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06-10-2009, 05:17 PM | #11 | ||
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In Remembrance
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i was full of self disgust over complaining again, sure that i need to just exit, and to a large degreee i do need to. the dbs eval ball is in motion..gulp.... but for today, i'm going to smile, be positive and and see if thelma will answer a question , just a simple "how ya been?"
we miss you, paula
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paula "Time is not neutral for those who have pd or for those who will get it." |
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06-10-2009, 06:34 PM | #12 | |||
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"Thanks for this!" says: | Fiona (06-10-2009) |
06-11-2009, 12:08 PM | #13 | |||
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In Remembrance
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If you want to get really depressed go to an archive such as PIENO (?) with posts back to the mid-90s with people just like us saying similar things and being told the same pablum. Those folks are dead and if nothing changes some poor soul is going to be reading these posts in fifteen years with the same despair.
The vast majority of the time decisions are made in the organism's self interest. This is true of bacteria, PWP, scientists, and orgs. It often is unconscious and often well intentioned, but down at the core the survival of self comes first. The interests of PWP demand speed. The interests of researchers demand methodical (read "slow") repetitive work. Orgs have their own interests and those of investors are plain. Four different and competing interests. If PWP get the cure they need, the other three are history. This triad is in charge. They control the money and the debate. We PWP play nice until we are too bad off to do much. What to do? The only thing I can think of is to warn the Noobs and radicalize them now while they can show up out in the halls with cream pies.
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000. Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well. |
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"Thanks for this!" says: | GregW1 (06-14-2009) |
06-11-2009, 04:12 PM | #14 | ||
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I refuse to believe it's too late for us. We basically know that there is most likely a cure already in the GDNF treatment - maybe the catheter had to be slightly redesigned or whatever, but let's face it, the evidence is pretty much there.
So why don't we stop walking around Central Park, get everyone that can possibly come, be in our wheelchairs, our walkers, whatever, bring our caregivers, our most loud-mouthed friends, any doctors REALLY interested in helping us, get any PD organization that hasn't been cowed into submissive silence to lend their muscle behind it, and go over to the Amgen offices and refuse to leave until they talk to us. And let's use the walkathon money to take out a huge ad in the NY Times and some other remaining papers, and on their blogs, demanding that Amgen release the rights on GDNF if they don't want to go forward. And try to boycott them as much as possible until they do. Make it worldwide. I'm talking off the top of my head here. And I know these are fighting words, and a lot of people will be supercilious about them, or scared, or whatever. But I have had it with reading sad stories about the Amgen trial or all the sufferings that we all are familiar with on a daily basis, and sighing, saying "That is just SO sad..." And people who want to hide behind proper procedures on trials and so forth - well, they can streamline things to market when they feel inclined - Mirapex, Vioxx, etc. etc. AIDS patients found a way to force the appropriate hands when they needed a solution and the work to be done NOW, not later. We need to develop and speak from a culture of courage. With this disease in particular, silence and invisibility are deadly. While I think it would be best to focus on the Amgen thing because I do believe a cure is sitting right there in front of us - or beside us -while we're at it, let's have a very strong vocal campaign to reach out to all hospitals and emergency rooms and get a clear and appropriate protocol for handling PD patients, doing the necessary education of the nursing staff about the medication, and not try to win them over. Tell them the way it has to be. It's not that complicated. IF every one of our doctors called their local hospital and asked specifically the right people (and they will know who they would be or could find out) to get this information out NEXT WEEK, something could happen. So I know now some operative from Pfizer or Teva or Roche or Lilly is going to want to stealthily knock me out with a baseball bat, but you know what, I don't care. I'd rather that than go on with this crawling mentality, begging the world to do us a favor. Most of us here could educate most neurologists to a higher level than they push themselves. It's time for self-respect, clarity, and self-definition. We have a good idea of some of the things we need most. We need to stop being dazed and confused, and have the integrity and dignity to demand them. Apologizing for having PD is OVER. |
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06-11-2009, 04:33 PM | #15 | |||
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(Fiona--I was composing this while you were posting)
