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. So much for my most recent (idiot) neuro, Dr. David McDonald (of Neurology Associates of Ormond Beach - avoid them at all cost). At my last appointment he told me to be quiet and listen. It is his opinion that my tremor is fake (his precise words were "the fakest tremor I've seen in my entire career") and that I just need to get off my meds and see a psychiatrist. I think it's him that needs therapy and a course on how to improve his bedside manner.
Dr. Aragon is preparing me for the long haul. Time to stop the rollercoaster and finally get serious. He is regulating my meds to get me stable. It took 4 in-patient stays after my combined former doctors tried unsuccessfully to wean me off all my meds. Dr. McDonald tried to do it in only ONE WEEK - all my meds (are you kidding?). Even I said, "hell no" to that suggestion. I hope they are happy that all it did was find me unable to walk, shower, dress or care for myself. Finally an angel, my brilliant NP, Monique Medina found me the right expert in Dr. Aragon. Parkinson's sucks.
In 11 1/2 years of living with this, I've learned never to give up and never give in. This entire time, each doctor I visited just needed to do what I asked for: re-scan me again. Thank you Dr. Aragon for believing in me and for using your power to get me back on my feet again. Thanks to him I did yoga this morning, swam laps in my pool, took a nap, showered, fed myself and typed out this entry. I've even begun working. I found a job working from home as a Customer Support Rep so I am no longer isolated. My movements were more fluid today. My mood is upbeat. I will win over my nemesis - my own brain. Another day to celebrate. 16,217 days before PD; 4,172 after - only 21% of my lifetime. We've got a long way to go and a lot more to accomplish. I have a world to conquer.
Let's beat this together....
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.
NEVER GIVE UP, NEVER GIVE IN!
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 am not surprised or shocked. Maybe the medical community will take me seriously and figure out how to treat me properly and stopped f*(*ing around. I am sick of doctors. All I need is my new neuro to agree to give me the abdominal pump which would feed me a much lower and consistent level of dopamine right into my bloodstream or worse cast DBS. In the meantime, I make a resolution to just simply get myself health. Mind, body, spirit.
What a journey this has been. I used to rush, desperately trying to find a cure. With time comes wisdom and a tolerance. If you would have told me that I would have continuous tremors as a middle age adult, I would have scoffed at the notion. I would not have thought I would be able to live with a disability, but you do adapt. You're afraid of it at first, and then you try to learn everything about it, and then you become a patient expert and advocate for your yourself and others.
I am a Parkinson Warrior. I am tough as nails and I will not ever give up or give in. I am at war with this invader and now that its confirmed, I feel confident I know the keys to living well with it.
At last an answer and a vindication. I was right; I have this disease. Doctors have been a blessing and a curse. If you have a good one hold tight. If you don't do not waste your time.
My life is very full and very busy. I'm still here to enjoy another day and that's all that counts. I'm not in a wheelchair, nor do I need any assistance for the most part. I am hoping my consult with my new neuro (who i really like, Dr. Erik Aragon in Orlando) gives me some solutions that will actually work, not just bandaid the symptoms. Will keep you posted.
All my love,
PS: I will get a copy of the DATScan on a disk. I will post a screen shot so you see the difference between a healthy brain and an abby-normal one like mine :)
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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."