I am thinking this will likely be my last post, unless something dramatic shakes out. Remember LTC CHESTY PULLER'S, USMC, comment, Battle of the Chosin Resvoir, North Korea, 1950. "The bas..... are in front of us and at our rear. They are on our right flank and our left flank. They won't get away from us this time!" Despite being vastly out numbered, LTC Puller, the most decorated US marine in history, broke out and escaped to fight another day. US and South Korean forces casualties numbered over 7,000. Another 7,000 were recorded during the brutal winter that followed. Don't ever forget to thank a veteran for their service. It doesn't cost you a cent.
Parkinson's Disease has got me totally surrounded. Diagnosed in 2010, my neurologist believes I contracted PD at least 5 years prior. I use my walker 24/7, balance is nonexistent 90% of the time. Like others before me, every medication loses its effectiveness over time. I refuse to surrender and continue to help out around the house. I do what I can, I know it's not much. My wife and I have three children and six fantastic grandchildren. We celebrated 50 years of marriage back in May. She is my#1 caregiver and has a very challenging job and does it without regret. I'm forever grateful.
The smartest people on the planet are hard at work trying to find a cure. PD however is not giving up anything that may lead to a cure. Some people have suggested PD may be more than one disease. PD is pitching a No Hitter, some say a Perfect Game.
My own personal opinion is to push the envelope a little harder and further. If we continue to opt for a risk free solution is that ever going to be attainable? Give me a good plan today! We'll tweak it and learn more as we travel down that road of experience. Meanwhile the Perfect Plan remains on the drawing board waiting for more review. Whoever said - "A good plan executed now is worth way more than a perfect plan executed next month" I believe that was Douglas MacArthur or George S Patton. I took some risky alternative medicine, TASIGNA in the past. Early on in my Parkinson's journey i made a vow, if i couldn't be cured, i would do everything i could to make it easier for the next person who contracted this disease. I've written about this positive experience several times. TASIGNA is a Tyrosine Kinase Inhibitor (TKI). It was developed by Novartis specifically for patients diagnosed with a blood cancer named Chronic Myloid Leukemia (CML), that was resistant to Gleevec another TKI drug manufactured by Novartis. Please follow the science and give it time to sink in. This is definitely deep stuff!!
Gleevec was the first targeted therapy drug in the world. It destroyed cancer cells and left healthy cells intact. Before Gleevec the five year survival rate for CML was only 22%. Gleevec FDA approval (2001) is the shortest on record. TASIGNA was approved in 2007. CML survival rate for 10 years is 83%.
Last history lesson I promise. Back in the day, 1950s and 60s, most medical professionals were convinced cancer was NOT caused by genetic changes in the human chromosome. That rationale was so pervasive, you were ridiculed if you discussed it. Two researchers at the University of Pennsylvania discovered that CML was genetically caused. Peter Newell, MD and David Hungerford, PHD were interested in the human chromosome and intensely studied it. I'm no expert on chromosomes, I can't even spell it! Humans have 23 chromosome pairs for a total of 46. You want more information, you are on your own!
They noticed one gene stuck out farther than the others. They didn't have great optics back then, but that only intrigued them more. They noticed that was not present in all patients, only those diagnosed with CML. The abnormal gene was labeled the Philadelphia chromosome. Hungerford and Noelle turned medical science completely around and proved for the first time- yes- cancer can be genetically acquired!!
My only purpose in bringing this up is, the experts at that time were solidly convinced it couldn't be. I will turn over every stone in the river looking for the best bait I can find, a small crab. The greatest mariners in the world at one time were convinced the WORLD WAS FLAT!!
I was so confident after that first trial that TASIGNA was the one:
1. Sleeping through the night after 2nd week.
2.lost my PD shuffle after 3-4 weeks.
3. Up and down stairs normally no half or baby steps.
4. LEVODOPA REDUCTION FROM 2400 MG DAILY DOWN TO 1400 MG SUSTAINED. SOME DAYS 1,000 MG, THERE WERE 800 EVEN 600, LOWEST 400 MG
5. MY DOSING SCHEDULE HAS ALWAYS BEEN EVERY 3 HOURS STARTING AT 0500. AT THE TIME I GOT ON THE TASIGNA TRIAL I WAS GETTING ONLY 2.5 HOURS ON MY GOOD DAYS. MORE LIKE 2 HOURS!! AFTER LESS THAN 4 MONTHS, MAYBE 3 MONTHS I WAS ROUTINELY DOING 4-5 HOURS. MY LONGEST TIME BETWEEN DOSES WAS 15 HOURS!!!
My neurologist is a smart man. He has seen many patients afflicted with PD. If he says they are all placebo effects WOW!! I never knew placebo effects were that strong!
I laid off doing another 9 innings with this Parkinson's player. Trouble is I haven't been able to find a doctor who would prescribe TASIGNA let alone HBOT.
I will try to get something going. I'll report any significant actions to all of you. Stay strong and remember to keep moving!! BTW one of the hottest topics in oncology circles now are Tyrosine Kinase Inhibitors. The mechanism is not understood, but many cancers are going bye bye. I always believed in the Georgetown group.
Thank you all for your kind words over the years. PWP YOU ARE A LOT STRONGER THAN YOU KNOW!!
Added 9/6 Wed
I didn't realize we added so many new people confronting this disease. I have severe dyskenesia, so if I suddenly disappear I will return!
I was on TASIGNA two different times. First time was Jun 1, 2017 till April 20, 2018, a total 323 days. 200 mg capsule once daily on an empty stomach.
The 2nd time was ??. Need to find my journal first. A few noteworthy events, 150 mg capsule, once daily on an empty stomach. This was a private patient basis with Georgetown University Medical Center. I think this was 100 +/- days. I had an extra heart beat that showed up in my monthly screening. TASIGNA has a history of sudden death due to a condition called QT PROLONGATION. The manufacturer Novartis failed to promptly disclose this. The FDA forced Novartis to put a BLACK BOX WARNING on all containers of TASIGNA sold in the USA! I was immediately contacted and advised to stop TASIGNA immediately. Unfortunately my cardiologist was on vacation. When he reviewed the EKG four weeks later, he said the extra heart beat wasn't a proble. He further added it's a common occurrence, many people have them.
TOO LATE DAMAGE DONE
Off label testimonials for Tasigna 
