rose
Extremely helpful member
- Joined
- Mar 29, 2008
- Messages
- 2,925
- Reason
- DX MND
- Diagnosis
- 7/2008
- Country
- US
- State
- Maryland
- City
- Anytown
Shelly,
Yours are wise words! I'm glad you decided to stick around (but of course sorry that you have reason to).
What Has Happened to This Place?
- Status
Shelly,
Yours are wise words! I'm glad you decided to stick around (but of course sorry that you have reason to).
Barbie
Extremely helpful member
- Joined
- Dec 29, 2007
- Messages
- 2,681
- Reason
- Lost a loved one
- Diagnosis
- 01/2007
- Country
- US
- State
- FL
- City
- orlando
I am thinking this post should be closed.
I hate the title--Nothing has "happened" -- we are like any family you have to take the good with the bad.
nothing wrong with a rant but this one has gone on too long. somebody start a new one!
I hate the title--Nothing has "happened" -- we are like any family you have to take the good with the bad.
nothing wrong with a rant but this one has gone on too long. somebody start a new one!
siskiya
New member
- Joined
- Oct 24, 2012
- Messages
- 2
- Reason
- Friend was DX
- Country
- US
- State
- California
- City
- mt shasta
I am new and only see this forum and outsider. I really hope it does not stop. You do not see what a great community of people you have participating here? Do you know how rare it is for a person to apologize in other forums?! I sure do since I participate in many since I have a few chronic diseases and I get it how scary it is when one is first diagnosed. So i try to help those newbies.
I rarely see an apology even after the administrator reminds them that rules on those sites is to only be supportive in your replies. People never admit they were wrong in any way...just try and justify their answers or they disappear.
Here you have what seems like a great family of participators...so they reply in all kinds of different ways that reflect whom they are in their own styles. Even the replies that if I just read it by itself and think oh that is is harsh but then i read more by that person and it fits! That if very rare in forums...to be accepted for who you are instead of trying to make the group a generic 'kind' group. I think there is something very positive in that...it includes all!
So i really hope you find some more administrators so the one does not feel overwhelmed ...to lose so many so close has to be hard on one left as well a great many of you regular participators. Grief comes out differently in all of us..so i really hope that you decide to save this forum. i think it is time to move on ...help it to move on and grow..not get stuck. But all of you seem like genuinely very caring people...and each in their own way. I hope you all can see how special that is and help this forum to survive!
I rarely see an apology even after the administrator reminds them that rules on those sites is to only be supportive in your replies. People never admit they were wrong in any way...just try and justify their answers or they disappear.
Here you have what seems like a great family of participators...so they reply in all kinds of different ways that reflect whom they are in their own styles. Even the replies that if I just read it by itself and think oh that is is harsh but then i read more by that person and it fits! That if very rare in forums...to be accepted for who you are instead of trying to make the group a generic 'kind' group. I think there is something very positive in that...it includes all!
So i really hope you find some more administrators so the one does not feel overwhelmed ...to lose so many so close has to be hard on one left as well a great many of you regular participators. Grief comes out differently in all of us..so i really hope that you decide to save this forum. i think it is time to move on ...help it to move on and grow..not get stuck. But all of you seem like genuinely very caring people...and each in their own way. I hope you all can see how special that is and help this forum to survive!
skipper66
Very helpful member
- Joined
- May 20, 2012
- Messages
- 1,527
- Reason
- Lost a loved one
- Diagnosis
- 00/0000
- Country
- US
- State
- IL
- City
- SMALL TOWN IN
This thread needs to be closed. Problems have been solved in my opinion. David works hard and is fair. Emotions flare up once in awhile and we show our frustration in diferent ways and our grief. Let's close this thread and quit posting.
I had started a thread, and I had tried to explain myself and my question plainly but with detail. I wanted some simple feed back. If you knew me from your work, or town, or a friend of a friend you would see that I am not a very social person, more of a home-body. So for me to talk online is actually freeing me from some of the social conflicts you get with people you know well, that's how I see it. It is hard to talk to some family members about what is going on, especially when they see you as the tough as nails, independent, foundation they stand on. I'm not offened by a good laugh, a joke or slightly off color humor. What happed with me seemed to be personal. It felt like my integrity was in question. You know, if you think someone is pulling a fast one, then don't reply. Eventually, if enough people refuse to answer a post, the person will move on. I'm still here, I don't post often, but I still want to know what is happening to me.
From an offended persons point of view: I did not end my thread because I wanted to run away from conflict, I didn't end it because I am scamming people into feeling sorry for me, and I did not end it because I was afraid, or felt guilty for any comments I made. I ended it because it began to turn it into something other than my original post.
