What Has Happened to This Place?
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johnnyliverpool1
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lorna..delighted with what you had to say....and found out.......dont go, stay and let us have more of your common sense...anybody who can apologise is a big person in my book.........ive been told that i am illiterate. disturbing and individual it seems.....well i am thick cos i cant spell beuatiful or is it bauetiful...or buaetiful..give up......saying i am disturbing, disturbed me..so i am disturbing, i guess...an individual thou...never ...all for one and one for all thats me...trolls muckrackers ect excluded ........smile and av a laugh ...loves johnny
rose
Extremely helpful member
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So very well put!
I might add, please don't point out flaws (incidental to the subject matter) in posts if at all possible. If someone can't spell or use correct grammar or punctuation its not necessary to draw attention to it within the thread, that's just pointing out the obvious to many, and making the person who wrote it feel put down.
On the other hand, if a person posts in a manner that makes what they wrote virtually unreadable, it is appropriate to say "I can't read this, or don't have the patience to try to wade through it." Even better would be to write a note over on the poster's profile page as a visitor message.
Compass Rose
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Well put, Lorna. I completely agree. I don't see the reason to bring up this issue again when posters have moved past it unless it's to stir the pot.
I also don't see anything wrong with the off-topic forums. As Joni pointed out, they provide a little levity and can cheer people up. And no one has to read or post in them if they don't want to. Same with getting overly personal; that's each poster's choice.
Can we just have a little empathy and remember that despite people's differences, bad days, divergent viewpoints, clashing personalities, etc., everyone here is dealing with the same horrible disease? That's what really matters here.
Casey, love that quote.
I also don't see anything wrong with the off-topic forums. As Joni pointed out, they provide a little levity and can cheer people up. And no one has to read or post in them if they don't want to. Same with getting overly personal; that's each poster's choice.
Can we just have a little empathy and remember that despite people's differences, bad days, divergent viewpoints, clashing personalities, etc., everyone here is dealing with the same horrible disease? That's what really matters here.
Casey, love that quote.
siskiya
New member
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- Oct 24, 2012
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- Friend was DX
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Being a new member this is disheartening. The really great sites constantly remind people in forums that being kind and considerate is part of the agreement. That it is place for support! BUT! I have personally seen some sites where people were very hurtful, judgemental and just plain mean. I stood up for a new member in one group only to have the administrator now she must "approve" all my messages in that forum.
It was not for ALS but it was a google group.
I can say this too...that those groups lose members. One I mentioned above now only same 3 people participate because of how mean the 'click' of the old timers were to new members. Saddest part was the administrator was the meanest.
I get it that when one does not feel well our tempers can run short but taking it out on strangers just is not cool. I hope that maybe the administrator of this site just does a constant reminder on replies that our(theirs) purpose is to be supportive and respectful. If one is feeling upset about what someone said...take breath and wait hour or until the next day before you answer so you can think about it.
It was not for ALS but it was a google group.
I can say this too...that those groups lose members. One I mentioned above now only same 3 people participate because of how mean the 'click' of the old timers were to new members. Saddest part was the administrator was the meanest.
I get it that when one does not feel well our tempers can run short but taking it out on strangers just is not cool. I hope that maybe the administrator of this site just does a constant reminder on replies that our(theirs) purpose is to be supportive and respectful. If one is feeling upset about what someone said...take breath and wait hour or until the next day before you answer so you can think about it.
Again, I can only apologise if I have upset or offended anyone when I spoke of the Off Topics. I realise that forums and chatting to like minded people can be a lifeline for some. I have learned a lot since joining, so much so that I haven't had to ask any questions yet as the stickies are very informative and the chats between people here throw up advice about what the future holds for myself and my friend. Much, much more than the medical profession have prepared us for. I am seeing what this disease is doing to people at various stages and at a personal level simply by reading as many posts as I can. I have also read all the posts by trfogeyand the associated threads and I see that he was a remarkable man who believed in telling people the truth, he also had a great sense of humour. Some cutting remarks but helpfulness and compassion shone through. I have also read the Rants and Raves section and was surprised that one or two of the threads there remain for all to see. "Disgusted" and "My Rant", in my personal opinion, should be removed as they are sending out the wrong message to anyone thinking of joining this forum as they are actually naming and shaming forum members, something which would make future members think twice about before joining. These are personal attacks and I have reported them to the Moderator with the suggestions and reasons as to why I think they should be removed. I have also reported Heartbroken for his personal attacks. These are only my opinions and I apologise beforehand if they offend anyone but I always say that Honesty is the Best Policy. Thank you for taking the time to read my post, and again, I apologise if I have upset or offended anyone by my comments.
