life continues

[harley]

well, guess what? as we sit here in front of our puters communicating with other people who are sitting in front of their computers... life is still goin on. i have come to the realization that pd hasnt changed me that much. it has enhanced my already feisty nature, and humbled me.. but the humility wouldnt take hold unless there was something i needed to be humbled by. i have changed. not by pd.. but by what i have allowed it to do.

you know, the fear of losing who we are to this blasted disease is there because we dont look at the whole picture. who we are is not deter
mined by pd. we are who we are because God created us. scuze meif i offend anyone, but i am a christian and i speak my beliefs. whether you are or not, think of it this way. do you really determine what happens in your life? if so.. why do you have pd?

reason i write this is because i am letting go of many things that i thought made up who i am. selling my home, gifting my ocean property. getting everything out of my name for security reasons for future assista nce. parkiejam dot com is no more. may even sell my bike. these things do not make up who i am. they were a part of my life... but now i move on.

i will be working on the newsletter, the beat, which can be accessed by going to www.parkiejam.net and clicking on the words.. the beat... and when i get tired , i will take a break. i will reflect. i will relax..or at least search for the meaning of relaxing. why create environments that are stressed filled? there are enough already hanging around if we chose to go that route.


when i got banned from bt1, it devasted me.. how dare they?? it was an injustice! swore untill i got tired of hearing myself swear, fought it tooth and nail.. let it take over. then i realized... time to look at this differently. bt1 was a part of my life for many years, but it wasnt who i was. things have changed, life goes on. Time to let go of anger and bitterness.. life is too valuable to waste precious time. God is showing me something and i am listening... and i will cling to my old saying...

"I have Parkinsons Disease, Parkinsons Disease does NOT have me"

[The Godfather]

It's easy to get around being wrongly banned on BrainTalk 1. When it returns :

1. Register using a different name. Even slight variations such as Harlee or Harley 2 are enough. You can use something more anonymous if you need to such as Donald Duck or Abraham Lincoln, but then just add Harley as your signature. People that know you will guess who you are anyway.

2. Register using a different e-mail address. Free e-mail addresses can be readily obtained at Yahoo https://login.yahoo.com/config/mail by clicking on Sign Up on the right hand side of the page.

3. If there is a malicious Moderator that is really intent on blocking you they will also block your IP address as well, which is what identifies your computer. For most people this is no problem because their IP address changes every time you login. Even if they block your entire ISP, that's no problem either, as you can log in via a Proxy server such as Unipeak http://www.unipeak.com/ On the Unipeak site just type in the web site address of Brain Talk 1 brain.hastypastry.net/forums/ and you will be in to the BrainTalk 1 web site to register with your newly acquired Yahoo e-mail address.

This only takes two minutes. You can reverse what they did more quickly than they did it. With a bit of know how you will be unbannable on BT1. You shouldn't have been upset. It's them that should have been upset. They were in the wrong. They are the ones that should have been banned.

Alternatively, when or if BT1 returns, you could instead stay with BrainTalk 2 which is administered with more of a sense of reason, respect and tolerance. Very much unlike BT1 which behind their Oh aren't we so caring and compassionate facade was at times run like a cross between the CIA and the KGB.

Bona Sera

[harley]

the thing is.. why should i go back under a different identity? i have my dignity still, and i believe in who i am and what I stand for... i dont think i will play hide and seek with that. if they dont like it, i dont wanna be a part of it anyways. to be honest, this forum is pretty cool. they were wrong in banning me and several others. i have a website and have banned people for different reasons. it is a hard choice to make and in some cases i have been wrong and apologized publicly and offered membership back.

the people in bt1 have not talked at all to me since i was banned. though i emailed them and asked explaination. this to me shows 1 or 2 things... they are hung up in the power trip and dont want to admit they screwed up, or they just flat out dont care. either way, i dont think i want to be a part of a system where dictatorship overrules common sense.

[The Godfather]

harley 2 would still be you. They so readily and wrongly banned so many people that they probably don't even remember banning you. You and thousands of others are just a username to them. It's the members, not some of the more arrogant BT1 Moderators that you were there for.

