Guest guest Posted June 17, 2005 Report Share Posted June 17, 2005 THe list of Meds is great, but is there any source for it? My docs are open to receiving info, but like to know the source so they can confirm and review it. The neurologist from UofM who saw Dad last week and gave the LBD diagnosis (Dad's PD doc was out of town) said that it is okay for him to get Olzapine (sp?) on occasion for agitation. This doc is studies LBD so I think he would be up on the latest info. THanks, Lori > Hi , > I printed it off as soon as I got there. > Exactly what I have been trying to find! > Have a wonderful, caring Family dr for Mum but don't think he knows a lot about LBD. > Does any General Practitioner? > I think we expect far too much from our doctors but I wish some were more open to our input! > Can be a little touchy about things that are not his idea. > Have been amassing tons of information from the group just have to figure out how to present it to the dr. > The latest neuro exam was great - informative and sensitive. > Waiting for the promised report with meds suggestions to get to the G.P. before getting into the ring!!!! > I go in with each parent to all appointments ( their idea) so I know what is happening. > Thanks for your help. > > > > > --------------------------------- > Yahoo! Sports > Rekindle the Rivalries. Sign up for Fantasy Football > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2005 Report Share Posted June 17, 2005 Hi Lori At the top of the document it says it is compiled from caregivers. I understand that we are not doctors, but sometimes the proof is right before us. I won't go into detail again about MIL's problems while on these drugs, but it was like night and day. I believe we were not only damaging her quality of life, but driving her downhill very quickly to the point that she probably would have died within the year. > > Hi , > > I printed it off as soon as I got there. > > Exactly what I have been trying to find! > > Have a wonderful, caring Family dr for Mum but don't think he > knows a lot about LBD. > > Does any General Practitioner? > > I think we expect far too much from our doctors but I wish some > were more open to our input! > > Can be a little touchy about things that are not his idea. > > Have been amassing tons of information from the group just have to > figure out how to present it to the dr. > > The latest neuro exam was great - informative and sensitive. > > Waiting for the promised report with meds suggestions to get to > the G.P. before getting into the ring!!!! > > I go in with each parent to all appointments ( their idea) so I > know what is happening. > > Thanks for your help. > > > > > > > > > > --------------------------------- > > Yahoo! Sports > > Rekindle the Rivalries. Sign up for Fantasy Football > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2005 Report Share Posted June 17, 2005 Lori, this medication you mention is it OLANZAPINE?? If so it has been withdrawn from the market here in the U.K. because it can cause sudden death in LBD patients - my dads Physco-Geriatrician raced into the hospital one day and took my dad straight off it. It made my dad like a zombie anyway so we were glad to have it removed, check again just to be sure. Kathleen - Scotland. Re: meds THe list of Meds is great, but is there any source for it? My docs are open to receiving info, but like to know the source so they can confirm and review it. The neurologist from UofM who saw Dad last week and gave the LBD diagnosis (Dad's PD doc was out of town) said that it is okay for him to get Olzapine (sp?) on occasion for agitation. This doc is studies LBD so I think he would be up on the latest info. THanks, Lori > Hi , > I printed it off as soon as I got there. > Exactly what I have been trying to find! > Have a wonderful, caring Family dr for Mum but don't think he knows a lot about LBD. > Does any General Practitioner? > I think we expect far too much from our doctors but I wish some were more open to our input! > Can be a little touchy about things that are not his idea. > Have been amassing tons of information from the group just have to figure out how to present it to the dr. > The latest neuro exam was great - informative and sensitive. > Waiting for the promised report with meds suggestions to get to the G.P. before getting into the ring!!!! > I go in with each parent to all appointments ( their idea) so I know what is happening. > Thanks for your help. > > > > > --------------------------------- > Yahoo! Sports > Rekindle the Rivalries. Sign up for Fantasy Football > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2005 Report Share Posted June 17, 2005 Hi, I agree completely with here, we had the same medication problems with my dad. In year one he was on all the wrong stuff as he was thought to have Valcular Dementia, when the diagnosis was changed to LBD and he was put on different medication the difference was night and day. He went to being a shambling barely coherent wreck to back like something of his old self - if a bit more frail. Always worth double & triple checking the medications work for your loved one. kathleen - Scotland. Re: meds Hi Lori At the top of the document it says it is compiled from caregivers. I understand that we are not doctors, but sometimes the proof is right before us. I won't go into detail again about MIL's problems while on these