Just got the call from University of Florida Shand's Hospital in Gainesville. An openiing came up tomorrow. I don't have to wait until May. I hope to get some good news and help managing what I can no longer.
I turn to my favorite quotes:
"The future belongs to those that believe in the beauty of their dreams," - - Eleanor Roosevelt
"Joy comes to us in ordinary moments. We risk missing out when we get too busy chasing down the extraordinary" - - Dr. Brene Brown
“You’re braver than you believe and stronger and smarter than you think.” —Winnie-the-Pooh
"Acceptance doesn't mean resignation; it means understanding it is understanding that something is what it is and that there has got to be a way through it,' - - Michael J. Fox. Amen Michael. Thanks for the reminder.
Will be back tomorrow to report the results of my visit. Please pray for me that it is now time for DBS Surgery. I'm not afraid; not in the least. I am more afraid of staying this way. I won't survive the beating my body is taking from the tremor
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."