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.
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?
This is my story. My doctors believe my Parkinson's is environmentally connected. My DNA was tested and do not have genetic markers for Parkinson's yet I have just completed a second DATSCAN (2013 & 2020) confirming that I have PD. Need proof? Click here for a 1976 South Florida Ecological Study of soil samples in my neighborhood: https://pubs.usgs.gov/pp/1011/report.pdf. From 1973-1975 I, along with my neighbors, were overhead crop dusted with DDT numerous times in order to eradicate the mosquito population coming in from the Everglades. Pests to residents, it was also meant to stop the spread of insect-bourne diseases like Malaria. It was a yellow powder that rained down on us as we played outside. I still remember it today. This study documents the invasion of the human population into native South Florida wetlands that were literally landfilled to make acreage for tract home communities. The water was filled in with soil and the water was runoff into drainage canals. We had one that run alongside Bailey Road (C1 or C4 canal, I believe). At one point humans and ecology clashed in the early-mid 70's and they came to a crossroads; decide whether to continue on the path of ecological destruction which ultimately wins and causes human destruction like my disease. The Florida government took the high road and the ecology won. They stopped the overhead spray but the levels of toxins were 1000% above normal in soil studies.... and still are to this day. The same neighborhood. Scientists predict it will take more than 100 years. A lasting legacy that we have no recourse for. Toxins most likely did this to me and thousands of others. Pharma researchers are on the path to finding the antidote that will block those toxins from continuing to destroy human dopamine transmitters in the brain. The toxins turned a switch on. The antidote (treatment) will turn it off. Funding research and legislation to clean up the environment is vital to the health of our planet. Look for my new Parkinson's research fundraising campaign coming soon. Help me help foundations help scientists eradicate Parkinson's Disease. Never give up and never give in.
My heart spoke to me. I wrote down what it said. To no one in particular. Perhaps it was meant for you. If it is, my heart goes out to you...........
Pure love was all you were on the day you were born. You were a bundle of cells that formed and thrived and lived and entered the world with a fresh start. From that moment you took your first breath, time began to build your personal journey with the world around you. You were influenced by people who surrounded you. They taught you everything you needed to know in order to communicate your needs so that they could care for you until you were capable of making the simplest decisions on your own. Up until then you knew nothing but love and gratitude for the one that fed and nurtured you. As soon as you saw them you simply smiled and your caretaker smiled back. The simplest and purist form of saying, “I love you.” You didn’t know to look at them harshly or in anger. You didn’t think to yourself, “This person is beautiful,” or “I hate this person because they did this or that.” You also didn’t have any opinion about what people did around you. Your brain did not yet have any experiences you would use to comprehend the world in a complex way. You were only able to smile, look around, sleep, touch, smell, and take in the world without any judgement. You lived from how you felt and you were purely honest, because you didn’t yet know how to fake it or lie. Those were learned responses.
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."