Old 01-28-2016, 04:03 PM #31 (permalink)
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Default Re: Here goes...

I speak only for myself, and am on new medication that I am trying to
Get used to, that
makes me very groogy, and affects my clarity of thought.
And please excuse typos and typing style problems, if you may,

I am drawn to this post unfortunately,
When I can tell I should be avoiding it.

A few random feelings I am getting from this thread. In no particular order,
Just summoned up the best I can considering the circumstances of the med.
They are valid and legitimate for me, perhaps not for anyone
else.

- I feel that semi character assassinations are occurring in some
Of these posts .

- I feel that an extremely small number of posters here are being hypocritical.

- I feel that every single member of the forum is a Unique Individual, each with own
Particular exact form of ALS, and own unique symptoms and progression.
I also feel each has his/her own unique personality, coping techniques, life story, circumstances
which they are living under, while struggling in the battle of a lifetime.

- I feel persons here are being attacked because they may not post in the way OTHERS see fit.

- I Feel I have always had a respect for the GROUP of us, pulled together through
this monstrous adversity we are trying to deal with. At least I've done the best I
can in that aspect.
While I may not always agree with somrthing someone says, or while I
personally may have difficulty seeing where they are coming from, I respect, and or try
to respect, that that is their own unique viewpoint, and is as valid as anyone else's.
I am sure I have fallen down in places.

- everyone deals with this disease in their own way. Each member expresses themselves
In their own way. Each and every member contributes something meaningful to this
Forum, whether it be knowledge, caring, support, helpfulness, or raising questions to ponder, or asking
For advice re ALS symptoms and problems, or providing answers to those questions.
Each person's input is valuable.
Maybe they don't always hit the nail right on the head.
Maybe they sometimes fall short. Both in regards to what they would hope for themselves to
be expressing, as well as how other members see their post.

- are we all to be robots with one approved style of posting?

- are some of less less valuable than others because of how we "share" our
experience of having a terminal disease?

- are we to examine, and re-examine each post we write to be sure it fits
The proscribed formula?

- I don't know what's going on here in this thread, but I personally
come away with a sense of people being judged, people being criticized,
People accusing other people of things, just because they post a certain way.

- I personally see a tearing apArt of the fabric of the forum here.

- we are all dying. Or desperately doing our best to care for a loved one
who is dying, from this wretched disease. Why the criticism against others for
Whatever way they are able to communicate in light of this desperation?

- I feel a true sadness at what just some of the posters are saying here.

- unfortunately, just some of what has been said here has had the effect of my
Feeling a sense of dismay, and bitterness.
And, it is no ones fault but my own, but it was after reading some of the
Permeating sentiment in this thread that I made an ugly remark in the DIHALS
Section. I take full responsibility.
It is no ones fault but my own.

- I know I have more thoughts on what's happening here, but I have rambled on far too
Long, and know I've bn repetitive, and have beaten my opinions into the ground.
I accept full responsibility for the wandering and off track style of this post, but I would like
to at least say as well, I feel some of this is due to the disjointed ness and grogginess my new med is causing me to have.
But it is still my own responsibility.

I lay myself open and vulnerable to all attacks.
Go for the throat.(Unfortunately, in my humble opinion, that's what an exceedingly small numberof the posters are doing here.)
I will not fight back.
I have surrendered a long time ago.

In sadness, disappointment, and confusion
To see how this thread has been unfolding.
Laura.
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Old 01-28-2016, 06:45 PM #32 (permalink)
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Default Re: Here goes...

Oh my. I love you all, each and every unique one of you. I miss you when you disappear, and rejoice when you chime in. We don't all have to agree. What I wouldn't give for everyone here to trust each other to the point that no one ever took offense. LOL...I can't even get that within my own loving family. I hope we can disagree and still be a family.

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Old 01-28-2016, 08:15 PM #33 (permalink)
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Default Re: Here goes...

A Dihals chose to add to this thread. The post was moved unedited to his dihals thread you may view it there ( help1127)
It was moved because of the rule that dihals are not to post out of their own subforum This is one of the most common reasons for reported threads initiated by members so I believe it to be the continued wish of the majority?
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Old 01-28-2016, 08:54 PM #34 (permalink)
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Default Re: Here goes...

Yes thanks Nikki, I think it is important and that particular DIHALSer has posted out of his thread before and been asked not to ...

If there are around 30,000 PALS in the US, 1900 in Australia, and I don't know figures for CA and UK, then we could expect daily to have new members join as it's not like we have even a tiny percentage of those rare folk here now.

I hope this thread only ends up helping us all in the forum to work together and support each other.


