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I am so, so sorry. So very handsome and such a kind face. May the decades of beautiful memories, even after his diagnosis, uplift you and the family during this time of grief and beyond.

Hi all. It’s been a long while since I posted but I am still here. In fact I continue to do pretty darn well on the ALS side of things, and am still mobile with decent strength. However, I have developed other significant health issues over the past few months—some sort of vascular issue—that my...

Hmmm. I think that is for those wishing to make a donation, not the business itself. Usually a .com ending and multiple commercials are indicative of for profit organizations. Of course it doesn’t matter because the forum serves such an important purpose. I guess the point I’m stumbling to make...

Was going to say the same thing about for profit businesses. Remind me, is this forum nonprofit?

I think if you live in rural areas pulling together a group of knowledgeable specialists can be difficult. Laurie makes some good points but like any service whether people use it or not is entirely up to the individual. All I know is Brain and Sandra have done more to advocate for the ALS...

Bill, my thoughts will be with you, your wife and family on the results of the stress test. We have had incredibly up and down weather here in N. FL as well. Last night got down to 35 degrees, next week we will be in the 80’s. The flowering plants are very confused.

Always good to hear from you, Bill (and Al and Steve). As Nikki said most of the riluzole studies that only indicated a late stage 2-3 month extension were done as part of its 1995 approval. Since then newer studies, including the link that Laurie provided from 2017, have shown it to be...

I would also add that two blood tests, Erythrocyte Sedimentation Rate (ESR) and C-Reactive Protein (CRP) are inflammatory markers that can help identify whether you have inflammation, either acute or chronic. I have mine checked regularly because I have a GI pathology that requires regular...

True, Laurie. Though approved for depression, my physician said there were more effective alternatives, and I do not use it for depression. Interestingly, Trazadone is being studied as a potential ALS therapy for the familial C9orf72 as well as sporadic ALS.

Everyone is different, but for me Trazadone has been incredibly effective in helping me sleep. I take two 50 mg pills before bed and sleep through the night. I know that Kim T. finds Remeron to be her medication of choice, so there are other options as MupstateNY said.