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 Parkinsons 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.
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 - ridigity 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?
I tried to get an emergency appointment with Shands to be told the May follow up appointment is the soonest they have. In the meantime every morning I wake up I need crutches to walk to the bathroom. My Achilles' heels are not flexible first morning without dopamine, so until my meds kick in I rely upon my arm strength to carry me through. I struggle with crutches as I try to use hands that have no grip and even less power to open anything (a medicine bottle cap, a door knob, a sliding glass door, a box or bag of something, the refrigerator door because I slowly have to break the suction first). I call it being in a state of "powering down". Without dopamine, I cannot on my own uncross my legs, rise straight up off the floor, turn myself around without willing myself to start momentum from nothing (and hope I don't throw myself into a wall in the process). Shoes on the floor trip me up. Walking on the carpet after tile is too big of a step up. It takes me an hour to make a bed. When I used to tremor, I used to hide it by sitting or laying on my Shaking extremity. Now when I do that my entire weight is on a nerve point and my arm or my leg falls asleep and I'm in extreme pain. My muscles are not holding me up any longer. The only other option is to allow it to violently shake which causes nerve damage. It's a no-win situation. I walk like an 80 year old. I still look 40.
I never predicted that the result of all of this imbalance would be that my right foot now takes the full weight of my body everyday to stand up and stay standing. I stand leaning forward. And I cannot stand barefooted; I must always have shoes on for stability. I walk leaning forward to move forward. My legs feel like my nerves are on fire and the ligaments are holding on for dear life. What I didn't see coming was a slow change in the anatomy of my toes. They are now hammertoes that also lay flat to the side toward my big toe and the pads of my feet under my toes are now hard and swollen because I only walk on the ball of that foot. I went from a size 5 1/2 shoe to 7 because my foot has flattened out. When you compare my toes it is striking. I used to have pretty feet, My right foot has deformed over time.
As hard as that is to read that's not my worst problem. My biggest concern is my cervical dystonia which is most likely going to take me out. The muscles in my neck when dystonia kicks in turn my head to the right and up toward the sky with a strong, uncontrollable force.. Its attempting to turn my head around like an owl.Then try to turn my head around like an owl which I predict will snap my neck if I don't have the strength in my hands to hold on tight to each side of my face in order to force it back against its will. It is extremely painful in the meantime. I can't swallow anything when it's happening because it Closes off my esophagus. I do this until the medicine kicks in. 20 mins to 1 hour. And try not to cry.
The FND diagnosis I received last year basically says I'm causing this to happen to myself. Really? I've better things to do with my time and the rest of my life then suffer every day. There is a surgical option that will fix this but I have been denied four times now. Its routinely given to people with less Symptom severity. I don't understand why I am being made to suffer. It has been 10 years now of fighting this. I did not think that I would get too tired to fight but I never anticipated a symptom of "completely powering down." I cannot will myself to retain the power needed to breathe, move my arms, sit up straight, get up off the floor, move inches from where i am seated on the bed to get off of it, I try not to sit anywhere that I can't grab something with my hand to pull me horizontally or vertically. Powering down is similar to being paralyzed. i go throught it everyday. On the upside, my medicine actually does still work for about an hour and a half at a time and I do return to myself. It's a weird feeling. My body starts to wake up. The nerve endings start to relax and my muscles I can feel start to contract (I cannot contract my muscles when I'm powered down so my midsection gets distended, as an example).its almost a feeling of someone filling my tank with gasoline, I can actually feel the flood of Returning to normal as it starts from my feet and heads north. It's a tingly sensation but in a good way. As soon as I start to feel like in my feet I know that I'm coming back. And then when I'm back I try to do as much as I possibly can as a normal person before I return like Cinderella and the pumpkin to my paralyzed state. I find it fascinating that I can be paralyzed and normal in the same day. I walk a bridge of being alive and losing it all and back again on a continuous loop. Is this what my life has in store for me? I still fight it with every ounce of my energy reserves. I just hope they give me the surgery in time to recover from it, My deepest fear is they are going to wait too long. They will tell me I'm beyond that line in the sand when they can do it and they can't because I'm too far along.I do not wish to be incapacitated. I have so much to do. So much to look forward to. I am most certainly not done yet. I will not allow them to continue to deny me. This is war. I am fighting for my life. I intend to win my freedom back. Stay tuned. I need to right an injustice. Or die trying. That is not happening today!!!!!!!!!!!!!!
