Art For A Great Man

Most of you know I have Parkinson’s Disease, and was unexpectedly diagnosed with it over three years ago. I had begun to lose mobility in my right hand, and it became increasingly difficult to write even a simple thank you card. I also noticed that my right arm had stopped swinging, and I was very tired most of the time. I assumed it was carpel tunnel and middle age. I booked an appointment with an orthopedic doctor to look at my right hand, and was confused when he looked very concerned as I happily explained that the slow hand was pain-free. He cut the appointment short and referred me to a local neurologist. A few days later, I heard two dreaded words…… Parkinson’s Disease. I was devastated, heart-broken, and in shock for the first few months.

Unfortunately PD is an incurable degenerative progressive brain disease that takes on a life of its own. I’m now beginning to discover why it’s described this way. The safe harbor of denial is harder to stay in as the realities of this insidious disease appear and grow in intensity. Walking eventually becomes a slow stroll, and running becomes a memory. On many days fatigue makes you feel 100 years old, when in fact you’re only halfway there. At times your limbs seem to belong to someone else, and sometimes you wish they did. 

I have a good song and dance, which can convince most folks that I have this whole PD thing whipped. Thankfully on most days I actually am  quite hopeful and positive…..mainly because of loving support I receive from family and friends. However, truth be told, living with PD is one scary experience, it’s designed for the brave of heart. Knowing there’s something taking over part of your body without your consent is overwhelmingly frightening. The best way describe it is this: “Parkinson’s Disease takes you hostage. You’re not sure if “help” is on the way, or if it ever will arrive. You are at the mercy of an unknown alien, a creature who steals dopamine producing cells from your brain. You aren’t sure how many cells it is going to steal each day, but you do know it will never stop snatching them. Your body reminds you of this every day, as it progressively gets more difficult to do ordinary things. Even the simple task of brushing your teeth becomes difficult and awkward. At first you think it’s your imagination, but you slowly realize the strange feeling is occurring everyday. You wonder how many dopamine producing cells you have now lost. By the time a PD patient is diagnosed with the disease, there are only a mere 20% of these priceless cells left in their brain. You try to ignore the alien, you try to make friends with it, and you even try to compromise with it….truth is, PD is a relentless and unforgiving heartless thief. It does what it will, and it has a strange mysterious mind of its own. There is no way to talk your way out of its grip. It is here to stay…at least for now.”

Millions of people suffer from PD, but the good news is there are also millions of people who are working to find a cure. I was honored when I was recently asked by the Parkinson’s Disease Foundation if I would like to create a piece of artwork for an amazing man who is in the fight of his life, a special man who also has Parkinson’s Disease. This man’s name is Mr. Bob Benjimin, and he is founder and organizer of The Light of Day Foundation. 

I quickly said yes, and began reading everything I could get my hands on about Bob B. His story is amazing, and it inspired me to create my own fundraising foundation called “Pigtails, Pirate Ships, and Parkinson’s” . Bob is a music veteran who organized The Light of Day Foundation in 2000. Since then he has raised close to a million dollars for PD research through an annual concert which was originally held at the Stone Pony in Ashbury Park, New Jersey. This amazing annual event has now been held in seven countries across the world!

I recently received some wonderful photos taken on Bob’s special night, and I thought you would enjoy seeing them. You will  see Bob receive the piece I created for him, titled “Bob’s Town”. If you look closely, you will also be able to see some fun references that were created just for Bob. Here’s a few to look for: 1)  The Boss (Bruce Springteen) is a close friend of Bob’s, and he often plays at the fundraising events…do you see anything that refers to the Boss? 2) Can you see what the tree trunk is named after? 3) The clouds are maps….can you tell what area they are from? 3) Bob is a die-hard hockey fan. See if you can find a hidden layout of a hockey court. 4) Find some very wise trees. 5) How about a joke or two? 6) Can you spy a couple of hockey sticks? The day the long-awaited cure arrives, Bob and my hero (okay my boyfriend if you must know!) Michael J. Fox, have a confirmed date to play a wild game of hockey. Check out the name tags on each stick (might have to zoom image to see)

Please remember to stop by and see all of the amazing artwork at Pigtales, Pirate Ships, & Parkinson’s! We are receiving beautiful new artwork from kids across the nation. All profts made on card and print sales are lovingly donated each month to The Parkinson’s Disease Institute and Clinical Center located in Sunnyvale, CA.

Check out the short video below. It’s a trailer from an upcoming documentary on Bob’s life, called “Just Around the Corner”. …..the photos of the gala event are below the video.


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3 Responses to Art For A Great Man

  1. dede says:

    Cindy ~ I can’t even imagine what you go through everyday with your P.D. It hurts my heart to read what you feel and go through with this disease. I pray for you everynight, and I pray for a cure to be a “GOD-Wink” away. You are so Blessed to have the wonderful support of your Family and your closest friends. You are a beautiful person, inside and out. Don’t ever lose your “light”. May GOD blanket you with all HIS love and comfort and healing.
    Blessings ❤

    • Hi DeDe~ Thank you for your kind message and your prayers. A bumpy road at times, but I’m hanging in there.Going to try riding a bike when we move…lots of flat areas with nearby soft lawns if I need to crash and burn : ) Walking is a bitch these days…no pain, but don’t get very far without stopping a few times to regain momentum. The brain is a tricky thing…mighty complicated. Going back to the Parkinson’s Institute at the end of the month, hoping they have some new tricks up their sleeve. Hope you, Pete, and the boys are healthy and happy! hugs~ Cindy Cindy DeLuz-artist art that makes the heART smile

  2. M~ says:

    You and Bob are two warrior’s in the battle against Parkinson’s….Your words were both moving and poetic Cindy. I am witness to your immense courage and strength and it inspires me to be a better human being….I can not begin to tell you how proud I am of you….You tackle each day with such grace and optimism. We could all learn a lesson from you and how you carry on in such a fight…a fight against a horrific progressive disease…Reading your words and how you described PD really resonated with me…It gives me more insight into what you experience…it helps me to be more aware….I will always be here for you honey….Hold on tight to those who love you and “get it”…Just around the corner…there’s a cure…. XO all my love….

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