drugs, but it was like night and day. I believe we were not only damaging her quality of life, but driving her downhill very quickly to the point that she probably would have died within the year. > > Hi , > > I printed it off as soon as I got there. > > Exactly what I have been trying to find! > > Have a wonderful, caring Family dr for Mum but don't think he > knows a lot about LBD. > > Does any General Practitioner? > > I think we expect far too much from our doctors but I wish some > were more open to our input! > > Can be a little touchy about things that are not his idea. > > Have been amassing tons of information from the group just have to > figure out how to present it to the dr. > > The latest neuro exam was great - informative and sensitive. > > Waiting for the promised report with meds suggestions to get to > the G.P. before getting into the ring!!!! > > I go in with each parent to all appointments ( their idea) so I > know what is happening. > > Thanks for your help. > > > > > > > > > > --------------------------------- > > Yahoo! Sports > > Rekindle the Rivalries. Sign up for Fantasy Football > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2005 Report Share Posted June 17, 2005 Hi, My name is Steve, my mom is recently diagnosed with LBD, for the past 2 yrs I thought we were dealing with AD. I need to know of a good DR. anywhere on the east coast, NYC etc.I know she's on all the wrong meds., constant anger, hallucinations, then I giver her Serequel and shes snowed. Please help me! Kathleen and McElroy wrote: Hi, I agree completely with here, we had the same medication problems with my dad. In year one he was on all the wrong stuff as he was thought to have Valcular Dementia, when the diagnosis was changed to LBD and he was put on different medication the difference was night and day. He went to being a shambling barely coherent wreck to back like something of his old self - if a bit more frail. Always worth double & triple checking the medications work for your loved one. kathleen - Scotland. Re: meds Hi Lori At the top of the document it says it is compiled from caregivers. I understand that we are not doctors, but sometimes the proof is right before us. I won't go into detail again about MIL's problems while on these drugs, but it was like night and day. I believe we were not only damaging her quality of life, but driving her downhill very quickly to the point that she probably would have died within the year. > > Hi , > > I printed it off as soon as I got there. > > Exactly what I have been trying to find! > > Have a wonderful, caring Family dr for Mum but don't think he > knows a lot about LBD. > > Does any General Practitioner? > > I think we expect far too much from our doctors but I wish some > were more open to our input! > > Can be a little touchy about things that are not his idea. > > Have been amassing tons of information from the group just have to > figure out how to present it to the dr. > > The latest neuro exam was great - informative and sensitive. > > Waiting for the promised report with meds suggestions to get to > the G.P. before getting into the ring!!!! > > I go in with each parent to all appointments ( their idea) so I > know what is happening. > > Thanks for your help. > > > > > > > > > > --------------------------------- > > Yahoo! Sports > > Rekindle the Rivalries. Sign up for Fantasy Football > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2005 Report Share Posted June 17, 2005 , We do have a lot of information available. The Yahoo website at the bottom of the message or messages have lots of links like for MD's that others are recommending or putting in the files. Also you can go to the Organization Web page at http://www.lewybodydementia.org Here you will find all the more info and if you send for a brochure you will have info that is approved by our Scientific Advisory Board. One of the people on this board was suppose to have participated in writing a book about LBD. This is more of a Medical style book and your MD might be interested in it. It was due out in June of 05. I haven't looked to see if it has been published or not yet. You can also get a newsletter.(Two have been written so far.) I think it is the second one that has the advisory Board listed. The third newsletter is due out soon Hope this helps. Donna R. Re: Re: meds Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2005 Report Share Posted June 17, 2005 Hi Steve You will find a few different answers to meds for hallucinations. My MIL's geriatric doctor says that exelon works just as good as seroquel and took her off seroquel. Anti-psychotics are hard on LBD, although the older ones are more devastating. You will also find that what works for one does not work for another. It is trial and error, getting the right mix and strength. I do believe that less is better too, after our experiences. Can you talk to a pharmacist? They would know of various drugs for hallucinations in your part of the world. Ask for something that LBD people can have, don't accept an answer like I got that it doen't matter what drugs they take. Good Luck, and welcome to the site. , borough, ON In LBDcaregivers , stephen ciarlo <sciar03@y...