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Parkinson's Disease Tulip

I Get the Feeling this thread is for educated people only.

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Unread 02-03-2013, 10:01 PM   #1
vlhperry
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Default I Get the Feeling this thread is for educated people only.

I only joined this forum a few weeks ago. I get the feeling I do not qualify to post here because I have a college education in Information Management and not Holistic nutrition, Medicine or Advocation. Do the people here only believe advocating their personal beliefs or is it to be personnaly supportive to fellow disease sufferers? I know I have no theories on how to understand the disease.

I was only looking to find a few friends not **** people off. You have the right to make this forum anything you like. If I am not looking for a cure just let me know and I will leave you to your former peaceful interaction.

Dianna
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Unread 02-03-2013, 11:56 PM   #2
reverett123
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Dianna-
I'm speaking only for myself here, but there is no requirement of any sort to take part in this forum. That is the official line. Unfortunately, you and I both know that things go deeper than that. Part of it is a "birds of a feather" thing where people are attracted to others who they share something with. That dosn't get you banned or anything, but it might make you feel out of place at times. It isn't because you fail some sort of test. It isn't because I don't like you. It is just that we have little in common and so we feel uncomfortable. Like being on a first date, it can be painful. A second part of it is that, well, there are some pretty intelligent people on here. Smart people need places to hang out, too. You can't expect them to fake it and act other than they are, So, again, while no one would ask you to leave, you might feel unciomfortable and it be no one's fault.

There is another thing to be aware of here as well. One that is not too obvious. NeuroTalk is a relatively old community and there is a history here. Ten years or so ago it was known as BrainTalk. It was a thriving community and in those days quite unique. A lot of isolated and very ill people depended on it just to make life bearable. Then one morning, we got up and logged on - and BrainTalk was gone. A server had crashed without a backup. But far worse was the fact that the SOB who "owned" the site didn't care and had no intention of even reopening the site. Months went by and nothing changed. Finally, a few of us took things into our own hands and struck out into cyberspace. Thanks to the kindness of DocJohn (his own family having been touched by PD not long before) we found a home. And, as an aside, a certain Canadian actor hung around under an assumed name for awhile

I'm not trying to impress you with our history. Although it is pretty neat. What I am really trying to say is that most of the people on here don't go back that far and just wandered in from the storm sometime in the last ten years, just like you. Take a little time to learn the community's definition of good manners, just as you would in a real world setting. We are nerds, geeks, scientists, and drunks. And we are pretty nice folks who will welcome you in.





Quote:
Originally Posted by Dianna_Wood View Post
I only joined this forum a few weeks ago. I get the feeling I do not qualify to post here because I have a college education in Information Management and not Holistic nutrition, Medicine or Advocation. Do the people here only believe advocating their personal beliefs or is it to be personnaly supportive to fellow disease sufferers? I know I have no theories on how to understand the disease.

I was only looking to find a few friends not **** people off. You have the right to make this forum anything you like. If I am not looking for a cure just let me know and I will leave you to your former peaceful interaction.

Dianna
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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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Unread 02-04-2013, 02:56 AM   #3
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Dianna, I for one enjoy reading pretty much every post that I can find. I like people and am always amazed at the hints I find here about, for example, cutting a pill in half just before bed time, taking ginsing, etc. Please keep posting! You know more than you ever imagined.

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Unread 02-04-2013, 04:15 AM   #4
Bob Dawson
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Dianna,
i am one of the resident psychos kept hidden in the attic when guests arrive. the mods tell me they have had many complaints about me from all the school teachers and chamber of commerce. i am bad 4 the tourist industry
the only thing we all share is the disease. that;s what makes it unusual - we would not give each other the time of day if we did not all have PD
but we do all have PD so we have to put up with each other

there are christians and holistic or anti pharma andd trree huggeers and science logicians and soocialists and obama supporter and NRA and everbody has PD no matter who they are

its the crazy people took over the asylum
no one on this site can claim to be normal
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Unread 02-04-2013, 04:32 AM   #5
made it up
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Quote:
Originally Posted by Dianna_Wood View Post
I only joined this forum a few weeks ago. I get the feeling I do not qualify to post here because I have a college education in Information Management and not Holistic nutrition, Medicine or Advocation. Do the people here only believe advocating their personal beliefs or is it to be personnaly supportive to fellow disease sufferers? I know I have no theories on how to understand the disease.

