Allison’s NMO Story – Keep on Keepin’ On

My name is Allison and I am a married, busy mom of three children (17, 12 & 12 years old). My NMO journey started approximately seven years ago, when I was dealing with my husband’sunexpected open heart surgery and the passing of my mother…

My body just wasn’t right; everything was off and out of sorts. I had numbness in my lower legs and feet, and my balance and gait were starting to fail. Assuming it was stress, I ignored it. When I finally took the time to take care of myself I made an appointment with the PCP and the tests started. I can’t even type all of them out – the list is way too long!

My first and second neurologists both landed on a shocking MS diagnosis. Mentally, I was miserable and physically, I was trying to hide it. I was trying to continue a normal life and trying to continue my beloved profession as a caterer and chef. I was slowly losing my ability to safely function in that environment.

I was quietly suffering, losing my happy, cheerful demeanor as my issues continued to progress.  

After another year of tests and treatments, my third neurologist was stumped and at a standstill. Nothing made sense as I wasn’t responding to treatments. I then moved onto yet another neurologist at yet another hospital. After reading my history and files, he immediately suspected NMO. I remember my head spinning when he mentioned the chemotherapy treatments as a preventative measure. I sat in my truck and had a good cry (more than once).

He referred me to a neurological magician, neurologist #5 who is my current neurologist. At my very first visit, this doctor knew exactly what needed to be ordered and that day, I was immediately sent to the lab for extensive NMO testing.

After a few weeks of painful  tests and gallons of blood being drawn, treatments were immediately set in motion. After so much time, wasted the pieces were finally being put together. I finally had a proper diagnosis, a treatment plan and more importantly, an emergency plan.

It was a hard pill to swallow, a super rare disease that doctors knew very little about.

I was very angry at my body, my future, the uncertainty of the situation. I was and still am angry that I can’t ever be fixed. It has taken me a few years to be able to talk about my  disease without bursting into tears. I am still learning to deal with my new normal. I have grasped my new body, abilities, and altered life.  

My biggest issue is my “wobbly wonky” walking. I jokingly say that I walk around like a drunk sailor, but  I am grateful I still can walk. For three years now, the disease progression has successfully been slowed by Rituxan treatments, which I will be receiving for the entirety of my life. My team of doctors say I am stable. Stable is great and I really couldn’t ask for better news.

I take a handful of medicine and vitamins everyday, mainly trying to keep the nerve pain at bay. I stay as active as I physically can, I do yoga, walk my beloved dog, and ride a stationary bike daily. Half of my battle is mental, but staying busy and active helps. I still battle with “why?” but I am learning to move on.

Sadly, I had to hang up my career in the professional kitchens; it simply wasn’t safe for me anymore. I happily keep my family and close friends well fed now.  I love testing out new recipes and I have the time to finish writing my cook book that I started writing  for my kids 17 years ago. A lot of my time is spent outdoors with my crew. I love animals, gardens,  plants, nature and being in the woods. We love to hike around the countryside and my sweet husband finally holds my hand and keeps me on two feet.

My children have become so attentive and they always make sure I have my cane everywhere I go. I purposely left my cane at home for a long time out of anger and embarrassment. I can only hope that this is teaching my children to be empathetic,  resilient, and kind.

Everyone is fighting something out there in the world even if you can’t see it. NMO has taught me to be patient. It took a very long time for the doctors to put my puzzle pieces together, but slowly, piece by piece, and step by step, they are keeping me moving forward.