Recent content by jean p

Thank you for your reply and I am very sorry to hear you lost your husband. We have asked my brother to blink and have used yes/no cards to look at but his eyes just do not focus very long and it's been hard to determine what he wants. I've also thought about cognitive issues too, which do...

Hello all: My brother was diagnosed with ALS in 2020 when he was 57. Sadly, he went from running a successful business to now being bedbound, unable to walk, talk, eat. We have tried many ways to communicate with him, we also set up an Eyegaze monitor and worked with an occupational therapist to...

Thank you for your insight, it's appreciated. It's been a tough time and while we are trying every possible option, my brother is just taking too many meds/supplements. Since he has difficulty swallowing, choking is a concern and should factor into all of this. Modern medicine comes w/lots of...

thank you for your feedback, good advice!

My brother was diagnosed with ALS in 2020. He has been on radicava/riluzole for a year. He recently started seeing a naturopathy doctor who tested his urine via Great Plains Labs. He was off the charts for 2,4-Dichlorophenoxyacetic Acid (2,4-D), a chemical in weed killer/GMOs. He is going...

Thank you Nikki for your reply and info on Sinemet. My brother is experiencing many of the side effects of the meds, such as difficulty breathing, uncontrolled repetitive motions, agitation, constipation, etc. but these can also be symptoms for ALS/PSP. All three of his doctors are neurologist...

Hi! My brother was diagnosed with ALS last Jan, right before the shutdown. His neurologist put him on Riluzole. Another doctor within the same group diagnosed him with ALS/PSP and put him on Carbidopa/Levodopa. He has also been on Radicava for about a year. Now the first doctor is saying he...