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,
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
I have been subscribed to the DAILY OM daily email for years. Only because I swear they have hidden a listening device in my home to get the scoop on what I'm talking about, and then they send me (and thousands of others) an email that is directly related to how to positively deal with it - - just about every day. It is way too creepy to ignore so I read it, faithfully, every day.
Right on cue.... here is a copy of their Horoscope email for LEOs for July 1st. (I have to go find that microphone now.)
On June 20, 2018, My 3,443 Day Nightmare Has Ended in a Miracle thanks to Shands Hospital at the University of Florida
Under the heading of, "YOU ARE NEVER GOING TO BELIEVE THIS......."
All went better than expected yesterday at the UF Health Shands in Gainesville. The staff at the Movement Disorder and Neurorestoration Center is incredible. Their protocol was unlike any I had been through in the past three attempts at other well known facilities that offer Deep Brain Stimulation surgery I so desperately needed as a Stage 4 Early Onset Parkinson's Disease patient.
My day began with one hour of PT with Alison Kraus, PT, DPT, NCS, and one hour of OT with (my personal guardian angel) Heather Simpson, MOT, OTR/L. I then saw my doctor, Wissam Deeb, MD, who together with the two other health professionals worked as a team to properly diagnose. Dr. Deeb had the very good fortune to deliver unexpected, jaw dropping news to me. I am not able to share the results with you at the moment, but I promise I will soon.
This open letter is to thank the unending love and support from the hundreds on my support team that were praying hard for a miracle. We got one. I lived 3,443 days as a Parkinson's patient. My decade long struggle has a final twist that (just like in a movie) leads me with no forewarning, to a happy ending; one reserved for Miracles from God books.
I am overwhelmed, blessed, and dumbfounded. I have accepted God's miracle with blind faith and am allowing myself some private time to process the last 48 hours.
I go between elation and crying and back. I still have work to do, but its not what you think. I will be back soon to explain what happened.
You seriously are never going to believe this.
I NEVER GAVE UP. Don't you ever, either.........
With joy in my heart,
P.S.: I just re-read my most recent blog posts where I write
DON'T GIVE IN
DON'T GIVE UP
PARKIINSONS WILL NOT WIN
There is a reason everything in life happens, in the order it happens. Their "NO" may have saved me from dying the day that surgery may have been planned. Their "NO" may lead me to the right timing of "YES". Their "NO" may have made me work harder to take care of myself and naturally improve my quality of life in the interim. Their "YES" may have stood in the way of something positive I would have missed out on. Maybe its not time to put holes in my head. Maybe a medicine that will stop my progression will be released and that is what I meant to take. My thoughts are not pointing to sadness. They keep pointing to: Something keeps stopping me from having brain surgery. What? It wasn't supposed to happen today. Why?
Now I know why. The Universe was guiding me to the right answer. My intuition was right on the money!!!!! Trust your gut.
Thank you for all of the "thinking of you" notes and wishes and prayers here and on Messenger. A really good health day is a precious gift. I've been sleeping better so today I woke up to enjoy one! To celebrate I thought I would check in and send you my smile in hopes you will pass it along to someone in your path today who could really use one. If you give yours away, chances are you will most likely get it right back. Have a beautiful day.
PS: My next surgery eval date is June 20th. Will check in as we get closer.
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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."