Guest guest Posted December 7, 2004 Report Share Posted December 7, 2004 Dear all My husband, Stuart, has LBD with severe Parkinson's symptoms, which appeared about six years before the first signs of cognitive decline. He is 60. He has now been approved for the drug Aricept which I believe will mask some of the symptoms. I wonder if any of you, with a younger LO, can give me details of your experiences with this drug. Does it improve memory, as well as understanding? I believe it doesn't stop the decline but just covers it up. I should be grateful if any of you could give me some idea of the results, and any side effects. It sounds awfull, but I don't want to extend the period he suffers with this, as I am suffering too, and have lost the man I married 37 years ago. my life has completely changed and it obviously affects the lives of our three children. Any response will be welcome Marilyn ( in London England) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2004 Report Share Posted December 7, 2004 Dear Marilyn Glad you found us here. I lost my father to LBD in Oct 2002. He was just 67 years old. He died in Tunbridge Wells even though he had lived all his life in Derbyshire! I had to move him in with us here in Tonbridge ... but alas I got to the dreadful point when I simply could not cope. He lost the use of his legs and should only have been in hospital a short time while they adjusted his Madopar (drug for PD symptoms) but sadly he got worse so fast that he was dead within 3 weeks. It is so very cruel but I call LBD 'the bastard' because it knows no limit to suffering for everyone concerned. My dad was given Exelon (Rivastigmine) I think it is similar to Aricept but I'd double check. At first it was good. His cognition improved quite noticeably (sadly not his physical thrashing tremor or lack of spatial awareness) - his mood improved and he was much clearer in his thinking. Even the paranoia decreased a bit. But I have to say that the benefits were not permanent. There is no cure. The drugs do not reverse any decline .... they just give you a temporary window of relief. Eventually the Lewy Body snatches back what little improvements you saw. You should also be aware that LBD patients are hyper-sensitive to all drugs and what suits one may be disaster for another. Every sufferer is unique. Also, the PD drugs antagonise the LBD drugs so it's a battle and often they cancel eachother out! You might also like to know that there is a caring spouses group running parallel to this one - because losing a life partner to LBD is a unique experience too. Please stay here with us if you wish!!! My advice is take it very cautiously - tiny steps at a time and keep a detailed daily journal of every/any changes, difficulties, reactions or 'new' behaviours. Days can be so different ... and you forget so much as you battle on. I have an Aunt who is nursing her husband of 53 years in the final stages of LBD. He is my dad's uncle (my paternal great-grandparents produced 11 offspring over many years!) She lives in the Midlands - and finds great ignorance of LBD with all the so called professional carers. There is loads of wonderful information here in the caregivers site ... print it off and spread the word! Everyone here can understand your heartache. You have found friends. Sally (Tonbridge, Kent, UK) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 7, 2004 Report Share Posted December 7, 2004 My dad (age 71) has been on Exelon (which I believe is similar to Aricept) for almost 6 mo now. He was also put on Zoloft (anti-depressant) at the same time. Within a few weeks of being on these, his mental functioning was much better - his mini-mental went from a 23 to a 28, he didn't repeat himself so much and seems to be able to continue/follow conversations better. I definitely think it has been helping him. marilynstuart@... wrote: > Dear all > > My husband, Stuart, has LBD with severe Parkinson's symptoms, which appeared > about six years before the first signs of cognitive decline. He is 60. > He has now been approved for the drug Aricept which I believe will mask some > of the symptoms. I wonder if any of you, with a younger LO, can give me > details of your experiences with this drug. Does it improve memory, as well as > understanding? I believe it doesn't stop the decline but just covers it up. I > should be grateful if any of you could give me some idea of the results, and any > side effects. It sounds awfull, but I don't want to extend the period he suffers > with this, as I am suffering too, and have lost the man I married 37 years > ago. my life has completely changed and it obviously affects the lives of our > three children. > Any response will be welcome > > Marilyn ( in London England) Quote Link to comment Share on other sites More sharing options...
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