From an offended persons point of view: I did not end my thread because I wanted to run away from conflict, I didn't end it because I am scamming people into feeling sorry for me, and I did not end it because I was afraid, or felt guilty for any comments I made. I ended it because it began to turn it into something other than my original post.
.......which is exactly what has happened to this thread....and the originator is now nowhere to be seen.
This is a forum full of information from people who are actually living with this disease in one form or another, the sort of information you will not get from your health service can be found here. Really useful information, from real people who have, and still are dealing with the day to day effects of MND from the major issues to the miniscule details. Every post from these people counts. Whether it is kind or cruel, patronising, advising or scathing. Every post counts. It is all information to be filtered through and used according to the individual circumstances. I have read many many posts here now. I admit, I read much more than I post. There are people missing from this forum who I would love to see back. Three or four in particular who have been mentioned in other posts recently. They injected a much needed spark here. They had wit, humour, compassion, sensible advice and a down to earth attitude. Unfortunately they offended some "old timers" (a very bad phrase, off-putting to newbies) who were more disposed to (and I quote) "coddled goo". This forum is now the poorer for the loss of a very sharp wit, a great sense of humour, a beautiful writer and a wealth of information from these past members who between them covered almost every angle of this disease from sufferers to carers to bereaved. Experience. But because they showed their personalities they are no longer here. Now, I see questioners answering questions in a fairly staid forum which used to be sparky and interesting. This thread should now be closed and a Forum Form opened as this is what we are now doing. Heartbroken has stirred the pot and left it to simmer. Exactly his/her intention.
This is a forum full of information from people who are actually living with this disease in one form or another, the sort of information you will not get from your health service can be found here. Really useful information, from real people who have, and still are dealing with the day to day effects of MND from the major issues to the miniscule details. Every post from these people counts. Whether it is kind or cruel, patronising, advising or scathing. Every post counts. It is all information to be filtered through and used according to the individual circumstances. I have read many many posts here now. I admit, I read much more than I post. There are people missing from this forum who I would love to see back. Three or four in particular who have been mentioned in other posts recently. They injected a much needed spark here. They had wit, humour, compassion, sensible advice and a down to earth attitude. Unfortunately they offended some "old timers" (a very bad phrase, off-putting to newbies) who were more disposed to (and I quote) "coddled goo". This forum is now the poorer for the loss of a very sharp wit, a great sense of humour, a beautiful writer and a wealth of information from these past members who between them covered almost every angle of this disease from sufferers to carers to bereaved. Experience. But because they showed their personalities they are no longer here. Now, I see questioners answering questions in a fairly staid forum which used to be sparky and interesting. This thread should now be closed and a Forum Form opened as this is what we are now doing. Heartbroken has stirred the pot and left it to simmer. Exactly his/her intention.
HeartbrokenInNM
Member
- Joined
- Jan 20, 2012
- Messages
- 23
- Reason
- Loved one DX
- Country
- US
- State
- NM
- City
- Albuquerque
A much needed spark? We have Jerry Springer for that. People that are suffering and looking for compassion, support and an understanding community don't need the kind of "wit" that was being called out. The loss of the original ideal of this forum was one of many contributing factors that led to my wife's decision to take her own life 4 days ago. Stirring the pot? No, I knew the loss of this source of compassion would be devastating to some including my wife. I couldn't have imagined how much. Take your shots. I don't care about anything anymore.
ottawa girl
Moderator emeritus
- Joined
- Jun 14, 2012
- Messages
- 1,569
- Reason
- PALS
- Diagnosis
- 04/2012
- Country
- CA
- State
- Ontario
- City
- Ottawa
I am profoundly sorry for the loss of your wife- I can't begin to fathom what you are going through. Please, if you can, focus on the encouragement and support which have been wholeheartedly offered to you. Truly, if you re-read the posts, the goodness of our forum members far outweighs the few uncharitable remarks of the past.
Your message today is human emotion in its rawest form; I sincerely wish there was something I could do to help you. Alas, grief has its own agenda for each of us. It will lessen only after having beaten us up thus leaving us broken, weak and disoriented. A shadow of our former self.
Please, please, take just a brief moment to reflect upon one tiny good memory every day. The universe holds promise for each and everyone of us. Do not allow your sorrow to render you blind to such promise. Let it not define who you are. Let it not destroy the very essence of the love you lived and delighted in for 22 years with your Nancy. Surely, that love, if shared with others, will continue to thrive and inspire people in similar circumstances. It will nourish you, if you let it.
Although it may feel like it - you are NOT alone in your anguish. While this knowledge will not ease your pain today, it may help fill the void in the days and nights ahead. I hope so. For your sake.
