From paralysis to complete recovery, my journey with Guillain-Barre Syndrome

Recently, there has been an uptick in cases of Guillain-Barre Syndrome (GBS) in Pune, some of which have resulted in fatalities.

GBS is a rare condition where the body’s immune system attacks the nerves and can lead to symptoms like weakness, numbness, and in severe cases, paralysis.

A quick Google Search reveals that the causes of GBS can range from surgeries and vaccinations to insect bites. Another interesting and lesser-known cause is consuming uncooked/undercooked poultry, which can also lead to infections that trigger the confition.

Reading about the rise in cases has brought back several (unpleasant) memories. Back in 2007, I experienced GBS myself and lost an entire year of my life.

As a survivor, I am sharing my personal journey of going from complete paralysis to regaining the ability to be back on my feet.

It was New Year’s Eve of 2006, and like all youngsters, I decided to ring in the new year with a grand celebration with my friends. Food and revelry were at the heart of it all, and I gorged on kebabs and rolls from a nearby food court, known for its wide variety of fried and grilled meats. The night ended, and everyone went home after the customary New Year greetings.

The next day, which was a Monday, we were all back in the office. But over the next few days, while sleeping, I noticed that I had trouble turning to the side, and my hands started feeling stiff. I also found it difficult in carrying out everyday tasks. Since Delhi was in the middle of a cold wave, I brushed these symptoms aside and attributed it to the chilly weather and went about my daily life, travelling by public transport. Little did I know this was just the beginning of something much more serious.

The eventful weekend

On Friday, January 13, 2007, the Hindi film Guru had just hit the theatres. A close friend, who had flown in from out of town, insisted I join him for a late-morning show.

After the movie and our usual catch-up, I headed to Greater Noida hoping to meet some clients to justify my long absence from office.

But as luck would have it, none of them were available! So, I went back to the office, and in the evening I headed for a family dinner. Here, the conversations centred around the movie and how it was a blockbuster.

Over the next two days, I began feeling more and more drained, as if all my energy was slipping away. The real shock came on Sunday evening, when I was unable to get up from the sofa without help.

I felt something was wrong, but I decided to wait a day before visiting the hospital. I managed to get through Sunday and went to the hospital on Monday morning.

The next 48 hours were miserable and scary, to say the least. I couldn’t move at all, and a friend who was with me helped me move my arm from one position to another.

A senior doctor suspected I might have Guillain-Barré Syndrome (GBS), but the necessary test could only be done at a centre that was far from the hospital.

The journey from the hospital to the test centre and back was traumatic as I could not move. Later, the MRI results confirmed that I had contracted GBS, and the treatment would be long and challenging.

Following another painful night at my neighbouring hospital, I was shifted to All India Institute of Medical Sciences (AIIMS) the following day, where my recovery process began.

Treatment

At AIIMS, I was prescribed an expensive and very potent Australian drug for five days. I was given five bottles in the first four days and the sixth one on the final day. The doctors were constantly in and out of my room, closely monitoring my condition.

I remember asking my doctor when I would be able to walk and run like before. His response was, “Weeks…say 7-8 months, Mr Narain! You don’t know what has hit you, what have you got into, and what it takes to come out of it!”.

On February 1, 2007, I was discharged from the hospital, with doctors insisting that I go home immediately, and if I stayed for more days, I would be prone to infections.

One incident, I remember clearly, is when I reached home and was sitting on a wheelchair, my neck turned in a funny position and I did not have the strength to (turn) get my neck back up. Someone had to help me put my neck back in an upright position.

Recovery and beyond

For the next 7-8 months, I underwent extensive physiotherapy, extending to three-four times a day. Every muscle in my body had to be worked on—it was like relearning to use my hands and legs. I spent these months in a wheelchair. Although the recovery was slow, I finally got back on my feet in a few months.

The day I started to walk again was no less than a rebirth for me. I remember every detail of that day when my physiotherapist left me to walk on my own, though it feels tough to express it in words.

Epilogue

It’s been over a decade, and I have changed jobs multiple times, worked across many sectors, and travelled extensively. Life is back to normal. My message to every GBS patient and their families is to maintain a positive mindset and continue with regular physiotherapy.

Once you are back on your feet, you must follow a weight training routine (under expert supervision) to regain your strength. Being positive is also very important.

I remember meeting a senior neurologist who said, “You are fortunate to have recovered from GBS, you fought death and came back!!” Similar things were said to my father when I went to hospital for the first time.

Don’t lose heart; medical science has progressed over the last decade, and GBS is curable!

(Nitin Narain is Account Director at ThinkQue Consulting, a boutique PR firm.)