Great news for all my PD brothers and sisters out there. I just found out today that a few days ago, the FDA gave a rubber stamp approval to the drug that I was blessed to be included in the Safety portion of its trial in 2016. You can go back in my blog and see my real time reaction to the immediate efficacy of this drug.
Originally developed by Cynapsus Pharmaceutical when I started taking it; that company was bought by Sunovion Pharmaceuticals two weeks later in September 2016 for $635million. And I think they made an amazing buy.
The drug, Apomorphine, which up to this point was only available in pen/needle style of delivery that has you injecting yourself. Its more painful, a pain in the butts to deal with needle sticks and it is expensive. It appears there could be as many as 5 doses in one pen cartridge or as little as 2 and each cartridge is over $1000/month according to the RX sites I looked up. But the drug works.
The team at a small Canadian pharmaceutical company named, Cynapsus figured out a way to put it into Listerine-style under-the-tongue subliminal strips and it worked!!! I found the trial through the Michael J. Fox Trial Finder and was accepted. The first day they gave one to me; I didn't take my dopamine in the morning. They gave me this instead. I am not lying when I tell you that my high velocity tremor when dead silent in approx 3.5 minutes. I have a video tape of my face when it just STOPPED COLD. I was in stunned amazement. I walked out of there with three boxes of strips and a chart to graph my results. It was then I told my then husband, "Someone big is going to buy this pharma company up, watch." Sooner than I could buy their stock, the wonderful pharma team at Sunovion scooped them up..... And luckily for all of us they had the resources and the man power to do what other pharmaceutical companies have not been able to - - - they have brought to the patients. It is planned to hit the market in September. I hope its not as expensive as its counterpart. Trust me; if you are bothered by tremor OR you have DYSTONIA for which there are no drugs currently that effectively treat (you have to have DBS to help) - what is now called KYNMOBI - - for me only in my personal experience, also stopped the dystonic twist of my head, arms, legs and feet.
A truly amazing drug. I want to send kudos to all the researchers who worked on this drug and the folks at the FDA that were just as confident as I that this is a game changer. No more wondering when your pills are going to kick in. The strip works within 15 minutes I believe (it was much faster for me at the time) and you're out the door, feeling strong and confident.
My only regret?? That I didn't follow my instincts and buy that damn Cynapsus stock. It shot up $21.35 the first day. 116%. Could kick myself.
Here is a quick link to my writings at the time of the trial:
Scroll down the first two and you'll see them.
I will try to find the video or see if I can get FB to recover it for me and then post it.
You get a standing ovation for your hard work and dedication Sunovion. I can now add another team of Super Heroes to my list.
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 Sinimet (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 Neupro 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.
Today, my new neurologist says that my medicines are the root cause of my tremor, dystonia, bradykinesia, and dyskinesia. That once I'm off all my meds I should return to normal. The question is: Will I be able to get off of everything?
I started titrating for the third time a couple of weeks ago and am down to 1.5 tabs x 4 per day = 10 tabs a day. Doing it slowly as possible. Not moving to the next drop until stable at the last. I have to get off of these but it is the same withdrawal and risks as getting off of those illicit drugs. It physical hurts. My tremor gets worse before it gets better. My body screams for more dopamine when I get too low. How will I get over the hump?
Holistic medicine, yoga, medication, exercise, CBT and EMDR work - centering myself. Trying to return to myself with Grace. This is by far the most difficult thing I've ever had to do and the only thing I have completely failed at three times.
I will NEVER GIVE UP AND NEVER GIVE IN. I must breakthrough and resume my life.
Wish me luck,
Unbelievable, but true. I was given the gift of a miracle. A miracle my brain took an entire year and a half to come to terms with.
2020. A new decade. A new chapter. A peaceful, still life. Who would have guessed that ending?
Working as a Listener with 7 Cups has been extremely rewarding for me, as well as eye opening. I am a Listener on a form of online crisis line for anyone who wants to anonymously chat about anything on their mind that is bothering them.
I've spoken to others just as anxious as me. Those that can't believe a boy doesn't want to be with them any longer (and vice-versa). Those that have no money, no food, and are sleeping on someone's couch. I've chatted with the abused, the lonely, the strange, the perverted, the university student who is struggling to meet the expectations of their parents. The dark lonely person who answers in only one word replies to keep me guessing like a game. I've also helped a great deal of people in my short tenure. Here are some of my feedback reviews:
Writing this blog to connect with others who are also lost or suffering on their life's journey was the start of allowing myself the freedom to be vulnerable and honest with myself. I struggled and fought hard against believing what others were showing me with a mirror. Coming to terms with the reality of who I am, owning up to my weaknesses while trying to still celebrate small my successes has been a giant kick in the pants. It has left me stripped down and laid bare for all to see now that my mental emotions are no longer pent up and hidden on the inside. They are in full physical view for all to see. My tremor, my neurologists tell me, are of my own making and not that of Parkinson's or any other "disease." My brain was pushed to the breaking point (as stubborn as I was to get things figured out and done) and I basically broke it. Okay, now what do I do? Where do I go? How do I fix this? In the meantime, its all about healing. My mind, body, spirit, soul. Be kind to myself. Ask others to be kind to me. Try to navigate help from the medical profession to find out how to return to a whole functioning adult human again. First step: Cognitive Behavioral Therapy...... along with sleep, exercise, and nutrition.
Since no one has taken any functional scans of my brain off of meds since 2013, I hope they are right. Beginning to titrate down once again starting today. 2 Carbidopa/levodopa tablets every 6 hours. Every 5 days drop each dose by 1/2 tab. Return to the doctor in 3 weeks. When I get too low I can't walk any longer. Doctor says I can't die from getting off my meds. Do I have any choice but to trust? Going back to Dr. Deeb at Shands Gainesville in 4 days for his final opinion.
In the meantime, I will lean on my colleagues at 7 Cups to help me through. There are hundreds of fellow Listeners who are prepared to lend me an empathetic ear as I go through this final struggle to regain my ability to cope and compose myself. The doctors say I should not tremor once off the meds. Cross your fingers they are right.
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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."