Where have all the people gone
 

Just look at all of the people who are stopping by here and yet no one is posting. Why is that as it sure beats me.

No one is posting on many of the other sites as well. Very few posts anywhere. So many people needing help and not asking for it is as bad as no one responding.

We need a good site and not to make use of this one is beyond me.

Some of it might be the nicer weather coming around finally.
People getting outside and sitting in the sun?

I think you may be right; people are also "crunching" to be able to have a bit of respite - with family and/or friends - during nicer weather. The socialization in RL is healthful. It's not that people don't care, only also want to make the most of more pleasant weather.

Ladies please read Bobby B's entries and see what having Als entails. It is a deadly disease that totally paralyses those who have it. To post here takes a lot of time and effort and while that is true it is also rewarding in that it takes one out of total confinement.

Als is so misunderstood by so many that this forum can spread the truth is not to be denied.

Please start posting Pals and Cals. This can be your own personal advocacy site. It is needed by so many.

Other sites are active
 

Actually some other sites are quite active. Sadly this site, and its predecessor site Braintalk died, despite the more than heroic efforts of Bobby, for a variety of reasons. Stictly speaking this site didn't die because it never lived. It was a noble attempt to fill a gap when Braintalk went offline. Unfortunately it never reached that threshold of activity required for a site to prosper. Braintalk was nearly moribund when it went offline mostly due to overzealous moderators. It's being offline for such an extremely long time coupled with it never restoring the archives was the kiss of death for it. The most similar site to this one, in terms of focus, is the Canadian site "ALS Forums" *** I had a quick count of posts made today on two of its busier forums and came up with 45. Another active site that focuses on research is the ALS Therapy Development Foundation, **** So don't despair just move on. Sad but true.

Thanks fo responding John.

I have been to the site here in Canada and since it was taken over it too is not the same. The site is busy because there is no place to go where they can be at ease and I do bellieve this site is the answer for them and us.

It wasn't in the beginning but I think John Grohol will make it so now. Build is just about gone now and the other you mention is monitored by professionals and that can be hard sometimes.

This could be a place to relax and keep up with friends as we have Bobby here for all the rest. Cool guy eh.

Anyway if I can only get someone for you to talk to that would be great if you can give it a chance.

See you around I hope Thelma

well, I guess all that I can add is that the Welcome mat is always out here, and we would most certainly do whatever we can to make everyone feel at ease here at NeuroTalk, whether just visiting or here more often.


:)

Hi Thelma,
I pop in here to lurk once a week or so to read Bobby's post..especially the "in rememberance thead"..I often breathe a sigh of relief when I do not see the names of PALS I know on it.
( sometimes sadly there are names of people I knew ) .but even the loss PALS of whom I do not know have broght tears to my eyes at times..a partcularly touching story was letters to Sweet Pea to me..
My typing is horrendous..much worse than any PALS..I often post between doing other things as well...so concentration on what I type is not always the best..therefore the need for me to edit frequently exists. wherever I post...as if it is unintelligible to myself it certainly is to others.
I post most often at TDI these days ( formerly know(as TDF)..I like the nitty -gritty science stuff..and Dr. John MCCarty an ALS researcher..and is great at explaining in laymens terms...what published med abstracts and scientific jargon means.....he also is great at pointing out that press releases often have different spins..and gives us his take on those as well..a professional scientist to help us wade through findings and claims..is something PALS and CALS have desperately cried out for in the past..
They also have a Living with ALS section where we can talk about coping strategies and living with the disease.. Mary Beth an RN... often gives at advice and aid in helping PALS deal with day to day problems..she is also always just a phone call a way for PALS needing immediate help..
There are many PALS from OBT that I have found there...we talk about issues, sometimes disagree, and warn others about rehashed scams..none of us has ever been banned there..( minus scammers themselves)..or even had a posted edited by a Mod at least to my knowledge..and you know me I am not one to hold back an opinion or advocate for change in the healthcare system for more options for PALS..
Other forums exists now too..that are great for PALS..Patients like me is a great resource for tracking meds and experimental treaments people are trying...this type of database I know was cried out for in the past including myself ...but at this point although it is a wonderful resource for many..in Gary's case he can no longer afford to experiment healthwise now...it also has forums though for talking about experiences in day to day things..and many OBT PALS post there as well..
Build-UK iI read every week or so as well..Jeannie , Rob, Blupete and other UK PALS often bring a smile to face..as I pop in and see they are still with us..whether or not they know I dropped by they do make a difference in my life and others..
ALS forums..is another place to find many PALS and CALS..they have seperate forums that address seperate issues for PALS and CALS..
So to me , my point is the internet resources has evolved since OBT..PALS/ CALS have varying personalities..varying goals and desires..and there is a place for everyone and every forum...
At one time OBT was the only choice..this is no longer true..PALS and CALS needs have been listened to by others..and different formats have been developed..it was a great prototype..and maybe in time it wil change to..but the overzealous moderators and server crashes were not it's only problem there for me..but Booby's post there...also inform PALS..
Well hopefully you guys..can wade through my typing.. and I hope every thing is going well for all...if you like to get in touch with me. you can put up a post here as usually drop by once a week.. I'm over at TDI most of the time and can be sent an e-mail from there as well ..I do take months off at a time though from the computer itself..for every day life with the kids and down time to take care of my own needs ,and Gary's....hospitalizations for Gary are fairly frequent but we are catching problems very quickly ..and have a well developed plan on how to monitor and treat him with his physicians now for what can be treated,,I hope all of you here are hanging in there..if there is ever a time..that any of you feel I can be of help to any of you..pleaee let me know..as I can not express the thanks and gratitude in words..for all the help you have given us..practical soluions, kind words. and ideas...have impacted our lives more than you'll ever know,,,
With much warmth and respect.
Lisa ( aka linda5)

I just sent an email to my old mate "charlie" from Australia. 26 years MND and as he says "still breathing". He's a gem!

I know he had trouble being able to figure out the other forum but I thought this might be a lot easier for him to navigate. I had to send two emails. Silly Lara. I sent the first one with this forum's url but with the BT registration page. Just sent a correction with the right registration page. I wish I'd not made that mistake to complicate things. Anyway, I hope he's able to find his way here. I think he's pretty isolated these days.

Just letting you know.

Hi Lara,
I know you were looking for him for awhile..as I've been offline myself at times away from the computer..I do not know if I have met him..
But PALS and CALS are willing to assist anyone with problems registering online in at any ALS site...also for trouble registering..a quick e-mail to the forums mods and administrators will usualy do the trick..
Glad to hear he is hanging in there..and hope he can get whatever assistance he needs in this and any other forums on the web he wishes to participate in...registeration problems can occur...but all sites I know of are pretty easy to post in...any problems at all a quick e-mail or pm by the person in need .. to mods and administrators..can be extremely valuable..Lisa