I joined this community to search for answers, and that was all I wanted, answers to what was going on with me. I did not ask to be diagnosed. I assumed this group had a large body of knowledge of their own signs and symptoms, and would simply say no that is not familiar, or you might want to check out... because they have good info. Instead I was treated like I was causing trouble and that I needed to be put in my place.
I asked questions because I have weakness, cramps, fasciculations, areflexia...all symptoms of a lower motor neuron syndrome. I never said I had ALS, I said I was told I had an axonal polyneuropathy and after years of asking and testing I still don't have a proper diagnosis. I felt bullied, and no matter how I tried to make amends, seems like I was labeled a trouble maker. There were a few who tried to act diplomatically, and I am thankful.
So then I decided that I would find posts published by those who said this, that, and the other thing. What I found is that people who said my symptoms did not fit motor neuron disease, told other people that wrote in the exact opposite, Same symptoms, opposite responses. I even had a post from a someone say that I was incapable of understanding medical literature. Other posts by this person were just a rude. I assume he finds it humorous.
So even though I do not understand the literature, there are people posting on this site who do not understand the basic principles of neuropathy. ALS causes nerve damage, the axons do die back: people with lower motor symptoms do have cramps, fatigue, weakness, areflexia, and fasciculations. The last thing to happen when the nerves completely die back will be wasting, that is when a person can no longer stand, move a hand, or breathe.
I come back to this web site now and then to see if it changes with time. It hasn't really.
I asked questions because I have weakness, cramps, fasciculations, areflexia...all symptoms of a lower motor neuron syndrome. I never said I had ALS, I said I was told I had an axonal polyneuropathy and after years of asking and testing I still don't have a proper diagnosis. I felt bullied, and no matter how I tried to make amends, seems like I was labeled a trouble maker. There were a few who tried to act diplomatically, and I am thankful.
So then I decided that I would find posts published by those who said this, that, and the other thing. What I found is that people who said my symptoms did not fit motor neuron disease, told other people that wrote in the exact opposite, Same symptoms, opposite responses. I even had a post from a someone say that I was incapable of understanding medical literature. Other posts by this person were just a rude. I assume he finds it humorous.
So even though I do not understand the literature, there are people posting on this site who do not understand the basic principles of neuropathy. ALS causes nerve damage, the axons do die back: people with lower motor symptoms do have cramps, fatigue, weakness, areflexia, and fasciculations. The last thing to happen when the nerves completely die back will be wasting, that is when a person can no longer stand, move a hand, or breathe.
I come back to this web site now and then to see if it changes with time. It hasn't really.
sunewun
Active member
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- Jun 22, 2012
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- 06/2012
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I dont have a lot to say on this forum but I do enjoy reading them and I have gotten of lot of helpful information and sometimes a laugh. Sometimes people take offense when there is none meant. Some of the threads are not for everyone and if one is offended by them, perhaps they should not read them. I do know that there have been times when some members of the forum have dealt too harshly with people who really should not be here or with people who seem to be making up illnesses in there heads. Sometimes I have felt badly for the reactions of our members but on the whole, I believe there are a really good group of people here. I think that most everyone is trying to improve the site and trying to be more positive and I really think that should include those who seem to always be so critical of others. If you want this to be a positive, encouraging site, then help make it that way.
rose
Extremely helpful member
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MyWillow,
All I can say is that I'm sorry. I have great hopes that the forum will once again become a friendlier more supportive haven.
I have noticed that some of the more recent arrogant and harsh posters appear to be random in their choices as to who they pick on. Its interesting that none of them have experienced the problem they ridicule, neither are are they caregivers for anyone with ALS, (nor were they caregivers for someone with ALS), nor do they have an ALS diagnosis, nor are they neurologists. So, its anybody's guess as to why they are answering anyone's questions.
You might consider privately contacting some members who go out of their way to shed light on peoples concerns, members like Notme , or Tokafang, who have a fairly broad knowledge base, and who certainly have enough on their plates, but still take time to help where they can. Or, send a message to Wright, he might have some insight as he is a professor in this field.
