For my 10 year Parkinson’s anniversary in 10 days - January 15, 2019 - I taped a video so you can see me in action. I was 44 when this started. I’ll be 55 this year in August. I’ve been alive 19,859 days. I’ve had Parkinson’s 3642 days that we’re aware of. That’s 18.3% of my lifetime. Thank God the majority of my life was tremor free. The trremor has been outward and underlying for half the time and has rebounded now that my dopamine dosage is low. Rest assured I don’t let it stop me. I have two stepchildren 13 and 9 that keep me on my toes. No one treats me special in my family. I’ve gotten used to being in public with it. I make an excellent party guest if you’re looking for shaken martinis or scrambled eggs or cake batter mixed. I got those covered. Here’s to figuring out what the heck is going on and fixing it before I shake my hand off. 😊👍
Great news to share!!! My doctor at University of Florida Shands Hospital Movement Disorder and Neurorestoration Center is titrating me down from 18 dopamine pills a day to 1 tab 3x per day. I was taking 3 tabs 6x day. I'm down to 2 per dose but only needed 3 doses yesterday so down from 18 pills to 6-8 per day.
RESULTS SO FAR: My internal tremor is GONE. Overall my stability is instantly noticeable. No shaking when I walk or stand. Physically and mentally stable. I am aware of everything again. My thoughts are clear so I'm flooding with all the things I need to do or haven't done in a while, like communicating with people. I didn't realize how much 18 tabs suppressed my fluid thought process. Instead of making me tired, dopamine sped everything up every day making me race through every action and did not allow me to go to sleep or stay asleep.
Yesterday I sat down & sat still (YES) and wrote a to-do list in perfect penmanship. Washed my own car. Did a complete grocery shopping trip. Here is the ultimate - - - I took 2 two hour naps and last night slept through the night for 8 hours. SLEEP!!!!! WELCOME BACK!!!!! I have not slept through the night in about 2 years. This morning I woke up refreshed with no tremors. Up until 6/20/18 I lived 3,443 days that ended as Stage 4 Early Onset PD and was being evaluated for DBS. Instead I got the shock of my life when I was advised, "In my opinion you do not have have PD. I believe you have FND (Functional Neurological Disorder)". Stunned silence. A bombshell out of left field. I was expecting a date for my surgery. Instead I thought I just heard what you have is treatable & curable. I burst out crying. And now that I've done the research, I am positive this doctor is spot on target.
Watch this and be amazed as I improve and return to my former self. Here are two websites to investigate then check with your doctor about the possibility that you might have FUNCTIONAL NEUROLOGICAL DISORDER which presents identically to PD. The difference PD lives in the motor region in your brain. Find more information at these two websites:
Titrating off high levels of dopamine and reacting extraordinarily well is the first sign we may be on the right track.
God bless you with good health..............
For those following my Parkinsons, I am getting my wish and being re-evaluated for the DBS surgery. Hope its my day next Friday, June 23rd. I hope to finally get past these tremors. At 8.5 years the velocity and frequency is disruptive at best. A giant pain in my a** is more like it as it reappears 6 times every day. Can't wait for the day they turn the gadget it on and I am finally able to sit still once again. That moment lives in my dreams. Praying for reality.
Videos: Before and after meds Saturday morning.
Wish me luck.
Today I woke up another year older and a whole lot less shaky!
Today I began my participation in the Phase 3 Safety Trial for APL-130277 and I received a birthday present that blows the imagination. You have to watch this!!!!
P.S.: You have my permission to share this video, especially if you know anyone with PD.
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"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."