MY PARKINSON'S DISEASE JOURNEY
From a Women's Perspective
Women and Parkinsons
I was diagnosed officially with Parkinson’s Disease (PD) one year ago this past summer. I knew something was wrong with me for at least 4 years prior. I thought maybe since I'm in my 40's now that it's normal to feel this fatigue. I had taught art & design 13 years was a wife, mother of three sons, and did 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 off balance a lot, 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 and that didn't matter. I developed ulcers in my mouth so I couldn't eat anything but broth. My hair was falling out and my blood pressure was so 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 even higher at times. I was taken medicine to bring my pressure up and then down.
The symptoms started pilling up. I kept pushing and pushing myself until December of 2017. I made to Christmas break and I thought the rest 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 very wrong. There were days that I didn't even have the strength to shower. I remember one night specifically that I crawled. out of the shower because I was so weak I could stand or 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, and I saw a lot they dismissed it. I was told it was anxiety-induced stress from being a working mother. The doctor told me to try and reduce the stress in my life. I was even told by a neurologist who was the head of the neurology department from a highly recognized clinic in Florida that I wouldn't be able to put my make up on that precise if I had PD. If you knew me, applying my black winged eyeliner was like tying my shoes. I was told that I was having a nervous breakdown. That it was an autoimmune disease, Epstein Barr virus, infectious disease, sleep apnea, chronic fatigue syndrome and more.
The Doctors would look at me and say your way to young. Women rarely get PD and especially at your age. Everyone said “ that's an old man disease. How could you have that? You look fine." I guess people have a predisposed opinion of what the disease should look like. Which obviously in their minds was not a young woman in her early forties that still wore makeup.
All this made me question myself. I thought maybe I am making this up in my head, maybe this is a nervous breakdown. Until one night my tremors got so bad on my right side, they wouldn't stop. I couldn't even speak. Then 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. PD occurs in men 50% more than in women. It is the second most common neurological-disease next to Alzheimer’s and, an estimated 7-10 million people worldwide are plagued with this debilitating disease.
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 disease 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 Parkinsons Disease Foundation started the first issued patient-centered research agenda for women living with PD. This agenda was created to address the gap that's found in research with the care and needs of women with PD. the Foundation created the first national agenda specific to women with PD. This agenda identified research and care practices that better capture the needs of women.
Join me on this journey while I blog about my life as a wife, mother, daughter, and artist diagnosed with PD. Together we can address the needs of women with PD. We can win this battle!