Editor’s note: Stories by our members chronicle how we are affected by Parkinson’s disease. Our intent is not to prescribe medical advice about the diagnosis, treatment or other medical aspects of PD but to provide information, news, support and encouragement for women living with this condition. Thanks to Cindy DeLuz for her story. She has written articles for us about Parkinson’s in 2014!–DB
On the Crooked Road With Cindy DeLuz
My name is Cindy DeLuz and I’m currently traveling a crooked road with an incurable brain disease as my unwanted sidekick.
It was spring of 2007 when a stern looking gentleman in a white coat said to me, “I’m almost positive you have Parkinson’s disease.” It was at that moment I felt my soul leave my body as I floated to a corner of the sterile room. I suppose it was shock that forced me to leave my flesh; it was all quite surreal and dreamlike. I had convinced myself that my small handwriting, stiff right arm, and disobedient pinky were all a result of carpel tunnel syndrome. I was wrong.
When I landed back into my carcass, I was surprised how angry I felt. Between the waves of fear and shock, I was downright pissed off. I was convinced this doctor was the last in his class, had somehow tricked the medical board, and should be banned from sporting that crisp white coat. I became rather indignant, and said I needed a second opinion. He obliged, and gave me a referral to the brilliant folks at The Parkinson’s Institute in Sunnyvale, CA.
Come to find out Dr. Ding Dong was correct, and I suddenly found myself reliving a Pysch 101 course as I began to experience Kubler Ross’ five stages of grief. Little did I know I would have to revisit those dreaded stages periodically throughout these past 8 years. Back then PD was 90% of my pie; I struggled for quite some time to find peace with it. Luckily, it’s now only a small piece of my pie. I refuse to let this insidious disease define who I am.
Like most patients, I was initially put on a regime of dopamine agonists, Mirapex to be exact. Like many fellow travelers, soon after taking the drug I found an unexpected surge of artistic energy spring forth with the force of Old Faithful, Like any passionate love affair, I found my new relationship with paint to be both uplifting and exciting. Unfortunately, the drugs eventually created obsessiveness and I eventually became more interested in painting than sleeping. I found gummy worms to be the greatest invention known to mankind, and sugar became my food of choice. I lived on 25 hours of sleep a week while munching my way through the waking hours. My doc continually failed my sleep hygiene habits, while giving me A’s on artwork.
I hung in there for 3 years on the dopamine agonist until I eventually switched over to the gold standard drug known as Sinemet. I’m still taking this medication along with Azilect and Lexapro. I was doing fairly well until a year ago when I suddenly got hammered with apathy, depression, and fatigue. Seems the non-motor issues are more of a challenge for me than motor ones. I very recently received insurance approval to be seen at UC Davis, where I’m hoping I’ll get more definitive and insightful care.
Parkinson’s is definitely a huge pain in my slow moving derriere, however I’d be lying if I denied the gifts that have come along with it. Having a thief reside in your noggin forces you to either step up to the plate, or sit on the bench. I was never much of a spectator. When a ton of bricks unexpectedly topples on your head, you wake up,big time. My weary basal ganglia has taught me the meaning of grit, grace, empathy, and faith. Some folks spend a lifetime never valuing much of anything because they’re sleepwalking through life. Parkinson’s Disease woke me up and continually reminds me what I have to live for.
About Parkinson’s Women Support: The mission of Parkinson’s Women Support is to offer moral support, encouragement and camaraderie for women who are Parkinson’s Disease patients. Check out our Facebook page: https://www.facebook.com/parkinsonswomen