Parkinson's Disease Tulip


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Old 06-18-2007, 10:28 AM #21
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Default OH Dear...

Why does a relatively straightforward post end up in an argument, time after time. We end up arguing about nothing. At least, nothing connected to the topic, everything from poor Americans and Rich Europeans, to which countries do the most research. Information we know is copied and pasted by the acre, adding nothing to the subject under discussion. eg
I said,
"dopamine can't pass the BBB, so in our medication, we take levodopa which can penetrate the BBB, and is converted to dopamine in the brain" simply as part of a concise introduction to the concept. I kept it short since I know we all know it.
CTenaLuisse says,
"Levodopa-carbidopa is a combination of two drugs, levodopa and carbidopa. Levodopa-carbidopa is used in the treatment of Parkinson's disease. Parkinson's disease is believed to be related to low levels of dopamine in certain parts of the brain. When levodopa is taken orally, it crosses through the "blood-brain barrier." Once it crosses, it is converted to dopamine. The resulting increase in brain dopamine concentrations is believed to improve nerve conduction and assist the movement disorders in Parkinson disease. Carbidopa does not cross the blood-brain barrier. Carbidopa is added to the levodopa to prevent the breakdown of levodopa before it crosses into the brain. The addition of carbidopa allows lower doses of levodopa to be used. This reduces the risk of side effects from levodopa such as nausea and vomiting. This combination medicine was approved"

Isn't this what I have just said, but in fewer words.
I know all about carbidopa and how it inhibits CO2 breaking off a carboxyl group, this is an argument for the sake of one.
As I said, I don't want an argument, and if we can't have threads where, like in a good debate, we stick to the subject, I don't want a part in it.
Shame, we just can't have a debate, as soon as the arguments start the thread is dead. I give up.
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Old 06-18-2007, 02:01 PM #22
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Default Perhaps we could agree....

....on an approach where the originator of a thread could act as a defacto mini-moderator and ask that a poster get back to the subject at hand. It is frustrating to have one's thread hi-jacked, even when the intention is good. Perhaps a few sentences serving as a directional sign or "fork" would preserve the topic and still allow other spinoffs. After all, we do have unlimited space. While I didn't intend for it to be a model of anything, the way I did the bit about analogies is a fork in the thread. This also would let anyone with no interest skip it. (Again, mine is a good example of that as well )

Comments?
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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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Old 06-18-2007, 04:40 PM #23
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Doc John and Chemar and Kimmy

I too am fed up with the fact that some posts are going off the subjects into a mish mash of accusatory postings

Is there not a way you John or either of you mods intevene and help make it better for us all.

Is there any way we could have a post put in by one person who has a theory that needs help to understand and prove and have it closed to all save that persons needs.

Then another post could accompany it and that person would have the authority to add what ever post he or she wanted to the original to keep it on track. That way we could have the best of two worlds.

I for one do want to see Ron follow up on his theory and keep it on track as to where it will eventually lead. It is an interesting theory and one that could be of benefit but not in the medium we use here.

What say all of you?

The post heading could read perhaps as follows eg

Ron Hutton and the theory of BBB permability from both sides number one

And the second the same only number two.

Then we could post in two as we find the literature without having to determine for ourselves what and if it is on target for post number one. that decision would be for the holder [for want of a better word] of the original posting.

That would take from me in particular a lot of tension in posting that which I am not sure of.

It would also allow for more postings in general and a lot less arguements and apologies.

The only thing that would be required is that the postings taken to number one should be word for word and not changed by anyone.

What say you mods we have made a difference in many cases that have been for the good of many.

This one could be as well.

Worth thinking and talking to Doc John about?
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Old 06-18-2007, 05:49 PM #24
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Default vBulletin is very powerful software...

...and allows a lot of control levels. It should be easy to assign moderator status to a single thread to allow the original poster to at least control the individual posts. Maybe instead of simply erasing them they could be shunted to an "inappropriate post" thread by the originator. That's giving a lot of power to one person, but it should take care of itself in that anyone who abused it would quickly lose my interest at least. The present way really does not lend itself to the type of discussion that some of us want. There is room here for all of us but we do need a little organizing.
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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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Old 06-18-2007, 06:18 PM #25
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Exclamation

Quote:
Originally Posted by Ronhutton View Post
Why does a relatively straightforward post end up in an argument, time after time. We end up arguing about nothing. At least, nothing connected to the topic, everything from poor Americans and Rich Europeans, to which countries do the most research. Information we know is copied and pasted by the acre, adding nothing to the subject under discussion.
As I said, I don't want an argument, and if we can't have threads where, like in a good debate, we stick to the subject, I don't want a part in it.
Shame, we just can't have a debate, as soon as the arguments start the thread is dead. I give up.
Ron
I couldnt agree more!!!

