NEVER GIVE UP & NEVER GIVE IN !! You've got that right...
11 Years, 5 Months, 4 Days...... January 15, 2009 (Age 44) - June 18, 2020 (Age 55)
My first DATSCan was performed on 11.15.2013 initially diagnosing me with Parkinson's Disease. Five years later I convince my new neuro to perform a second comparative DATScan. Below is the proof. My right side putamen shows up pure black on the scan from being void of any dopamine transmitter activity (which is why the entire left side of my body is in continuous tremor). The left side of my brain (which controls the right side of my body) is still hanging in there with trace, minimal activity. It confirms without a doubt, I have PD.
I am just off a FaceTime call with my new neurologist, Dr. Aragon. I see him for the first time since he ordered the DATScan. I'm not even shocked or moved by the news because it only confirms what I already know. He tells me, "Forget about Functional Neurological Disorder. There is no doubt about it; You have Parkinson's Disease. The second test confirms the first - it is positive." He goes on.... "With this news we now need to look at the long term for you. You are way over medicated. You'll never be able to go the distance at the dopamine intake that you're at now. We've got to slow it down."
I run through the list of Parkinson's specific-medications I take. All together I take about 30 pills/patches/capsules every day. My pharmacy refill for my dopamine is a whopping 350 pills a month. That's over 4,000 per year. My first MDS doc, after diagnosing me in 2013 gave me a warning. "Dopamine works like money in a bank account. Every pill you take is like withdrawing a penny. Eventually you will run out of effectiveness and your only alternative is brain surgery." Wow!! How long is that? "Everyone is different. There is no way of telling."
You know what? This whole Parkinson's rollercoaster I've been on throws me no surprises any longer.
My medicine regimen a constant shift of up and down in dose. It's destroyed parts of my body that may never return to full function. After 7 years of begging for a second DATScan to (at a minimum) see if there has been any progression Is finally granted.
I received partial results today of last Thursday's DATScan (with the full details tomorrow). THE COMPARISON BETWEEN 2013 AND 2020 DATSCANS CONFIRMS THAT I MOST DEFINITELY HAVE PARKINSONS DISEASE. I believe they will tell me that it is a slowly progressing version of it, but the test proves my DNA transmitters are now at trace amounts at best.
I have just donated to #EarthAngelsforDementia @Earth Angels for Dementia at the request of the NJ governor. This outstanding organization is providing meals around the clock to the frontline healthcare workers providing COVID care. Donate as little as $5 (one meal). I donated a one meal a day for one month in honor of my cousin, Elisabeth Pappalardo, a nurse in PA and NY. God bless these Healthcare Angels putting their own personal safety on the line selflessly every day. Do not consider it. Just do it. Now. CLICK HERE.
One of the most difficult things one can do with a brain under constant chaos is to simply relax. For over a decade I have felt as though I needed to do everything on my to-do list as quickly as possible. Imagine floating outside of your body; being able to see yourself doing chores at breakneck speed and wondering to yourself, "why???." Why can't I just stop, slow down and start again? I still to this day marvel how too much dopamine can do that to you. It acts the same way as cocaine or methamphetamines (like speed), however, dopamine doesn't affect your senses or get you high. It revs you up to run a marathon in record time when you think you are not capable of running the 100-yard dash!!! Try living under that influence day after day, year after year. If you are in the same predicament, you know It's exhausting.
So over the years of taking dopamine I never needed, this is how it happened.I went from 1.5 tablets of Carbidopa/Levodopa 25/100 in 2012 to a peak in summer of 2018 of 18 (EIGHTEEN) pills every day. That my brain is healthy is a miracle. It has been subjected to over 18,000 pills of excess dopamine and survived. Add to that over 3,000 8mg patches; a dopamine agonist, which has no dopamine in it but tricks your brain into thinking it has more. The maximum recommended by the manufacturer is one 8 mg patch. I've worn TWO since December 2017 prescribed by Mayo Clinic.
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."