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)