wishmobbing
Senior member
- Joined
- Dec 5, 2017
- Messages
- 872
- Reason
- Lost a loved one
- Diagnosis
- 07/2017
- Country
- DE
- State
- BW
- City
- Stuttgart
My boyfriend's mutation has been identified as C9orf72, He's on Rilutek but progression is quick.
Just now I read a script from a palliative nurse who cobbled something together to educate professional caregivers on ALS.
There it said, that Riluzol doesn't seem to help the familial kinds of ALS.
Aha. No source given, so I'm looking for more info and thought I'd right away tap into this part of the forum mind so well-versed in matters familial.
My PALS doesn't seen to suffer any severe side effects of Riluzol/Glentek, so he's taking the medication because "it can't hurt". But if it was scientifically pointless to do this, he could spare himself being reminded two extra times a day of this disease.
On thursday his study nurse will drop by and I hope to be around, learn something new and maybe pick her brain, too.
Just now I read a script from a palliative nurse who cobbled something together to educate professional caregivers on ALS.
There it said, that Riluzol doesn't seem to help the familial kinds of ALS.
Aha. No source given, so I'm looking for more info and thought I'd right away tap into this part of the forum mind so well-versed in matters familial.
My PALS doesn't seen to suffer any severe side effects of Riluzol/Glentek, so he's taking the medication because "it can't hurt". But if it was scientifically pointless to do this, he could spare himself being reminded two extra times a day of this disease.
On thursday his study nurse will drop by and I hope to be around, learn something new and maybe pick her brain, too.