Any effective treatment ?, help please!

[Mrenteria96]

Hi, my name is Miguel, Im from mexico, my father was recently diagnosed with als in march of this year... Me and my family are very desperate because the disease has progressed very fast... he can almost walk and speak, he cant move his hands... and he is very depressed, just as we are..
He is taking the drug riluzole, and other neuroprotectors, but we cant stop the natural course of the disease... I researched and there are many new developments for disease... like the stem cells or some other drugs... My fear is that my father dies before he can improve with this new medicine...
we are trying everything, but nothing has work, do you know of anything that can help to prolong his life ?, something that give us a new hope..., we can take it, he isnt moving, he is devastated, i know you can imagine how painfully is this situation for him, and for us as well.... please give us a hand!!

thanks...

 

[GregK]

You're doing all that can be done: Riluzole.

Stem cells are still in trial. Do not go to a stem cell clinic, they're scams.

 

[affected]

I'm very sorry for the diagnosis Miguel.

Unfortunately there is no cure yet.

But you can focus on giving your father as much quality of life by being with him and loving him and doing anything you can with him. The hope of doing this can be achieved.

Again I am sorry, I know it, I lost my husband far too young to ALS.

 

[lgelb]

Hola, Miguel. At this point, the best things to try for quality and quantity of life are nutritious diet, including proteins and fats, enough deep sleep, breathing support (BiPAP) when he needs it, moving (gently) what can still move (or having someone else do range of motion exercises while protecting weak joints), getting out and being with friends and family when he can, and continuing what hobbies he can, even if in a different way. Those are the positive things. Avoiding the negatives, like exercising to exhaustion, falls, and choking (getting a feeding tube if it's needed for nutrition) are also important.

You may think these things are nothing, but those who do them actually do better.

Best,
Laurie

 

[patoyeah]

This is a great site, a great resource for info and things that can assist your father and family.

There is nothing proven to stop als, or effect it much. Riluzole the only proven treatment, and it doesnt do much.

There have been many new treatments coming for decades, so far, for als, they have been false hopes.

You can do things to help your father be in less pain and discomfort: ways to communicate when he can no longer talk, adjustable bed to help breathing, mattress overlay to protect bony body, feeding tube, breathing equipment, wheelchair w/tilt in place option.

take care,

pat