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PARKINSON'S DISEASE FORUMS

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 
 

Parkinson's Disease Forums are a means for people with an interest in Parkinson's Disease, especially patients and their carers, to discuss matters and ask questions concerning Parkinson's Disease. Parkinson's Disease Forums differ enormously in their topics of discussion, ranging from serious medical questions to trivial matters that have nothing to do with Parkinson's Disease. The Administrators also differ greatly from forums in which there are no Moderators to forums in which the Moderators are very prone to interference and censorship. Some Administrators have genuine compassion for their members. Other Administrators are intolerant and arrogant. Their compassion is only a facade. Some forums are remarkably prolific, having a fast turnover of messages. Other forums are virtually inactive for weeks or months on end. The following are the most prominent Parkinson's Disease Forums :

 

PARKINSON'S UK

Parkinson's UK, which is in the U.K. have their own Parkinson's Disease Forum. It is one of the most active of any Parkinson's Disease forums. Being in Britain, it has a tendency towards British issues, but is still accessible to people of any nationality.  There has previously been animosity and intolerance on the forum. The Moderators are not very apparent, but delete posts often inconsistently or without good reason. For their web site, double click on Parkinson's UK.

 

PLWP2

PLWP2 was established in 2000. It deals solely with Parkinson's Disease. It presently has more members than any of the Yahoo Parkinson's Disease groups. It's Forum is quite active, and largely good natured, probably due to the checking of all messages before they are posted. The Administrators are some of the most genuine of all the Parkinson's Disease forums. As all messages are checked before being added there can occasionally be delays before appearing on the forum. For their web site, double click on PLWP2.

 

DBS SURGERY

DBS surgery was founded in 2002. It is one of the Yahoo Parkinson's Disease groups. This group is for the discussion of deep brain stimulation (DBS) surgical procedures. It also deals with other medical disorders in which DBS is used, and also matters related to Parkinson's Disease. It is a very active forum, and is usually good natured. The members are very knowledgeable about the subject, making it is very useful place for asking questions concerning DBS. For their web site, double click on DBS surgery.

 

PARKINSONS RECOVERY

Parkinsons Recovery is a new conference forum for people with Parkinson's Symptoms. Sunday Connections is an interactive chat room that is moderated by a rotating panel of hosts, most of whom have Parkinson's and have been successful in reversing their symptoms to some extent. The cost is $5 a month or $1.25 a week. Information about the new opportunity for Sunday Connections and their hosts is available at Parkinsons Recovery

 

DAILY STRENGTH

Daily Strength is an affectionate forum. Members send each other internet hugs, even to those they don't know. The site is set up so that there are set messages whereby somebody can ask another member to become a friend. There is a reasonable level of activity. For their web site, double click on Daily Strength.

 

PARKINSON'S DISEASE BLOG NETWORK

This Parkinson's Disease Forum is a collection of a large number of Parkinson's Disease blogs. It consequently centralises a wide range of information on Parkinson's Disease. It is in a Forum format so that forum members can add their comments. The viewing rates are quite high. For their web site, double click on Parkinson's Disease Blog Network

 

TOPIX

Topix deals with many issues as a news provider and for maintaining forums. They have a forum specifically for Parkinson's Disease. It is not moderated but that does not seem to be a problem. It is quite an active forum that doesn't suffer from interference by any Administrators. For their web site, double click on Topix.

 

WE MOVE

WeMove is the best web site for movement disorders generally. They have a moderated forum specifically for Parkinson's Disease. Its only negative is that it is not very active. For their web site, double click on WEMOVE.

 

Associazione Italiana Parkinsoniani (AIP)

The Associazione Italiana Parkinsoniani (AIP) is the national Parkinson's Disease organisation for Italy. It has a very active forum for Italian speakers. For their web site, double click on Associazione Italiana Parkinsoniani (AIP).

 

BRAINTALK

BrainTalk claimed to be one of the largest medical forums in the world, and certainly the largest forum for neurological disorders. However, in 2006 their web site ceased functioning for several months due to technical problems. Discussions on NeuroTalk of what had been taking place on BrainTalk made it apparent that, behind their best attempts to maintain a caring, Mother Theresa facade, BrainTalk's administration was more like the KGB. People were being readily banned for life without justification. Criticism of the Administrators or their decisions was not even allowed.  People left BrainTalk in droves. After BrainTalk's technical problems were resolved, only a small portion of their members returned. Many of their forums are largely inactive. The Administrators claimed that they would improve their ways, but their intolerance and their arrogance continued just as it had before. For their web site, double click on BrainTalk.

