Recent content by Jesse35

Thank you for the info, I'm pretty sure if my mother did have the mutation it would be the c9 one. We do have european ancestry in our family. Should I get my uncle to get tested or is it much easier for me to do the test? Is it an easy process to get tested?

Hello I have a question about FALS. My mother died of ALS 5 years ago at age 68, I just learned that her brother who is 83 years old has FTD and started having symptoms of FTD when he was 79. My mothers sister another member of the family died 7 years ago of vascular dementia, and my brother has...

I'm curious to know if there is a link between ALS and schizoaffective disorder. I myself lost my mother in may 2019 from Bulbar Als she was 68, and my brother has Bipolar schizoaffective disorder since he was 19 (Now he is 41 years old). My mother used to have this nervous tick; she would make...

so spraying plain nasal decongestant in the ear canal can help with the ear ''throbbing sensation'' ? my mom has been complaining about this for a while now. The doctors tell me its als related and theres nothing we can do about it.

my mom has been on amitriptylene for 2 weeks, and she says that her mucus problem has not improved much. she uses cbd oil to help her sleep better at night and helps dry her mouth. Im wondering if I should get her off amitriptylene and try neudexta instead. we have an appointement next friday...

Hello everyone, I was wondering if neudexta is safe to take for an als patient that doesnt have pba. Ive managed to get the medication from someone in the states. My pals is taking amitriptyline pills and cbd oil both for sleep and to help with mucus problems. she is having difficulty talking...

Are you kidding me? what are they waiting for to approve this treatment. If they approve it in the states, how long do you think it will be approved in canada afterwards?

Thank you for the information. Lets hope they can make the therapy available sooner than mid 2020

When you say within the indicated group, do you mean the group of PALS that have to meet the criteria to be eligible for the phase 3 trial? My mother is 68 years old which is not within the age group they ask for, and by the time the therapy gets approved she will probably have a feeding tube...

If the therapy is accepted, how much would it cost??

Thanks again for the support :) She was diagnosed by a neurologist at the Trois Riviere Hospital here in the province of Quebec. I finally got a hold of him 2 days ago on the phone and asked him if he was absolutely sure about the diagnosis, he told me during the 5 days my mom was at the...

Hi everyone, My mother has been diagnosed with ALS 2 weeks ago. she is having a bulbar onset right now having a hard time swallowing, talking and eating. Her Neurologist told me her breathing is good and has a relatively slow progression. She is on Riluzole right now, seems like the progression...

Hi firefighter hope all is well. My mother has been diagnosed with als 2 weeks ago. I give her vitamin b , zinc and ginseng as supplements. Do you recommend I give her anything else to help slow the progression of the desease? thanks so much in advance