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06-10-2009, 06:34 PM | #1 | |||
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"Thanks for this!" says: | Fiona (06-10-2009) |
06-11-2009, 12:08 PM | #2 | |||
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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) |
06-14-2009, 04:59 AM | #3 | ||
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I'm right now attending a retreat in the Laurel Mountains of western Pennsylvania at a beautiful conference center. About 50 or so PWPs and partners have been here since Friday for a program whose subject is "Living Well With PD," and whose focus this year is "nonmotor symptom of PD." We've heard how the self-help books don't help when they relegate nonmotor symptoms to 3% of content, especially since it has been known that nonmotor symptoms have a greater effect on QOL overall than the motor symptoms. Sleep problems, how to find help for the symptoms that don't interest neurologists, and how PD affects the family have been covered and discussed. I have chatted with PWPs who had never been informed that they should never quit their drugs suddenly--and how to say "no" to a neuro who wants them to do just that--and overheard someone say they could see that some of us need a psychiatrist "but I'm not that crazy yet." (I don't know if she was commenting on the general quality of psychiatrists or of PWPs, LOL.) I raised my hand at one Q&A period and suggested that a NEUROpsychiatrist is the one you want (trained to deal with brain damage). These were just some highlights, hoping you dear readers will get the idea of PWPs and partners grappling with the hard facts they may never have had information about before, or may never have had the courage to face before, but can in this very safe environment.
Here's why I'm posting in this thread: It's up to us, folks. We have very few in the medical community who understand in the way that a speaker at this program understands (Paul Short, PhD, neuropsychologist). We have to take the message to other patients, no matter what else we do, and teach them what we have learned from the sharing on this board all these years. It takes patience to explain that StaLevo has sinemet IN it and is not a new drug, and yes I take Comtan, that's in the StaLevo, too. It's difficult to mention constipation to perfect strangers, too, but there are people who think they're alone with their problem, which doctors other than a neuro are afraid to address because they don't know the PD drugs and the neuros can't see why they should treat something that belongs to the specialty of gastroenterology. We need to help these people, and not with another upbeat glossy newsletter, but with sound information (check out the PDF or MJFF websites) and personal experience that we can all relate to. Paula and all, where do you think we should go with this? Should we be making speaking engagements if we're able? Writing a book? I was in the GDNF advocates group you mentioned, and I know it wasn't enough. I'm sure of one thing: we don't need anyone's approval or cooperation or funding to advocate for ourselves and raise a tide of demand like HIV activists. Someone please invent a cure for PD apathy and lack of motivation. Or maybe create an understanding in well people so they'll take up our cause. I continue to ponder--my greatest gift and my worst flaw. Jaye |
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