Tillie


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Old 01-29-2016, 02:35 AM #35 (permalink)
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Default Re: Here goes...

Nikki, I agree also with DIHALSers posting only in that subforum until and unless they are diagnosed. Thank you for keeping up with this.
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Old 01-29-2016, 01:46 PM #36 (permalink)
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Default Re: Here goes...

I honor everyone's opinion here. Please, if a member (or me) really bothers you with his, her, or my opinion, posts or Threads... use your "Ignore" option on your User CP button. (Top of the page first on the left in the blue bar) Then those who appeal to your want of this Forum will be more suited to your liking.

I believe, my opinion, a true Forum is opinion of all. We have had members who have since passed who were very outspoken and often offensive in their replies to others. Again, there is an easy way to avoid being upset with posts or threads you know will bother you. Finally, who knows... maybe there are two, three, six, a dozen or a silent majority who may agree with what I may post. I try to be honest, ask questions, (why not... it's a Forum?) and I'd like to see some of the sub-Forums kept honest too. Remember... this Forum is "no proof" required. Asking questions is the only tool.
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Old 01-29-2016, 10:56 PM #37 (permalink)
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Default Re: Here goes...

I'm relatively new and first came here during my lengthy diagnostic process. I think I remember a few posters being skeptical and rightly so.

Regarding the moderators, I think they do so much more than moderating/replying to posts. Both Laurie and Nikki have sent me PMs that helped me more than most of my health care providers have done. For that I am so very grateful.

I have a background of teaching online. When you don't see a person face-to-face, communication lacks the non-verbal and expression cues in a regular conversation/encounter. To further compound matters, some PALS have progressed so that it is very difficult to communicate in this forum. I'm convinced they still feel part of the family, even if their CALS read posts to them or update them on their friends.

Just like any family or group of friends, there are different personalities and communication styles. We also don't know what any person has gone through on that particular day. I choose to give each person a "pass" if I find something offensive or not to my taste. I've been ignored on threads but I try not to let it get me down. Thank goodness for this forum!

I would like to see more interaction among PALS but I realize that might not be possible for obvious reasons.

Kim
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Old 02-20-2016, 09:59 AM #38 (permalink)
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Default Re: Here goes...

I just want to say that when I first joined this forum, I waited almost 2 months to post anything. It was very emotional for me, and I did not know exactly what to write. Once I started, the floodgates opened I guess. I provided a lot of detail about my husbands medical history and progression, doubts, questions, etc. I really did write too much. I had visited the forum to read many, many posts before I added my first post. I noticed that many members/modertors asked for detail (regarding diagnosis and testing in particular) so I did include all of that. I was not even sure if I was allowed to post under the newly diagnosed forum (since it is my husband who is the PAL), etc. It is still a learning process for me. I appreciate the wisdom of the moderators and I personally believe that without their help and guidance these forums would become a free-for-all. Just my opinion, for what it is worth.
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Old 02-20-2016, 01:45 PM #39 (permalink)
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Default Re: Here goes...

Buckhorn, maybe sometime you could post your first name. I agree with your support of the Moderators. Yes, they work hard to prevent, as you worded it, "a free for all". There is area that concerns me that could, and can easily become somewhat of a "free for all" without questions. Thank you for your informative and revealing threads and posts. CALS can often relate some of the true story, heartache, struggle, hardship and "in the trenches" better than their PALS. For some... understandably.
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Old 02-20-2016, 02:09 PM #40 (permalink)
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Default Re: Here goes...

on the other hand bucky, there is no obligation to post your first name either...

Some people need a little privacy in that respect, I know I didn't want people I knew to realise it was me posting when Chris was alive. A first name doesn't always give it all away, and yet it may be that last identifier if that's important.

To others it's not an issue at all, so this may be a moot point I'm making
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Old 02-20-2016, 03:00 PM #41 (permalink)
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Default Re: Here goes...

Geeze Katrina/Tillie... I did use the word "maybe" in the first sentence. Of course it's her option. Her Threads and posts related some personal feelings and concern. If it's now "Bucky" that's fine with me too.

I wrote this one down so I don't do that again.
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Old 02-20-2016, 03:51 PM #42 (permalink)
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Sorry Al, I just mentioned that so bucky didn't feel obligated even with maybe I just remember how I felt in those early days, and I don't even know if it was truly valid, it was just how I felt back then ...
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Old 02-20-2016, 08:55 PM #43 (permalink)
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Default Re: Here goes...

Al.....are you trying for emperor of aggravation?????

Sorry..sometimes it seems like we cant do anything right.
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