3 ms·
My Dad has ALS and has participated in a couple trials for different treatments. It's hard to say if any of them made a difference at all, and the justification
by sudosteph 3y ago
My Dad has ALS and has participated in a couple trials for different treatments. It's hard to say if any of them made a difference at all, and the justification behind some of these drugs seems extremely flimsy (one he was doing was for a drug that had some weak correlation during covid for slightly slower progression in one symptom), and the quality life impact of participating in that trial (having to fly to Boston, drug side effects, multiple lumbar punctures) leaves me frustrated that doctors recommend these at all. I feel like they're trading favors to get patients into studies with doctors they know, meanwhile, there are more promising ones that are being tested that he should be a candidate for, but the doctor won't even have a conversation about trying to get him in those trials. It leaves a bitter taste in my mouth. I hope something comes from all this, but right now I don't have a high view of the drug research and treatment process for this condition.
- lambdaba 3y agoI hope this is not inapropriate but I wanted to share this interview with a person using a high fat diet for ALS: https://youtu.be/GoF4GZ1NoBQ?si=Y-yEnquZsLXXb2po https://youtu.be/GoF4GZ1NoBQ?si=Y-yEnquZsLXXb2po Noting that ketogenic diets are already proven to improve outcomes in other neurodegenerative diseases.