Follow up to my previous post. A P.S.:
I just figured out my extremity swelling is gone this morning. I have ankles and my wedding ring is too big. I had it sized up from 6.5 to 8. And best of all I can suck in and hold my stomach in. That is one reason I lean forward. My center of gravity was around my knees putting pressure on them. Now it’s back in my torso. I can feel it. And I’m not purposely doing it. It returned on its own. My eyes also stopped darting around and squinting. Whoa!!!! I’m one happy PD symptom free girl this morning. Get back with you this afternoon. Let’s see if it stays this way any longer on its own. This has to be a dream. I asked for peace even for one day and it was granted. God is good to me today. I’m back for this moment.
I'm back with an update to my televisit with Dr. Singer at the University of Miami last week. It was so amazing to see him on my laptop screen. He took care of me between 2015-2017 and we became like family so to see his beautiful smile brightened my day instantly. There is no better doctor in the world in my heart. His personal journey led him to the exact profession he was born to be in: as a loving care taker, diagnostician, and problem solver. How I've missed him.
We had a very productive visit. He checked me all out and after not seeing me for a few years, he was surprised (and not surprised) to see me with advanced PD. He cannot believe how overmedicated I am and vowed to correct the situation. He explained to me that like a glass of water filled to the top, My capacity to take any amount of anymore dopamine affecting drugs is done. He told me that if I'm given anything new, I have to take something equal away to stop the onset of manic behavior, visual disturbances, hearing things that aren't there and the inner feeling of uneasiness and psychosis.
About a month ago, I had a televisit with my neurologist who after hearing my struggles with staying "on" during the day, added COMTAN to my cocktail of drugs in hope that it would extend the "on" period of the Carb/Levo tablets. We started out with only one Comtan (Entacapone) per day. It worked so well, I almost felt normal again. I was so excited I hoped that Dr. Aragon would increase it to last all day. He did. He instructed me to add one 200 mg tab to each dose so I went from 1 tab to 4 per day adding yet ANOTHER dopamine agonist to the two others I am taking.
To no one's surprise, it only took 2 1/4 weeks of 4 per day to put me in a psychotic state with a disappearing memory. It felt very strange to be alert and aware of the changes. It was in slow motion coming on stronger each day until I had a break on a Saturday night when i took myself off of it when I became afraid to leave the house. I immediately called my neuro's office to schedule a follow up televisit to discuss.
Rob asked me this year, 'what do you want for your birthday? I answered and he said. "you want to do what?" "Yes." I said enthusiastically. When will we EVER get a chance in the future to go to Magic Kingdom with the park filled to a mere 10% of normal average day capacity? There are no lines. The. longest we had to wait was 20 minutes. We finished each park in an unprecedented half-day. We also seized the opportunity to stay on-property as a Florida Resident at Saratoga Springs in a premium one-bedroom villa for $250 per night (regularly $500+ per might.) First floor close to transportation and across the bay from Disney Springs, where I savored Lobster for dinner at The Boat House in thee Trophy Room on Saturday night.
I was in the lap of luxury with a full kitchen, in suite laundry, a giant deep tub I loved drowning in each night we were there, 710 sf of space, a balcony terrace, huge grotto pools with pig pong & fooseball, and on-site luxury spa. Heavenly.
The front desk placed a "Happy Birthday Lisa button on my shirt placket and I received about 100 wishes from random strangers. That was a surprise & delight.
We enjoyed an unforgettable three days and two nights in a Disney resort room, played with all the amenities, ate including a birthday dinner and four 3-day park passes for less than $1500. If you are a Floridian reading this. It is a MUST DO while COVID is still affecting the scale back. Fall in love with your favorite Disney characters again!!!
Have fun and Be Well,
If you have Parkinson's Disease or know or love someone who does or you are a caregiver for a PD patient, you can help us win our fight to stop PD in its tracks. The researchers have already found their biomarker target and the substance that is eating away at our brain cells thanks to the MJFF. Now it's the #RaceToACure for researchers. What do we need to get there? More funding. Especially in today's economic climate it will take a village of grassroots efforts that all add up together to make this happen.
I have been gifted a little help from the Universe and my job is to send it around the world. Please add this to your checklist for or to include in your next fundraiser, especially if you are a PD Fundraising Organization, Event Planner, or Support Group. No need to create your own item to sell. And you can easily add this to any participant or Sponsor sign up kit for participants in any capacity to wear or gift. It a path directly to the PD Researcher's door. $5 at a time.......... Cut and paste and pass it on!!!
For those who dream BIG (like me), here is someone who didn't wait for his future to slowly & progressively rob him of his faculties. He dreamed big, took the first step and then the next. Because he didn't stop, he began steering not only his, but the entire PD community's future. The Michael J. Fox Foundation for Parkinson's Research was born in 2000. None of us with the disease today would look anything like we do because of his success in bringing PD to the front page with his celebrity status and early diagnosis.
Prior to MJFF, if you were diagnosed with Parkinson's Disease you were given Carbidopa/Levodopa, the gold standard pill. That's about all they had. DBS was still early. There were other drugs but those were accidental finds when treating for something else.
MJFF did the incredible. The Foundation FUNDED PD researchers so that the smartest of the brilliant could actually do their jobs and how lucky we all are. He didn't just speed up the process - it went WARP SPEED. The result: New drugs and new therapies funded, clinically trialed, passed and produced for the entire range of symptoms this bizarre disease carries with it. DNA research to identify potential biomarkers led to finding alpha-synuclein acid eating my dopamine transmitter cells and the biomarker LRRK2 connection. Researchers now have a target !! The problem was and still is the blood/brain barrier hurdle that keeps us alive but limits doctors access to reach it beyond scan for answers, unless its a brain in autopsy.
No two PDers are alike. No disease is quite like PD. No one, in my experience, has only PD. I have PD, Dystonia, Dyskinesia, and a host of other disorders (all related). Patients affect can be almost unnoticeable to incapacitated. And it suffers from too high a rate of misdiagnosis as something else because it is showing up earlier and earlier in younger and younger patients.
Michael J Fox is a personal hero of mine. Thank Michael for leading the way to ending this for our children's children.
What if you knew you couldn't fail? What could you do if you dream big dreams and never give up or give in?
Wear Your Heart On Your Sleeve
"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."