Most of the people on BT1 still don't know about BT2 - which is basically the same place with a very different administration. BT1 certainly aren't informing anyone about BT2, which is what they would do if they had any real concern for their members instead of themselves.

However, all the BT1 members will no doubt eventually find out about BT2 when or if BT1 revives itself in some form. You may then see a constant drift from the at times dictatorial and arrogant BT1 over to the more reasonable environment of BT2. So instead of you going back to BT1, maybe BT1 will come over here to you !

[harley]

then, by all means.. lets get the word out about bt2.. after so many were banned.. does anyone think it will ever be the same in bt1?

[rosebud]

I was sure it was a joke when I heard that you and CS and (can't recall who the third person was...ibby??)were banned for such a trivial matter. I think when John Lester left the scene, things on the inside lane changed and we had no clue. It would be very interesting to know what actually went on, but just before it crashed the new guy was going berserk. I was on the scene that last night and reading posts that seconds later were deleted... We will probably never know what the real story was, but there was a definite parting of the ways in the mindset of before and after John Lester. It occurred to me that John held the whole thing together with string and chewing gum (a true computer whiz) and I wondered why such a huge and useful website would be so poorly funded by it's parent MGH. Perhaps it began as something much smaller and grew into an unexpected elephant that MGH was not really interested in perpetuating. Pure speculation... This Universe should certainly be big enough for all of us. It remains to be seen if BT1 will actually return, and I am still skepticle. Just like the tangible world, the internet has its share of Looney Tunes, and over time we get to recognize them and have the freedom to avoid or engage in discussion with them. Nobody has a gun held to their head forcing them to post... and giving someone the right to censor at will what THEY don't like seems very contrary to the concept of free speech, free thought and free will. Sometimes I tune in just for the lively discussion. Sometimes I tune out because I think someone is being an idiot. It's my computer and I control the keys. I think I'm a big enough girl to do that, and would extend the same courtesy to anyone with enough know how to get onto the site in the first place. I consider many of you my friends and like many of you went through a certain withdrawl when BT1 got flushed out to sea. While this is the internet and we have to be mindful of posting anything that could leave us open to evil forces in the universe, I would suggest that if you want to continue with the community that exists here, its a good idea to take the initiative to connect with some like minded people and develop a one on one communication with them so you can be traced down should we suffer the same fate twice. There are many MIA's from BT1 that have not turned up yet...Teresa, CS, Birte, one of the "mama's", Vicky, oleander, to name a few. I will fequent the site that is likley to encourage free thought...as long as it's in agreement with my free thought that is;)

[stevem53]

This whole deal has been a mess..I still feel like we've been shipwrecked and are still looking for survivors..Sometimes I feel like Im on Gilligans Island

My thoughts are..to name a few..like rosebud mentioned, there are so many MIA's, more than I can count, and not just newcomers..I often wonder after all this time if many of the newcomers just gave up on the deal, and there were quite a few over the past year..

I wasnt one bit surprised that BT crashed and burned again..Over the past 6-8 months prior to the crash, it was the slowest responding website I visited, and the more software updates they did, the worse it seemed to get..There were many members complaining about BT's performance..some had trouble logging on..others with dial up were waiting for a month of Sundays to get on the forums, only to get booted repeatedly..and I took notice of the many complaints that went unanswered, and unsolved

What is front and center on my mind right now, and I hope Im not jumping the gun here, but, where do we go from here?..Do we stay..(if we even can)..or do we go when BT comes back online?..It would be nice to piece the community back together, but I dont feel good about leaving the banned members behind, especially because they are good long time members who have contributed an abundance to the community, and guilty of nothing in my eyes..victims of injustice is a better way of descibing it..Im doing alot of thinking out loud here, but this is basically what is on my mind at the moment

[harley]

personally, i would prefer a fresh start here. after the crap that happened at bt1. i dont think those of us that were banned would ever post again, even if they did let us back in. whats wrong with it here? comfortable, i like it.