PS: I used the dictation feature on my Mac to write this. I cannot longer type on a computer when I am powered down. I can no longer will my hands to stop shaking long enough. I wouldn't wish this on my worst enemy. Its true: "You really don't know how strong you are until you have no choice." I may be incapacitated, but I am also superhuman when pissed off. I wll not give up.
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 report!! Since being told I actually do not have Parkinson's Disease but that it is rather Functional Neurological Disorder I have been titrating my dopamine down from 18 tablets per day (3 tabs x 6 times per day) to 1 tax x 3 times per day to then get off the Neupro and Amantadine, if possible. I AM DOWN TO 4.5 TABS PER DAY (1.5 tabs x 3 times per day) AND FEELING AMAZING. I am back on my bike and have drop a good deal of the nastiest symptoms of being on that extreme dosing level, Got me thinking tonight.....Just how many tablets of Sinemet have I taken unnecessarily?
I found my first neurologist's records online purely by accident. They share the same patient record online vendor that my new CBT therapist does. What a surprise to learn the exact dates of the progression since he was the first neurologist I was finally referred to after my first symptom appeared in January 2009. My first visit date was December 8, 2011. Almost 3 years after my first symptom.
My first prescription for Sinimet was given to me on May 8, 2012 for 1/2 tablet x 3 times a day before meals, then titrate up to 1 tablet per day x 3 days after 7 days.
That was increased to 4 tablets per day on August 9, 2013.
Moved to Florida September 29, 2013 and began with new neuro immediately who diagnosed me with PD on November 15, 2013 from the results of a DATSCAN which today can prove whether or not the dopamine in my head has been progressively depleting or as my current neuro suspects may very well have stayed the same level. Will be interesting to find out!!! I don't have my prescription record handy for this writing from this doctor, but my pharmacy records will tell
For insurance reasons had to change to a new neuro who I saw for the first time on February 5, 2015. My visit record from that day shows I was on 1 tablet x 5 times per day.
Went up to 1 tablet x 6 times a day on December 15, 2015.
By November 2, 2016 I was raised to 1.5 tablets x 5 times a day then on October 3, 2017 raised again to 2 tablets x 5 times per day.
Changed neurologist when I moved. The initial visit was November 10, 2017. He raised me to 2.5 tablets x 6 times per day
By January 12 , 2018 I am taking 3 tabs at my 6am dose and 2 tabs for another 5 doses per day. He tried to raise me to 3 tabs x 6 times per day but writes that I reported being super hyper at that level. He backed me down to 3 tabs in the 6 am dose then 2.25 for the other 5.
My final report before Shands visit on June 20, 2018 was my last visit to that other neuro on March 23, 2018. I was taking 3 tabs at 6 am and 6 pm and 2 tabs at 10am, 10pm, and 2am. They write in their report, "Ms. Vullo was advised to take 3 tabs of Carbidopa/Levodopa for her 0600, 1000, 1300, and 1800 doses" and advised to skip the next two dose all together. That did not work so they prescribed me 3 tabs x 6 times per day and this time I stayed that way until June 20, 2018.
When I left Shands Hospital I immediately began to drop to 2.5 tabs x 5 times per day. Seven days later I dropped to 2 tabs x 5 times per day. 7 days later I am at 1.5 tabs only 3 times per day.
What does all of that add up to?
I HAVE SWALLOWED 13,474 TABLETS OF DOPAMINE AT A COST OF $17,381.46
I HAVE AFFIXED 1,795 PATCHES OF NEUPRO AT A COST OF $41,567.70
FOR A TOTAL COST OF $58,949.16
This is getting better and better. Found a US Based Association for doctors and students. The International Association of Functional Neurology and Rehabilitation (IAFNR) at https://iafnr.org/
IAFNR was formed in 2010 to promote, protect and advance interdisciplinary scientific and clinical Functional Neurology and Rehabilitation Sciences at the national and international levels.
