Dementia Support Group

My husband has been on excelon for a couple of yrs, now. He switched from Aricept to Excelon. He has not had any negative reactions from the drug. He has dimentia, but does not have alzheimers. His disease is progressing at a somewhat advanced rate, so to say that the excelon is helping to slow things down, is not something I can comment on. I just think, if the Excelon is helping, then he would be a lot worse then he already is. I trust that the drug is doing what it is suppose to do.

Thank you, Denise701. This is very helpful! I'm optimistic and, like you, hope the drug will do what it is suppose to do.

May I ask how old your husband is? How long has he had this? You know, some day there will be a preventative drug for all of this. Or, there will be a cure. Scientists are working really hard at this.

Hi
Please forgive me - first time in a discussion group so need to get hang of it. My dad aged 83 was diagnosed with memory and cognitive problems - possibly road to dementia , possibly not. He has heaps of pathologies - aortic aneurysm, heart condition, tias, gastric haemorrage (thanks aspirin!). The consultant decided to put him on Exelon patch 4.6 to circumvent his stomach for reasons above. Well he was giddy with mental alertness in first few days and then descended into severe confusion. We hoped that this would pass - but he just got worse - perhaps a window on dementia down the line. He wandered around in his undies after going to bed (not him at all - v well kept and dignified), talked clearly but gibberish and his answers to basic questions bore no relevance ie "Are you anxious" A: "twice". He also thought the show host on tv was "chasing him around the barracks" and was afraid of the widow. Humourous if not watching this unfold in a highly intelligent individual. He'd hate this so. Fortunately, he was calm rather than aggressive, violent etc.. but still very scary and not my very bright, witty dad at all. SO we took him off the patch - after having seen gp - and within hours he returned to normal ie still someone looking to sharpen his fading mental capacities. I keep hearing bout Exelon as wonder drug but... sorry if I share a downer with you.

NB I wonder if a lower dose would have worked - apparently this severe confusion is side effect in the higher dose. Being on the lower dose he has nowhere to go - and we were told we couldn't half the patch or split it into two doses which is the usual advice. Be grateful to hear your thoughts. best wishes to you all

PPS the big BIG advice the consultant warned about was nausea, vomiting, etc... yes of course no one wants that - but we were completely taken aback by the severe confusion. It's about quality of life isn't it? We want to stop/protect them from going down this route - so no go if one gets so massively confused.

My Mom just started the Exelon 4.6 mg. patch 2 weeks ago (as of tomorrow). Aside from a very bad few days when she was prescribed a pain medication for a sprained wrist she has not had ANY side effects or problems with the patch. It is too soon to know if it is helping yet or not. She is 83 and has mild to moderate dementia and Parkinson's Disease. They have not said anything about raising the dose. She has a 3 month prescription and then we go back to the doctor. Hope it helps your husband. Kim

I'm sorry. My Daddy was 83. Mom is 78 years old.

Hi Kim

Thanks very much for responding. I am really happy your Mum is having a good experience and I hope she continues to improve. It sounded like a miracle drug at the time ... We've had the most bizarre time. I guess my Dad is just (it's my Dad by the way - not my husband!) really unlucky. I did some online research in the National Library of Medecine (really great for all the latest advances up to the second.... ) and there was a French study which suggested that more long term research was needed to assess dosages and adverse reaction. The patch was just released in 2007 so early days. It was the best hope for my Dad - hope the medical types can think of something else.. Cheers

I have dementia and was prescibed exelon patch fot lower dose for 30 days then went up to the 9.5 dose. I seem to have leveled out without any signs of my dementia getting any worse. Any medication will not reverse this disease it is suppose to hopefully slow down the down hill progression of the disease, I was have been on exelon since last Nov, I think, have my bad days but over all I am very pleased with not getting any worse during the last several months. The only way you know if it will work is to give it a try and I would suggest do not tell your husband of the potential side effects, you just look for them. I did not want to know the side effects because my mind can do fun things to my thinking, I just told the doctor if I have any problems that pop up I will call him before my next appt. I think sometimes if we know what a side effect might be as soon as we have a stomach ache we blame it on the meds when it may not have any side effects to me. I am very pleased with its results and also no medication will last forever, it may do well anywhere from 18 months to 2 years then my body my become imune to its help and I may need to change medication, there is nothing that will completely stop my journey with this disease and I am realastic (sorry abt the spelling, my brain just does not work the way it used to) I am 59 and have had symptoms for approx 3 years or so, have been told I have syptoms on alzheimers and have accepted that also. I think some people think dementia is a better disease than alzheimers and fear that word. Dementia is a symptom and usually will turn into alzheimrs for about 70% of people with dementia and have not idea when a person crosses over from dementia and really it does not make any difference what it is called I just want to deal with what is going on so I can learn to make adjustments to the misfiring of my brain LOL. I also try to keep a very good sense of humor and most ot all I have faith and trust and just try to live each day as good as I can and so far it is going well for me. I even have named my dementia "Flops" because it is not Phil that does those goofy things so I do not take responsibility I blame it on Flops and it helps me to keep an upbeat attitude. God Bless you and your husband, God Bless you and learn all you can about the disease you can. Phil & Flops

Oh the biggest change I noticed in myself was before I got on the meds, I could not carry on a normal conversation. My mouth ran faster than my brain (was normal for me for years lol) shortly after getting on the patch that straigthed out for me, now I can carry on normal conversation unless I am under a lot of stress and then I really get very confused.

Hi Phil and Flops
59 - wow really young. I have been referring to my Dad - aged 83 (no husband just yet...). I know the same thing happened tot he author terry pratchett. he has been chucking a lot of his fortune at flops. I am really glad it is working for you. At least this condition is moving up the priority list everywhere so more money and research is being thrown at it so hopeuflly ifyou become immune as you say there will be something else. Meanwhile, it would be nice to find something my Dad doesn't have adverse effects to. He too - as we all - ahve a good sense of humour. Thank Goodness. oh we didn't tell him to expect confusion because WE didn't expect confusion - we were looking for nausea, etc... all the nasty side effects we hear about. All best wishes and keep going!