“Parkie” is an empowering and endearing term used by a Person with Parkinson’s (PWP). Not all PWPs embrace it. Some think it corny to call themselves a Parkie. Some are all in. “Parkie? Yep that’s me!” I have yet to embrace the term as I still feel I am in a vicious battle between the substantia nigra cells and dopamine in my brain or lack thereof. I’m still holding out that my “cardinal” symptoms are simply a figment of mine or my neurologist’s imagination. I feel that by embracing the term Parkie I am giving up on the tiny hope that I actually have some other bizarre issue which can easily be cured with therapy or a miracle pill. Where is Miracle Max when you need him? I’d gladly ingest a dark, goo covered seed any day!
Unfortunately, my goo covered seeds are tiny white pills taken to synthesize the production of dopamine in my brain. Apparently dopamine is important. Apparently my stupid cells are attempting to stop its production. Within 30 minutes of taking this little white pill for the first time my tremor was gone. So why the apprehension in embracing such a ridiculous title you ask? First, sarcastically speaking, who in the hell wants Parkinson’s (PD)?
1 year ago turning on the kitchen faucet changed my life. Turning on the kitchen faucet triggered the start of my uphill battle. Within seconds of turning that damned faucet on my right pointer finger began to twitch. I called my husband over and we both laughed at this strange unceasing tremor. A couple weeks later I was in to see my OBGYN. Why a gynecologist? Why not? I loved her and since I didn’t have a GP I started there. I was quickly moved on to a nurse practitioner, then to a MD, and finally made my way to a neurologist. Weeks of blood and physical tests and a MRI concluded nothing. I was then injected with a radioactive solution and was given a DatScan. The DatScan, though commonly misread and generally inconclusive is the closest thing to a Parkinson’s confirmation there is. When mine came back “normal,” my nuero was stumped. He softly diagnosed me with the more common, more familiar Essential Tremor (ET) characterized by an active tremor, and I was placed on blood pressure medication. By now it had been three months since my initial tremor began. In three months my tremor was worse, pain began creeping into my hands making it almost unbearable to pet my dogs, bouts of complete and utter fatigue took over, stiffness was getting worse and I was frozen in time. I felt as though I could not move forward. My neuro could see that I did not in fact have ET. He decided to give me a medication test. Putting one on the main class of drugs to treat PD, carbidopa-levodopa or commonly known as L-dopa (as first witnessed as helping PWP’s in the book and movie Awakenings), is the final test and most controversial due to an array of negative drug side effects. In most cases if it works you have Parkinson’s. In my case L-dopa worked. I had Parkinson’s.
Being diagnosed with Parkinson’s a progressive neuro-degenerative disease is a hard pill to swallow by itself. Most who are diagnosed are over the age of 60, putting my diagnosis in the more rare Young Onset population which consists of roughly 5-10% of Parkies. My thoughts consisted of “Oh no…not me! I am a stay-at-home mom of three children who need me. I workout. I have a solid marriage. I’m active. Will my children get it? Will I die from it? Will my husband be pushing me around in a wheelchair in 10 years? Will people notice? Will I get dementia? What about…What if…This can’t be…Not ME!! Well one soon comes to realize this way of thinking is less than productive. I decided I would read and re-read everything about PD. I would stop my slow progression by killing it with knowledge. This avenue only works for so long until you realize you’re obsessing over a disease you can’t predict. Parkinson’s is considered to be the “snow flake” disease. No one Parkie is like another. This mere fact makes research and finding a cure more than difficult. It can take ones mind into the darkest corners, and leave you in a constant swirl of questioning…why me?
Well why not me?! Every person has a struggle. Every person is on a course all their own. Every person has a life to live for better or for worse. Nothing in my story makes me too special to develop a disease. After all we all live in a world filled with toxins, traumas, poor diet, laziness, and questionable genetics. We are all in a position to develop disease. So instead of questioning the why and putting the moniker “Parkie” at arms length I am going to embrace it. Parkinson’s isn’t going anywhere soon so what am I going to do about it?
Parkinson’s is a daily battle. There hasn’t been a single day since my tremor began where I have forgotten that I have PD. Though I am not going to let a disease define me, I am going to let it change me for the better. I am going to let it take me where I never thought possible. I am going to let it make me into the person I always wanted to be…someone who fights like hell to live life to its fullest.