We are going to have to try for a bit more of a disciplined approach here!
This forum has a wealth of knowledge, ideas etc to share, and yet so often, when these really important discussions take place, they degenerate into just what Ron has described here! And then members who have info to share or those that really need it, get put off and leave or lurk.

Hijacking threads is simply NOT ok! Period!!

The last thing we want to do here is play referee ..... so, it really is up to everyone here how we move forward. Hopefully, the essence of these debates will not be lost in the petty stuff

Perhaps we can have a trial run where, when one of these threads gets taken so OT that it is detracting from the subject under discussion, that the OT posts get reported to us immediately so we can step in and try to steer things back on topic. Similarly whenever a discussion takes on personal negativity. We can then either remove offending posts, and /or start new threads for OT ones to merge to.

Should other discussions arise from the subject, but that are not directly pertaining to it...PLEASE start a new thread...dont highjack the existing one

hoping we can get this important discussion back on track now..............
Cheri
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Old 06-18-2007, 08:03 PM #26
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Chemar

the posts are not being hyjacked as you put it. The people are just not staying on target, and that includes me too and the only way you can help is to let the one who started it take charge of it.

There is no way you can be the deciding voice, in particular the post Ron is trying to bring into being. neither you nor I are capable of doing so and you know my ego lol

But you could close his post and let him ask for the ones he wants from two added his original number one and we could follow it by reading and if we wanted to post to it we could do it on mumber two and if he wanted to respond he could ask you to take it to one and would respond there.

This is the only way I can see it being done. Look at the Als forum and see the hassle there when those who haven't got anything in common with the members start posting. No one responds and it dies. But that is because the people there are too seriously hampered by Als and don't waste their time on the small talk.

Here is different there is a mixture of both and all want to be heard but then the din from going off the subject is too much and no one reads let alone tries to do the research asked for.

Don't get yourself in a hassle over this one post as I think Ron understands and would like to try this. He's probably still in bed now but I am sure he will check in and respond whether he agrees or not.

Would be nice to have you ask about doing it.

Anybody lurking please join in and let us hear what you think about this. You have been reading here for awhile now and I imagine you could tell us a few things we haven't learned. Feel free to voice your opinion. But remember I am very soft and cuddly and hurt real easy so be kind and just say it easy.

Rolling on the floor laughing my HEAD off

See Chemar I am being good............... lol lol lol lol lol lol
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Old 06-18-2007, 08:21 PM #27
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Default How about sub-forums?

Sometime back I asked DocJohn about using a sub-forum for addressing a more formal approach to a question. Chermar, why not let us create sub-forums for topics that interest us. If no one participates then they can be deleted. If they prove valuable they can be archived. And the rest of the community can rock along. Let the guy initiateing it moderate it.
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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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Old 06-18-2007, 08:53 PM #28
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Quote:
Thelma said:

the posts are not being hyjacked as you put it. The people are just not staying on target, and that includes me too and the only way you can help is to let the one who started it take charge of it.
Conversations flow and can go in many directions, yes. Then there are instances where topics are interrupted and takes the thread away from the OT altogether, or for the most part.

When what you described happens and the post becomes more about that than the OT, that is a hijack and can certainly feel that way for the OP.

I'm open to suggestions in regards to sub-forums, most certainly. However, these sub-forums would be subject to the guidelines and moderated by the moderators of the forum and administrators. We can't, in any way that I see or know about, give individuals moderating "powers" for specific threads...only specific forums. Making all members of a forum a moderator in the forum isn't an option that I see.

I do agree that discussions here can be very pointed, and that a deviation from the OT can take a subject way off path. I would like to discuss our options to work this, but at the same time, I keep in mind that if everyone would post according to the existing guidelines, and asking one's self if their post is on topic with the OT, there would be few issues. Also, keeping in mind that when we post publicly, not everyone is going to agree with us. As long as disagreement doesn't include attack or hijack, that's OK. When we post publicly, we can expect responses within the guidelines. Just as we count on the guidelines being upheld, posters count on being able to post within those same guidelines.

