Help! Any advice of my ALS mom

[cmd2do]

Hello! My name is Sira from Thailand. My mother is a 52 year-old woman. She was diagnosed ALS for 4 years. Her status now is mostly dependent due to her weakness. She can walk slowly with my help. She has a little bit problems with swallowing soft diet but she can’t eat by herself. She has hoarseness but no difficulty breathing. She has been taken Rilutex 1 tab twice a day, which I can’t afford anymore due to financial problem. Other medicine is vitamin E and vitamin B.
Her daily activity is at home. T encourage her to do exercises such ad walking, going up/down stairs, cycling, etc.
Do you guys have any other options to improve her symptoms? Is there any other medicine than Rilutex that I can afford or any advice that could improve her quality of life?
Thank you in advance for your replies.

 

[Nikki J]

I am sorry about your mom. Riluzole is the only approved medication in the US. Something was just approved in Japan but the benefit was in very early disease in the trials. Riluzole is not absorbed as well as disease progresses so do not feel badly you can't afford it now. Lots of us try different over the counter things you can read and see if there is anything you want her to try. Keep moving is good as long as she is not pushing herself. Overstressing muscles can make things go faster. It does sound as if things are moving fairly slowly if she is still able to walk a little and swallow after 4 years
Good luck. She is a lucky mom to have you

 

[cheerleader]

Sirs what a good daughter you are!
A word of caution- stairs are dangerous with her weakness. Falls can accelerate progression.
Good luck. Donna