We remain focused on practical applications that will improve the health of suffering people, prevent illness and lower healthcare costs.
The site features research, conferences, courses, webinars and an online doctor referral service.
Their inaugural e-newsletter was published in April 2018. You can find it here: https://iafnr.org/wp-content/uploads/2018/04/IAFNR-April-2018-reduced-file-size.pdf
International Association of Functional Neurology and Rehabilitation
2487 S. Gilbert Rd #106-116
Gilbert, AZ 85295
Found a very helpful soft cover textbook for doctors on Functional Neurology with chapters that include an explanation of its origins in the body, how to diagnosis it, and how to treat it. The treats are chiropractic based natural healing. What a great alternative to handfuls of medication. My copy arrived last night and I am voraciously reading it to bring myself up to speed.
Receptor Based Solutions; Functional Neurology Every Doctor Should Know
by Michael D. Allen (Author)
At the time of this writing there are 6 left in stock. You can find it on Amazon:
Here is the author's website: http://receptorbasedsolutions.com/
The author's Twitter site: https://twitter.com/blackbeltinak
In my almost 10 year journey since my first symptom sent me to the PCP in January 2009, my rollercoaster odyssey for the next five years to find a diagnosis, and then finally being told I have Early Onset Parkinsons Disease in November 2013, I never heard or came across the term "FUNCTIONAL NEUROLOGICAL DISORDER".
Luckily for me, the introduction came just in time. I learned about FND at the University of Florida Shands Hospital Movement Disorder and Neurorestorative Dept during an evaluation for Deep Brain Stimulation Surgery to implant a device that as a PD patient would help to stop my tremors and whole body Dystonia. I went in expecting a date for surgery; and left there with a change in my life trajectory. WOW!!! Keep reading......
All it took my new neurologist to determine I most likely don't have PD (or if I do its a mild Stage 1) was to read the results of the one hour of PT and one hour of OT plus he scheduled me for BEFORE my eval (in conjunction with his own manual test results). I had not had either therapy since 2014 and that was the LSVT BIG program I took for balance. These two appointments prior to the doctor seeing me were KEY!!! I had three other surgical evals prior to this one at two other major hospitals and neither began with PT or OT. Brilliant move!!!!
I arrive at Shands off my medications for almost 24 hours. I was in full body Dystonia. Stiff as a board and unable to walk. I went to my PT appointment in a wheelchair. After my PT stretched all of my limb muscles and started me on warm up exercises, she proceeded to give me tests (which I remember from the BIG evaluation). I was having so much fun, my body returned to supple and flexible. At the end of the hour, I threw my heavy overnight bag over my shoulder and promptly walked into the waiting room at a normal walking pace. My muscles were now awake.
My next appointment was OT. A brilliant OT measured my fine motor skills and promptly determined there was something else going on here. She asked me if I ever experienced trauma. So I proceeded to list the ones I could remember - after 30 minutes she had to stop me and asked, "You ARE seeing someone to talk about all of this, aren't you?" Of course, I said, "No, why?" I didn't notice until hindsight that while I was discussing them, my body became completely relaxed and all tremor was gone for good..... for the remainder of that day. I didn't have any idea in that moment that my diagnosis was about to change.
My next and final stop was my to meet my new neurologist who put me through the test paces (I am oh so used to) and then I sat down to schedule a date for my surgery and instead was told that my brain might have trouble initially understanding this, but he suspects I do not have PD at all. He thinks I have FUNCTIONAL NEUROLOGICAL DISORDER. In panic, I said, "What is that????" (Praying it wasn't worse than what I have now. Wait, I have something else? How could this be?) My ears heard him and my brain sent out an SOS. Stop the presses. WHAT??? After an explanation from my doctor (quickly) that FND is treatable and most likely for me curable, I burst out in a guttural cry. The relief was palpable. We proceeded to finish speaking with me wailing because I couldn't stop my reaction. He went on to explain FND, which I researched when I got home. His treatment schedule for me.......Titrate OFF of my meds on a slow schedule. Get my Carbidopa/Levodopa down from 18 per day to 3 then off the other meds, if I can. Three PT and three OT appointments per week and talk therapy twice a week. It can take between 4-12 months depending on the patient. WOW!! Are you kidding me?
