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.
READ THIS BEFORE VIEWING THE VIDEO PLEASE.
IT IS DIFFICULT TO WATCH
I received word on Friday from the head of the DBS Team, Dr. Luca, that he and the "team" did not feel that I am far enough along in my disease yet to get the DBS surgery. I am currently on 7.5 tablets of dopamine. They want to wait until I have to take 10 per day before they proceed. That could be another year or more. The problem for me is I am sensitive to my meds and going that high brings on side effects worse than the disease -- like terrible insomnia (thats right, its 4am as I am posting this) that is caused by a build up that mimics the drug "speed". Every third or fourth night my brain will not go to sleep and I am awake for typically 36-40 hours straight before I can sleep again. I cant imagine going up on my meds before I can get relief. So yesterday morning I videotaped my disease for the first time ever. If you ask anyone who sees me daily, I typically do not present as a Parkinsons patient because the meds do finally kick in and allow me low levels of continuous tremor so its usually just me that feels it but its not usually abundantly apparent to the onlooker.... unless you see me when I just wake up. I am going to give this link to my doctors and see if they feel the same way afterwards. Warning: this video will be difficult to watch. It is my personal record so I will not allow you to share it or re-post it. Cross your fingers for me that it will sway their decision. Now that you can witness what I dont ordinarily allow anyone to see, you will also understand my writings better. Do not watch it if seeing me tremor will upset you, please. Even my closest friends and family have never seen this. Only my amazing husband has to go through this with me. Please pray for a cure and that the vaccine they are developing works. No one should ever have this happen to them. When given the opportunity, please give generously to the Michael J Fox Foundation for Parkinsons Research. Thanks to MFF, there is hope and a cure in my lifetime.
NOTE: THIS VIDEO IS PASSWORD PROTECTED. TO SEE IT, PLEASE CONTACT ME. THANK YOU.
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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."