After 30+ years working in healthcare communication focused on understanding and helping patients through their journey, I find myself on a journey of my own.
It started last summer. My voice was hoarse, and I noticed that I couldn’t yell to call the dogs in from the backyard. Then I realized that I was getting short of breath on my Peloton rides. A trip to my PCP started a round robin of specialist visits (cardiologist, pulmonologist, ENT) and testing landing with the diagnosis of vocal cord paralysis. Annoying, but not permanent, with resolution anywhere from one month to a year.
In late November I went to my PCP for my annual physical. I shared that my left arm felt weak – I had noticed it when I couldn’t lift the hair dryer above my head. She examined me, and said she was concerned. She ordered a brain MRI and referred me to a neurologist. Brain MRI was clear. The neurologist ordered a cervical and thoracic MRI, which was also clear.
For the holidays, we decided to roll the dice and take our annual trip to Cancun despite COVID to warm up and relax. It was an amazing two weeks. When we returned (after quarantining), I had another test scheduled – an EMG. It evaluates the health condition of muscles and the nerve cells that control them.
That’s when my world caved in. The EMG test was not clear. It was, in fact, along with a detailed physical exam by a top neurologist at Columbia, what led to my diagnosis of ALS. It was and still is surreal. I vacillate between suspended disbelief – how could this be – and tears.
I know I’ve led a charmed life. Born in the summer of '69, I found my soulmate, Bob, when I moved to NYC fresh out of college. We've traveled the world, lived in four cities (NYC, Chicago, Charlotte and Summit), and were blessed with three amazing boys – Scott (21), Luke (18) and Dean (14) – who stole our hearts and made us whole. Our “party of 5” is a tight unit surrounding by loving family, the best of friends, and amazing colleagues from both my and Bob’s careers.
For someone who has always been on the move, the inevitability of functional decline is terrifying. I am working with the team at Columbia to explore clinical trials, and starting the PT, OT, and RT that will try to preserve function longer. While I want to hold out hope for a miracle cure, my pragmatic nature has shifted me into a “do-it-while-you-can” gear knowing time is finite.
And as a wife, a mother, a daughter and a sister, I cannot hold it together when I think about leaving my family. I know all of you will support them when I can no longer do so, and I am so very grateful for that.
I wish I had the emotional reserve – and voice (it is very hard to hear these days) – to have called all of you to tell you all this. I know this is a shock, and I know you are sorry.
You can post a note here or email us (Lisa, lsmauriello@verizon.net; Bob, mauriellos@verizon.net). We’d love to hear from you – especially your favorite memories or funny stories. Bob and I will post any updates here. Thank you for your love, support, thoughts, and prayers.
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