In December 2017, I was a busy mother of three children and an art teacher hoping to recharge myself during winter break, when one morning I was overwhelmed with extreme fatigue. I remember I had to get out of the shower, too weak to stand up or reach out to shut off the water from the artichoke hitting my back. All I could do was ask for help.
He had been experiencing a number of strange symptoms, including blinding headaches, intense fatigueand roller coaster blood pressure for many years. But this was a new low point for me. Kneeling in the shower, unable to get up, I felt helpless. For three weeks I was too weak to get out of bed.
In the past four years, I have visited numerous doctors hoping to find out what was wrong with me. I thought that since I was 40, it was normal for me to feel tired and need a nap every now and then, but my exhaustion it had become progressively worse. So I started to develop ulcers in my mouth, which made it so difficult to eat, I could only drink broth, and my hair began to thin dramatically. I knew that none of this was normal.
At first, a primary care physician dismissed my concerns as “mom fatigue. “Following a contentious divorce, I had a lot on my plate working full time and raising three children on my own. But I was unwilling to take that for an answer, so the doctor sent me to a neurologist (who said that I just had problems migraines) and an infectious disease specialist, who examined me for a large number of autoimmune disorders. Still, they found nothing.
At the time, he had a continuous list of symptoms that lengthened each day.
My face felt stiff and I released my words and went blank in the middle of the sentences. I felt out of balance, stiff and slow. Sometimes I freeze between steps. I could feel my body trembling inside and out. I was extremely fatigued, but I struggled to fall 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 problems.
I had always been a very happy person, but the people around me began to notice that something was wrong. My employer at the time even told me that I had “lost my shine” and that I had “braked too much” at school. Hearing this broke my heart.
After doing my own research, I was afraid to 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 understand 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 that I could no longer go hiking with my younger son.
So, I made an appointment with another neurologist. The waiting room was full of older people, mostly men. I thought inside of me, Am I in the right place? Inside the exam room, the doctor did some tests for me, like trying to walk in a straight line or keeping my balance when I pressed lightly. I failed all tests miserably and sat there and cried. The doctor told me: “Well, the good news is that it is not Parkinson’s. If you had Parkinson’s, you would never be able to put your eyeliner in that well. ”
I thought I was hearing things. I was horrified by that comment. He kept telling me that my symptoms were likely all in my head. According to this doctor, she was probably stressed out as a full-time working mother and needed to see a psychiatrist, get some therapy, and consider working fewer hours. I delayed this, telling her that, as an artist, putting on eyeliner was like tying my shoes, and hadn’t she failed a series of tests? But he insisted: he didn’t have Parkinson’s.
This was one of the few times that I felt like I was going crazy.
Members of my own family also began to question the validity of my symptoms. When you don’t have the support of the people closest to you, of course, you start to question yourself. I fell into a depression.
After I collapsed in the shower, I advanced another semester into school. At the end of the school year, my contract was not renewed. I couldn’t help but wonder if this was because I had “lost my shine.” I fought to fight the hopelessness that can create so much uncertainty.
After struggling for four years, I was finally diagnosed at the age of 44.
In July 2017, I ran into another doctor’s office to see a third neurologist, this time for migraines. But the doctor didn’t ask about me Headaches. Instead, she asked me to stand up and do some exercises. Then he sat across from me, took a deep breath, and said he suspected I had Young-onset Parkinson’s disease (YOPD)
I had been struggling for so long to find out what was wrong with me that I had a small sense of satisfaction when 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 be like: my father-in-law had Parkinson’s disease. As I explained to my children that the disease affected everyone differently, they worried that I would end up like their poppy, and so would I. I was afraid that this disease would take away my two great passions: my ability to care for my children and make art.
Most people with Parkinson’s develop symptoms when they’re 50 or older, but 2 to 10 percent of us, like me, started experiencing signs of the disease earlier. Why Young-onset Parkinson’s disease It is so rare, it is much more difficult to diagnose and many of us are not treated or misdiagnosed with something else.
While we have the same symptoms as older people with Parkinson’s, such as tremors, stiffness, and problems with balance and coordination, we do not fit the stereotype of an “elderly” disease. We are also at increased risk for side effects such as nausea, lightheadedness, and involuntary movements of the medication used to treat Parkinson’s because we are on treatment for a longer period of time.
Once the initial shock of my diagnosis was gone, I took a good look at my life and the way I wanted to live it.
In early 2018, I realized that my children needed a strong mother, and I wasn’t going to let them come home to a mother who had given up. I had to start focusing on the only thing I could control: slow down the progression of my symptoms.
Along with medications, exercise is a big 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 classes at least three times a week and jog on the beach. I also paint with my youngest son. We value this time together, even though much of the painting ends up on our clothes and not on the canvas!
Finally, I let go of Mom’s fault. 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 school classes. Jiu Jitsu. d simply be too annihilated. So, I plan accordingly.
Instead of trying to be Wonder Woman, I try to do two things in one day instead of six. If I know a big event is coming, I take it easy the day before. My children understand that it’s okay if Mom 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. Personal care It allows me to be a better mother, partner, daughter, niece and friend.
It also helps that I have a great support system: I have found other people living with Parkinson’s disease, I assist Support groups and see a therapistand I work with him Parkinson’s Foundation as a social media ambassador and blogger to help others like me. Few people know about young-onset Parkinson’s disease, so I am passionate about telling my story so that others know that they are not alone in this battle.
Heather Wolynic is an artist, mother, and writer who lives in Port Orange, Florida. She is passionate about educating others about Parkinson’s disease as an ambassador for Parkinson’s Foundation, a national organization dedicated to improving the lives of those living with Parkinson’s disease and advancing research toward a cure.
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