I am so blessed to be aware of the GIANT light God placed in my heart. It sends a beam out to all of you in megawatts. You are my loves and my light. My blessing cup overflows. Know that I live in gratitude for this precious gift. I take not one single day for granted.
How did you spend today? Mine was a wild Parkinson-focused rollercoaster day. It began in high anxiety as I applied my very last Neupro patch. I prayed. I am well aware that starting tomorrow if I don't apply a new patch, I will not be able to transition from conscious to unconscious. NO SLEEP UNTIL THE NEXT ONE GOES ON. How many days will I be awake? Will anyone in my doctor's office answer the call and finally get it done for me? When will the patches arrive? UCB Cares approved my application for free patches, but were still missing the PRESCRIPTION from my neurologist. Two weeks ago we started this. I had no idea it would come down to the 11th hour. I had to keep myself busy around the house today just to prevent myself from crying. Checking in with UCB then U of M and back. UCB checking in with U of M directly. All day; off the hook. Round and round. I finally get a call at 2pm from UCB: "We received it. Our normal turn around is 5-7 days. Our management team knows of your plight and have instructed us to get them out to you for morning delivery." I burst out crying. Prayers answered! With no time to spare. I fell to my knees. I couldn't believe it. My energy - mental and physical - was spent. I had to lay down.
Fast forward to 5:00pm, another call. Its Dr. Cornelia Luca's office from U of M from the Neurosurgery Dept. I am now at the levels that make me a candidate for the Deep Brain Surgery I requested last year. (Are you kidding me?) I'm scheduled for a full round of testing, evaluation & consultation on February 7th. I learn there is now more than one DBS surgery option and they need to go over all of them with me. I have to be off of all my meds for a full day so I will stay at a nearby hotel and head in at 8:30am. They want to see the full out tremor on both sides of my body. And this time I have an excellent shot at being approved. Was this my primary neuro's bonus for the prescription debacle? I don't care! I will take it.
WOW!!! If you are new to my support team, I have a DBS Support Page you can join at for all information and updates: https://www.facebook.com/groups/TakeBackMyLife2016/. Please join and pray for me. This has been an incredible day for me that again was guided by God's blessings and my guardian angels. I am numb and very, very happy.
With gratitude and love,
Kindly pardon the language unbecoming.....
Yesterday was Sunday, January 15th. The 8th Anniversary of my first doctor visit for a complaint that consisted of "why does it feel like the left side of my body is dying off?" My PCP looked at me and said "Dying off?". I said "YES! Weird, isn't it?" That was January 15, 2009. And that conversation sent us on a very long & expensive 5 year odyssey that landed me in a movement disorder neurologist's office in December 2013 with the proclamation that "Yes, the DATSCAN does show that, in fact, you have EARLY ONSET PARKINSON'S DISEASE" The Michael J Fox kind. Welcome to your new life. Today marks 2,920 days.
How was my anniversary? Well, Sunday was a beautiful day connecting with friends, catching up and making plans. A great distraction for me because, physically, it was a really shitty continuous tremor day. The non-stop, calorie burning, adrenaline rushing, can't sit still, pain in my ass (and legs and curled toes and stiff fingers) that ultimately won't let me go to sleep just to piss me off kind of day. LUCKILY, that experience is NOT my every day. I am one of the fortunate. But here is what I have to say.......Parkinson's - I am not giving up. You like to test my endurance but I take whatever you throw at me every single time. I had no idea how tough my will is until you came along. Tonight I say my prayers with a smile on my face that says, "I WIN". I will never, ever, ever give up. Ever. The less I pay attention to you the better off I am. Tomorrow I will wake up and the new day will begin calm once again. And I will make a positive difference in someone's life.
I'm on a mission. Just try to stop me.
Lisa Vullo. 52 years old. Eight years living with Early Onset Parkinson's Disease in my life and still going strong. Survivor. Warrior. I refuse to give in to it. Instead I radiate LOVE, LIFE, DETERMINATION to live as normally as you do. As a result I appreciate everything in my life. It is all a blessing that is leading to a higher purpose. I sit back and enjoy the ride.
Do you need support?
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"Lisa Vullo is One Face of Early Onset Parkinson's Disease. Come along on her journey from symptoms to diagnosis; through treatments and therapies. There are highs and lows, miracles and heart notes, and the determination to never, ever, ever, ever give up on the power of HOPE."