"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.
The consensus of the hospital group and neuro group is to commit me to an in-patient psyche ward for an indefinite period of time until they figure out how to fix their medicine mess under doctor supervision.
Do they want me to titrate completely off following an FND diagnosis? Hey, wait!! Before you do that, what if I actually have PD instead and after 6 years of dopamine pills I have no dopamine left in my head? I am not aware of any quick way to get dopamine in my brain. Won't that sort of get me to that post-mortem test quicker?? On the flip side: What if I go back up and they just leave me on my meds so they don't have to deal with it? My side effects including visual disturbances, osteoporosis, and OCD behavior will continue to get worse. I'm too young for this horseshit. January 15, 2020 was the 11 year anniversary of my first PD appointment. 4,015 days. 96,360 hours. Official unstable under doctor's orders.
My advice to those doing research or not yet this far into your disease: Question everything your doctor tells you and get second opinions before making any drastic changes to your routine. There is NO definitive test for PD except post-mortem. All doctors are only giving you their best clinical guess on both diagnoses.
This royally sucks,
Been quietly tapering off of my Parkinsons meds. Started at 14 tabs of Sinemet a day and two 8 mg Neupro patches. Down to 8 tabs a day and only 1 patch. Just short of halfway there. I’m hanging in there. Tough some days but today is a good day. I’m definitely thinking clearer. Brought my racing bike inside the house and put it in a stationary training stand. I’m putting miles on it. I should be off my meds by Christmas. Keep praying. It’s been 8 years since I started these drugs. Happy to say goodbye!
Happy holidays everyone!
This morning I write from my bed in Advent Hospital to share great news.
I've just woken up, for the first time in years, free of panic and a racing heart. I do not detect any pain anywhere on my body and no sign of tremor internal or external. I am completely still. I recognize this immediately. I have not felt this calm or still in over 8 years. I can't believe it. It feels odd and exciting at the same time. What a rush! I feel like the clock has rolled backwards. I smile and literally jump out of bed, simply because I can, and run to show my nurses. I'm standing straight and tall. I am not leaning forward on misshapen toes that have tried to keep me from falling forward for the last year. My hands & feet are not swollen. The nerve pain running under both upper legs is gone.
For seven days now this hospital admission has given me the chance to finally get the rest I was not giving myself. It has also allowed my doctors to begin the process of titrating me off of very high doses of Parkinson's medicines. As you know, I've tried to titrate once before and failed. It was too painful to complete on my own. This time I am doing it the right way; under local doctor supervision along with meds that will take away the all over nerve pain that intensifies as my medicine is reduced plus a stabilizer drug to balance my brain chemicals as I adjust from an overstimulated brain to a normal one that thinks clearly. Soon I will be transferred to in-patient physical rehabilitation to get my body moving again and continue my titration under doctor supervision. My focus is on my core strength and stability, both depleted at the end of this journey. Finally, the hospital has arranged for Cognitive Behavioral Therapy to equip me for the road back from thinking of myself as a Parkinson's patient to a completely healthy 55 year old. I'm so excited.
It was one week ago that I broke down and admitted to myself that I had to do something to help myself. I could not bear to stay in pain, tremor, fear and helplessness one more day. I kept thinking to myself, "if I call 911, who is going to take care of everything for me?" I hesitated three times then stopped thinking, let go and made the call. Fast forward 7 days and I’m on the road back to myself. To the years of good health, freedom, love, laughter. Being able to support myself - mentally and physically.
It's been two weeks since I looked in the bathroom mirror at my reflection and said to myself “if this was your friend in the mirror and they looked this bad, wouldn’t you tell her to get help?” I answered: YES. But how? I know now, you don't have to know or have that answer to get help. I just had to let go, let God. In return, the Universe found the perfect hospital and the perfect setting to recover. The nursing staff is filled with moms and grandmothers. People who really know how to care for those that cannot care for themselves. Each one of them a guardian angel who say to with a smile, "I gotcha. Just let go. We are catching your fall. All you have to do is get well again." I did and am eternally grateful for their compassion and love.
It hits me. In all of the conversations I've had about surviving Parkinson's Disease, I never really expected to ever be completely well again. Today I see myself no longer reacting to life's stressors with tremor. I’m going to take back my will from wherever it went and take charge of my life once again. I’m back!! God is so very good.
The past 10 years and 10 months were my 40 day flood. I was at the bottom of the well. Living each day on very high doses of PD meds stripped me of my ability to make the right decisions. I've learned this with the help of my amazing husband who has been trying to deal with my shortcomings that I couldn't see. The constant battle to get me to think correctly, not as my medicated brain wasI was not able to make good decisions Not any longer. My husband rescued me once again. He’s such a good man. He’s giving me support and time to heal even though he’s not feeling well. As soon as I’m out I will pay it forward and watch him heal next. There is no better feeling than waking up actually refreshed, with no aches or pain, tremor long gone and you feel alive and happy. I never ever thought I would see that day again. I want to wake up every day of my life exactly as I did today. It’s really true - - - Never give up and never give in.
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
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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."