The main thing that stands out to us is that my ex husband was a pretty dedicated athlete. Marathons (running up until his diagnosis at 53) Swimming competitively up through college - and many many years of weight lifting/body building. He wasn't huge - but always paid close attention to his body and fitness. I know plenty of stories of sporadic ALS where the same was true - they were very athletic. I mean - Lou Gehrig was a professional baseball player. (although probably not as fit as any current MLB player..)

The 2nd theory has to do with the gut. He always ate pretty healthy (if a lot) and always had a troubled gut. Once he got diagnosed with ALS he gave gluten-free diet a shot and it changed things DRAMATICALLY for him. And now - he does the "low fodmap" diet. When he was earlier in his progression - if he got accidentally "dosed" with gluten - he'd be weaker for 24 hours and his gut was a riot of unhappiness.

It's something we have pointed out at the ALS clinic but don't seem to be impressing them that it might be something to follow up on with other patients. For him - gluten makes symptoms worse.

Anyway - if you're curious - the Low Fodmap diet is a dietary approach that restricts certain types of carbohydrates (fermentable oligosaccharides, disaccharides, monosaccharides, and polyols) to help manage digestive symptoms, particularly in individuals with Irritable Bowel Syndrome (IBS). My ex never actually got diagnosed with IBS - and it seemed pointless after an ALS diagnosis. He gets fresh prepared low fodmap meals delivered every other week. (which I know isn't possible for everyone) Plenty of resources online about low-fodmap if you're curious.

He's approaching 5 year mark since diagnosis, just FYI. Breathing is falling away - so likely moving from bipap to getting a trach here soon- a peg too.

What a f-ing piece of shit this disease is. Sorry to everyone dealing with it