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.
I am not sure how much you see that I've become so proficient at the Superwoman thing that when difficult days pop up it may be hard for others around me to grasp how incredibly hard I am working - in that moment (and every moment) - to keep it together.
No doubt about it. I muster up every ounce of everything I am to push through. Tamp it down. Crawl up over it. GET UP. SHOW UP. I zig. I zag. My brain goes into overdrive to find the solution to stay on the rails. And then BANG, I get it done. I NEVER GIVE UP. EVER. I had no idea how strong and courageous I could be until Parkinson's Disease.
I may not appear to have PD in person thanks to life giving meds and my inner resolve. The downside to that is getting the help I need when I need it. Please don't forget I have Parkinson's Disease. If you see me struggling please help me. Find encouraging words. Tell me it's going to be okay. Hold my hand. Don't be afraid. Your strength becomes my strength. Hug me until I stop shaking. Say a prayer with me.
Each of you are my guardian angel. You are with me in those moments. My SuperHero support team; my shining lights. No one is luckier than me.
Okay people....We got this....Let's do this......
Today I woke up another year older and a whole lot less shaky!
Today I began my participation in the Phase 3 Safety Trial for APL-130277 and I received a birthday present that blows the imagination. You have to watch this!!!!
P.S.: You have my permission to share this video, especially if you know anyone with PD.
I am waiting to give an update until I am fully on the drug so not to jinx it, but I wanted to share with you the most beautiful support note I received from a personal angel, who without I would not be where I am today, in so many ways.
This angel was at the right place at the exact right moment minding his own business in a grocery store when my mother overheard a conversation he was having with someone about Parkinsons. My brave mom waited for them to finish and then approached him to find out how he knew so much about PD. At that time he worked with the South Palm Beach Chapter of the National Parkinsons Foundation. She could hardly believe it. I still lived in WI at the time and was only just suspecting PD a week ago, then BAM; he appears in Publix. My life hasn't been the same ever since.
Last night, he wrote me (and is so graciously allowing me to share with you):
"Love you and your courage. You too, Lee. We know what one day at a time means. Stay calm and all will work out. Think about all the people who are waiting for the results and their hope for a better life. You are helping over 4 million people, let the meds do what they were meant to do. 15 minutes off all meds? What a great first day. Remember that and you are a rock star as you like to say. History kid, history. Now you know why I love you so much. You define hero."
"Lisa it's much easier to see when you're not in the box. I don't have PD, but I went through it with my dad. I'm in the brain Bank study, and every trial that I can possibly be without Parkinson's. It's always helping all the people that come after us, and my way of thanking my dad for all he's done. What you're doing is helping every other person on this planet that has PD. You said that is only a hundred people in the study, you truly are blazing a path for every other person. You said that you know the meds work in about 15 minutes, that's amazing. Think about how amazing that is, and keep your eyes on the prize. When you're back on your meds and you're having an off think of how much hopefully the meds can help. Always realize that today was day 1. Now we all know what stress does to PD. So even with all the stress, the lack of sleep, and the fear that comes with not knowing, it worked. Absolutely amazing. Keep your eyes on the prize and it should get easier day by day. Anytime you want call me I will always be there for you. I don't know why God placed me in front of your mom but it was for a reason. Keep up the fight kid. I love you."
I LOVE YOU TOO, Stuart Perlin
This picture just popped up on the side bar of my FB page. I immediately thought of all of all my friends and family, my angels, surrounding me. Billions of pictures and this one appears. I am in awe of God's timing.
In gratitude.... I pray
Thank you to the staff at Weebly who helped me recover this blog and my writings, which had gone dormant. When I figured out last week that i might never see that first post I wrote in 2014 which succinctly described the early steps we took at figure out what the problem was; all the way through to the diagnosis - now with Parkinson's brain, 7 years later (since the first outward sympton) - I didn't think I would be able to recapture the moment and the feelings I expressed in 2014 when I was not as advanced as I am now. I was very upset thinking it was gone forever.
But the Weebly crew assured me that they archive and sure enough my writings were rescued. I cannot thank the team enough for their support, kindness, and overall awesomeness!!!!
For those of you who are part of my Support Team, i have a Facebook Group now dedicated to you that my husband can send updates using (more easily than this blog site) whenever he needs to release information. As you may know, I have been fast-tracked for the Deep Brain Stimulation (DBS) surgery, which will most like take place in March. I am very excited just imagining that one I won't be tremoring any longer. I long for the stillness and the peace that most of you enjoy. 2016 is my year and I am taking back my life.
The new Facebook Group is called: "Help Take Back My Life in 2016" (aka Lisa's Super Hero PD Support Group) and is located HERE. Please feel free to join me and my Super Heroes there or you can contact me through the CONTACT page here.
Do you need support?
Find us on Facebook at:
"Help Take Back My Life in 2016" (aka Lisa's Super Hero PD Support Team)
Connect with me online:
"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."