if I was to put some of the posts that I have found away back in the late nineties and early 2000's on here to remember some of the heroic people that have fought for the rights of those who have or have had Als.

Many of them have gone now either to the wayside or have found their rest and it may be too painfull to remember.

so I am asking first.

What say you?

great thelma sounds good

there are many old post's with good info about living with als from pals that should be reposted for all to see.

keep them all under threads marked the same or something close to same so we know .???
and where you get them from ?

Well Bobby

It seems that my suggestion to do this has fallen on deaf ears and i can't do it. No one seems to understand why it is needed here and i am left with the suggestion that I tell all of the members here that they can only put their own posts on unless they give special permission for anyone else to do so.

No one understands Als only in the most superficial way and it is like fighting a losing battle and when you get the nerve to do something anything they shoot you down.

I will send you the sites but it takes a lot of time and effort to find the ones we mean and need no one here has that to waste.

That and the fact that so many have passed on and are not around to ask permission. I was reading Rulu's writings and he was some gentleman. All should know of this man as well as Greg Gold. Who knows maybe someday they will, who can say.

Such is the world and I once again I find myself saying I am so sorry

Thelma

thelma please post the link for me.
thanks
bb

Hi Thelma,
I think I understand what you are trying to do..
Rulu, Rob, Ernie, Greg Goldberg,Will Hubben , Kathy, JD ,Matt, so many more names and precious people ( some whose real names we never knew) ...poured their heart and souls out .on sharing personal experiences and information in living with this disease..and fighting for survival on the boards ..
Several caregivers as well....Bonnie, Cathy , Katherine etc..

Some lessons were hard learned by others ( including by my husband I) though we were often forewarned. by wiser people who had been similar routes before....some were often graphically detailed choices where there was no right or wrong choice for any one person ..but their lives unfolded real time...with no benefit of hindsight then as we have now..still from their immortal words we still can continue to learn valuable lessons from and make more educated decisions from..many of those priceless posts did not not go unheeeded as well..and came in the niche of time...
I too miss these people dearly...but regardless of where they are now or if they have crossed over ....their memory , strength , passion and preseverance remains for all who were fortunate to know them...or even fortunate enough to stumble across their words from the past...
I could not possibly put out all the posts that touched my heart...by those that passed on ,,,or by those I do not knew what happened too..but I miss them all the same..and learned so much from them ...and their precious unique personalities.. ... forever willl leave an impression upon my mind and my heart..Lisa


PS..Thelma, I always had such a hard time visioning Rulu typing with one finger on a vent.I had a hard time closing my my eyes and picturing it..but knew that he was...his personality was just that strong..he was so tough and determined..and though we always did not see eye to eye..he was someone I always had great respect for...in retrospect some things he was right about and I just did not see it then..others I don't know if there is a right or wrong..while still others only time will tell..but a determined man and a man of integrity indeed he was..I too go back at times in my memories and reflect on words of his and many others of the past...what they tried to warn me of at times but I could not see .. and sometimes what lessons we learned together...and I continue to pull on their strength of those words for the future.. as the words are still there and the strength still exists...
To a degree it does hurt when we remember them ..as I'm sure you feel very much as I do...almost like they were sitting in our living rooms on an almost daily basis not too long ago.. ( ironic as many we only knew by screen names still they touched our hearts )...they fought so hard...and their loss is just not fair...but to me often any pain associated with remembering them is worth it..as there were many happy moments as well..as their unique individual personalities were never lost to this disease...nor their spirit to fight and help others whenever possible along the way.. ..Lisa

Dear Thelma,

Deaf ears are not ears that listen, mull over, consider, discuss, give attention to. This entire team did all the above and most responded to you. No, I dare say that you had fully attentive ears. Because the response was not as you'd hoped, does not mean your words fell on deaf ears. I just wanted to clarify that.

Further, because agreement to your request was not had, it does not mean to say that no one understands. I fully understand what you would like to see happen from my chair. I appreciate what you'd like to see happen as well. HOWEVER, there's much more to consider in cases like this than "a post". I think that was made plain yesterday as well in regards to the potential for several issues to arise.

Please don't say that no one understands or refused/couldn't hear because the outcome was not desirable to you. This administrative team works very hard to ensure attentiveness, awareness, functioning, dedication and so much more *for the whole*.

As always, I appreciate your care. There are ways that we can remember and carry forward that which means so much to us. I can think of a couple off the top of my head and you're more than free to PM me if you'd like. I'll share.

I'd also like to point out that DocJohn said "for now". Please keep that in mind as well. "Not at the moment" does not mean forever, nor does it mean that you should let go of that which you desire.

Thank you,

KD

KD and Thelma,
Very sorry for posting on the issue here again ...just saw the thread at forum feedback however where the issues were discussed previously ..
I can see both sides of the issue ..and respect whatever decisions are made by the administrative team here..as people have different concerns and feelings about posts from OBT ..Lisa

PS ..Bobby thanks for all that you do..

Thanks, lisag. I can see both sides of the issue as well.

Again, if anyone would like to hear some of the thoughts I have in regards to sharing, don't hesitate to PM me.

Much respect,

KD

will email you Bobby