Diagnosis: Acute Flaccid Myelitis
Wisconsin, United States
My name is Adam Spoerri. July is Acute Flaccid Myelitis (AFM) Awareness Month, and I am an adult with AFM. 2018 was a beautiful year in my life for many reasons. My wife, Bridget, and I purchased our forever home. We got married surrounded by our closest family and friends on a beautiful Saturday in July. We camped across the Midwest in a minivan and found beauty in the unplanned and unexpected adventure that is a summer road trip. Then, on August 5, 2018, life decided to test our vows when I was hospitalized suddenly with respiratory failure and paralysis just two weeks after our wedding. My initial symptoms, which followed a week-long chest cold that my wife caught from a wedding guest and then passed to me, came on very very quickly. My wife brought me to the emergency room (ER) in the morning because I could not lift my left shoulder and I was struggling to breathe. While in the ER, my neck became wobbly and I couldn’t swallow the pills they gave me.
Within 48 hours, I was paralyzed from the waist up and on a ventilator, heavily sedated. I remember very little from the month I spent in the intensive care unit (ICU), but my wife recalls the ever-changing diagnoses and confusion as test after test came back negative. As soon as she researched myasthenia gravis or Guillain-Barré syndrome, doctors handed her a fact sheet on Transverse Myelitis and Neuromyelitis Optica Spectrum Disorder. Eventually, my neurology team settled on AFM. Reaching that diagnosis was difficult for my team because AFM, which is a similar condition to Polio but with a different virus, is most often seen in children. The virus attacked the gray matter in my spinal cord and left me with complete feeling in my upper body but no movement, except my hands. In fact, my only method of communication in the ICU was shaky writing in notebooks.
I spent over six months in hospitals and inpatient rehabilitation, working with respiratory therapists who helped me wean off of the ventilator and physical and occupational therapists who helped me regain some movement in my neck, core, and right arm. I was mostly bedridden and had lost the ability to talk, so my wife became my voice and my advocate. She put her life and career on hold to live in the hospitals with me; I didn’t spend a single night alone. We spent both of our birthdays, Halloween, Thanksgiving, Christmas, and New Year’s hospitalized.
For my last month away from home, I went to an aggressive inpatient rehabilitation program at Aurora St. Luke’s and was finally discharged on Valentine’s Day 2019. It was surreal to be home, but I still had a lot of recovering to do. Though I was off of the ventilator, I still had a tracheostomy and received all of my meals via G-tube, made more complicated by gastroparesis which slowed my digestion. I required oxygen and humidification through my trach at all times, and breathing was still a struggle due to paralysis in my diaphragm. My arms, back, shoulders, and neck still had varying levels of paralysis, as well. I was very weak from spending so much time in bed and could not do much for myself. I spent countless hours in outpatient speech, physical, and occupational therapies trying to regain movement in my muscles and relearning how to swallow and speak.
Gradually, I improved and gained independence. I eventually had my trach and G-tube removed. My wife and I spent the summer of 2019 traveling again, though our trips now require more planning and accommodations for my health. We do miss the spontaneity of car camping and wondering where the road will take us, but we are so grateful that we have more summers to spend together doing what we love. In August 2019, I underwent a nerve transfer surgery with Dr. Amy Moore to improve function in my left shoulder, right shoulder, and left bicep, and though I do feel stronger in my shoulders, the surgery did not seem to fix my left bicep. Covid-19 has halted my therapies.
I have adjusted well to life after AFM even with some remaining paralysis and weakness. People are always shocked that I handle my diagnosis and disability in such good spirits. Some days it is painful to imagine the life we could have had if a virus had not interrupted our reality. I know there are things I wanted to do in life that will never be possible for me again, at least in the way I imagined. But every day I am incredibly happy to be alive and to have the love and support of those around me. I am grateful for the wife that held my hand through the worst life had to offer us. I couldn’t have asked for a better or more loyal partner. I am grateful for the doctors, nurses, respiratory therapists, physical therapists, occupational therapists, speech therapists, certified nursing assistants, and other hospital staff that helped me heal. I am grateful for the company and support of our family and friends. And I am grateful that I still have a lot of life left to live, and I can’t wait to see what challenge life will give us next. I know whatever it is, Bridget and I will tackle it together like a team.
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