I was diagnosed officially with Parkinson’s disease (PD) this past summer. I knew something was wrong with me for at least four years. I thought maybe since I'm in my 40's, it's normal to feel this fatigue. I taught art and design 13 years. I was happily married, the mother of three sons and worked part-time artwork and graphic design on the side. I lived a very healthy and socially active life.
My fatigued worsened. I noticed I was often off balance, my speech became impaired and my memory was awful. There were times during teaching when my speech would slur, and I would forget everything prepared in my lesson plan. It was embarrassing, but I was thankful to have students that loved me. I developed ulcers in my mouth, so I could only eat broth. My hair was falling out. My blood pressure was uncontrolled. I would wake up in the morning and it was 60/40 and I felt like I would pass out. Then by afternoon, I would get blinding headaches and my blood pressure would skyrocket to 160/105. I was taken medicine to bring my pressure up and then down.
The symptoms started piling up. I kept pushing myself until December 2017. I made it to Christmas break, and I thought resting would help me feel better. I began to realize this wasn't in my head this was real. I spent the entire Christmas break in bed. I knew something was wrong. There were days I didn't even have the strength to shower. I remember one night I crawled out of the shower because I was so weak, I couldn’t stand to turn the shower off. I had to yell for my husband to help me.
So, I started on the path of finding a doctor that would figure out what was wrong with me. No matter what type of physician I saw, they dismissed my symptoms. I was told it was anxiety-induced stress from being a working mother and that I should reduce the stress in my life. I was even told by a neurologist who was the head of the neurology department that if I had Parkinson’s, I would not be able to put my make up on so precisely. If you knew me, applying my black winged eyeliner was like tying my shoes. I was told that I was having a nervous breakdown, had an autoimmune disease, Epstein Barr virus, an infectious disease, sleep apnea, chronic fatigue syndrome and others.
Doctors would look at me and say I was too young for Parkinson’s or that women rarely have it. Everyone said, “Parkinson’s is an old man disease. How could you have that? You look fine." I found out people have a predisposed opinion of what the disease should look like, which is not a young woman in her early 40s who wore makeup.
I began to question myself. I wondered if I was making this up, maybe this is a nervous breakdown. Until one night my tremors got so bad, they wouldn't stop. I couldn't even speak. Finally, my local neurologist put me on carbidopa-levodopa and the tremors ceased.
Truth is several clinical studies have demonstrated that PD is less common in women than in men. It is the second most common neurological-disease next to Alzheimer’s and an estimated 10 million people worldwide have Parkinson’s.
Now here's the shocker, only 4% of both women and men are diagnosed under age 50! So why are women not receiving adequate care and research for the disease?
Researchers at the University of Pennsylvania School of Medicine found that women with Parkinson's appear to face a disadvantage: Women are ingrained with the ability to nature and care. So sometimes we go without care because we are so worried about everyone else. They're also much less likely than men to have caregivers, that's probably because women often outlive their most likely potential caregiver.
The Parkinson’s Foundation started the first issued patient-centered research agenda for women living with PD. This agenda was created to address the research gap found in the care and needs of women with PD. Together, we can address the needs of women with PD. We can win this battle!
Heather has a blog about her life as a wife, mother, daughter and artist living with PD.