How I Became The Shaky Lady
Diagnosed at 22
I noticed the tremor for the first time at seventeen. I remember holding up my right hand and asking my parents if they noticed my hand shake. It was odd, but it quickly went away, and I wouldn't notice it again for at least another year. I was a happy, healthy, fun loving teenager and it would take five years to realize something very serious was silently sneaking up on me.
At nineteen I would begin to seriously pursue finding the cause of what now had become a very noticeable tremor, bouts of losing consciousness, persistent headaches, and a new found general "clumsiness". Months and numerous tests later I would be diagnosed with both epilepsy and chiari malformation. I was unable to find a neurologist that could look past those diseases and see the tremor and motor skills problem for what it was. I was told my shaking was an essential tremor and a glass of wine should diminish the annoying effects. "Some people are just clumsy" one prominent Boston neurologist told me. "I wouldn't worry about it." so I did just that, I would push it out of my mind until my body would scream so loudly I couldn't ignore it.
At twenty one, I felt like the right side of my body was failing me. It was slightly delayed, as if there was some sort of miscommunication between what my brain was asking my body to do, and what my body actually did. I started dropping things, bumping into things, and the tremor was affecting my daily life. My muscles got tight, my right hand started to always be clenched into a fist, and although I wouldn't notice my right arm stopped swinging as I walked. I learned if I pumped my hand several times I could momentarily make the tremor stop. I was holding three quarters one day and I dropped them. Thinking nothing of it I picked them up. I immediately dropped them again, and continued this twice more before giving up and setting them on the table. I looked up to a friend who was watching this incident and by the expression on her face I could tell it was time to go back to a doctor.
After a thorough exam, my doctor looked me in the eye and said "There is something wrong Carolyn, I'm not sure exactly what it is, but I promise you I will get to the bottom of it."I felt relief that he was determined to help, yet fear at the look on his face. We immediately discussed brain tumors, dystonia, mineral deficiencies, and the obscure chance of PD. Within a week tumors and deficiencies were ruled out, and we took a "shot in the dark" trial of levadopa. It was my miracle drug and I almost immediately had relief from majority of my symptoms. My truly saddened neurologist sent me to a PD specialist with the parting words of "I’m so sorry. I truly hope that I've missed something."
Genetic testing would later come back negative for biomarkers suggesting dystonia; and there I had it, Parkinson's disease had roared it's ugly head right in my face.
Devastation does not begin to express what I felt. Self consumed and self absorbed also does not convey just how deeply I was pitying myself. I was young, vibrant and full of dreams for my future, and now that was all gone. My life was over, or so I thought.
After months of wallowing in what I was sure was the most misery anyone had ever endured, I decided to start finding ways to make myself feel better. I started researching different organizations that could offer support, and I looked up information on Michael J. Fox. He became a huge influence in the way I wanted to live my life. He was this amazing, beautiful human being who would not play the victim and was actively doing things to make his life better.
MJF said that it took him seven years to come to terms with his disease. He wasn't instantly positive, he didn't get this diagnosis and immediately feel ok, I found comfort in the fact that even this man who is absolutely incredible struggled at coping. I decided right then I would not give this disease seven years of my life. I would not let Parkinson's rob me of my twenties. I didn't know how, but I was going to be ok.
I immediately looked for a way to reach out to others in the PD community. I found the APDA was hosting a conference a few hours from my home, and with the help of a very supportive family I attended. The conference was by far the scariest, hardest, most eye opening three days of my life. It was also however, beautiful, honest, and inspiring. I made connections with the amazing women who make the organization possible, and felt for the first time since my diagnosis I could talk about my disease without guilt. It was not upsetting to them to see my tremor, they were genuinely interested in hearing how I was doing even if I wasn't able to be happy go lucky.
The experience taught me that being open and honest about my disease would lead me to accepting what life had thrown at me. After I left I became very open and wasn't ashamed to admit that my body isn't well. I surrounded myself with people who saw me as a strong, beautiful, capable woman, not a weak, sick, shaky girl. These amazing people didn't see me any differently and even though I wasn't okay having to ask for help they were okay with giving it. I would drop a glass of water and someone would be right there with a mop, I'd struggle with a key and a lock only to find the door opened with someone on the other side waiting for me arms wide open, my hand would tremor and before I could hide it I would feel it being held. It was never condescending, and I was never pitied. I had never felt so loved.
I eventually became okay with the reality I previously was unable to face. Being surrounded by people who loved and accepted me (even before I could accept myself) helped make me whole again. I found ways to cope, and started a blog at www.theshakylady.com. I used humor, writing, and the love that surrounded me as a crutch, and found my way back to myself.
I didn't wake up one day and "get over" having a life altering disease. I don't love that I have PD, but I also no longer hate it. The amount I have grown, changed, and learned about life over the past two years is something I wouldn't take back even if I could. I have bad days, sometimes really bad days, but I never let myself stay there for too long. I always come back to a positive, thankful place. I think the bad days will come once in a while for the rest of my life, I don't ever expect to completely move past it, but I also know I'm not going to lay down and give up just because it's hard. The good days far outnumber the bad days, and I think that’s all anyone can ask for - shaky or not.