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.
Dear Ms Vullo,
Dr Uitti and Dr Wharen have reviewed your records and the video from your visit on 3/23/18. Unfortunately, you do not fit our criteria for moving forward with deep brain stimulation surgery.
Dr Wharen has suggested that there are some facilities that offer studies with young onset Parkison's disease patients and utilizing DBS for symptom control. You can look for all research projects throughout the country by going to the website: clinicaltrials.gov.
Please let us know how you are doing with the 2.5 tabs per dose.
All the best.
All the best.
I read this email denial in silence.
I had no reaction.
I have had Parkinson's Disease for 3,365 days that I know of.
I've been alive for 19,582 days.
That's only 17% of my lifetime.
I am finding gratitude in writing that.
My next step....
FIGHT FOR MY LIFE
DON'T GIVE IN
DON'T GIVE UP
PARKIINSONS WILL NOT WIN
There is a reason everything in life happens, in the order it happens. Their "NO" may have saved me from dying the day that surgery may have been planned. Their "NO" may lead me to the right timing of "YES". Their "NO" may have made me work harder to take care of myself and naturally improve my quality of life in the interim. Their "YES" may have stood in the way of something positive I would have missed out on. Maybe its not time to put holes in my head. Maybe a medicine that will stop my progression will be released and that is what I meant to take. My thoughts are not pointing to sadness. They keep pointing to: Something keeps stopping me from having brain surgery. What? It wasn't supposed to happen today. Why?
Footnote: Someone just sent me this link:
From the Journal of Neurology - a Table with Reasons For DBS Surgery Denial https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3065636/table/Tab3/
Hope this posting finds you well. I am logging back in in preparation for my third DBS surgery eval coming up this Friday at Mayo Clinic Jacksonville. As exciting as it is, I have angst at the thought of going off all my meds once again. I've had Early Onset Parkinsons since Jan 2009 and have only gone completely off my meds about 5 times total. Last August it was for 24 hours for my social security disability eval. Previous to that was November 2016 for the second DBS eval at UofMiami which resulted in surgery scheduling but my relocation to central Fla cancelled it.
Here we are again - my third surgery eval off meds. This time they only requested I be off for 8 hours but the increase in the severity of my disease between Nov 2016 to Aug 2017 was striking. We are now 7 months later than that and I have a constant low to medium velocity tremor (that only subsides while in deep sleep) I have become accustom to that I didn't have at either time ON my medications. What is in store for me this time?
In August we discovered that I am paralyzed from my neck down through my toes by near rigor mortis-like dystonia, which I didn't know I had before going off meds. I was in shock last August when the doctor could find no detectable reflexes in either leg. I was unable to walk and thanks to cervical and truncal dystonia found it very difficult to breathe with a firm hold on my diaphragm, neck and throat. I wrote my doctor about my angst. My family and I look at each other with concern and say, "only 2 more times" - the eval and surgery day. I go off my meds courageously each time; this time I don't want to do it. It only takes about 6 hours to be fully engulfed by my PD but it takes 3 days for the meds to restore my ability to walk. Its like Cinderella and the pumpkin. I take my meds every day and like magic, I am ambulatory. I walk and do everything I've always done. Off my meds, the polar opposite. I thank Michael J Fox, researchers and doctors for the advances in PD, including this miraculous surgery that was created to halt my tremors, dystonias and dyskinesias. I have friends that have gone through it and all forget they have PD on most days. I cannot wait for my turn. I will be back to post the results after Friday.
Let's pray they schedule my surgery right away. My life is wonderful, happy, and full these days. I want to continue in full bore to enjoy it with the return of peace and stillness. If you do not have Parkinsons, I want you to take a few minutes to take a deep breath, hold it and listen to the silence. Just enjoy and thank God for your ability to be still. for it is a gift you don't realize you have. I will be there with you very soon.
MAYO UPDATE: Love my new doctor. Sharp, professional, great communicator, two decades of advanced work on PD, with his medical partner holds two patents related to a DBS system, and has 3000+ DBS surgeries under their belt. Their approach is conservative giving them only 4 negative outcomes in over 3000 DBS surgeries with only 1 geriatric death (fabulous odds!) In his opinion, surgery is in my future, but NOT TODAY. He asked if I would allow him to dial in an adjusted meds, eat & sleep routine first, which if done correctly should stall drilling holes in my head for another year. Uhhhh, let me think on that for a nanosecond!!!! Count me in Obi Won. I am happy to celebrate my PD's 9th anniversary in rebounded health and living fully. The move to Mayo is God sent in perfect timing. As I write this, I eye my bike sitting patiently in its stand. I have not been able to ride for a few months now. Tonight its whispering, "I'm ready when you are. Let's go for a ride!!!!!" I dust off my helmut sitting on the handlebars and reply in gratitude..... Amen.
Plans for DBS at University of Miami are cancelled. I am moving to Central Florida so Miami will be a little to far for me to commute for follow ups after surgery at U of M. Turning to Mayo Clinic in Jacksonville to take over. How exciting!! Let's see what they say..... Stay tuned.
Big day tomorrow. Headed to University of Miami for my first appointment on the path to deep brain stimulation surgery. January it will be nine years since my first symptom of Parkinson's. I count my blessings every day. Thanks for hanging in there with me. ❤️
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."