[Thelma]

Before I went into the hospital I received the nicest email I had ever in my life received. It gave me just the boost I needed for those long hard 6 weeks and will keep me up when i get down for as long as it takes.

Now I read that this kind individual was banned.

CS if you are out there don't let it effect you as the world needs people like you and if there is any justice you will be back.

Someone please tell me what happened. If you want we can do it by email at thelmas@shaw.ca if you like.

I lost a lot of things off of my computer while I was away and all of my sddresses as my great-grandaughter must of had a ball on it

There has just got to be an end to all of these things happening and if I have to move a mountain to get to John I will.

Harley don't feel so bad about this it seems you are only one of many that I know of that have been treated unfairly.

Take care all this soon will pass

[harley]

i dont mind at all telling what happened. i recieved info that a fellow parkie...Lorrie Gossman.. was in dire need of help. Her husband died in a fire that engulfed their home and she lost everything. I posted her address and asked people to send donations her way. there was only one or two responses before the thread was deleted for "solicitation". i posted again asking how this was solicitation. i even emailed moderator 4 asking how ... no response from them. there was a suggestion that possibly it was because i offered no valid proof of the incident. this was followed by (forgive me, but i forget the wonderful person who did this) a whole bunch of newspaper articles posted as proof of the tragedy. after these, i posted her address again and then found myself banned. i managed to get back in to read that apparently cs had come to my defense and was also banned, and the person who mposted the newspaper articles was also banned. the entire thread had been altered leaving very little of the actual postings. afterwards, my husband signed into the chatroom to defend me and was banned, and michael johnston also confronted moderator 4 and was banned.

the good news is that Lorrie did get alot of needed help and wrote a long thank you letter in yahoos parkiejam.

[The Godfather]

This must be the worst reason for banning there has ever been on a medical forum.

[Stitcher]

I have only one other forum/message board I visit. If there are more, would someone please post the links to them. I was a daily...sometimes hourly...attendee in the Dumpster...seems like eons ago, in my first dx years.

The one I visit is Edge of the Forest. It is small in attendance, but it is there. I try to post news items on that board too. Harley, I think you probably have visited there in the past...maybe long ago.
http://edgechat.suddenlaunch.com/

[stevem53]

i dont mind at all telling what happened. i recieved info that a fellow parkie...Lorrie Gossman.. was in dire need of help. Her husband died in a fire that engulfed their home and she lost everything. I posted her address and asked people to send donations her way. there was only one or two responses before the thread was deleted for "solicitation". i posted again asking how this was solicitation. i even emailed moderator 4 asking how ... no response from them. there was a suggestion that possibly it was because i offered no valid proof of the incident. this was followed by (forgive me, but i forget the wonderful person who did this) a whole bunch of newspaper articles posted as proof of the tragedy. after these, i posted her address again and then found myself banned. i managed to get back in to read that apparently cs had come to my defense and was also banned, and the person who mposted the newspaper articles was also banned. the entire thread had been altered leaving very little of the actual postings. afterwards, my husband signed into the chatroom to defend me and was banned, and michael johnston also confronted moderator 4 and was banned.

the good news is that Lorrie did get alot of needed help and wrote a long thank you letter in yahoos parkiejam.


The person who posted the newspaper articles must have been "Yam" because that is the other person who got banned..Somebody told me this and I dont recall who..I also remember seeing the articles but dont remember who posted them, but I do know that Yam got banned also..Some memory Ive got..:confused:

[harley]

yes, thank you steve.. it was yam

[mamafigure]

CS was banned? He was the first person who reached out to help me when I first came to BT1. I can't even begin to thank him.

[rosebud]

Steve: you would have been the most aware of all the posters on the BT1 forum because you monitored them weekly...(I was always impressed that you were such a good host). Can we post notices on other websites making sure people can follow links to get to us here? I suffer from a bad case of delayed development when it comes to anything technological so I'm clueless.

I agree that I would not be comfortable in a community where some friends were not welcome. I think the sad truth is we've lost something we cannot get back even if it is restored as a site. It will either evolve into something else or die a natural death. It was a mainstay of my life because of the format of being able to drop in and leave a comment whenever I had the time or inclination.

