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."
So what is my dose count? Starting with the figures I calculated in my July 8, 2018 blog post, I estimate that through this month:
I HAVE SWALLOWED 20,000 TABLETS OF DOPAMINE - RETAIL $21,161
I HAVE AFFIXED 3,200 PATCHES OF DOPAMINE AGONIST - RETAIL $83,230
TOTAL FOR ONLY THESE TWO MEDICATIONS SO FAR - - $ 103,400 and counting.
I take other meds and have endured 15 MRIs, 2 DATSCans, a couple dozen CT scans, specialist visits, treatments, and so on. Parkinson's is not an inexpensive disease to have. If in the future I need Deep Brain Stimulation surgery, we're looking at $100,000 just for that. Its mind blowing.
So where do we go from here?
My new neurologist advises that in order to be able to go the distance we have to cut back. I need to wean my Carb/Levo down to 4-5 tabs per DAY, while he is titrating me on to a new drug which helps the carb/levo effectiveness last longer so I can take less of it. And drop one capsule of another medication. After a month, if this is comfortable and works, we'll wean down to one patch and see how I do. He advised me that I will NOT be able to be drug free. Stop trying to get off the drugs. The inconsistent supply of dopamine is only making the symptoms worsen rapidly.
I think my new doctor and I will get along well. Will keep you posted on my progress.
NEVER GIVE UP, NEVER 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."