In December 2017, I was a busy mom of three boys and an art teacher hoping to recharge over winter break, when I became overwhelmed with extreme fatigue one morning. I remember having to crawl out of the shower, too weak to stand or reach up to turn off the water from the shower head pelting my back. All I could do was call out for help.
I’d been experiencing a slew of strange symptoms including blinding headaches, intense fatigue, and roller-coaster blood pressure for several years. But this was a new low for me. Kneeling in the shower, unable to lift myself up, I felt helpless. For three weeks, I was too weak to get out of bed.
In the past four years, I’d visited numerous doctors in the hopes of figuring out what was wrong with me. I figured since I was in my early 40s, it was normal for me to feel tired and need a nap from time to time, but my exhaustion had become progressively worse. Then, I started to develop ulcers in my mouth which made it so difficult to eat I could only drink broth, and my hair started thinning out dramatically. I knew none of this was normal.
At first, a primary care doctor brushed off my concerns as “mom fatigue.” In the wake of a contentious divorce, I had a lot on my plate working full-time and raising three boys on my own. But I wasn’t willing to take that as an answer, so the doctor sent me to a neurologist (who said I just had bad migraines) and an infectious disease specialist, who tested me for a plethora of autoimmune disorders. Still, they found nothing.
At that point, I had a running list of symptoms that got longer each day.
My face felt stiff and I slurred my words and blanked out in the middle of sentences. I felt off-balance, rigid, and slow-moving. Sometimes I froze between steps. I could feel my body trembling inside and out. I was extremely fatigued, but I struggled to fall and stay asleep at night. I lost my sense of taste and smell. According to a cardiologist, I also had orthostatic hypotension, a form of low blood pressure that makes you feel dizzy when you stand up and can sometimes indicate deeper health issues.
I’d always been such a happy person, but people around me were starting to notice something was wrong. My employer at the time even told me I’d “lost my sparkle” and had “slowed down too much” at school. Hearing this broke my heart.
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After doing my own research, I feared I may have Parkinson’s disease (PD), a progressive neurodegenerative disorder that affects dopamine-producing neurons in a part of the brain that affects multiple functions, including movement and cognition. I couldn’t fathom how this could be possible when so few young women were diagnosed with Parkinson’s, but I needed to know why I had so little energy I could no longer go on field trips with my youngest son.
So, I scheduled an appointment with another neurologist. The waiting room was filled with older people, mostly men. I thought to myself, Am I in the right place? Inside the exam room, the doctor ran me through some tests, like trying to walk a straight line or keep my balance when lightly pushed back on. I failed all of the tests miserably and sat there and cried. The doctor told me, “Well, the good news is it’s not Parkinson’s. If you had Parkinson’s, you would never be able to put your eyeliner on that well.”
I thought I was hearing things. I was appalled by that comment. He went on to tell me that my symptoms were likely all in my head. According to this doctor, I was probably just stressed out from being a full-time working mother and I needed to see a psychiatrist, get some therapy, and consider working fewer hours. I pushed back on this, telling him that because I was an artist, putting on eyeliner was like tying my shoes—and hadn’t I just failed a series of tests? But he was insistent: I did not have Parkinson’s.
This was one of a few times I felt like I was losing my mind.
Members of my own family had begun to question the validity of my symptoms, too. When you don’t have the support of the people closest to you, of course you begin to question yourself. I fell into a depression.
After I collapsed in the shower, I pushed through one more semester at school. At the end of the school year, my contract was not renewed. I couldn’t help but wonder if this was because I’d “lost my sparkle.” I struggled to fight the hopelessness that so much uncertainty can breed.
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After struggling for four years, I was finally given a diagnosis at the age of 44.
In July 2017, I found myself in yet another doctor’s office to see a third neurologist, this time for migraines. But the doctor didn’t ask me about my headaches. Instead, he asked me to stand up and do a few exercises. Then, he sat down across from me, took a deep breath, and told me he suspected I had young onset Parkinson’s disease (YOPD).
I had been fighting for so long to figure out what was wrong with me that I had a small sense of satisfaction in receiving a diagnosis. But that satisfaction was fleeting and overwhelmed by an impending sense of fear. I knew there was no cure and I knew first-hand what the disease could look like—my father-in-law had Parkinson’s disease. While I explained to my children that the disease affected everyone differently, they were worried I would end up like their Poppy, and I was too. I feared that this disease would take away my two greatest passions: my ability to take care of my kids and make art.
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Most people with Parkinson’s develop symptoms when they’re 50 or older, but 2 to 10 percent of us—like me—begin to experience signs of the disease earlier. Because young onset Parkinson’s disease is so rare, it’s much harder to diagnose and many of us go untreated or misdiagnosed with something else.
While we have the same symptoms of older people with Parkinson’s, like tremors, rigidity, and issues with balance and coordination, we don’t fit the stereotype of an “elderly” disease. We’re also at a greater risk of having side effects like nausea, lightheadedness, and involuntary movements from the medication used to treat Parkinson’s because we’re on it for a longer period of time.
Once the initial shock of my diagnosis wore off, I took a good look at my life and the way I wanted to live it.
In early 2018, I realized that my sons needed a strong mother, and I was not going to let them come home to a mom who had given up on herself. I had to start focusing on the one thing I could control: slowing the progression of my symptoms.
Along with medication, exercise is a huge part of that, so I started taking boxing classes designed for people living with Parkinson’s disease to help improve my balance, agility, and hand-eye coordination. I usually attend class at least three times a week and jog on the beach. I also paint with my youngest son. We cherish this time together, even though much of the paint ends up on our clothes and not the canvas!
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Finally, I’ve let go of mom guilt. Living with Parkinson’s disease, I can’t take the kids to school, take a boxing class, pick up groceries for dinner, see the doctor, go back and pick up the kids, and then take my son to jiu jitsu classes—I’d simply be too wiped out. So, I plan accordingly.
“I realized that my sons needed a strong mother, and I was not going to let them come home to a mom who had given up on herself.”
Instead of trying to be Wonder Woman, I try to get two things done in a day instead of six. If I know I have a big event coming up, I take it easy the day before. My children understand that it’s okay if Mommy needs to take a 30-minute nap. And if I want to go out with my girlfriends, I treat it as a reward for taking care of my mind, body, and soul. Self-care allows me to be a better mother, partner, daughter, niece, and friend.
It also helps that I have a large support system: I’ve found others living with Parkinson’s disease, I attend support groups and see a therapist, and I work with the Parkinson’s Foundation as a social media ambassador and blogger to help others like me. Few people know about young onset Parkinson’s disease, which is why I’m passionate about telling my story so that others know they aren’t alone in this battle.
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Heather Wolynic is an artist, mother, and writer living in Port Orange, Florida. She is passionate about educating others about Parkinson’s disease as an ambassador for the Parkinson’s Foundation, a national organization dedicated to improving the lives of those living with Parkinson’s disease and to advancing research toward a cure.
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