If we are accepting of our fellow posters within the guidelines for the site as well as keep our own posting within the same guidelines, threads and discussions can generally run very smoothly.

Again, I'm open to suggestions for the issues in the forum and in regards to sub-forums. Don't hesitate to PM me.

Thanks,

KD
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Old 06-18-2007, 09:08 PM #29
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Post do you think I am a highjacker!? LOL? *smile

no way to put another point in a thread to question the validity of certain ideas -

I know on the net -people read things in a different voice -
I was simply showing my hypothesis?
hoping dear Ron - could back his -theory better?
not angry at all
my name is not even close to being Jack...

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Old 06-18-2007, 11:34 PM #30
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Default Ron

I simpatize with your being upset, but I stopped doing so when I realized that:

1. Particicipants in these forums (including lurkers) are but a small fraction of the total parkie universe. Most non-forum participants have a "real" life or fight every day just to stay alive, or are too old or to infirm to bother with computers. But quite a few might have pretty decent lives in spite of PD but still cannot be bothered with computers. And probably a few - no one knows how many - reversed PD at their very first symptoms, by sheer luck of having found the right treatment, serendipitously, or with a doctor who knew something we don't, such as the blood pressure drug, or the PAS anti TBC drug halting PD.
Who knows how many therapies that defy our conventional way of looking at PD there may be out there that we will never know about, because those usually cured early of any malady return quickly to real life, have no notion of the inferno they avoided and of course did not become "professional" parkies like us. Besides, what work in early stages may become innefective with any progression of the disease.
But these cases of early disease halting/reversal might very well be our greatest loss.

2. Of that small fraction that comes here habitually (including lurkers) an even smaller fraction ever post anything at all,

3. Of the smaller fraction that ever post at all, an even smaller fraction post very frequently,

4. Of this very small number of frequent posters, the following subgroups are easily picked out;

5. Most have a definitive obsessive agenda.

Some examples:

6.There are poor souls who by personality or circumstances, have these forums as their only, albeit vicarious conection to other human beings. They look for hand holding, dislike "search for cures" threads that run too long and derail them to free hands to hold hers/his.
You can feel how they turn on their pc as soon as they wake up to connect with the only link to humanity they have.

7. There are the obsessive researchers, ever cluttering the forums with their latest findings, sometimes in bursts of productivity, with several posts in succesion to their name. They seem to like to rub on everybodies'faces the thought of "see, I am the fastest finder of each and every article ever published", whether worthwhile or not. On the other hand they seeem very smart at searching. However, their posting "diahrrea", mostly inconsecuential, pushes quickly and faster, further and further back any interesting thread that may have captured the attention and imagination of the majority. You can almost hear them saying "hey, look at me ! I'm the star here, why are you paying attention to somebody/something else"

8. Then, there are the self proclaimed "white rats" of experimental research. Some are zanier than others, Some or perhaps one seems to be high on l-dopa or agonists all the time, and instead of gambling their house away, they or he seems to have been able to channel their obsession in a way that may, just may, surprise us all with the "find" one of these days, so I am inclined to be benevolent with this type, as long as he doesn't get too pushy with his projects on other people or get started on to too many searches, without ever concluding any.

9. Then, there are the "I know exactly which research/researchers are on the right track" type, which seems to annoy most, while she might be right ! Who knows, but her manners are not conducive at all to sympathy but rather elicit that old desire to give her a good spank and tell her to shut up.

10. Then, there are the types that float around, very pliable, quick to praise her symptoms improvement and recommending it to any who will listen, openly or by pm, of some new drug her trusted and glorified neurologist prescribed her, only to come back rather soon, after dropping the new wonder drug, dissapointed at some bad side effects she was too quick to wait for.

11. Then, there are the true "english" gentlemen and ladies, ever so well mannered and balanced in their approaches. A "balm" to the spirit of weary souls that we are. No more need be said about them.

12. Then, there are the "lightning stars". Seemengly extremely bright people who ask an incredible thought provoking question, or drop an excellent idea, and leave, never to be seen again.

13. Then, there is.............but no, 13 types is just enough for now.
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