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.
Wow!! Slept through the night five nights in a row. It’s been a long time since that has happened. And I woke with no tremor and feel completely normal. I am serious. It’s like I woke up from a bad dream. Too bad the dream ends around one o’clock every afternoon. It’s like Cinderella. When the clock strikes one, the light switch turns off in a nightmare. I feel it progress from my feet, upward. I get slow, my feet curl under, I start to lean my body forward to propel myself. My face droops, I start to lose the fine motor skills in my fingers and I can’t grip hard enough to hold my keys or open a soda bottle. Then I start to tremor, become stiff and walk with my arms bent and shuffle because I can’t lift both feet off the ground at the same time. I forget how to walk heal to toe and it’s over. It’s too weird that the difference is so drastic that I can feel the progression and note every minute of what’s happening.
When my cervical dystonia kicks in by 8pm and I have to take a Kynmobi then it’s time to stop moving around until it kicks it. That stops my neck from breaking (usually takes 5-10 agonizing minutes). Then I’m pooped until the next morning. And I get to be great again.
I wrote Dr Singer yesterday to see if I would be able to take a second Nourianz at 1pm and get another 7 hours relief. It’s expensive but after 9 years of continuously tremoring it is f*^*ing worth every penny!!! I can’t believe the dichotomy. My thinking is slowed to normal and clear each morning. I feel like jumping in the shower and heading off to work. I’m 44 again. My husband is smiling from ear to ear. He can’t believe it either.
This can’t be a dream. Please God let it stay like this and grant me a second dose per day without side effects. Can I get a break for a while from this ass-kicking disease. It’s been 11.5 years. I have been tortured enough. I am submitting a request for a vacation from Parkinson’s for a while to do all the good things I want to accomplish. Thank you. Amen.
I wish this for everyone,
I'm back with an update to my televisit with Dr. Singer at the University of Miami last week. It was so amazing to see him on my laptop screen. He took care of me between 2015-2017 and we became like family so to see his beautiful smile brightened my day instantly. There is no better doctor in the world in my heart. His personal journey led him to the exact profession he was born to be in: as a loving care taker, diagnostician, and problem solver. How I've missed him.
We had a very productive visit. He checked me all out and after not seeing me for a few years, he was surprised (and not surprised) to see me with advanced PD. He cannot believe how overmedicated I am and vowed to correct the situation. He explained to me that like a glass of water filled to the top, My capacity to take any amount of anymore dopamine affecting drugs is done. He told me that if I'm given anything new, I have to take something equal away to stop the onset of manic behavior, visual disturbances, hearing things that aren't there and the inner feeling of uneasiness and psychosis.
He then asked if I would be okay with stalling DBS just once more to try one more new drug that came out on the market in the last year or so. It's called Nourianz and it came from the Walgreens Specialty Pharmacy. Thank God my insurance agreed to cover it. The price tag = $1800 a month for 30 tablets. (Not to give away the ending, but worth every penny.....)
Dr. Singer explained that unlike all of the other meds I am taking, this one is not dopamine related. It is specifically used with carbidopa/levodopa to calm tremor and stop freezing. He started me on one 20mg tablet per day and said to check back with updates
I've been taking it for 4 days and this is a portion of the update I wrote:
"eporting in: I have been taking the Nourianz - 20mg pill once a day for 4 days now and it has been consistently good......I've cut back to 1.5 patches of Neupro (14mg) as soon as Nourianz started to contribute to feeling spacey, other-worldly. I heeded your advice; add one drug - take one away.
I am sleeping through the night......I am staying asleep until 5-6am. I wake normal, no tremor and take my 6am pills including Nourianz. I continue to feel completely normal like I do not even have PD until about 12:30pm and then my shaky self returns. There is a distinct overall feeling between the two states. I'm annoyed in the afternoon when it starts because my tremor does not stop until I go to sleep around 10pm. Add to that daily bouts of Cervical and Right Foot Toe set Dystonia between 5-8 pm that used to come once or twice a week is now every day.
Thanks to the Nourianz addition, I feel completely normal from the time I wake up for about 7 hours. It is unfamiliar to me now to be calm and still. Every first half of the day I have no tremor, no stiffness, no hesitation, no distended stomach, no aching legs from being pulled tight, no toe clenching. No sensation that anything is out of the ordinary. Like riding a bicycle, you don't forget and its been 9 years since I last sat still so my family laughs at me when I keep saying "I must be in a dream", What do you think about adding a second dose at wear-off to give me a straight 14 hours of relief?"
I truly hope this is not a "honeymoon" period that goes horribly wrong. It doesn't feel like it will. It feels like the Universe has given me another gift this summer (all summer I have been receiving unexpected and very surprising blessings. Its been amazing).
So here is my early review of this drug: For me it works as advertised. I went from barely two hours of somewhat so-so okay time on.......... to 7 full hours of complete fluid movement without a hint of PD. Yesterday I almost forgot I had it. And that is testament to the drug combo and its new addition. On the Nourianz, I have no tremor and absolutely no freezing. Here are pictures taken Sunday and Monday of me. This is how great I feel on it!!!! If you have not heard of it, ask your doctor whether it would work for you. (Note: This is my personal experience only. I am not a spokesperson nor advocate for the drug or drug company. I am not endorsed or compensated by anyone for anything. Just paying the tip forward to my PD pals)
Here's to good health and lots more bike rides.........
About a month ago, I had a televisit with my neurologist who after hearing my struggles with staying "on" during the day, added COMTAN to my cocktail of drugs in hope that it would extend the "on" period of the Carb/Levo tablets. We started out with only one Comtan (Entacapone) per day. It worked so well, I almost felt normal again. I was so excited I hoped that Dr. Aragon would increase it to last all day. He did. He instructed me to add one 200 mg tab to each dose so I went from 1 tab to 4 per day adding yet ANOTHER dopamine agonist to the two others I am taking.
To no one's surprise, it only took 2 1/4 weeks of 4 per day to put me in a psychotic state with a disappearing memory. It felt very strange to be alert and aware of the changes. It was in slow motion coming on stronger each day until I had a break on a Saturday night when i took myself off of it when I became afraid to leave the house. I immediately called my neuro's office to schedule a follow up televisit to discuss.
He basically said, "Its time to consider DBS brain surgery. You are already at doses that are too high and nothing we try is working." "You are cooked," is what he told me as he handed me a prescription for DBS evaluation back with the University of Miami team (where I started out in January 2015). I am happily returning to the care of Dr. Carlos Singer (head of movement disorder neurology) and very experienced and acclaimed DBS surgeon, Dr. Luca. Dr. Aragon assures me, I should get approval this time. My televisit is scheduled for this Thursday, August 27th.
In the meantime, I introduced him to my rescue drug - Kynmobi, a listerine type strip that goes under your tongue and snaps you back "on" in a matter of minutes. I personally love this drug and use it as my rescue. It does not build up like Comtan; it assimilates the dopamine so it works faster and its more stable. It also stops my very painful cervical dystonia in its tracks. Unlike Comtan, I can take this up to 5 times per day and remain sane with no side effects. Perfect for me because I'm topped out at the number of drugs i can safely take, but they have become a problem because that max is not working. The current regiment of sinimet, amantadine, two Neupro 8mg patches, gabapentin, clonazepam and propranolol; has me "off" more often than "on". Kynmobi is my only resort that still works and brings me fully "on". I am using the extra clinical trial tabs that I've kept cool and dry. When the strips are introduced to national pharmacies. I will get a script and use this until surgery. Thank God I still have a med that does the trick.
I will let you know if I get approved and moving forward to a surgical date. Stay tuned.
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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."