Hi everyone,
Just thought I would update on how we are doing and see how everyone else is doing. It appears my husband is experiencing a plateau, his ALSFRS score is the same now almost in August as it was at the beginning of January when he was diagnosed. I don’t know if this is because of the supplements, riluzole and accupuncture, or if he is just naturally slow progressing. He was diagnosed with bulbar onset but we think his symptoms started in his hands over the last 5-6 years if we look back. You don’t often hear about slow progressing bulbar onset but it appears that is what we are dealing with here. I’m hoping that we can continue at this rate and hang in there for better treatments over the next 5-10 years. Has anyone else experienced at plateau like this? How long did it last? We are past the 6 month mark now. Currently doing broccoli sprouts, daily hi protein/hi calorie smoothies, riluzole, liposomal gluatathione, Basis, Tudca, olive leaf extract, B12 injections at home and high dose B thiamine.