 

NEUROTALK

Whilst BrainTalk closed down due to technical problems, BrainTalk2 was setup in 2006 largely imitating BrainTalk. It was eventually renamed NeuroTalk. They claimed that they would not mistreat people as they had been on BrainTalk. Unfortunately over time, behind the scenes, unknown to many members, some of the Administrators of NeuroTalk have, very hypocritically, covertly become as arrogant, intolerant and interfering as their predecessors on BrainTalk. It had the greatest input of Parkinsonís Disease issues of any Parkinsonís Disease Forum. It also has a few resident theorisers of the causes and solutions to Parkinsonís Disease. The debates could be lively, but unfortunately intolerance and animosity occasionally crept in. The Administrators have rid the occasional animosity. However, they are also censoring what people add, effectively sanitizing the forum to its detriment.  They have caused the viewing rates and interest to decline enormously. For their web site, double click on NeuroTalk.

 

NATIONAL PARKINSON FOUNDATION

The National Parkinson Foundation is one of the major Parkinson's Disease organisations in the U.S.A.. They have their own Parkinson's Disease forum. Despite being based in the U.S.A. it is open to people in any country. The forum is fairly inactive. There is an unseen and cowardly Forum administrator who covertly deletes posts without explanation or good reason. There has often been intolerance and animosity on the Forum. For their web site, double click on National Parkinson Foundation.

 

PARKINSONSDISEASE

ParkinsonsDisease was founded in 1999, so it is one of the oldest Parkinson's Disease Forums. It is the one of the Yahoo Parkinson's Disease groups. There is regular activity on the Forum. Their Administrators and the Forum members appear to be good natured, but the activity has dwindled to virtually nothing. For their web site, double click on ParkinsonsDisease.

 

PARKINSN

PARKINSN  (Parkinson's Information Exchange Network) is probably the largest mailing list for Parkinson's Disease. It can also be viewed in a forum format. Founded in 1993, it is certainly the longest running, and has a large membership. However, it seems as if it might have become inactive. Members can send e-mails to this e-mail address PARKINSN@LISTSERV.UTORONTO.CA concerning Parkinson's Disease that will be passed on to all of their members. For their web site, double click on PARKINSN.

 

HEALTHBOARDS

Healthboards covers the whole range of medical disorders. It has a forum specifically for Parkinson's Disease. It is barely active. Their Moderators are some of the most interfering, arrogant and intolerant of all the Parkinson's Disease Forums. They take unjustified actions against members without notice or reason. A lot of people have been banned for the most trivial of reasons. The Moderators don't need a genuine reason. They are so ready to lie and misrepresent the facts that anything you do can be twisted so that they can ban you. For their web site, double click on Healthboards.

 

HEALING WELL

Healing Well is for a range of medical disorders. The Moderator of their Parkinsonís Disease Forum has a severe ego problem. He is interfering and resentful of anyone who knows more than him, which given how little he knows, isnít much. The Administrators are as bad. They delete any web site, no matter how useful it might be to its members, if it distracts their members away from their own forum. They are completely intolerant of criticism, and are always after money from their members. They clearly don't have their members as their first priority. There is a reasonable level of activity on the Forum, but the input is not of use.  For their web site, double click on HealingWell.

 

PATIENTS LIKE ME  

PatientsLikeMe  Parkinson's Disease administrator is unfortunately of the type that makes out how caring he is in order to entice new members, but who act selfishly and intolerantly behind the scenes. Apart from fanning the egos of the Administrator it is difficult to see why the Forum was set up, because as far as Parkinsonís Disease is concerned it serves no additional purpose. The forum administrator was recently still a student and knows little about Parkinson's Disease, but deludes himself and tries to con others in to thinking that he does. It is effectively a guinea pig club where they take all your personal details in order to be able to publish them without you knowing. Patients' information is sold to anyone who will buy it. They are clearly just making commercial use of people for their own needs. For their web site, double click on PatientsLikeMe.

 

PARKINSONS

Parkinsons was founded in 1999. It was the second largest of the Yahoo Parkinson's Disease groups. Its aim was to exchange information concerning a cure for Parkinson's Disease, primarily by using natural methods. It also encourages social interaction. However, it has become almost completely inactive.  For their web site, double click on Parkinsons.

 

 

   

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