I was a participant in the IL2 or Proleukin with another investigational drug use. Proleukin is a chemotherapy, drug and carries risk. They should be starting the phase 2 of that study soon if money is raised, and hopefully it will be a larger study. I believe it will be an effective treatment...
I’m glad you’ve found something that helps you. I agree with Laurie- A great amount of advancement has happened just not a cure, neuroscience has only really taken off in the past 20 years to treat previously untreatable things. I’m a genetic ALS patient so something in my blood tissues DNA/RNA...
Hey Everyone!
Over the past month or so it seems if I try to do things (walk with cane or walker) It’s been hot in Texas but just being active not running marathons or anything -as if I could lol. I’d try and fall. It seems I sprain muscles easier and have had some bad bouts of spasticity. One...
I’m battling the same DM Type 2 and finally got into an ALS Clinic High Protein High Fat. I don’t have much of an appetite so force myself to eat more. Priemere Protein makes a low carb shake powder that’s not bad tasting I add avocados nut butters fruits vegetables and try to make them taste...
Hello, I was told by my ALS Team for my children unless they have symptoms while there is no cure for genetic ALS not to push testing. If a cure comes encourage testing. The dread of the disease can be hard on some it’s a personal choice
I’m included in 1b not because of being a PALS, it’s not on the list for 1b in my state -other co morbids diabetic and heart issue. I’m 46 wish I live to 65 lol not likely but hope is eternal. I am on a waiting list for my county’s Public Health Dept fingers crossed. When I get it I’ll share the...