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/
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."