I was only looking to find a few friends not **** people off. You have the right to make this forum anything you like. If I am not looking for a cure just let me know and I will leave you to your former peaceful interaction.

Dianna
Dianna,
Please stay.
Apologies if you think we aren't enjoying your posts.
Lee
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Unread 02-04-2013, 07:52 AM   #6
lindylanka
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Dianna, this is a great place to learn and to make friends, please keep posting, you won't always get replies, but you will always be read. As Rick said a lot of us have been here a while, some of us long enough to not need to reply, and a few getting to the point where they no longer do so, but still drop in here to see how people are doing. New people are welcome, and questions, answers, personal experiences, and informative posts are all welcome too. Keep coming, and give things time, I felt just like you, ten years ago. Now I am so glad that I kept coming here. Not only has it been a great ride but the company has been good natured too. Advocacy has changed my life, but to start off with I was a newbie with PD wanting answers that my medical people were not giving, and good information. It is a personal choice, and if it is not for you that is fine too. Some of the most interesting things come from people bringing fresh minds to how we view PD, and fresh voices to the debate.

Welcome

Lindy
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Unread 02-04-2013, 08:57 AM   #7
soccertese
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this forum is what you want to make of it, i think the only taboo subjects are politics or trying to sell something.

all the "easy" stuff has been discussed, were're all hoping for a "cure" or better treatment, long timers have often educated themselves so subjects tend to be a little technical just as the world gets more technical. 10 years ago there were no pd gene therapy trials or affordable dna analysis to even discuss. a big deal then was a new agonist or maybe a CO-Q10 trial or maybe stem cells.

i don't understand a lot of what is posted here, your're not alone.

but please continue posting.
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Unread 02-04-2013, 09:21 AM   #8
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Quote:
Originally Posted by Dianna_Wood View Post
I only joined this forum a few weeks ago. I get the feeling I do not qualify to post here because I have a college education in Information Management and not Holistic nutrition, Medicine or Advocation. Do the people here only believe advocating their personal beliefs or is it to be personnaly supportive to fellow disease sufferers? I know I have no theories on how to understand the disease.

I was only looking to find a few friends not **** people off. You have the right to make this forum anything you like. If I am not looking for a cure just let me know and I will leave you to your former peaceful interaction.

Dianna
Hi Dianna --please dont feel that way its just a mixed bag of people that some are very educated and do have medical backgrounds. Others like me just patients looking for information and support. I like the diversity of people and recvd-- both emotional support and well as some very good and helpful advice on my medical conditions. In time I hope you find it has the same benefits for you. I have yet to find anyone being mean or not showing alot of heart. I think you should feel free express whatever is on your mind without hesitation. Glad you joined!!
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Unread 02-04-2013, 09:45 AM   #9
moondaughter
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Default metaphorically speaking

Dianna,

I dreamed last night that I was chosen to lead a class in french cuisine and first served everyone an exquisite cherry-cream cheese pastry- but then therre were none left for me and was I ever upset - internally i blamed the circumstance on everyone else and wanted to announce and explain and blaame this problem oon parkinsons when the truth was that it was me that shorted myself. I wanted to be glorified for the gift of those pastries when i didn't make them - just served them.
I'm sharing this wiitth you because reading your post i get tthe feeling that you too feel unacknowledged - but this yyou must fiirst do for yourself ! feeling special isn't all its cracked up to be lest you miss out on the pastries
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Unread 02-04-2013, 10:48 AM   #10
michael123
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I was only looking to find a few friends not **** people off. You have the right to make this forum anything you like. If I am not looking for a cure just let me know and I will leave you to your former peaceful interaction.

Dianna[/quote]


You sound a little snippy but we can cut you some slack because we all can relate to this devil inside of us and want to snap on occasion. But that doesn't mean you don't have a real need to connect. I too work in Information Technology but that doesn't define me and does not determine what I get out of this Forum. There is a lot I do not understand so I move on to other topics. If you want a Club House atmosphere there are other forums elsewhere that may give you a sense of fellowship. But those may have less "meat" so to speak. Bottom line it is up to you to find what you need. Good luck
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