I had Guillain-Barré Syndrome (GBS).

Neither my family nor me had any clue about GBS. The doctors showed us photos of this condition and explained it to me.

My state continued to worsen, and I lost complete sensation in my body. The doctors decided to start plasma exchange to save me. It was an extremely painful procedure. It felt like someone was injecting fire into my veins when they conducted the process for the first time. I could feel that my whole body was burning, and I passed out because of the pain.

I think I was unconscious for about a week. When I opened my eyes, the hospital staff informed me that they conducted two more plasma exchange sessions when I was unconscious.

My family was overjoyed to know that I had responded positively to the treatment procedure. The doctors told me there would be three more cycles of plasma exchange with a gap of two days each. It was horrific and I still couldn’t move my body or my fingers.

Each plasma exchange cycle lasted for about 40 minutes. It was extremely painful, and I lay helplessly on the bed watching them prepping to conduct the procedure. I could sense hot tears flowing down my cheeks, but I did not have the strength to lift my hands and wipe my tears off. Since I was in the ICU, my family was not allowed inside, and I was all by myself except for the ICU staff.

I used to feel extremely lonely and started praying to God to take my life and end my sufferings. I did not want to bear the pain any more — and I even requested my doctor to put me out of my misery by ending my life. He shouted at me in reply and told me that he along with his team were struggling to save my life all this while.

I was relieved when he reassured me that I had overcome the disease and was on the brink of recovery. He gave me loads of hope and strength to live.

The paralysis had spread on to my face and I had lost control over my facial muscles. As a result, my face looks drooped — this condition is called Bell’s palsy (temporary weakness or paralysis of the facial muscles.). Initially my family did not inform me about this, and I had no clue that my facial appearance had changed. Even my mother did not tell me or give any hint when I used to speak with her on videocall.

After completing one whole month in the ICU and six cycles of plasma exchange, I was shifted to a general ward and got to see my family again. I slowly started to speak but my speech was slurred and my tongue was inflamed. My family did not tell me that my face was disfigured. Later, my mother told me about it over a video call. I was very disappointed and kept questioning my existence and if my travails would ever end.

After 20 days, I was shifted to a physiotherapy centre where I stayed for three months. With regular monitoring, I slowly started to move my legs, but I still needed someone’s support to get up from the seating position.

I didn’t want to depend on others and knew I had to recover soon. But I needed some help since I was yet to regain sensation in my legs — I could not feel anything for the next six months.

I was happy to be back home with my family and my pet dog, Scooby, who has never left my side since then.

I was in a wheelchair for the next three months. But I kept pushing myself every day during the physiotherapy. I even fell down a couple of times while I was alone, but I managed to get back up by myself. After 10 months, I slowly started to walk with no support. And it took a full year to get back to my normal life.

Now I can ride my two-wheeler, drive the car and do all the activities I used to do before.

As told to Pragna L Krupa