"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.
We saw some excitement with last year's "new diagnosis" of Functional Neurological Disorder by Dr. Deeb at University of Florida Gainesville / Shands Hospital. It seemed to work. I was titrating off of my high doses of medication and the same time I was working full time, plus taking care of my husband and children. There seemed to be a honeymoon period in there when I was coming off the meds that I seemed to be improving. But that was short-lived over about a 4 week period. Then all my symptoms returned with a vengeance.
My tremor as you can see from the video I made for my last posting announcing my ten year anniversary that I am living incapacitated. I believe my health has been made worse by playing around with my dopamine. Don't take it; do take it" - when? It seems logical that once the stores of 17,000 dopamine pills finally cleared my system, my Parkinson's symptoms went off the charts and has never returned to manageable. Add to that whole-body Dystonia that makes every inch of my body ridged. To the point that the combination of the two - rigidity with high velocity tremor - is causing nerve damage in my wrists, hands, fingers, groin, neck, back, and especially my legs and feet. I have no balance any longer. I fall and can no longer catch my fall so land with my full weight on my hands or my face (as I did in the Midway airport this winter when my sneakers were sticky against the newly polished marble floor. I started to fall forward on my tip toes and ultimately could not right myself so down I went - hard. I quickly picked myself up in pain and headed for my gate with other passengers looking like they just saw a train wreck. That's a good definition of my physical being today - its a train wreck that doctors make no effort to alleviate. I'm not quite sure how worse this needs to get?
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."