Prerna's story
I woke up at around 8am on 4 September 2020 and noticed my entire body was covered in rashes. It wasn’t painful but it felt very itchy. I used an oil and the rashes were gone in a couple of hours. I went to see my GP later that day and they advised that it was probably allergies. The following couple of days were pretty normal. I woke up on 7 September and when I was getting out of bed, I felt very dizzy. I somehow made my way to the bathroom but almost fell as soon as I reached it. I still had a little energy left in me and got back to my room. Thankfully, my partner decided to work from home that day. I told him that this is happening and he went to get an energy drink and something to eat because we thought it’s probably a weakness. I remember to this day, while he was gone, I couldn’t move, I thought I’ll call him but I couldn’t even grab my cellphone which was just next to me. He came back home and I had a protein bar, hoping that it would somehow magically make everything better. We waited for a little while, but things were not getting better. We finally called an ambulance and around 4pm I was taken to the hospital.
I remember being in the ambulance but have no memory whatsoever of what happened in the next week. It felt like I had slept for about a week, and woke up being completely paralysed. I had lost speech and couldn’t comprehend things as I usually would. In those seven days, I had a CT scan, a brain MRI and a lumbar puncture. The neurologists initially suspected that I had a stroke or a panic attack but it wasn’t any of those. I had my second MRI on 17 September which confirmed that I had Acute Disseminated Encephalomyelitis (ADEM). It was very difficult for me to understand what was happening. The easiest way for the doctors to explain it to me was by saying that I had been in contact with a virus. My body instead of attacking the virus started attacking my immune system which sort of led to complete shutdown and inflammation in my brain.
I was on a heavy dose of steroids when I was first admitted but I didn’t improve much. I have been told by the nurses and my partner that for those seven days, all I would do is scream, cry and sleep, which thankfully I have no memory of. I received two days of intravenous immunoglobulin to which I responded well. I started talking but my speech was still very slurred. I later received six sessions of plasma exchange which thankfully worked in my favour. When I received my first session, I noticed slight movements in my left arm. Things didn’t change in a matter of days. It was a very slow and painful process. By my sixh session, I was able to feed myself with my left hand, pick up a glass of water and make calls to my family. It may not seem like a very big deal to some people, but to someone who gained consciousness after a week to find out they’re paralysed from the neck down, it’s a ray of hope.
We have a distant relative who lives in New Zealand who would often visit me and check with the nurses and let my family know how I was doing. My partner was constantly in touch with them as they don’t live in New Zealand and couldn’t travel due to covid restrictions. They would go to the temple every day to pray for my wellbeing.
I would see a physiotherapist every alternate day and an occupational therapist pretty much every day. We worked on me getting my strength back. I remember the first time I tried to do some arm exercises, I failed miserably. I cried my eyes out. My brain knew that I was supposed to lift my arm, but my body wasn’t listening to it. For the first few weeks, I would wake up my partner at least five times a night. Sometimes it would be to rub my eyes, scratch my nose, or I was thirsty, or sometimes to get a blanket cause I was feeling too cold or to get off the blanket because suddenly I would start feeling hot.
I spent 43 days in the acute ward at Auckland City Hospital before I was finally transferred to Rehab to focus on some physiotherapy. I spent 10 days there. This was one step closer to me being home. I graduated from being wheelchair-bound to using a walking frame. I was getting very homesick by this time and asked to be discharged. I came back home on crutches. I was in the hospital for a total of 53 days. The longest 53 days of my life which I will never forget. I received outpatient rehab for three months where we focused on me being back to my normal life.
My employer has been extremely supportive during this time. They understand my situation and not even once was I concerned about job security. I resumed working part time in December and now I’m back to working full time. I work from home for about three days and the remaining in the office.
I am truly thankful to the doctors and nurses that were there for me and took care of me as my family would have. Anytime I had any improvement, the nurses would be so happy and we would celebrate every little accomplishment. They were extremely patient and calm and encouraged me to do things and always believed in me.
I read somewhere that hope is a passion for what is possible and truly I live by it. My life is slowly getting back to normal. I still walk with a crutch and get tired easily, but I’m getting better at managing my fatigue.
I didn’t take any pictures when I was in the hospital because I hated being there. I never wanted to keep any memory of the things that I had to go through. I feel very differently now. ADEM has given me a new perspective of life. I am truly grateful for so many things in my life. My one piece of advice to someone who’s been diagnosed with ADEM is to be kind to yourself. It is going to take time but there’s light at the end of the tunnel.