"Uh, maybe we got that wrong!", I can sense my neuro's thoughts as I'm looking to him for an answer. I am in the worse shape I've ever been.
January 14-15, 2020: I'm in-patient at Halifax Hospital, Daytona Beach, Florida. I'm stuck between two diagnoses - Parkinson's Disease and Functional Neurological Disorder - with no definitive answer (as neither has a definite diagnostic test!) being treated by the only movement disorder specialist group in Volusia County. Knuckleheads. A second FND opinion after Shands Gainesville in June 2018, I am down from 18 pills of Carbidopa/Levodopa per day to 6 - 1/3 of the highest dose I've taken. Guess what? I'm titrated too low on my meds to keep all of my critical systems stable. My body swings every day from normal in the mornings after sleep to paralyzed from the waist down every late afternoon. Low blood pressure in the morning (100/56). After meds wear off in afternoon I'm 156/104. My legs swell and I have no center of gravity to stand myself up. I've taken four trips to the ER by ambulance since the last week of November. I'm not taking enough dopamine to run all my systems at the same time.
This morning I write from my bed in Advent Hospital to share great news.
For the first time in years I woke up free of panic and a racing heart. I do not detect pain anywhere on my body and there is no sign of tremor - internal or external. I am completely still. I have not felt this calm in a very long time. It feels odd and exciting at the same time. So with a big smile I jump out of bed and run to show my nurses. I'm standing straight and tall. I am not leaning forward on misshapen toes that have tried to keep me from falling forward for the last year. My hands & feet are not swollen. The nerve pain running under both upper legs is gone.
I have had such good fortune this year and the Universe seems to be expanding again for me. Finally the mystery of my ailment is truly solved. A second opinion this week confirms what Shands Gainesville first advised last summer; that living as an Early Onset Parkinson's patient for the last 11 years will soon be coming to an end. Ends up a misdiagnosis not caught by University of Miami or Mayo Clinic; the doctors at Shands are my heroes. The first scans of my brain since the DATSCAN in 2013 confirms that my brain is completely normal. My neurologist in Daytona ordered a CAT scan, functional MRI and functional EEG then reported the good news. I have PD symptoms from the large amount of Parkinson meds I take. The news is incredible. Its not going to be easy after 18,500 dopamine tablets and 2,790 unnecessary Neupro patches. Thank God I was turned down for DBS surgery 4 times. I could be regretting holes drilled into my head. With the help of Advent Hospital, I hope to be prescription drug free by next year. I cannot wait to get on my bike again and sleep through the night. Two things I miss desperately. Thanks to everyone who has supported me over the decade. Hopefully next time you see me, my tremors will be gone; replaced by a quiet peace, stillness and gratitude. I have a tough road ahead of me but I'm excited at the visions of me going through my day with tremor, falling or dropping everything. I will make it. Never give up and never give in.
We got this,
Wear Your Heart On Your Sleeve
"Lisa Chalker 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."