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/
Happy New Year and Welcome 2018!! Couldn't resist saying goodbye to 2017 in the LBD I welcomed it. Bye Bye!!
Everyone who follows me knows I am a bright light for upbeat and positive living to deal with my Parkinson's Disease. This morning brought about a REALITY CHECK in this letter to my family (please excuse the expletives for which I have earned and am unapologetic after 8 1/2 years on my PD journey.) I write :
To My Family,
I've just made it through another sleepless night after not being able to stay asleep. Thank you Parkinsons-induced insomnia. I officially hate you.
My problem? A skyrocketing level of stress I cannot shake after the experience of going off my meds TWICE and witnessing my underlying condition. My body hidden by bottles of expensive medication is unable to breath comfortably at my diaphragm, my neck contorts my head to the right and upward pulling my chin diagonally away from my body painfully out of control, all while my muscle twist and turn in agony as I cry out loud then sob with each misfiring nerve in all my limbs; all four stuck straight out from my body like a corpse. I cannot sleep. I cannot walk. I have no reflexes in my legs. Everything hurts. I have Stage 4 Parkinsons under this expensive medication. I am scared shitless and I cannot handle this by myself.
My fears are exacerbated by living alone, which I've never done before. I've officially failed at my attempt. My fears foster a depression that disappears as soon as I am with you. I want to live a happy, full, healthy, active life. I want to jump out of bed in the morning and enjoy a productive day. Those days are gone. Replaced with no motivation to get out of bed or leave my apartment under the weight of constant panic. I feel like the earth is rumbling beneath me. I'm on very shaky ground and trying desperately to hide. Another person's energy is all it takes to light mine up and motivates me to make shit happen. I take my meds on time and completely forget I even have it. It is clearly night and day and there is no doubt about it. Living alone has taken its toll since dad died and I am struggling. I woke up yesterday morning with the highest stress levels I've had since coming back to Florida in 2013. Frankly, I scared the crap out of myself and was sure I was going to be making a trip to the ER for the sheer inability to get my out of control rapid heart beat pounding in my chest under control. I swore it was going to end in a heart attack That's it. I've had it. Now I'm pissed off and I need to take action now. I refuse to live this way.
Asking for help does not come easy or naturally for me. I'm usually the one that gives it. I refuse to continue to pretend I can handle this. I can't. I need to recover from the last 12 months of constant change. I went from Stage 2 to Stage 4 PD in only a handful of months. I need to reverse this and quickly. I refuse to let it get any worse and the first step on my road back is to get out of here.
I waiting for the landlord's answer to vacating my lease early. Mom has offered to take me in to care for me. I gratefully accept her offer.
I am not waiting for PD's answer. Only I can reverse this mental ping pong. I need to get on with living, not dying, and the first step is to rejoin the world by stop feeling sorry for myself. The last 12 months have been challenging to say the least. I promise to admit what I can and cannot do. Do what I can to the best of my ability and quit trying to make everything perfect. That was my old life. I am not okay on my own. I need to eat, sleep, exercise, meditate, take my meds on time, dream, create, laugh, run, ride my bike 10 miles a day, and fucking enjoy life while my meds still work. Like Cinderella I can magically walk and run but don't know how or why. I need to stop thinking and start living before I turn into a giant pumpkin. RECOVERY WILL NEVER HAPPEN LIVING ON MY OWN. I am not wasting another day. This is a 10 round match. PD may have won round 4. Round 5 ends in a knock out. I've had enough of this shit. I need to get over myself. Whatever you do, do not allow me to live on my own. I suck at it. Royally. Come see me and bring a ladder so I can climb out of this mother fucking hole I have made. I've got important shit to do. Losing to Parkinsons is NOT one of them. Not today.
MORAL OF THE STORY: Be careful NOT to tick off a warrior. We fight back dirty!!!
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.
Goofing around one night My girlfriends and I hatched a plan to win the lottery and fly to France. I wrote them this poem prayer in about 15 minutes to help make our dream come true.....
Now I lay me down to sleep,
I pray the lotto numbers will creep,
into my head before I wake,
so off to France with friends I'll take.
Open my eyes, a surprise there will be
A shiny new jet looking back at me.
All fueled up for a flight overseas
Hey girls, you with me?? I hear, "Yes! Yes! Please!"
French champagne and Rosetta Stone
will get us prepared for the great unknown.
We just need Rosetta to teach us to say
"I'll take one in each color!" That will make our day!
Tell me this isn't just a dream
We pine for those bags in blue and in green.
To see them in person would make us scream
"What an amazing plan we hatched as a team"!
The girls of MSA have taste
Thank you Liz and team for giving us this place
To dream big dreams that take us away
From everyday lives where we get a chance to play.
Come on Lotto numbers, I know you are there
I pray you'll appear from out of thin air
This dream is so real for one and for all
You just need to gimme five numbers..... and the PowerBall.
It never hurts to DREAM BIG!!!
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."