Outing Myself with YOPD
Last updated: October 2023
It began in 2010, a feeling of fatigue that felt inordinate to activity. A negative test for Lyme disease and an internist’s assurance that a mother of 4 would, of course, feel tired at times. In 2011, a move to a new town and a more intense physical fatigue. A new yoga studio; my brain knew the poses, but my body shook internally in a way that broke my heart. The wave of depression that hit me at that point was the darkest I’d ever experienced; I couldn’t shake it and started planning my demise while planning my busy days.
Years of testing and procedures
A new psychotherapist and a Prozac prescription helped me stay afloat; buoyed but disconnected. Years of testing and procedures followed. An endometrial ablation because maybe low iron was the culprit. A thyroid ultrasound because maybe thyroid, 3 MRIs because maybe mini strokes, a painful nerve conduction and EMG because maybe neurological.
Tests by multiple rheumatologists, neurologists, tests by a clinical nutritionist, cardiologists, ophthalmologists, and a functional MD through the subsequent years. Lymphatic massage, acupuncture, and more than one spiritual counselor.
Forgetting meetings and disappointing people
During these years, I was a working board member on 3 volunteer boards, culminating into the role of PTO President of our school district. By the end of that term, my body was so offline that the only way I could get any work done was to escape to the library for a few hours to hyper-focus.
But even in the quiet of the library, my vision would start what I could only describe as "shadow duplicating." I’d promised to take the position of president for one of the other boards the following year, but I literally couldn’t think straight. My executive functioning skills plummeted. I was forgetting meetings and disappointing people. Calendar time became a math problem I couldn’t solve.
I stopped preparing meals for my family. They often came home to find me sleeping on the couch instead of greeting them with hugs. My parenting was too intense because I could only gather energy for perceived crises. After a lifetime of yeses, I struggled to explain my nos. I found myself apologizing constantly, which led me to withdrawing from my responsibilities.
Dropping my activities
After dropping all my volunteer work in 2015, things seemed to improve. I stopped doing hard core exercising, like boot camps, which left me weak and shaky and instead focused on Pilates and walking. Less stress equaled less severe symptoms. But, after a lifetime of yeses, I struggled to explain my nos. I found myself apologizing constantly, which led me to withdrawing from many social activities and events I’d previously enjoyed.
In 2017, I was asked to take a part-time job at the local middle school front desk by the principal who’d become a friend. The hours felt manageable, and I wanted to get back in the schools in some capacity. I loved it, but soon my right pinky finger stopped responding to the keyboard, writing was more difficult, and I was struggling with my working memory. For the first time in my life, I had to take notes to remember things and relied heavily on them. After 2 years, when the job demanded I work more hours, I was back to saying, "no".
My doctor could not help
In 2019, my right hand began trembling and I constantly felt unsteady. That summer I hurt my ankle navigating some rocks in Lake Michigan and ended up in an orthopedist’s office. He confirmed that I had badly sprained my ankle and casually asked about my tremor. (My tremor? It’s technically called a tremor?)
After an almost 4-year break from medical appointments and tests, I decided to try again. I made an appointment with the neurologist I’d seen previously. He’d tried valiantly to determine a diagnosis years earlier, and although he hadn’t found any answers for me, I appreciated how hard he tried. When I returned to his office, he conducted a standard neurological assessment, which included having me walk down the hall.
When we sat back in the exam room, he asked me not once, but twice, if I drank a lot of alcohol. In my recall of this moment, realizing he thought I might be an alcoholic, the room is much bigger than it was; he's much smaller and farther away. Years before, he’d suspected my symptoms were neuromuscular or mitochondrial, so he told me to make an appointment with a neuromuscular specialist new to his staff. Months later, after an examination and enduring another EMG, she informed me that she couldn’t help.
Finding a new neurologist
It was my psychiatrist whom I cried to after that. Should I go to the Mayo Clinic or try a more elite neurology group in downtown Chicago? She recommended starting with the latter so I wouldn’t have to pay for a hotel.
Months later, after an anxiety-filled drive downtown and searching for parking, this new neuromuscular specialist claimed that, after reading my records and speaking with me, she didn’t think I was having neuromuscular issues. She decided to physically examine me.
At one point, she held my hands with my arms extended and attempted to make them wave, like a hip-hop dance move. She kept asking me to relax my right arm, and when it became clear I physically couldn’t, she stopped and told me I needed to see one of her movement disorder colleagues. This was the first I’d ever heard of that neurology specialty.
Diagnosed with young-onset Parkinson's disease
After waiting yet another few months, I found myself walking down the hall in front of a movement disorder specialist this time, and minutes after that, I was diagnosed with young-onset Parkinson’s disease.
I’m still capable of simple math, so I’ll calculate it for you. Eleven years after I felt something was off, I finally had an answer. Eleven years on multiple roller coasters of disappointment, perseverance, and desperation. And most damaging of all, 11 years of blaming myself.
I was diagnosed in January 2021, over 2 years ago, and although my family and close friends know of my diagnosis, this is the first time I’ve gone public. This hesitancy is unlike me.
Finding my support system
These past 2 years between the pandemic and receiving my diagnosis, I have withdrawn, allowing the multiple micro-anxieties that I’ve encountered with this disease build up into believing I’m better off alone. Through different Parkinson’s resources, I’ve come to realize this is common but not healthy.
In therapy, I’ve learned the best way to rebuild my support system is concentric. There’s me in the center, a small number of potential caregiving family members and friends in the surrounding circle. The very next circle is new, but one I’ve come to realize must be in place before I can continue adding back more circles. I need the support of peers with young-onset Parkinson’s to foster the strength to continue building this system outward to the level of community I enjoyed before.
I’ve been lurking about different websites and social media accounts, even Zooming in on a few meetings with no luck. I did, however, notice something the participants all have in common ... they'll publicly describe themselves as having Parkinson’s. That resonated with me, as I believe knowledge (and acknowledging) is power. So, by reading this, you’re helping set me free to continue building my circle of support, one circle at a time. Thank you.
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