For those following my Parkinsons, I am getting my wish and being re-evaluated for the DBS surgery. Hope its my day next Friday, June 23rd. I hope to finally get past these tremors. At 8.5 years the velocity and frequency is disruptive at best. A giant pain in my a** is more like it as it reappears 6 times every day. Can't wait for the day they turn the gadget it on and I am finally able to sit still once again. That moment lives in my dreams. Praying for reality.
Videos: Before and after meds Saturday morning.
Wish me luck.
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,
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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."