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,
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 Parkinson's 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,
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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."