ALS Forums

I have PBA and been on nuedexta for over a year. It’s easy to take as the capsule is just added to my g-tube meds. I keep joking with everyone - the Montey python “bring out your dead skit” - I’m getting better line.. the ALS clinic/hospice get a little upset at me when I tell them, I think I’m going to make a full recovery. But hey… it’s my party. SO FOR THE UPDATE - THE BULBAR STUFF HAS IMPROVED - and I’m bALS/UMN dominant.- and not just the PBA. I have to report I have had some... Read more

I have PBA and been on nuedexta for over a year. It’s easy to take as the capsule is just added to my g-tube meds. I keep joking with everyone - the Montey python “bring out your dead skit” - I’m getting better line.. the ALS clinic/hospice get a little upset at me when I tell them, I think I’m going to make a full recovery. But hey… it’s my party. SO FOR THE UPDATE - THE BULBAR STUFF HAS IMPROVED - and I’m bALS/UMN dominant.- and not just the PBA. I have to report I have had some... Read more

I am now on NIV almost around the clock. I am only off for about 15 minutes at a time for eating or talking. Can any of you talk with this on? No one can understand me when I try to talk, so I have to take it off. I am better with nasal pillows, but it feels like I do not get as much air with those. I am also a mouth breather, so "nodding off" with nasal pillows does not work because my mouth opens. I c wear the mask that cover the mouth and goes right under tip of the nose. (With the... Read more

I am now on NIV almost around the clock. I am only off for about 15 minutes at a time for eating or talking. Can any of you talk with this on? No one can understand me when I try to talk, so I have to take it off. I am better with nasal pillows, but it feels like I do not get as much air with those. I am also a mouth breather, so "nodding off" with nasal pillows does not work because my mouth opens. I c wear the mask that cover the mouth and goes right under tip of the nose. (With the... Read more

Hello everyone, I am writing on behalf of my aunt, who has been living with a severe and progressive neurological/muscular disorder for many years. We are trying to find other people who may have experienced a similar clinical course, particularly people who were initially suspected of having ALS but were eventually diagnosed with something else – or who have remained undiagnosed. Her symptoms initially began with bilateral atrophy of the hand muscles. Over the years, the weakness and... Read more

Hello everyone, I am writing on behalf of my aunt, who has been living with a severe and progressive neurological/muscular disorder for many years. We are trying to find other people who may have experienced a similar clinical course, particularly people who were initially suspected of having ALS but were eventually diagnosed with something else – or who have remained undiagnosed. Her symptoms initially began with bilateral atrophy of the hand muscles. Over the years, the weakness and... Read more

Check out this exciting demo that Precision Neuroscience just released. It showcases a participant controlling a computer, playing a game, and sending a message using thought alone—with a device that doesn't penetrate the brain. Having ALS, I’m working with them to help guide Precision's mission of developing technology that’s informed by the real-world experiences and needs of people with ALS. It’s an exciting step toward helping people with severe paralysis gain more independence through... Read more

Check out this exciting demo that Precision Neuroscience just released. It showcases a participant controlling a computer, playing a game, and sending a message using thought alone—with a device that doesn't penetrate the brain. Having ALS, I’m working with them to help guide Precision's mission of developing technology that’s informed by the real-world experiences and needs of people with ALS. It’s an exciting step toward helping people with severe paralysis gain more independence through... Read more

It has surpassed its enrollment goal thanks to all the carriers and at risk people who stepped up. If you are eligible ( carrier or first degree relative of a carrier or affected fals person) in the US and have been hesitating now is the time to act

It has surpassed its enrollment goal thanks to all the carriers and at risk people who stepped up. If you are eligible ( carrier or first degree relative of a carrier or affected fals person) in the US and have been hesitating now is the time to act

This UK trial is looking at existing drugs and seeing if nfl drops. If it does they would doca further trial. If it does not they stop. Neither nifedipine or metformin showed benefit. It is important to note that metformin was also trialed in c9 in a small US open label trial. We still do need t have full results there and I believe they are doing a post hoc nfl analysis. The proposed mechanism there was specific to c9 so we still don’t have a clear answer whether it could benefit c9

This UK trial is looking at existing drugs and seeing if nfl drops. If it does they would doca further trial. If it does not they stop. Neither nifedipine or metformin showed benefit. It is important to note that metformin was also trialed in c9 in a small US open label trial. We still do need t have full results there and I believe they are doing a post hoc nfl analysis. The proposed mechanism there was specific to c9 so we still don’t have a clear answer whether it could benefit c9