Making Dreams Into Reality
Diagnosed at 15
I understand my Parkinson's is considered Juvenile Parkinsonism* because I was diagnosed when I was a little girl, but now I am a young woman living with it, and I want people (especially women with PD) to know they don't have to be afraid if they want to have a family. In spite of the difficulties and hard moments during my pregnancy, I love being a mom because my son gives me the strength I need to keep fighting against PD.
I was only 12 years old when everything started. I didn't pay attention to those things until one afternoon I was doing my math homework and my hand started to shake. I couldn't write a single number in the paper. That was the first time I felt helpless.
I went to my grandfather's neurologist (he had Parkinson's too). After I had a lot of tests, MRI, brain scans, the doctor diagnosed me with PD. It was very difficult for my family and for me to believe it. We did a lot of research, and we weren't able to find another person of my age who had PD. I was only a little girl. I was really scared, especially when I thought about my grandfather. He spent most of the time in bed, unable to move, talk or eat by himself. I tried to live like a normal girl and do the same things as my friends with the only difference that I had to take pills three times a day. None of my friends knew about my PD because I could hide my symptoms very well.
Time passed and I with it my PD was getting worse . I needed more medication to keep myself "on" and active like the rest of girls of my age. Side effects of the medication suddenly appeared. I couldn't control my dyskinesias. People usually told me that I was hyper-active because I moved a lot. I didn't let PD stop me from making my dreams into a reality. I went to college, and I was one of the first of my class to get an Economist degree. I worked as an Economic Analyst for the Stock Exchange Magazine, and I was very proud of myself because I published more than 20 articles.
I meet the love of my life. I told him about my PD before we started our relationship. I believed I had the right to be happy, to get married, to have babies and have a family. He told me that everything was going to be fine and that he accepts me just the way I am and that he was going to be by my side and love me forever. We got married and we have a healthy son who just turned one year. They are my strength for my daily struggle against Parkinson's.
It is so frustrating when your brain sends the order to your body but it doesn't respond to those orders. At the moment I am taking pills every three hours, and I am "off" every 45 minutes of each dose, or even more. I wake even in the middle of the night to take pills, otherwise I won't be able to move or sleep. It is difficult for me to walk. I freeze, and I have to make a lot of effort to balance my body, otherwise I will fall.
It has been 16 years now, and everyday I wake up I wonder how my day is going to be, if I will have off episodes or maybe not. Today is what we have, and we have to make the most of it.
Learn from yesterday, live for today, hope for tomorrow.
* Juvenile Parkinsonism (diagnosis under the age of 21) is viewed as a distinct disorder, one that is often genetically determined. Juvenile Parkinsonism usually has a different course than young onset Parkinson's disease or typical later-life Parkinson's disease.