I'm recently diagnosed and have not started any PD meds, though my neurologist says Sinemet would probably help my symptoms. I'm not having terrible or disruptive symptoms, just an annoying leg tremor, fatigue and stiffness. I see a PT and exercise, which really helps with the stiffness. I'm postponing meds because I think I'd like to try to get into a clinical trial at OHSU in Portland, Oregon (where I live).
One of the studies I'm interested in is for a tyrosine kinase inhibitor, K0706. Does anyone here know much about the use of kinase inhibitors for PD? Does this seem like a worthwhile study? Any thoughts?
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Why do you want to get involved with studies on medications when all you have to do is to start to do regular FAST WALKING, every second day for a maximum of one hour. Within two yaers you will be free of PD and your body will be a lot fitteer.
I took medication for over 2 years and it did NOTHING!
I started FAST WALKING, because my wife was doing it and she had overcome her health problems and she begged me to do the same, I agreed to do it, reluctantly becasue, what can fast walking do for PD?
WEll! The answer to that is that my PD disappeared after two years of fast walking every second day and I have stayed clear for the past 30 yarrs. I am now 89 years old and am still fit.
Hey there. I like your plan of staving off taking Sinamet as long as possible (or maybe not at all) and looking into a trial. I’ve been taking Sinamet for about nine months and it has enabled me to walk, and at the same time I can take fewer doses of Sinamet if I walk almost every day. John Pepper has the right idea. Fast walking. Plus I would add that if my digestive system works well every day I do way better. It can determine the course of my day. So I pay keen and kind attention to what my body is asking for each day. By the way I am 13 years into my PD diagnosis. Though I think I could’ve been diagnosed years earlier.
I would definitely be interested in participating trial. Partly because by doing so you advance the science to all of our benefit and partly because I consider new c-abl inhibitors to be the most promising medium term possible treatment for parkinson's. When I was diagnosed 6 years ago I held off starting medication to participate in the SPARK Trial Ignore John Pepper. He doesn't have parkinson's disease, and doesn't understand the subject but fills the web with posts like that. Exercise, including fast walking, is probably the best single thing you can do to manage PD, but it's not going to reverse it. John Pepper probably has essential tremor.
Thanks for your response! If I don't get accepted to participate in the K0706 trial, I am going to try to get into the SPARX3 study (they are recruiting at OHSU right now). Even before I was diagnosed, I started a running (well, jogging, really) program, along with physical therapy. Now that I'm being treated at OHSU's Movement Disorder Program, I'll be seeing a new PT who specializes in PD. I'm excited about that. I know that exercise and PT are very very helpful, but probably not gonna reverse or cure me! I'm still very interested in drug trials if there's a possibility of slowing the progression of this disease.
Yes, thanks. On their website, OHSU still has it listed as recruiting. But that's okay, there are other trials coming up. I'm screening this week for a trial of IkT-148009.
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