Diagnosed at 35
It was March of 2000 and everything in my life was headed in the right direction. I was happily married with two daughters aged 5 and 2. I was working in Human Resources for a company that was lucrative enough to give me the professional opportunities I'd been looking for. At this time we were also in escrow with the purchase of our first home. Minus the stress, life was pretty good.
I was 27 years old when I saw my left pinky twitch around for the first time. I was sitting at my desk looking at it as if it was its own being. I quickly attributed it to the stress I was under with buying the house. In conjunction with this, I was commuting a long ways to work and raising two young children so it wasn't out of the question for someone in my position to be showing a bit of stress.
Fast-forward two years Even though I had been laid off from my last job due to the slow economy, I was able to secure another position fairly quickly and get back on track. I still had my marriage, my kids, my house, and my job yet over the course of two years the pinky twitch had gradually progressed into a full-on tremor in my left arm. I was also beginning to experience severe bouts of depression and anxiety to the level of panic attacks. People noticed my tremor and often asked if I was cold or nervous. Neither was true and I had no idea why I was feeling the way I was, both mentally and physically. I began seeing doctors ranging from psychiatrists to neurologists. This was the beginning of my long journey to the truth.
Over the next few years, I was diagnosed with a pinched nerve, anxiety, and essential tremors to account for my shaking arm. I was put on a host of different medications to alleviate the problem, none of which worked. All the while, my tremors moved into the right side of my body and my anxiety and depression took center stage. I couldn't figure out why I was so unhappy. It all became too much for our marriage to bear and my husband and I divorced in 2006.
In 2007, after getting accustomed to being a single parent, I decided to pursue a multiple subject teaching credential. By this time, my symptoms had multiplied to include problems with balance that prevented me from getting dressed while standing up, trouble with odd activities such as beating eggs or cutting meat, and having difficulty writing and walking. Also, the tremors had progressed to my legs and neck and all of my muscles were in a constant state of contraction. My body was succumbing to an invisible terrorist and I was beginning to feel hopeless. I was uncomfortable and miserable. People asked questions. The doctors wouldn't listen to me. I was getting worse and saw nothing but hopelessness in the future. Contemplating "what would it be like if I weren't here" became commonplace thinking for me.
Luckily, I was surrounded by friends and family who kept me going. I obtained my teaching credential and began working as a 6th grade teacher. I continued seeing neurologists but also conducted research on my own. I was determined to put a name on whatever was slowly stealing my life from me. I couldn't fight it if I didn't know what I was up against. At one point I suggested to my neurologist that I could have MS or PD. He quickly dispelled my theories, stating that I had "no symptoms" of either of those diseases. After all, he was the Chief of Neurology, and he knew everything and I knew nothing. I had had enough of being disregarded. I was living in this body and as far as I was concerned, I was the expert and SOMEONE was going to listen to me.
I asked for a referral to a movement disorder specialist. He performed all of the motor tests that I had anticipated because I had been diligently doing my homework and knew what to expect when testing for PD. After walking up and down the hallway, writing a sentence and drawing a swirl on a piece of paper, and being poked and prodded a bit, I was handed the diagnosis of Young Onset Parkinson's Disease. At 35 years old and after eight long years of misdiagnoses and useless drug treatments, I finally knew what I was contending with. Although the news was supposed to be shocking, it was surprisingly liberating. I felt that my intuition about what was happening to my body and mind were being validated after so many years of being rejected. I put up my dukes and prepared for the long fight ahead.
As much as I would love to not have Parkinson's Disease, I cannot deny the wonderful people it has brought into my life and the awesome opportunities I have been afforded. As odd as this may sound, Parkinson's has given me great purpose in life. I am participating in an effort to improve the quality of life for so many who suffer with this disease. In the past year, I have been brought onto the Board of Directors of the Parkinson's Network of Mount Diablo (PNMD) in Walnut Creek, CA. The members of the board took me in and not only supported me, but gave me the tools to educate myself and others. I serve as the Young Onset support group leader where I have met both Parkinsonians and their caregivers who continue to inspire me with their experiences and insight, as well as their enduring strength to make the best of their lives and not let PD take over. Their strength is born of the absolute refusal to be weak and I am getting stronger and stronger every single day because of their bravery.
I have since remarried and inherited 3 stepsons. Every day is a blessing and I thank God for all I've been given, the good as well as the bad. After all, if we don't see our way through the tough times, we won't know how to truly appreciate the happy times.
I share my story because like others with PD, it is a valuable asset. Sometimes my inner strength begins to diminish and I just need to hear from others who may be having a tough day like me. It makes me feel better and replenishes the strength within me to keep moving when I am reminded that I am not alone in this. I hope my story does the same for anyone who reads it.
My outlook on life is this; every one of us is faced with personal struggles. The power to overcome these battles comes in many forms such as family, friends, education, faith, and hope. How we choose to utilize the resources available to us will be commensurate with our victory.
This is dedicated to my children who are my constant source of strength and reminders of who I'm really fighting this battle for. I also would like to thank my friends and family (old and new alike) who have been by my side since the beginning of this journey, are now, and who will be until the end.
(For more information on the Parkinson's Network of Mount Diablo, please visit www.pnmd.org)