Anita Mody, an active grandmother and housewife wakes up one day with suspicious pain in her legs. A week later, she is unable to walk, move or feel her legs. A rare and progressive nerve disorder called Guillian-Barre Syndrome changes her life with no warning. She struggles with it but hopes to come out of it soon. Here is her account of it with the help of Bhakti, her daughter in law.
Please tell us a bit about your condition.
I have Guillian-Barre Syndrome. I had never heard of it before. It is a rare nerve disorder where your own immune system attacks the nerves.
How did it all start?
In November of 2022, I started getting leg pain from my hip downwards. The pain was on my lower back as well as both legs. I have a history of Osteoporosis which had been diagnosed earlier that same year, so I assumed it was due to that. I have had a few falls in the past and one even led to a back fracture.
A day or so later, when the pain did not subside, my family members decide to inform my Orthopedic doctor who I had been under the care of previously. I was put on painkillers and asked to do an MRI. The MRI of the back was clear and I was sent home. During my last fracture, I could walk around but this time, my legs were giving away. This seemed so different so we were suspicious but could not understand what it is. I was confined to the bed by the following day and pain had intensified. I called my Orthopedic doctor again. By the time, we went to see him, we had assumed it was a hip fracture.
I was admitted to the hospital as now I could not walk at all. An MRI was scheduled to look into the hip area. When the MRI report came, it clearly showed a crack on the L1 lumbar vertebrae. By this time, I was completely paralyzed below my hip. A neurology consult was requested because a fracture should not have caused such paralysis. It had now been nearly a week. As soon as the Neurologist did his assessment, he immediately told me and my family members that he suspected a syndrome called Guillian-Barre. He went on to prescribe specific tests to confirm his diagnosis. This was the weekend, so come Monday morning, the Nerve Conduction Velocity tests was done and results luckily arrived the same evening. It confirmed the suspicion of GBS. Same night, IVIG (immunoglobulin) injections were started, this was to be a 5-day course. I had to spend one more week at the hospital, till it would be complete. On the 6th day, I was assessed again and given the green chit to go home, but I still could not move or feel my legs.
My family members had to arrange for an ambulance and stretcher to take me home. My son and daughter-in-law had consulted a family friend who own a medical equipment business on how to set-up the home for my care. Foldable bed-rest support, wheel chair, bed pan, and day maid were employed for me right away.
At the time of discharge, I had been provided with a bed turning chart from the physiotherapist along with a diet consult. This was to make sure I did not get any bed sores and was eating light meals.
The day maid was a trained lady in the care of the elderly and bed-ridden. And so, my journey with GBS began.
What was your reaction to the diagnosis? How and when did you break it to your family?
There wasn’t much time to understand or react to the diagnosis. Luckily, my husband, son and daughter-in-law are there to manage and care for me. I was very sad though.
Were there any complications from the primary condition?
Being bed-ridden has its own set of complications. I used to be an active house-wife who loved to cook and feed my family extensively. I had even started taking orders for home-made gujarati snacks and meals. I have a good set of friends within my building who would meet in the garden daily, go out for meals etc. I would take my grandson for his coaching classes, go grocery shopping and tend to my husband and home. When all of this came to a stop suddenly and I was put on bed rest, it made passing of every day very boring.
I cried a lot at first and sometime I still do. I cannot understand why, how and when I will be normal again. I feel helpless, like I am not able to contribute to my family and home anymore. It’s very upsetting. Everyone else has their work and life so they cannot sit with me all the time.
During the initial few months, there was sleeplessness. Since I’m sleeping all day, it had become difficult to then sleep at night time.
Using the bathroom at night was just not possible because there was no night maid to carry me to the bathroom. So at night, I had to use a diaper or plastic sheets.
No exercise or movement meant that digestion slowed down causing frequent constipation and gas. This in turn led to lack of appetite.
Pain was also unbearable initially. Often, I would scream at night because of it. I have become angry, irritated and generally frustrated. I still have pain!
What medications are you currently on?
Currently I’m on the following pills:
- Metformin + Vildagliptin for Diabetes
- Amlodopine + Atenolol for high blood pressure
- Supplements for Vitamin C, Vitamin D and Calcium
- Gabapentin & Amitryptaline for Neuropathic pain
- Diclofenac as needed for pain
- Anti-anxiolytic for anxiety/low mood
- Homeopathy pill for calcium
What kind of specialists (including Physio/ Occupational therapist/ Psychiatrist etc.) do you consult and how often?
A Physiotherapist comes 3 times a week to work on my leg and hip movements and does stretching, bending, etc.
Do you have a family history of this condition?
None at all.
What were some of the challenges you faced?
Getting from the bed to the wheelchair was a huge challenge. My daughter-in-law really motivated me to do this because this would dramatically improve my mobility. Till then, I was confined to the bed. With the wheelchair, I could go the bathroom, around the house and down to the building garden. Couple of weeks ago, I even attended a family wedding function for few hours and was able to go out of the building for the first time since my hospital discharge. It was thanks to the help of my family members.
What is your present condition?
As of today, it has been nearly 5 months since my diagnosis, I can do quite a lot more, such as wriggle my toes, sit up in bed on my own, walk to the bathroom with proper support, take a bath on my own once I’m seated on a chair etc. My right leg is slightly better off than my left one which is more limp. Since I love cooking, I often cut vegetables and do prep work, schedule the daily menu for the cook etc. Last few days, I have started going to the mandir area in my living room to do my daily pooja, and also come to the dining table for lunch. Since a month, I have been going down to the garden in my wheelchair with my maid to meet and chat with my building friends.
What are you worried about for the future?
I am not. I look forward to recovering soon and being on my feet again.
