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Hi everyone, I've been an ALS researcher for 22 years (working on things like cognition, depression, PatientsLikeMe, ALS Untangled, wikipedia, clinical trials) and a caregiver for 11 years to my father in law who was diagnosed with a slowly progressive form of ALS and is currently in an...

Sorry to hear you're having a tough time managing saliva. Here is the most recent clinical review I could find on the subject: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6498144/#:~:text=Sialorrhea%20is%2C%20amongst%20others%2C%20one,to%20an%20overproduction%20of%20saliva. Best wishes, Paul

As others have stated, ALS can cause pain, and in fact it's a myth that persists even among professionals that it doesn't. I wrote a commentary on this a few years ago but I'm afraid it's behind a paywall. Here's an open access review: Pain in Amyotrophic Lateral Sclerosis: A Neglected Aspect...

While it's still early days, there was some evidence presented in Orlando that the drug Nuedexta could potentially help with bulbar symptoms including swallowing. I think a proper Phase III is still warranted but it might be worth a shot. Paul

Dear all, Apologies for coming to this discussion late, I only just found it as I do not check in regularly. I think there has been some misunderstanding and some crossed wires. Best wishes Paul

One of my friends in the ALS world was just at Fenway the other day to collect a big cheque from CVS for ALS research; $4.5 or so I believe!

Hi Geo, Our front page does say PLS, as well as ALS, and PMA. Hope that helps. Paul

Hi Al, you're quite welcome to post links to your site in the ALS forum, always have been! I get the feeling sometimes that you guys think there's competition between ALS sites but IMHO we provide quite different services and many of our members belong to both sites. We don't currently have a...

Hi guys, I'm preparing some slides for the ALS/MND Symposium in Birmingham on use of the internet by PALS and I'm trying to get some data on the different forums that are out there. According to the site stats at the bottom of the screen there are 7,000 members here but when I go through the...

Hi all, Just a quick note to say we've recently added a new feature for patients with PLS. Previously if you joined the ALS/PMA/PLS community and had PLS you didn't get the percentile curve backdrops that the ALS patients had. I'm pleased to say that now that we have 150+ PLS members we have...