Recent content by KateMMA

Eric, that seems like such a fun trip; there's nothing like old friends! I'm so happy about your trip to Yosemite. I grew up near there and spent many many weekends there skiing, hiking, and just enjoying that amazing place. My husband and I had our wedding at the Ahwahnee Hotel; be sure to...

Thanks Lisa!

Hello everyone! This is my first time checking in. I was recently diagnosed November 2020 after a few years of symptoms and tests and it's taken me a few months to get over the shock and past all of the initial appointments but I feel like things are settling down. This last week I had a PFT...

Nikki, thanks for the response! When you say "dieting alone" do you mean that losing weight with diet alone is bad but losing it with some exercise is okay? I know we're not supposed to do intense exercise because it can speed progression but I do love easy to moderate hiking and swimming...

Grandtetons2, I asked the neurologist at my ALS clinic if I should start an anti-inflammatory diet for the same reasons you mentioned and he said something to the effect of, "There is no data that shows any particular diet helps but we do find that when our patients start a special diet like...

Shiftkicker, it seems like that is a transcript of the interview I posted from youtube. So yes, it's basically the same one.

https://alsnewstoday.com/news-posts/2021/04/13/scribe-raises-100-million-advance-crispr-therapies-als-neurologic-diseases/ This is fascinating research! Am I right in thinking this will only be useful for FALS until all gene mutations causing ALS are identified? Regardless, if it helps any...

Thanks for the information shiftkicker. It looks like a relatively quick turnaround. Igelb, it would be great if they can decide that soon and maybe have it available next year. Fingers crossed!

This is great news; hopefully it will get approved quickly so it's available to more PALS soon. I wonder if Health Canada is more likely to approve it without a phase 3 trial than the FDA. The article says it was being submitted after "feedback from Health Canada" so I would think that means...

Nikki, I just read the thread you linked and, wow, it is amazing! The time and energy you and some of the others on this forum give is incredible and much appreciated! It reminded me of something when I read the part about asking about other diseases or causes. I was diagnosed with Celiac...

Hi Nikki! Thanks for the info. I'll stay "fluffy" and enjoy my chips and guac guilt free! They did genetic testing and said I tested negative for any of the known genetic variants. I was relieved because I know it's more common in young PALS and I was worried about passing it on to my boys...

Hi everyone! My diagnosis recently changed from Hirayama's to ALS and I'm going to have a second opinion at the UC Davis ALS clinic in a few weeks and I wanted to know what to expect. I was seeing a neuromuscular specialist until recently (I moved from California to Hawaii) and now I'm...

Thanks Steve, I'm glad I found the forum. I know I'm going to learn a lot from everyone. Everyone is so welcoming and supportive.