One of the most difficult things one can do with a brain under constant chaos is to simply relax. For over a decade I have felt as though I needed to do everything on my to-do list as quickly as possible. Imagine floating outside of your body; being able to see yourself doing chores at breakneck speed and wondering to yourself, "why???." Why can't I just stop, slow down and start again? I still to this day marvel how too much dopamine can do that to you. It acts the same way as cocaine or methamphetamines (like speed), however, dopamine doesn't affect your senses or get you high. It revs you up to run a marathon in record time when you think you are not capable of running the 100-yard dash!!! Try living under that influence day after day, year after year. If you are in the same predicament, you know It's exhausting.
So over the years of taking dopamine I never needed, this is how it happened.I went from 1.5 tablets of Sinimet (Carbidopa/Levodopa 25/100) in 2012 to a peak in summer of 2018 of 18 (EIGHTEEN) pills every day. That my brain is healthy is a miracle. It has been subjected to over 18,000 pills of excess dopamine and survived. Add to that over 3,000 8mg Neupro patches; a dopamine agonist, which has no dopamine in it but tricks your brain into thinking it has more. The maximum recommended by the manufacturer is one 8 mg patch. I've worn TWO since December 2017 prescribed by Mayo Clinic.
Today, my new neurologist says that my medicines are the root cause of my tremor, dystonia, bradykinesia, and dyskinesia. That once I'm off all my meds I should return to normal. The question is: Will I be able to get off of everything?
I started titrating for the third time a couple of weeks ago and am down to 1.5 tabs x 4 per day = 10 tabs a day. Doing it slowly as possible. Not moving to the next drop until stable at the last. I have to get off of these but it is the same withdrawal and risks as getting off of those illicit drugs. It physical hurts. My tremor gets worse before it gets better. My body screams for more dopamine when I get too low. How will I get over the hump?
Holistic medicine, yoga, medication, exercise, CBT and EMDR work - centering myself. Trying to return to myself with Grace. This is by far the most difficult thing I've ever had to do and the only thing I have completely failed at three times.
I will NEVER GIVE UP AND NEVER GIVE IN. I must breakthrough and resume my life.
Wish me luck,
Unbelievable, but true. I was given the gift of a miracle. A miracle my brain took an entire year and a half to come to terms with.
2020. A new decade. A new chapter. A peaceful, still life. Who would have guessed that ending?
Working as a Listener with 7 Cups has been extremely rewarding for me, as well as eye opening. I am a Listener on a form of online crisis line for anyone who wants to anonymously chat about anything on their mind that is bothering them.
I've spoken to others just as anxious as me. Those that can't believe a boy doesn't want to be with them any longer (and vice-versa). Those that have no money, no food, and are sleeping on someone's couch. I've chatted with the abused, the lonely, the strange, the perverted, the university student who is struggling to meet the expectations of their parents. The dark lonely person who answers in only one word replies to keep me guessing like a game. I've also helped a great deal of people in my short tenure. Here are some of my feedback reviews:
Writing this blog to connect with others who are also lost or suffering on their life's journey was the start of allowing myself the freedom to be vulnerable and honest with myself. I struggled and fought hard against believing what others were showing me with a mirror. Coming to terms with the reality of who I am, owning up to my weaknesses while trying to still celebrate small my successes has been a giant kick in the pants. It has left me stripped down and laid bare for all to see now that my mental emotions are no longer pent up and hidden on the inside. They are in full physical view for all to see. My tremor, my neurologists tell me, are of my own making and not that of Parkinson's or any other "disease." My brain was pushed to the breaking point (as stubborn as I was to get things figured out and done) and I basically broke it. Okay, now what do I do? Where do I go? How do I fix this? In the meantime, its all about healing. My mind, body, spirit, soul. Be kind to myself. Ask others to be kind to me. Try to navigate help from the medical profession to find out how to return to a whole functioning adult human again. First step: Cognitive Behavioral Therapy...... along with sleep, exercise, and nutrition.
Since no one has taken any functional scans of my brain off of meds since 2013, I hope they are right. Beginning to titrate down once again starting today. 2 Carbidopa/levodopa tablets every 6 hours. Every 5 days drop each dose by 1/2 tab. Return to the doctor in 3 weeks. When I get too low I can't walk any longer. Doctor says I can't die from getting off my meds. Do I have any choice but to trust? Going back to Dr. Deeb at Shands Gainesville in 4 days for his final opinion.
In the meantime, I will lean on my colleagues at 7 Cups to help me through. There are hundreds of fellow Listeners who are prepared to lend me an empathetic ear as I go through this final struggle to regain my ability to cope and compose myself. The doctors say I should not tremor once off the meds. Cross your fingers they are right.
Have you ever done something for someone and it ended up being the best present to yourself?
Recently I began volunteering as a Listener with 7 Cups of Tea, a community of thousands dedicated to improving Mental Health around the world, one anonymous chat at a time. On the site you'll find a plethora of resources including a guided "Growth Path" with tasks that make you think, forums, group chats, one-on-one chat sessions with your own Listener that is volunteering to man the chat (available 24 hours / 7 days a week). Make friends around the world. It magic and its free.
7 Cups is perfect for those that feel they need to chat with someone but your resources are tight. I stumbled upon them and was invited to become a Listener. Helping others on their life journey allows me to pay-it-forward while it hones my listening skills. I love it.
Feel free to come try it. All you have to have is the need to chat privately with someone who will lend you an ear. The Listeners have no idea who you are and cannot ID or track where you're from. Here's the link: https://www.7cups.com/19598550. They are on Facebook at https://www.facebook.com/7CupsOfTea.
To strong mental health!
"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,
Do you need support?
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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."