[Isabelle]

thank you Steve and Jonathan …I do appreciate your comments and responses and will do my best to make it happen … without widening the wound that is already so painful and carefully hidden behind distractions and daily activities …thank you !

 

[Isabelle]

Hi all, I have a question : how to encourage your hubby to voice bank whithout hurting his feelings and destroying his spirits… how to encourage him to do it while he still talk and live as if nothing, hoping for a cure, hoping to get enrolled in a clinical trial, hanging to hopes and research while knowing too well how this disease steals functions one by one for having witnessed first hand his mom fight for the last 6 years ?  I am the one lifting his spirits up, looking for trials, making appointments, doing the research and attending webinars …. he does not feel able to do it without falling in the deep whole of sadness, regrets, and fear… so I do it for him… but what about voice banking ?

 

[Isabelle]

It says “Conclusion: Phenylbutyrate was more effective than benzoate at disposing of nitrogen. Increasing phenylbutyrate dose may not result in higher nitrogen excretion due to decreased conjugation efficiency at higher doses. Combinatorial therapy with phenylbutyrate and benzoate has the potential to significantly decrease treatment cost without compromising the nitrogen disposal efficacy”…I guess that is why we stay with SPB as a preferred choice …. the “may” has not been investigated nor tried as far as I saw …sadly !… I am wondering if TUDCA by itself is not as efficient as combined with SPB at slowing down the ALS symptoms progression…I am reluctant to take that SPB which was said to be neurotoxic …. any thoughts on this?