Your message today is human emotion in its rawest form; I sincerely wish there was something I could do to help you. Alas, grief has its own agenda for each of us. It will lessen only after having beaten us up thus leaving us broken, weak and disoriented. A shadow of our former self.
Please, please, take just a brief moment to reflect upon one tiny good memory every day. The universe holds promise for each and everyone of us. Do not allow your sorrow to render you blind to such promise. Let it not define who you are. Let it not destroy the very essence of the love you lived and delighted in for 22 years with your Nancy. Surely, that love, if shared with others, will continue to thrive and inspire people in similar circumstances. It will nourish you, if you let it.
Although it may feel like it - you are NOT alone in your anguish. While this knowledge will not ease your pain today, it may help fill the void in the days and nights ahead. I hope so. For your sake.
HeartbrokenInNM
Member
- Joined
- Jan 20, 2012
- Messages
- 23
- Reason
- Loved one DX
- Country
- US
- State
- NM
- City
- Albuquerque
Thank you, Ottowa Girl. Your support has always been appreciated. I know that 90% of the people and posts were all the things they should have been. Even the descent I describe seems to have been short-lived and I'm glad for all. The situation I am now in I can only hope is something that no other surviving loved one ever has or ever will have to go through. I can't even properly begin the grieving process yet it would be foolhardy to think anything could stop it. Now I have to try do it in between all the horrific things that have resulted. If I told you everything you would be beyond shocked.
Though we had 22 years we should have had at least a couple more months. The masked despair that drove her to her decision will have me angry for the rest of my days and the loss of this forum was only a small part. The moral of the story is people should be more conscious of what they say and how they act. Sometimes you can't imagine the far-reaching implications. The other tenet I'm sure everyone here already knows: keep your loved ones near and dear, do not take them for granted and do not waste a moment. Things can change fast.
I can't say what the future holds for me or how many days it will matter. My life ended at the very moment Nancy's did.
Though we had 22 years we should have had at least a couple more months. The masked despair that drove her to her decision will have me angry for the rest of my days and the loss of this forum was only a small part. The moral of the story is people should be more conscious of what they say and how they act. Sometimes you can't imagine the far-reaching implications. The other tenet I'm sure everyone here already knows: keep your loved ones near and dear, do not take them for granted and do not waste a moment. Things can change fast.
I can't say what the future holds for me or how many days it will matter. My life ended at the very moment Nancy's did.
HelenL
Very helpful member
- Joined
- Dec 17, 2010
- Messages
- 1,602
- Reason
- PALS
- Country
- US
- State
- MA
- City
- Southborough
Heartbroken, I am so sorry for the loss of your beloved wife. Was she also a forum member? She was lucky to have such a caring husband.
This forum has gone through a pivitol year, with many losses and some downhill changes...many of my forum friends have passed away, and many others, disgusted by the sniping are in closed groups on fb. I haven't posted as much for those reasons, as well as my trouble typing... I see a resurgence in the quality of the posts here, and am glad to see this. This forum remains a lifeline to so many people, and despite the loss of our PALS, am still honored to have gotten to know them. Blessings everyone, let's stay strong, and compassionate.
This forum has gone through a pivitol year, with many losses and some downhill changes...many of my forum friends have passed away, and many others, disgusted by the sniping are in closed groups on fb. I haven't posted as much for those reasons, as well as my trouble typing... I see a resurgence in the quality of the posts here, and am glad to see this. This forum remains a lifeline to so many people, and despite the loss of our PALS, am still honored to have gotten to know them. Blessings everyone, let's stay strong, and compassionate.
HeartbrokenInNM
Member
- Joined
- Jan 20, 2012
- Messages
- 23
- Reason
- Loved one DX
- Country
- US
- State
- NM
- City
- Albuquerque
Helen,
Thank you for your condolences and kind words. Nancy (like myself) spent much time reading the posts here and learning what she could but she only made a couple of posts in the very early stages of her struggle. I do know that she drew strength and encouragement in the beginning and I also know that she largely abandoned this venue when the childishness became too much.
It does appear things have improved here greatly and I hope that trend continues for all who desperately need this venue. I wish you the very best.
Larry
Thank you for your condolences and kind words. Nancy (like myself) spent much time reading the posts here and learning what she could but she only made a couple of posts in the very early stages of her struggle. I do know that she drew strength and encouragement in the beginning and I also know that she largely abandoned this venue when the childishness became too much.
It does appear things have improved here greatly and I hope that trend continues for all who desperately need this venue. I wish you the very best.
