It’s Okay to be Different
DIAGNOSED AT 21
When I was diagnosed with young onset Parkinson’s at the age of 21, I didn’t know what to think. When I thought about Parkinson’s, I thought of a person my grandparents’ age not a senior in college. I was even more surprised because no one in my family had ever had Parkinson’s, so for me to get it so young was unbelievable. It all started one day when I was a senior in high school, sitting in my advanced algebra class, and I started having tremors and feeling like I was going to pass out. I was so scared. I had no idea what was going on. My doctor figured it was low blood sugar and told me to eat more often and the tremors should eventually go away. Four years went by and I was still having the tremors but no one really knew why.
Then on Christmas day 2010 I started getting horrible headaches that would last for five days straight that no medication would get rid of. In July 2011, I was still having the tremors and the killer headaches. I went in for my annual physical and my doctor recommended that I see a neurologist to determine if something was wrong neurologically. By this point my parents were getting quite concerned about me and the symptoms were starting to become more noticeable. I was starting to stutter when I would try talking. I knew what I wanted to say, I just couldn’t get it out. I would also have a vacant look on my face at times. When I would walk I wouldn’t swing my arms or have them at my sides like most people do but rather held them in front of my thighs. A couple weeks later I saw a neurologist in my hometown. He was unable to determine what was causing these symptoms but recommended I get some blood work and a CAT scan done and recommended I see a movement disorders specialist in the same clinic. The test results came back normal. The next week I saw the specialist who had me do some cognitive tests as well as tests that looked at my physical movement. At the end of the appointment he told my dad and me that he was in the process of moving to Philadelphia and that I would need to see another neurologist. He recommended I see a doctor based out of Chicago, which is about two hours from my house. In the meantime he had me have more blood work done as well as an MRI and a EEG.
All of this happened at that same time I was getting ready to start my senior year of college. I was scared to know how my condition would affect my school work and the way my peers viewed me as my symptoms had rapidly progressed over the summer. By this time writing was painful and my stuttering had grown more pronounced. I am lucky that the school I attend was willing to work with me. I was able to have more time to take tests, was able to tape record most of my lectures, and many of my professors allowed me to have extensions on projects. That was the roughest semester I had ever had. I was so tired by the end of the day and missed a lot of school due to doctors appointments, but I finished the semester with a 3.21 GPA. I was diagnosed with young onset Parkinson’s the day before Thanksgiving of 2011.
I am so lucky to have the support system that I have. My family and friends have been absolutely amazing throughout the whole process. They are by my side on the good days and cheering me up on the bad ones. Without them I don’t think I would have handled this situation as positively and as strongly as I have. I recently revealed to my classmates my condition and brought many of them to tears. Many of them have been in classes with me for years and had no idea what was going on. I am glad I did it and would encourage others to do the same. Now that people know, I feel like I can be myself and not feel like I am hiding something any more. I will be graduating college this coming December with a degree in Elementary Education as well as Exceptional Education. I plan on sharing my story with my students to teach them that it’s okay to be different and to embrace it because that’s what makes you unique.
I truly believe that knowledge is power and the more people know about Parkinson’s the more those of us living every day with it will be accepted and seen as normal people who just move a little slower. My message for whoever reads this is to not take anything for granted because your life might change in a split second. I know mine did, but I’m a better person for it.