My journey takes me to Dr. Michael Okun and the #1 Team for DBS Surgery at the University of Florida...... Try until we get it done!
This morning at 10 I go off all my meds for 24 hrs. That means living without the help of around 25 pills, capsules and two patches. I already anticipate being paralyzed from full body dystonia. I just hope it comes quickly. The process is painful until it’s done. Then my muscles seize and the pain is gone. The price I have to pay to be evaluated for brain surgery. My fourth attempt. Denied three times in 3 years. I pray for strength and a cure for Parkinson’s for all of us that journey with it. When I recover from this, a life still lived on two feet will be celebrated with gratitude. I assure you.
My appointment is tomorrow morning at the University of Fla Shands Hospital. Thank you to Jim Newman, his wife and daughter for having the compassion and strength to escort me there and hold my hand through it. Thank you Chad Davie and the team at Abbott Labs for your support and calls that got me in to the #1 team for DBS surgery. Without you my sails would have no lift. Thank you to the crew at Conscious Ink. I will wear your tattoos to remind myself to Breathe and be Grateful for this opportunity to add a couple decades to my life. To my YachtCloser family thanks for your love and support that will give me the resources to accomplish this. No one has a better team of guardian angels than me. You are always with me so I don’t have to go this alone.
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,
I am so fortunate to have an amazing Super Hero Support Team to help me through my Journey. Friends have shown their love through surprise pieces I received in the mail this year. I was just admiring them in my jewelry box and thought I would share them with you. They make me smile and fill my heart.
The sterling silver cuff is engraved with my favorite quote (that is found in the footer of my website). I admire Eleanor Roosevelt; a strong woman at a time when women were not expected to excel. She wrote: "The future belongs to those who BELIEVE in the beauty of their dreams." Yes it does.
The brass cuff carries a quote from "Alice's Adventures in Wonderland" by Lewis Carroll. Perfect for those whose lives have been changed drastically. It reads "I can't go back to yesterday because I was a different person then." This reminds me not to dwell on what "was" when my life was so much easier. The day it arrived it made me cry. It is so true. We can't go back, but the future has so much to look forward to, as well.
The last pieces are GIVING KEYS. You know they are one of my favorite charitable organizations supporting those coming out of homelessness in Los Angeles. My bracelet is emblazoned with "STRENGTH". My necklace is stamped with "HOPE". Hope and Strength - two pillars of my life that are deep in my roots. My mother is my role model. Thanks to her, I muster both of these, get up, go out and conquer every day. Thanks Mom.
What reminds you to stay positive and motivated every day? A special thank you to my girlfriends who sent each to me.
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"Lisa Chalker 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."