-
Karl Schachtner replied to the topic As Co-moderators of the ALS News Today Forums, We Wear Several Hats in the forum Using our Forums 1 year ago
Well my hat’s off to both you and Amanda for the job you do! I always enjoy perusing the posts and replies here in this forum, and the excellent moderation you both provide is a big part of it.
Thank you! -
Karl Schachtner replied to the topic artificial voice/speech equipment in the forum Mobility Aides, Assistive Technology and Medical Equipment 1 year, 1 month ago
I completely lost the ability to speak several years ago. My arms and hands still work well enough to write and type (hunt & peck only). I primarily use a boogie board to communicate. I don’t bother to use the stylus that comes with it, I just use my fingernail to write on the screen and with the push of a button, it erases. Much better than a w…[Read more]
-
Karl Schachtner replied to the topic Update us on the research and trials you are in!! in the forum Research Topics 1 year, 1 month ago
Paul, I’m 5 1/2 years since my diagnosis so, like you I’m not eligible for drug trials. But like you I’ve found observational studies to participate in. Makes me happy to think that I’m contributing in some way. My list is a little shorter than yours, but includes a couple of particularly interesting studies designed to investigate disease progres…[Read more]
-
Karl Schachtner replied to the topic Riluzole and Radicava in the forum Living With ALS 1 year, 2 months ago
Hi, I’ve been on riluzole since my diagnosis over 5 years ago. I started on radicava almost 4 years ago. I’m blessed that my progression is so slow – lost my voice completely after about 1 year, got a feeding tube 2 years ago due to progressive swallowing problems but up until 1 1/2 year ago I was able to walk unaided, now I need a wal…[Read more]
-
Karl Schachtner replied to the topic Sodium phenylbutyrate powder in the forum Living With ALS 1 year, 2 months ago
I also take it in a liquid form. It comes in a liquid suspension with Tudca, which is supplied to me by a compounding pharmacy, WellPack Pharmacy in Tallahassee, Florida, for $550. per month.
Funny thing about this. I was warned that it would be very, very bad tasting. But I had no idea that something could taste so bad! I gagged on it and…[Read more] -
Karl Schachtner replied to the topic Member Check In (pALS, caregivers, and other community members) in the forum Living With ALS 1 year, 4 months ago
Hi, I spoke to my neurologist about Amylyx AMX0035. She explained that it’s not FDA approved so it’s not available. But if I was really interested, there is a compounding pharmacy that would mix up the drug constituents to make something very similar to AMX0035. However, the downside is that since this is considered an experimental drug, ins…[Read more]
-
Karl Schachtner replied to the topic Frequent, Intense Exercise is a Risk Factor for ALS – – But is it? in the forum Research Topics 1 year, 7 months ago
I have sporadic ALS and also did frequent, intense, competitive exercise prior to my diagnosis. My disease has progressed slowly and I partly credit my condition starting out, and my continuing exercise since then. I was able to continue regular bike rides with a serious group for 3+ years. Now, 4 1/2 years from diagnosis, I’ve switched to a r…[Read more]
-
Kathryn F. Kennedy and
Karl Schachtner are now friends 2 years, 8 months ago
-
Karl Schachtner changed their profile picture 3 years, 1 month ago
-
Amanda and
Karl Schachtner are now friends 3 years, 4 months ago
-
Karl Schachtner became a registered member 3 years, 5 months ago
-
Hello Karl, I’m Amanda. I am one of the co-moderators of the ALS forum. I wanted to welcome you and thank you for joining.
I read your profile. I’m glad that you are able to enjoy many of the physical activities that you love. ALS is different for each pALS as I’m sure you already know.
Please have a look around at the ongoing conversations…[Read more]
-
Hello Karl, my name is Dagmar. I’m one of the forum co-moderators and also a person who is living with ALS. I welcome you and thank you for joining our forum! We hope you will take the time to go through all the open conversations that are in progress and feel free to join in. The easiest way to see what is current is to click “Activity” on the t…[Read more]
-