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.
Do you need support?
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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."