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 ned 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:
* Two 25/100mg tablets of Carbidopa/Levodopa - 5 times a day (6,10,2,6,10). Sometimes my tremor wakes me up at 2am and I will take another two a couple of times a week. (That is 10-12 tablets every single day)
* Two 8mg patches of the dopamine agonist, NEUPRO - once a day. The manufacturer recommends a max of 8mg dose. I take double that since 2018.
* One 100mg capsule of Amantadine - 4 times a day. This is to control the shaking in my legs, so I can stand up straight along with the curling of my toes tight from Dystonia.
* FOR EMERGENCIES ONLY: One 15mg Apomorphine strip under my tongue of the brand new drug, Kynmobi. A game changerthat was approved by the FDA earlier this year and will be available at the pharmacy in the Fall. I have a supply from the clinical trial I participated in. This is used to speed my brain to the "On" position when something goes haywire and I'm at too high of a velocity in tremor or my Cervical Dystonia is trying to snap my neck. In approx 5-7 minutes I am back moving normally.
Along with these I take Gabapentin for my nerve damage. Propranolol to stop my heart from racing as a result of Carb/Levo. Plus supplements that help curb the swelling in my extremities (another side effect) and to keep me regular.
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 NEUPRO - 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 COMTAN, which helps the carb/levo effectiveness last longer so I can take less of it. And drop one capsule of Amantadine to 3 per day. After a month, if this is comfortable and works, we'll wean down on the Neupro 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. Its only making the symptoms worse.
I think my new doctor and I will get along well. Will keep you posted on my progress.
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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."