Fatigue Was the First Sign of PD
It began in 2010, in my early 40s, a feeling of fatigue that felt inordinate to activity. My internist tested me for Lyme disease at my request (negative) and assured me a mother of 4 kids would, of course, feel tired at times.
-Beth Hanna
In 2011, our family moved to a new town and I to a more intense fatigue and soreness. A new yoga studio became a measuring stick to my body’s betrayal. 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.
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, three MRIs because maybe mini strokes, a painful nerve conduction and two EMGs because maybe neuromuscular.
Tests by multiple rheumatologists, neurologists, tests by a clinical nutritionist, cardiologists, ophthalmologists, and a functional MD through the subsequent years. Lymphatic massage, acupuncture, multiple therapists and whatever else might help my restless search for peace.
During these years, in an attempt to settle into our new community, I was a working board member on three volunteer boards, culminating in 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 hyperfocus. 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 became too intense because I could only gather energy for perceived crises and squeaky wheels and missed signals of more hidden pain. I found myself apologizing constantly, which led me to withdrawing from my responsibilities. My supportive husband didn’t know the right ways to support me. When he wasn’t traveling for work, he’d occasionally bring a slice of carrot cake home with a hopeful smile.
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 two years, when the job demanded I work more hours, I was back to saying, "no".
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 asked about my tremor. (My tremor? It’s called a tremor?) After an almost four-year break from medical appointments and tests, I decided to try again. I made an appointment with a 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 his effort.
When I returned to his office, however, after conducting yet another neurological assessment, he asked me not once, but twice, if I drank a lot. In my recall of this moment, when I realized he thought my tremors might be due to alcoholism, the room is much bigger than it was; he's much smaller and farther away. After I assured him I was a social drinker, he decided my symptoms could be neuromuscular or mitochondrial. He suggested I 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 me either. I wasn’t a crier, but I found myself crying to my stiff mannered psychiatrist shortly after that. I’d done more research and asked her opinion on whether I should go to the Mayo Clinic or try a more elite neurology group in downtown Chicago? She recommended the latter so I wouldn’t have to pay for a hotel.
Months later, after an anxiety-filled drive downtown and search for parking, a new neuromuscular specialist informed me that after reading my records and speaking with me, she didn’t think I was having neuromuscular issues. In tears again, I asked that she examine me anyway. 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 2020, and the first time I’d ever heard of this neurological specialty.
In January 2021, I walked down a hall in front of a movement disorder specialist, and mere minutes after that, I was diagnosed with Young-Onset Parkinson’s Disease (YOPD). 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. Eleven years of blaming myself.
I was diagnosed over two years ago, and although my family and close friends know of my diagnosis, this is the first time I’ve gone public. Between the pandemic and receiving my diagnosis, I have withdrawn even more, allowing the multiple anxieties I’ve encountered with this disease build up into believing I’m better off alone. I’ve come to understand this unhealthy pull towards isolation is common with chronic illness.
I’d like to rebuild my support system, but I’m still struggling to recognize myself. My lens is unavoidably affected not just by my diagnosis, but from years of uncertainty and suffering. I’ve lost degrees of candidness, animation, humor and trust. I struggle to make decisions and commitments because my cognitive abilities have been affected. Writing was like breathing to me; I now edit for coherency.
I am afraid of inhibiting the growth of my 4 children, now all in their 20s, with any neediness; I worry my dark moods will harm my relationships with each. I feel unreliable after a lifetime of trying to prove my reliability. I’ve taken to concentric imagery to start building a new support system. There’s me in the center, a small number of potential caregiving family members and friends in the surrounding layer.
My Pilates studio has a thin but crucial layer. The next layer is new, but one I’ve come to realize must be in place before I can continue adding additional layers. I need the support of peers with YOPD to foster the strength to continue building this system outward to the level of community I enjoyed before. A fallback layer of relatability securely in place. But YOPD cases are about 15% of total Parkinson’s diagnoses and women with YOPD numbers are about a third.
I’ve been lurking about different websites and social media accounts, searching. I’ve found a few people who I genuinely relate to, but lurkers generally aren’t known for making the best friends. So I began to write, and here I am.
Beth Hanna - I'm 54 years old, have been married to my college sweetheart for 30 years. We have 4 young adult children, Meg-26, Emmie-24, Reid-22 and Kate-20. I "stayed at home" raising the kids and volunteering as we followed my hubby's career path. I'm in the Chicagoland area as a transplanted Southerner, my main activities are Pilates and yard work. I struggle to make decisions these days. I'm a #MeToo, and I think about the probable connection of trauma and chronic illness a lot. My bachelors degree is in Social Work-Child Welfare; I'd planned on applying to Northwestern's Masters in Therapy program a few years ago, but the cognitive decline I've experienced has ended that dream. I try to choose laughter. Empty Nesting hits different with a Parkinson's diagnosis!