Guest guest Posted May 19, 2004 Report Share Posted May 19, 2004 Sally, Thanks for your warning. I feel like my Mother is climbing one of those hills on a roller coaster. I don't know how high she can get or how long she will stay at the top, but I do know that there is a down slope coming. My Mother's biggest problem has been agitation and Exelon has greatly improved that. Exelon has also helped her walk better and she is happier. My thought is that if we can get her calm enough, maybe we can take care of her at home. She hates the nh, especially the nights. She is not use to sleeping alone and doesn't like it. When we bring her home on Saturday afternoon, she really enjoys taking a nap with my Dad. She seems to sleep better at home. I know Exelon is not a cure, but it has made our lives a whole lot better. I just don't know for how long and fully realize that at some point, we would probably have to put Mother back in the nh. Your warning is valid and we should all keep in mind, that there is no cure. I'm just grateful for the good times that Exelon is giving us. I'll take them as long as they last and worry about the sad times ahead when they come. I'm glad to know that Exelon helped your Father even toward the end. The geriatric psychiatrist said that Exelon helped with behavior more than the other Alzheimer's drugs. We also discussed adding Namenda when we get her to the max dosage of Exelon. in Dallas > Hi folks. > Seen one or two mention Exelon. > Just a footnote. > My dad (died LBD Oct 21st 2002) was given Exelon in the last 6 months of his life when the LBD was progressing fast. I wish we'd had it earlier because it helped a lot with the memory recall, muddle and general cognition. I didn't notice any nasty side effects either. It took about 2 weeks to take full effect but the change was more than I dared hope for. > BUT - and wth LBD there is always a 'but'! I don't want to sound negative. I am not trying to depress anyone. I'm just wanting to pass on some sensible advice I was given about this drug. > Exelon does help - however, it is not a cure. Whilst we have a 'honeymoon' period with it and can enjoy the improvements, it does NOT alter the underlying decline and progression of the disease. > Exelon will not help the progression of physical PD symptoms. It may also have the disadvantage of improving cognitive understanding to the extent that the patient comes to realise the severity of the situation. > That may lead to the onset of depression and despondency. > SORRY! - I know I sound a kill joy but it is such a tragedy to have your hopes raised only to have them dashed again. > Towards the very end my dad refused all medication so I can't say exactly when the Exelon stopped helping. > Enjoy the benefits while they're here!!! > Sally (UK) > xx > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2004 Report Share Posted May 19, 2004 Patty, Mother's doctor said that 6 mg is the maximum, but I believe the exelon website http://www.exelon.com listed 10 mg. Perhaps, for LBD, they do it at a lower dose. in Dallas > > Hi folks. > > Seen one or two mention Exelon. > > Just a footnote. > > My dad (died LBD Oct 21st 2002) was given Exelon in the last 6 > months of his life when the LBD was progressing fast. I wish we'd had > it earlier because it helped a lot with the memory recall, muddle and > general cognition. I didn't notice any nasty side effects either. It > took about 2 weeks to take full effect but the change was more than I > dared hope for. > > BUT - and wth LBD there is always a 'but'! I don't want to sound > negative. I am not trying to depress anyone. I'm just wanting to pass > on some sensible advice I was given about this drug. > > Exelon does help - however, it is not a cure. Whilst we have a > 'honeymoon' period with it and can enjoy the improvements, it does NOT > alter the underlying decline and progression of the disease. > > Exelon will not help the progression of physical PD symptoms. It may > also have the disadvantage of improving cognitive understanding to the > extent that the patient comes to realise the severity of the situation. > > That may lead to the onset of depression and despondency. > > SORRY! - I know I sound a kill joy but it is such a tragedy to have > your hopes raised only to have them dashed again. > > Towards the very end my dad refused all medication so I can't say > exactly when the Exelon stopped helping. > > Enjoy the benefits while they're here!!! > > Sally (UK) > > xx > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2004 Report Share Posted May 19, 2004 Sally wrote: " I wish we'd had it earlier because it helped a lot with the memory recall, muddle and general cognition. " Sally and All- My dad experienced much of the same when given Exelon. I remember him 'coming out of a shell' so to speak. He didn't talk much the last 2 1/2 years of his life, just a word every now and then, but for a few months he actually was somewhat able to speak. He became more clear, even in his eyes. He was more able to follow directions and when I talked to him, he would reply - it was fabulous!! Also, he would talk about things that happened atleast 6 months prior, as if it was in there, just couldn't get out, until the Exelon. Again, keep in mind though, this is my experience with Exelon and my dad. Thanks for taking me to such wonderful memories! Sandie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2004 Report Share Posted May 19, 2004 Sally: I have said the same thing to my children. They know that it is not a cure just a quality of life until it hits that HE isn't going to get better. I agree that sometimes it might not be better to know where Lewy is leading. We will just play it by ear and see what happens. in Texas Exelon > Hi folks. > Seen one or two mention Exelon. > Just a footnote. > My dad (died LBD Oct 21st 2002) was given Exelon in the last 6 months of his life when the LBD was progressing fast. I wish we'd had it earlier because it helped a lot with the memory recall, muddle and general cognition. I didn't notice any nasty side effects either. It took about 2 weeks to take full effect but the change was more than I dared hope for. > BUT - and wth LBD there is always a 'but'! I don't want to sound negative. I am not trying to depress anyone. I'm just wanting to pass on some sensible advice I was given about this drug. > Exelon does help - however, it is not a cure. Whilst we have a 'honeymoon' period with it and can enjoy the improvements, it does NOT alter the underlying decline and progression of the disease. > Exelon will not help the progression of physical PD symptoms. It may also have the disadvantage of improving cognitive understanding to the extent that the patient comes to realise the severity of the situation. > That may lead to the onset of depression and despondency. > SORRY! - I know I sound a kill joy but it is such a tragedy to have your hopes raised only to have them dashed again. > Towards the very end my dad refused all medication so I can't say exactly when the Exelon stopped helping. > Enjoy the benefits while they're here!!! > Sally (UK) > xx > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2004 Report Share Posted May 19, 2004 Patty, Yes, I meant 6 mg twice a day. My Mother steps up to 3 mg today for a month, then goes to 4.5 mg for another month, and then hopefully to 6 mg. in Dallas > > > Hi folks. > > > Seen one or two mention Exelon. > > > Just a footnote. > > > My dad (died LBD Oct 21st 2002) was given Exelon in the last 6 > > months of his life when the LBD was progressing fast. I wish we'd had > > it earlier because it helped a lot with the memory recall, muddle and > > general cognition. I didn't notice any nasty side effects either. It > > took about 2 weeks to take full effect but the change was more than I > > dared hope for. > > > BUT - and wth LBD there is always a 'but'! I don't want to sound > > negative. I am not trying to depress anyone. I'm just wanting to pass > > on some sensible advice I was given about this drug. > > > Exelon does help - however, it is not a cure. Whilst we have a > > 'honeymoon' period with it and can enjoy the improvements, it does NOT > > alter the underlying decline and progression of the disease. > > > Exelon will not help the progression of physical PD symptoms. It may > > also have the disadvantage of improving cognitive understanding to the > > extent that the patient comes to realise the severity of the > situation. > > > That may lead to the onset of depression and despondency. > > > SORRY! - I know I sound a kill joy but it is such a tragedy to have > > your hopes raised only to have them dashed again. > > > Towards the very end my dad refused all medication so I can't say > > exactly when the Exelon stopped helping. > > > Enjoy the benefits while they're here!!! > > > Sally (UK) > > > xx > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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