I don't like the idea of censorship (within reason), and I certainly think that the banning of 3 regulars for what I would call no reason at all shows a certain meglomania running the show. I personally do not have time to get involved with a variety of websites and chat rooms...this is my forum of choice. If this is where your all hanging out, then I'm hanging out here too.

[stevem53]

Rosebud..I feel the same way, and it involves 3 veteran members..They could get back in there as Keith says, and Im sure that would be a piece of cake and take all but 5 minutes time to accomplish, but as Harley said, this is about dignity and injustice..

So it seems everyone who I know of so far is ok with the idea of staying here, assuming that Dr John will accomodate us..and I have a feeling that he is probably going to do just that..Then the next task at hand is gathering up as much of the community as we can, and getting a feel for how the others feel about this, as I am not comfortable with making the decision for everyone..number one because its not fair..and number two because they might have me walk the plank..:D ..A mutiny I tell ya!..:confused: ..So I think the task at hand is for those of us who are here, to seek out the others somehow, and I guess posting links is a good a place as any to start..Waiting untill BT-1 is back up..if it ever is would be another..It would seem that more folks would have found their way over here, but it hasnt happened yet..I found this by doing a google search of Braintalk, and found the link to get me here

Another thing that has been on my mind is the fact that BT had "another" major and prolonged crash, that nobody thought would happen again so soon and even though we are here in a place where we have contact with some of our community..Things are very far from being back to normal..Not even close..This mess has scattered and broken up the community, and it will take some time to put humpty-dumpty back together again..

Thoughts and ideas welcomed

[reverett123]

1- Use your signature to promote alternative forums. Think of it as a bumpersticker.
2- Put your own email address there too so people can get you if things crash. Set up an expendable one at Yahoo or Hotmail so you can ditch it if spammers strike.
3- You might want to visit http://www.forums4free.co.uk/forums/?mforum=neurotalk
Neurotalk is an experimental forum that I set up in a half-hour on forums4free. You will find that the interface is almost identical to BT. If needed, anyone can set up a BT-like environment. The trick is getting people to come.

Prepare in advance. -Rick

[The Godfather]

WEMOVE have a major PD Forum. I've added the web site of the PD page of BrainTalk2 explaining what has happened concerning BT1 and BT2, as some BT refugees have probably turned up there at some point.

Adding this web site to the PD page of Wikipedia would also probably get to some of the former members.

Whilst on BT I was contacted by over a hundred members. I keep copies of all e-mails. They will have their e-mail addresses on. So when I get time I'll notify them of this site.

However, by far your best advert and redirecting of BT refugees to BT2 would be on BT1 itself if or when it returns, because at some point most of the former members would be checking it out.

[harley]

im workin on tryin to get parkiejam back to something>> what i dont know yet>> but something>>> lol

[K Hamilton]

Steve:

I figure on going to whichever one gets together the most old members, providing that that forum takes the appropriate action

BT1 should apologize to the victims of unfair banning and take measures to assure that it never happens again, and also put together some sort of policy requiring whoever is running the show or the appropriate moderator to respond o an email within 48 hours.

and/or

BT2 should get sufficient and sufficiently trained moderators on board, with the same rules as BT1 so far as the use of moderators is concerned. Let the other differences stand. While things seem to have stabilized on BT2, there have been some highly intemperate and hurtful posts on some of the forums. A forum for sharing experiences, questions and concerns needs above all to be a safe place, where one can share openly and even awkwardly without having their words rammed down their throats.

The job description of a moderator should be to moderate, not to judge. Telling people to cool it or face judgement; calming down arguments; generally trying to keep things on a civil tone and moving along.

Maybe a single moderator should not be able to ban; have banning be possible only when two moderators agree on the action. This would reduce bannings, almost eliminate the unfair bannings, and would take a lot of heat off of the moderators.

Also, when things get out of control and a thread is deleted or someone is banned, a tracer should be left so that everyone else knows what happened. If this is supposed to be a community, then we should know why our friends and neighbors have disappeared.