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skipper66

Very helpful member
Joined
May 20, 2012
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1,527
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
IL
City
SMALL TOWN IN
This is supposed to be a support forum in which we help and listen too each other. Posts that say there is No Hope and that ALS is a death sentence are not a bit helpful to any of us. We are already scared too death about this horrible disease. We are worried or depressed enough seeing what it is doing to us or our loved one's. We need ideas from comfortable clothing, devices, and things to help our PALS. Most of all we need prayers and Hope. Many people on here have lost their PALS but stay on here to help support everyone else. They teach us how to value each day and how to keep our PALS comfortable. They understand what were go through and are there for us. Sometimes, we just need a good laugh. I truly understand grief and have experienced it with the loss of my mother. But, making other people feel your pain isn't going to help you heal and is of no benefit to others. Kim
 
Amen Skipper!
 
That is one of the best posts I have read here Skipper66, thank you very much. :)
 
Skipper...so true. You go girl:)
 
Good reminder, Kim. While I haven't seen a post like the one you're describing, I'd qualify your wise words by noting that while in the throws of grief or fear, an otherwise positive person could feel such hopelessness and we should allow them the space to express this, as this can bee therapeutic. For those who are consistently negative or otherwise disruptive, we should report their offensive posts to the moderator. Thankfully, I believe positivity truly prevails on this forum, and I'm glad people have such a great place to get information and support.
 
Like most people here, I also much prefer good news, happy, supportive, informative & encouraging posts. I'm content in my little world, viewing life through rose coloured glasses. Fact is, life isn't always rosy.

I suspect the negative post to which you have taken exception is that of Haningon1. That most recent post disturbed me as well. I am hurt because, beyond the succinct presentation, I felt this man's anguish. It is exceedingly raw. Let's remember, he too is a victim of this catastrophic disease and as such he also needs and deserves a safe place to release his feelings. Is his expression of grief and bedside manner everyone's cup of tea? Surely not. But I believe the best way we can help him is not by stifling his negative views with more negative views, but rather by responding with compassion. We can hopefully show him the way back to the life I imagine he once enjoyed, and is desperately seeking.

There are stages to grief. Anger is one of them. Anger ain't pretty. It's messy and bloody but it's part of the human experience. I believe if we demonstrate the flip side of anger, little by little, post by post, his anger will dissipate, little by little, post by post.

I am confident (yep the rose coloured glasses are back on) that with our help, Hangingon1 will in due course, learn to let go of the the pain and hang on to the joy he once clearly shared with his departed wife. Positive reinforcement and alternate options to anger leave no blood on the floor and celebrate the best in everyone.
 
skipper I am really tired of it too. Thanks for saying it out loud.
 
Maybe we should read between the lines before taking the words to heart. Some people numb their anguish with alcohol or other mood altering substances. I think if you read through a few of this grieving members posts you might conclude like I have that he at time flounders and loses his way and is not himself. I will say a prayer for him. He has been through a lot.

Laurel
 
Maybe we should read between the lines before taking the words to heart. Some people numb their anguish with alcohol or other mood altering substances. I think if you read through a few of this grieving members posts you might conclude like I have that he at time flounders and loses his way and is not himself. I will say a prayer for him. He has been through a lot.

Laurel

You are so smart Laurel- What a great observation- Hadn't thought of that!
 
Skipper66 was VERY careful to not name names or call individual's out. Is this member (or members as we do not know from Skippers post) not still active? Still participating on this forum? To talk about them, like they are not present and not surely reading these posts is a bit on the insensitive side, to say the least. An individual has now been named and speculated that they are quite likely an angry drunk! Surely simply agreeing with Skipper would have been sufficient?
 
Thank you Skipper for well written post.

OGirl, I do not believe this was referenced to Hanging.

And might I say, very well written response, Johnnysgal. I do have to remind my little brain, that this is a public domain.
 
The original intent of this forum, was to inform and support people regarding ALL issues relating to ALS. As Ottawa girl put it, "life is not always rosy". While Skipper didn't name names, her second sentence was nearly a direct quote (not too difficult to figure out). Pain, heartache and grief, can also cause one to flounder, and become uncensored at times. Hangingon performed extreme caregiving--mostly by himself, up close and personal--for his wife of many years. He was knee deep in the trenches, and has now lost the wife he loved so much. I have sometimes been shocked by this kind of bluntness, but to be honest, as a full-time CALS for nearly three years, I understand. Intense caregiving can cause one to lose the "filters" they'd normally have.

It has been discussed many times in the past couple of months, how to handle posts and members you don't care for. It is often useful to read some of a long time member's prior posts, to learn a little more about them. Instead, a whole new thread about "negativity" was started. Maybe the "ignore" button, or "report" button should have just been implemented. ALS is not a pretty disease, especially when combined with FTD. Anyone who has been a long-time CALS, with minimal opportunity to even leave the house, needs a place to speak openly sometimes; where the other members supposedly understand. Unfortunately, there are not a lot of CALS in this group anymore. Such a shame, as they have so much knowledge they could be sharing.

And yes, expressing one's pain and grief CAN be healing. It helps those who are in yet another "place", where others don't understand what they're going through. Just one more word--COMPASSION.

Laura
 
With a lot of effort and only because supplied with a name I was able to back track and find a post that seems to apply. It's still just a guess on my part if it is what prompted this thread.

In and of itself it's hard to find fault. It is unfortunately bluntly truthful but equally horribly misplaced as a reply to a family member of a newly diagnosed person seeking specific help. Where it remains it is hardly compassionate or appropriate.

This is where a moderator quickly steps in to easily remedy the situation by moving that post to the appropriate place. Leaving the thread to not be further dragged off course with more misplaced comments not directed at specific help to the original poster yet providing a place for all those with or touched by ALS to express themselves.
 
Johnnysgal, you are unable to find the truly horrific and offensive posts because the moderators did step in and delete them. I do find it shocking that, after the death of his wife, this individual is still visiting the forum and posting such callous comments. I think that this must be the result of some outside influence such as alcohol, depression, who knows. It's not a reaction of "normal" grieving. This has always been the type of comment made by this individual. You would be appalled if you read some of the deleted posts and threads.
 
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Yes Johnnysgal, prior to the passing of three moderators, that post would have been dealt with appropriately in a very timely manner. The forum in it's current state, is being self-monitored for the most part. Everyone just has to try to be as kind, and helpful as possible. Think before typing. Gain a better understanding of the forum as a whole (including it's history). Try to help newer people, while at the same time, avoid shining an unnecessary spotlight onto others. If one sees a post such as Skipper pointed out, time and emotional energy might be better spent, by maybe posting something useful/helpful for the original poster. You know--try and turn it around for the good.

CALS and PALS who spend the better part of every day with ALS, usually check out "New Posts" on a regular basis. I had no problem recalling this post, without going back to look.

There is one, overworked owner/moderator for these Forums. After Al passed (moderator), many longstanding members gave it all they had to keep it on track. But alas, a lot of them have left for good. It is up to the people who are still here, to make or break this place.
 
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