Hello People With Parkinson's (PWP). I started this post two weeks ago. It wasn't worth the effort so I deleted it. I was hurting at the tim, my levodopa tank was running on fumes. I reminded myself that if I couldn't be cured I would try to make it easier for the next person. I am in my 18th year battling this major league illness. I have always played the odds, and I know I'm winning. My neuro doesn't refer to my condition as Stage 4 or5, he simply calls it advanced Parkinson's. I also made a vow to never give up. PWP I know how difficult that can be. Life is still good, in fact it is very good. We have three children and six grandchildren. I would like to shake the person's hand who said "if I knew grandchildren were going to be this much fun, i would have had them first! " My wife has always been the prettiest girl in the room! Definitely need to tell her that more often. We celebrated our 50th wedding anniversary last week!!! Hey old man Parkinson's you didn't win that one did you? I'm betting you all have won many battles too! My son and I completed our MLB STADIUM TOUR in 2019. We visited every MLB ballpark and saw a game at each one. It took us 18 years and we logged 36,000 +/- miles to visit 31 ballparks to complete our journey. Some years we would do 2-3 ballparks, other years we didn't do any. There are 30 MLB ballparks, so how did we finish with 31? You MLB aficionados will figure it out. That's another one in your loss column old man Parkinson!! The Toronto Blue Jays don't play in a ballpark or a stadium, they play at the Rogers Centre. Figure that one out?!#$
I have severe dyskenesia at times that I cannot control. It happens with out warning. I've lost texts of 500 + words when it hits me. I will finish what I started. I will be completely honest, but I am opinionated. I mean no disrespect to anyone or any group or institution. I request the health unlocked admin personnel to not censor or take down any of my comments. I'm not an expert on what I am about to write. Criticize all you want. To all the dedicated researchers who are working tirelessly to put this disease in the rear view mirror, THANK YOU FOR ALL YOUR EFFORTS. To all the doctors and support staff, thank you for keeping us moving. PWP know how difficult it is for you to see our decline and not be able to slow it down or stop it. Finally to the amazing people that make it all happen --- our CARE GIVERS !! Most care givers are family members, but all of you are ANGELS from HEAVEN!! Most of us wouldn't be here without you and that's a fact!!
TASIGNA was approved by the FDA in 2010. It is a 2nd generation cancer drug for patients
diagnosed with Chronic Myloid Leukemia (CML), Gleevec was the first and was FDA pproved in 2001, after the shortest FDA review in history --- 2.5 months!! Both drugs were developed and marketed by Novartis, both are tyrosine kinase inhibitors-- more on that later. Before Gleevec came out a CML diagnosis was a death sentence. I will not get into statistics, but Gleevec more than tripled CML survival rates. TASIGNA was developed for CML patients who did not have a favorable response to Gleevec. Both of these medications are considered targeted therapy medications. In fact Gleevec was the first targeted therapy drug on the planet!! A targeted therapy medication mainly kills cancer cells. Chemo therapy destroys both healthy and cancerous cells.
In the 1950 - 60s most medical professionals were of the opinion that cancers were not of genetic origin. Two researchers at the University of Pennsylvania shared an interest in the human chromosome structure. Dr Peter Newell, MD and Dr Paul Hungerford, PhD, were the first to discover a shortened chromosome in blood samples from CML patients. They made their discovery in 1960. It would be 40 + years for medical technology to catch up and develop a drug to treat CML.
Tyrosine kinases are enzymes that act on proteins and give them directions at the cellular level. They tell many proteins when to start and when to stop their metabolic process. There is enough evidence that suggests TKIs ARE NOT TELLING certain proteins to shut down! So the "faucet " winds up in the on position! I never knew this until a few days ago, but some cancers leave their calling cards in the form of high amounts of tyrosine kinases observed at the cancer site. The oncology response has been to provide the sick patient with tyrosine kinase inhibitors!!!
ARE TYROSINE KINASES RESPONSIBLE???
I always believed that TASIGNA ( generic Nilotinib) could be a game changer for treating PD. This was based on my experience taking TASIGNA off label for PD. The following positive changes I consider the most noteworthy:
1. After only five days I was sleeping through the night.
2. I was mowing, my lawn in one day after 20 days of medication. I didn't have the strength, even back then (2017).
3. PWP are always "wound up ", PD puts all of your muscles in to a constant state of flex. Within the first two weeks I could feel my body limbering up. That PD stiffness was a memory.
4. I was consistently dosing every three hours beginning at 5 am, a daily total of eight times, 24/7. There were times when I was sleeping I would miss a dose, this was usually the 11 pm and the 2 am dosing times. Before TASIGNA there were times when I couldn't last 3 hours till my next dose. There were many times when I could skip my levodopa - I DIDN'T NEED IT!!! While on TASIGNA, I once went 15 hours between doses!!
5. When I started on TASIGNA, my dose was 300 mg levodopa every three hours. That's a total of 2400 mg daily. There were days when I took only 800 mg levodopa, one day I only took 500 mg!!
6. I lost my sense of smell many years ago. It came back!
For the past three years or so I haven't been as active surfing the net running down trials/studies. To be honest I became a little disillusioned by the FDA procedure for medication approval. Our biggest supporter (not mentioning names ) tried to muscle in on an active trial. JMO, so I'm leaving it there.
So is there some evidence that suggests TKIs may be helpful in our battle with PD?
MarionP thank you for what could be the best news that PWP have been patiently waiting for such a long time!
Must reads see MarionP, Jeffrey and park bear links
Vitamin B1 dose for an early PD patient?
The Effect of Curcumin on Idiopathic Parkinson Disease: A Clinical and Skin Biopsy Study
Dr Espay - The missing ingredient for successful disease modification in PD - Recording available
Irregular platelets in PD