I too know lots of well meaning docs, researchers, scientists, mothers, fathers, etc. they STILL are not bucking the system--as long as they continue ignoring the corruption and greed in front of their faces, the status quo remains. My library shelves are filled with books titled: "Monkeys In the MIddle", Howard Brody's "Hooked: ethics, the medical profession and the pharmaceutical industry", Marcia ANgelle's "The Truth About the Drug Companies: How They Deceive Us and What to Do About It ", Merrill Goozner's "The $800 Million Pill: The Truth behind the Cost of New Drugs " J. Douglas Bremner MD, "Before you take that pill. Why the drug industry may be bad for your health" Russell Blaylock MD, "excitotoxins The taste that kills" Fran Hawthorne's "Inside the FDA: The Business and Politics Behind the Drugs We Take and the Food We Eat "Jerome Kassirer MD's "On the Take: How Medicine's Complicity with Big Business Can Endanger Your Health". I have had to stop reading these at night--the facts presented keep me sleepless into the early morning. You are able to obtain copies of these books and many more chronicling the collusion btn big pharma and medicine/research at your local library--NO One checks them out..... Fiona, I will meet you on the steps of wherever (given enough lead time to obtrain a reasonably priced airline ticket). well meaning people who do nothing to change/stand up to the corruption within their profession are not going to help us.....madelyn In addition--what happened to Andrew Grove???? I was in hope he would champion PD's causes
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In the last analysis, we see only what we are ready to see, what we have been taught to see. We eliminate and ignore everything that is not a part of our prejudices. ~ Jean-Martin Charcot The future is already here — it's just not very evenly distributed. William Gibson |
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06-11-2009, 05:21 PM | #16 | ||
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Count me in too.
Amgen's head office is in southern california.......Not too far from where I am.. I was just diagnosed at the time Amgen thing was going on and was in my own world of hallucinations, thanks to requip. I sort of know what happened, but donot know the details. Any websites that would give me an accurate picture of what happened. Amgen site??/.......may not be the best! I just sent a email to MJFF regarding NYC conference and who can/cannot attend it. I know this is not an issue of great importance when you are looking at a bigger picture of cure for PD, but I like to know. I cannot understand why researchers dont want patients to be at the meeting listening and asking questions. Paula, i was wrong, it is registration not an application. Debi, (if you are reading this post) I didnt want to ask you questions about the policy of MJFF in an open forum. But if you want to comment on it........thank you. Thanks Girija Last edited by girija; 06-11-2009 at 05:29 PM. Reason: typos |
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06-11-2009, 05:54 PM | #17 | ||
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In Remembrance
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i was fact finding for this reply and found the best citation right here. We can be hopeful about this, not clear when they will start. If it does start soon, i have thought about it, but it will be a small phase I and who knows how to qualify.
anyway, Andy Grove is busy, not sure where or doing what but picture him working on delivery systems.. This is an educated guess. back to this , NIH involvement. looks impressive. i think it says a lot about GDNF's potential. http://neurotalk.psychcentral.com/thread81930.html paula
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paula "Time is not neutral for those who have pd or for those who will get it." |
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06-11-2009, 07:32 PM | #18 | ||
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here is the website that describes Amgen's continuation of GDNF studies
Just a follow up of the patients, not a new study. I didnt see any information about the new study. http://clinicaltrials.gov/ct2/show/r...ease%22&rank=2 Girija |
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06-11-2009, 07:45 PM | #19 | ||
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Take a look at this NIH site. It shows over 150 clinical trials for PD that are ongoing or ready to start.
http://clinicaltrials.gov/ct2/result...isease%22&pg=5 I wonder how many would succeed? girija |
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06-11-2009, 08:49 PM | #20 | ||
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In Remembrance
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Thank you girija and this is where the real money is. Have you ever been to a meeting? Anyone? But people are advocating for us there. A good idea would be [iMHO] for someone to keep an eye on it. the economy? has called for PAN forums to be held every two years instead of annually. This does free up the staff to accomplish more. Katie Hood has a position in NINDS is it? NIH funding is available for business, but i can't talk details on that, not my area. lots of room for verbalizing here at NIH.
paula
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paula "Time is not neutral for those who have pd or for those who will get it." |
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