Twenty minutes had passed since my neurologist walked out of the exam room. I began concocting wild reasons for his extended absence. Had he forgotten I was there? If so, would it be odd for me to creak open the door, poke my head out and wave? Maybe he’d hear me if I loudly cleared my throat? Was it possible, in frustration, he had finally given up and gone home?
For two years, we had been seeking answers for some unusual symptoms I was having. When the doctor finally returned with a young associate in tow, the look on his face made my heart race and the blood rushed to my face. He took off his mask, revealing an unmistakable look of defeat.
I braced for impact.
“Allie, has anyone in your family ever been diagnosed with Parkinson’s disease?”
There was an instantaneous ringing in my ears and a giant lump formed in my throat. I don’t remember anything else he said and left hoping he was wrong. When I got to my car and looked up the symptoms on my phone, I had almost all of them. I called my husband and burst into tears.
A few weeks and more tests later, we sat together holding hands while a movement disorder neurologist leveled the news that I had Young-Onset Parkinson’s disease—a progressive neuro-degenerative disease that is rare for women in their 40s. In that instant, our lives changed forever.
Have you ever heard the saying, “The days are long, but the years are short”? During the time of glorious chaos when our children were small, it was impossible to imagine a day when our house would ever be quiet. In the two years since our daughter went to college, we have settled into a less intense routine. We know that when our son finishes high school and leaves for college, we’ll be equally excited for him and ready for the empty nest chapter of our lives.
I had grand visions of what that chapter would look like, and I can assure you that none of those plans included Parkinson’s. The dreams I had of carefree days filled with travel were suddenly replaced with the fear of losing my bodily autonomy, and the image of my husband as full-time caregiver. While everyone’s journey with this disease is different, there is currently no cure and no disease-modifying treatment.
“The dreams I had of carefree days filled with travel were suddenly replaced with the fear of losing my bodily autonomy, and the image of my husband as full-time caregiver.”
For me, this crushing blow came in the form of a slow-motion crash. The first time I noticed something was off was the summer of 2018, when a persistent, pulsating vein appeared in my right ankle. I mentioned it to my primary care doctor at my annual exam and she dismissed it as a benign nuisance.
Over the course of the next few years, my big toe started to involuntarily twitch. Eventually I noticed tingling and weakness in my right arm, and no matter how hard I tried to concentrate on typing, I could not get my hand to cooperate. At that point I knew I needed to see someone, but it was the end of 2020 and non-urgent appointments were hard to score because of Covid. So I did my best to adapt and ignore it.
It wasn’t until the summer of 2021, when I accidentally opened the car door into the side of my head and landed in the ER, that I first saw a neurologist. He said an ocular migraine had caused a temporary loss of peripheral vision, but was more concerned with the very noticeable tremor in my right foot. After multiple tests came back clear, he surmised that it was an “essential tremor”—something my mother and grandmother had, which he also described as a benign nuisance. We put a plan in place to keep it from interfering with my daily life.
A little more than a year later, my right arm stopped swinging when I walked, and I could no longer grip things. My tremor had become uncontrollable and now affected my entire right side. That led me to the day in the neurologist’s office where he seemingly abandoned me. In reality, he was quickly organizing a consult with his colleague, a Parkinson’s expert. That appointment, followed by a radioactive brain imaging test called a DaTscan, confirmed his suspicions.
There were some very dark days after that. I allowed myself time to grieve and process the shock and fear that come with an incurable diagnosis. At some point, though, I got tired of feeling sorry for myself and decided that action was my only option. After struggling to find others with the disease who were my age, I created an online community that has helped me connect with thousands of people. I started writing about my journey in a blog, which is cathartic.
Immediately after I was diagnosed, I began fundraising for Parkinson’s research, using skills I had honed during my decades-long career in nonprofit development and event production. The irony that I had spent the previous 10 years as a consultant with several different brain health organizations was not lost on me, but it allowed me to get involved with several Parkinson’s nonprofits quickly and comfortably.
At the beginning of 2023, I was determined to not let Parkinson’s change my life. I refused to reduce my work schedule while also taking on a new role as a patient advocate. I am very proud of what I was able to accomplish in an otherwise difficult year, but it was exhausting. I’ve more recently taken a step back to focus on advocacy full time, which has helped me find purpose in the pain.
Speaking of pain, Parkinson’s provides plenty of it to go with a long list of symptoms beyond the tremor. Luckily, I have a fantastic team of doctors who developed a treatment plan to keep me feeling good. Beyond the medication, I have reduced my daily stress, focused on eating healthier, and I exercise every day because it has been shown to slow disease progression. I joined a Parkinson’s indoor rock climbing group where I met a fellow patient named Erwin who, at 82 years old, puts me to shame with his incredible climbing skills.
I have accepted that, although uninvited, Parkinson’s is now with me for the rest of my life. While this next chapter looks entirely different than expected, I have begun to see Parkinson’s as a gift because it has given me a singular focus of living my days with as much joy as possible. For that, I am grateful.
Allie Signorelli is a nonprofit fundraiser and event producer, writer and patient advocate. She lives in Arlington with her husband, Mike; their children, Ava and Bobby; and their lovable but feisty rescue mutt, Bean. Follow her journey on Instagram @imstillallie or at allisonsignorelli.com