What's to lose
Ok so I am by no means an expert on Alzheimer's or drugs but from what I've seen about Enbrel, it looks to me like the sufferers it's been used on have made a comeback from this debilitating illness. I was contacted by a lady who saw a video I had posted on the internet of my mum and she told me about her mum and how she was before and after using Enbrel.
Marlene is actually my mum, my sister uses her name as a user name, it her pseudonym...and I know my mum and the ingidnity this illness causes her, not from the carers but because even though my mum is as ill as she is, like my sister mentioned before...bedbound etc, she knows that the carers and even me should not have to do the things we do for her, changing her pad etc....she's only 70 after all. After the carers have changed my mum's pad, she sits and cries or sometimes swears at me, not to let them come back because it's not right and when I change her, she sits and cries, saying I shouldn't have to be doing this for her!
If using Enbrel, whether it's licenced for Alzheimer's or not, could give her back some of her dignity, then isn't it worth it??? Not just for the sufferer but for the family as well, because as we all know, this illness takes it's toll on the whole family and carers as well! Unless 'a real' Alzheimer's sufferer uses it then how the hell do we get to know whether it works or not! What do we have to lose????? Certainly not my mum, because to be honest with you, we lost our mum some time ago....every so often she reemerges and we get to spend a few seconds of the mum we used to have.
Sorry I just feel very strongly about this. The stage my mum is at now to be honest with you, there's nothing to lose by trying this treatment and I sometime wonder whether using Aricept from the start has helped or not as a friend of my mum's who started with dementia before my mum (five years ago now) is still walking about and going to day centres etc, admittedly has to live with her family and gets confused a lot of the times. She did not go on any medication for the Alzheimer's at the time and it is only now that the family have agreed to let her go on it. Does this mean that they have been able to have their mum for longer without taking the medication?? Who knows!
I do know though that if I can get hold of Enbrel on private prescription then that's what I'm going to do, for my mum and I suppose for us in a way, so that we can have some quality time back with our mum.
Love you Kim (marlene) I'm sure she won't mind me sayin that. We'll keep battling on for this sis, we need to.