Fast forward 11 days to today. I have titrated down to 9 dopamine tabs per day (cut in half) and I have not felt this well in a really long time. I woke up this morning with no sign of tremor even though my last dose was 7 hours ago. I SLEEP!!! Last night I went to bed at 10:30pm and did not wake up until 5:30 am when my dog signaled he needed to be let out. I also took two naps yesterday and one already today. These are the welcome first steps to resolving my dopamine induced SLEEP DEPRIVATION. My mind is surprisingly and obviously to everyone around me - very clear. I am back to making intelligent decisions in a timely manner. I am much less "reactive" to what I am being told. I automatically returned to listening to what someone says and then responding. I am not an emotional mess. In fact, I have my fighting spirit back. I can see the masking leaving my face. I can easily go 6 hours between doses; prior to this I couldn't even make it to 4 (I was "on" for only maybe 2 hours at time with high velocity tremor in between that was really affecting my life every day). I am making myself good meals to eat; not grabbing something quickly or not eating at all because I couldn't make a decision. I feel more each day like the "normal" person I used to be. My brain is back!!!!!
My body is ready to come back, as well. I started doing push ups (didn't have strength to hold one 10 days ago) and sit ups and stretches. Getting prepared for much needed PT and OT. I always had a firm, slim body. All the weakness and lack of motivation to exercise has made me loose and jiggly. Luckily that's not going to be too hard to fix. I just need to put forth the effort. Once my muscles are tight once again, it should help stop the tremor (which should also subside as soon as I work out the PTSD from a life filled with trauma). I am aware that I carry lasting memories that I recall almost every day. Some much stronger than others but I would easily tell you I suffer from PTSD - there is no doubt. FND has to do with a disconnect in your nervous system. If you know me, this would have been a "no-brainer" to diagnose if you were aware of FND.
Here are some very vital resources I am learning from and you can too. I will be back with updates and more information. We need to spread the word: FND AND PD MIRROR EACH OTHER SO CLOSELY THAT THEY CAN EASILY BE DIAGNOSED IN PLACE OF EACH OTHER. There are specific things that belong to each, but you have to look closely. PD lives in the motor region in your brain; FND lives in the autonomic region (reactionary). If you don't have PD, like they suspect I do not, then - like me - you can come "in" and "out" of PD symptoms almost at will. I do not have consistent PD. It can be almost undetectable and catatonic - in a large swing from nothing to severe. I find I can do that based upon my emotions. If I am calm and stress free OR if my thoughts are re-directed (like when I am in public), the PD symptoms are the least noticeable. My tremors are high when I am the most stressed or tired or receive information that I don't want to hear or am in a situation I don't want to be. Any time my brain goes on FIGHT OR FLIGHT, my PD-like symptoms are at their worst. My new doctor promptly annouced. "If you really had PD, it would NOT be possible to do that." What a smart cookie!!! I encourage you to do some research and ask your doctor if this could be a possibility for you.
RESOURCES I HAVE FOUND: (Note: I am not a medical professional so cannot make comment on or warranty or recommend anything written on any of these sites. I just found them myself.)
Let me know if you come across good resources to share. This is exciting news for me and I hope for someone you love. In some cases, there is an alternative to PD. My intuition tells me this doctor nailed it on the head (no pun intended) and lucky found me out before surgery. I am forever grateful.
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..............
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Here are a few of mine:
Do you need support?
Find us on Facebook at:
"Help Take Back My Life in 2016" (aka Lisa's Super Hero PD Support Team)
Connect with me online:
"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."