Larry
poppy62
Distinguished member
- Joined
- Jul 3, 2012
- Messages
- 132
- Reason
- Lost a loved one
- Diagnosis
- 05/2012
- Country
- uk
- State
- mid glamorgan
- City
- caerphilly
I just need to say something...my own experience of this Forum has been very positive.
I have learned far more here from Pals and Cals than from any book or health professional.
I will be forever grateful to the unselfish Pals who share their experience of this rotten disease,
using energy they maybe can't afford to use to type their posts, sharing knowledge that only a person in that position would know.
They have given me insight that has enabled me to better see things from my hubby's perspective as he struggled with what was happening to him, helping me to take better care of him.
They have been very supportive to me and have always given words of encouragement and comfort.
I have had wonderful support from Cals, we are all at different stages but in the same boat.
This Forum has been a godsend for me, I noticed different tones on times, I noticed frustrations and anger but avoided those areas.
Yes I got frustrated on times, bitter, angry, upset, but found a better outlet through my blog.
This disease in all its forms is more than enough to deal with.
I am just so grateful to the amazing people here who have helped us face this rotten journey knowing we had an accessible and reliable source of information 24/7, a place to let off steam and places to pop for light entertainment too..
I have learned far more here from Pals and Cals than from any book or health professional.
I will be forever grateful to the unselfish Pals who share their experience of this rotten disease,
using energy they maybe can't afford to use to type their posts, sharing knowledge that only a person in that position would know.
They have given me insight that has enabled me to better see things from my hubby's perspective as he struggled with what was happening to him, helping me to take better care of him.
They have been very supportive to me and have always given words of encouragement and comfort.
I have had wonderful support from Cals, we are all at different stages but in the same boat.
This Forum has been a godsend for me, I noticed different tones on times, I noticed frustrations and anger but avoided those areas.
Yes I got frustrated on times, bitter, angry, upset, but found a better outlet through my blog.
This disease in all its forms is more than enough to deal with.
I am just so grateful to the amazing people here who have helped us face this rotten journey knowing we had an accessible and reliable source of information 24/7, a place to let off steam and places to pop for light entertainment too..
Miss
Very helpful member
- Joined
- Apr 11, 2010
- Messages
- 1,782
- Reason
- Lost a loved one
- Diagnosis
- 04/2010
- Country
- US
- State
- In the Land of Cotton
- City
- Way Down South
I'm with you Poppy. I would have been lost without this forum. I was so fortunate to have the advice from some incredible PALS that are now gone. I received encouragement from so many CALS during my husband's battle with ALS and afterwards. We all get frustrated and irritable sometimes. As my husband always said, "discretion is the better part of valor". Largely, I've tried to keep my personal opinions about different people to myself. A few times, it just wasn't possible. Never did I feel so alienated by anyone that I left the forum. It has been a lifeline in the darkest hours of my life.
vzandt
Senior member
- Joined
- Nov 12, 2011
- Messages
- 582
- Reason
- Lost a loved one
- Diagnosis
- 04/2010
- Country
- US
- State
- N.H.
- City
- Noneknown
I'm with you two. The forums have given me and my husband much more needed information then any doctor..hospital..clinic...or social worker. It also gave me some very understanding friends. People that know exactly what I am going through.
Compass Rose
Distinguished member
- Joined
- Jun 20, 2012
- Messages
- 133
- Reason
- Loved one DX
- Country
- US
- State
- WA
- City
- Seattle
First, Larry. I am so sorry for your loss. I can't begin to imagine what you are going through.
I like what Lorna said about every post here counting, everyone's experience and insight offered being valuable and to be sifted through as individual experience warrants. I have learned so much from the posters here and know I will continue to in the weeks and months ahead. This forum, unlike other forums that draw people together by virtue of common interests or chosen affiliations, brings together people from all walks of life who may have in common nothing but the reality of being affected by this horrible disease, which cuts across all political stripes and socioeconomic divisions. Posters here people who would probably never meet or have an affinity otherwise. There's great strength and wisdom to be drawn from this place.
Poppy, I noticed your husband just passed away. I am so sorry for your loss as well. Please accept my condolences.
But
I like what Lorna said about every post here counting, everyone's experience and insight offered being valuable and to be sifted through as individual experience warrants. I have learned so much from the posters here and know I will continue to in the weeks and months ahead. This forum, unlike other forums that draw people together by virtue of common interests or chosen affiliations, brings together people from all walks of life who may have in common nothing but the reality of being affected by this horrible disease, which cuts across all political stripes and socioeconomic divisions. Posters here people who would probably never meet or have an affinity otherwise. There's great strength and wisdom to be drawn from this place.
Poppy, I noticed your husband just passed away. I am so sorry for your loss as well. Please accept my condolences.
But
- Status