I strongly agree with what Sunewun just posted,
All I can say is that I'm sorry. I have great hopes that the forum will once again become a friendlier more supportive haven.
I have noticed that some of the more recent arrogant and harsh posters appear to be random in their choices as to who they pick on. Its interesting that none of them have experienced the problem they ridicule, neither are are they caregivers for anyone with ALS, (nor were they caregivers for someone with ALS), nor do they have an ALS diagnosis, nor are they neurologists. So, its anybody's guess as to why they are answering anyone's questions.
You might consider privately contacting some members who go out of their way to shed light on peoples concerns, members like Notme , or Tokafang, who have a fairly broad knowledge base, and who certainly have enough on their plates, but still take time to help where they can. Or, send a message to Wright, he might have some insight as he is a professor in this field.
I strongly agree with what Sunewun just posted,
johnnyliverpool1
Distinguished member
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this forum needs to have an edge to it.......there are good people on here whg say it like it is......without them the forum would be bland, boring.................is it alright to be holier than thou, yet repeatedly posting and in fact prolonging the very discord they pretend to dispise.....johnny
vzandt
Senior member
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- Nov 12, 2011
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- 04/2010
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I have to agree with Johnny. Some people have been seriously hurt because they spoke the truth...but not in the preferred language. Good people. Long term people who have helped a lot. And who could still be helping...instead of the dih helping the dih. So yes..I agree with Johnny.
I did not want anyone to feel targeted, but how do you say you feel totally misunderstood and want people to realise that is all you are saying. I tried that, and then the comments started.
I have a problem with the idea that searching for answers is wrong. I have been 4 plus years without a diagnosis because I still look to be in great shape. I still walk (waddle) around. What is happening to me is not made up to impress. Trust me it is not impressive. I am in pain from morning to night. I feel this slow death of my nerves. The only reason I know for a fact that I have a chronic axonal neuropathy is because I pushed for some answers, and will leave no stone unturned. I spent three years with the same attitude from a neurologist. He never did any of the normal tests you run to check for a neurological deficit, even though my ankle reflexes were totally gone.
I am still waiting for four new test results, ones that should have been done years ago. Perhaps my problem could have been solved a long time ago if it was not assumed that looking or sounding okay means that you are.
I just wanted to search for symptoms similar to me. Thousands of people talking about neurological damage and reading articles of a similar nature can be a good resource for information.
If you have a friend and you share a joke with them, and say the punch line is "BOY ARE YOU FAT!" Everytime you say that to each other it makes you happy and laugh hysterically. But, would you go up to a total stranger and say that to them without them knowing the joke.
I have a problem with the idea that searching for answers is wrong. I have been 4 plus years without a diagnosis because I still look to be in great shape. I still walk (waddle) around. What is happening to me is not made up to impress. Trust me it is not impressive. I am in pain from morning to night. I feel this slow death of my nerves. The only reason I know for a fact that I have a chronic axonal neuropathy is because I pushed for some answers, and will leave no stone unturned. I spent three years with the same attitude from a neurologist. He never did any of the normal tests you run to check for a neurological deficit, even though my ankle reflexes were totally gone.
I am still waiting for four new test results, ones that should have been done years ago. Perhaps my problem could have been solved a long time ago if it was not assumed that looking or sounding okay means that you are.
I just wanted to search for symptoms similar to me. Thousands of people talking about neurological damage and reading articles of a similar nature can be a good resource for information.
If you have a friend and you share a joke with them, and say the punch line is "BOY ARE YOU FAT!" Everytime you say that to each other it makes you happy and laugh hysterically. But, would you go up to a total stranger and say that to them without them knowing the joke.
johnnyliverpool1
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sometimes the best help is to be harsh.....sometimes the worst help is to be all nicey nicey......the i will scratch your back if you scratch mine, is not genuine friendship... enough from me now.....johnny
I wrote a reply to this post by Johnny and also the post by Willow. When I clicked Post quick reply I received the following " You do not have permission to perform this action. Please refresh the page and login before trying again". I WAS logged in. I followed the instructions and my post was deleted. Was this anything to do with the fact that my post referred in part to the members of this forum who are now "missing" ? Surely not?
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