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.
"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 Parkinson's 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.
For the first time in years I woke up free of panic and a racing heart. I do not detect pain anywhere on my body and there is no sign of tremor - internal or external. I am completely still. I have not felt this calm in a very long time. It feels odd and exciting at the same time. So with a big smile I jump out of bed 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.
We are all so blessed,
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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."