> wrote: > Hi, > My name is Steve, my mom is recently diagnosed with LBD, for the past 2 yrs I thought we were dealing with AD. I need to know of a good DR. anywhere on the east coast, NYC etc.I know she's on all the wrong meds., constant anger, hallucinations, then I giver her Serequel and shes snowed. > Please help me! > > Kathleen and McElroy <thebeeches@b...> wrote: > Hi, > > I agree completely with here, we had the same medication problems with my dad. > > In year one he was on all the wrong stuff as he was thought to have Valcular Dementia, when the diagnosis was changed to LBD and he was put on different medication the difference was night and day. He went to being a shambling barely coherent wreck to back like something of his old self - if a bit more frail. > > Always worth double & triple checking the medications work for your loved one. > > kathleen - Scotland. > Re: meds > > > Hi Lori > At the top of the document it says it is compiled from caregivers. I > understand that we are not doctors, but sometimes the proof is right > before us. I won't go into detail again about MIL's problems while > on these drugs, but it was like night and day. I believe we were not > only damaging her quality of life, but driving her downhill very > quickly to the point that she probably would have died within the > year. > > > > > > > Hi , > > > I printed it off as soon as I got there. > > > Exactly what I have been trying to find! > > > Have a wonderful, caring Family dr for Mum but don't think he > > knows a lot about LBD. > > > Does any General Practitioner? > > > I think we expect far too much from our doctors but I wish some > > were more open to our input! > > > Can be a little touchy about things that are not his idea. > > > Have been amassing tons of information from the group just have > to > > figure out how to present it to the dr. > > > The latest neuro exam was great - informative and sensitive. > > > Waiting for the promised report with meds suggestions to get to > > the G.P. before getting into the ring!!!! > > > I go in with each parent to all appointments ( their idea) so I > > know what is happening. > > > Thanks for your help. > > > > > > > > > > > > > > > --------------------------------- > > > Yahoo! Sports > > > Rekindle the Rivalries. Sign up for Fantasy Football > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2005 Report Share Posted June 17, 2005 HI and welcome to the group. How much Seroquel is your mom taking and what other meds is she on? Is she taking Ativan or any other benzo? Courage stephen ciarlo wrote: > Hi, > My name is Steve, my mom is recently diagnosed with LBD, for the past > 2 yrs I thought we were dealing with AD. I need to know of a good DR. > anywhere on the east coast, NYC etc.I know she's on all the wrong > meds., constant anger, hallucinations, then I giver her Serequel and > shes snowed. > Please help me! > > Kathleen and McElroy wrote: > Hi, > > I agree completely with here, we had the same medication > problems with my dad. > > In year one he was on all the wrong stuff as he was thought to have > Valcular Dementia, when the diagnosis was changed to LBD and he was > put on different medication the difference was night and day. He went > to being a shambling barely coherent wreck to back like something of > his old self - if a bit more frail. > > Always worth double & triple checking the medications work for your > loved one. > > kathleen - Scotland. > Re: meds > > > Hi Lori > At the top of the document it says it is compiled from caregivers. > I > understand that we are not doctors, but sometimes the proof is right > > before us. I won't go into detail again about MIL's problems while > on these drugs, but it was like night and day. I believe we were > not > only damaging her quality of life, but driving her downhill very > quickly to the point that she probably would have died within the > year. > > > > > > > Hi , > > > I printed it off as soon as I got there. > > > Exactly what I have been trying to find! > > > Have a wonderful, caring Family dr for Mum but don't think he > > knows a lot about LBD. > > > Does any General Practitioner? > > > I think we expect far too much from our doctors but I wish some > > were more open to our input! > > > Can be a little touchy about things that are not his idea. > > > Have been amassing tons of information from the group just have > to > > figure out how to present it to the dr. > > > The latest neuro exam was great - informative and sensitive. > > > Waiting for the promised report with meds suggestions to get to > > the G.P. before getting into the ring!!!! > > > I go in with each parent to all appointments ( their idea) so I > > know what is happening. > > > Thanks for your help. > > > > > > > > > > > > > > > --------------------------------- > > > Yahoo! Sports > > > Rekindle the Rivalries. Sign up for Fantasy Football > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2005 Report Share Posted June 19, 2005 wow - i just had a look. my dad HAD been on 2 of those. fortunately our GP is tuned in (his dad had LBD). he took my dad off those 2 (detrol and detropan - i know - it is weird that his previous doctor had him on BOTH of those at same time). i was skeptical when he blamed them for disorientation because they are prostate/bladder related. Now i appreciate our GP even more. Eli > HI and welcome to the group. > > How much Seroquel is your mom taking and what other meds is she on? Is > she taking Ativan or any other benzo? > Courage > > stephen ciarlo wrote: > > > Hi, > > My name is Steve, my mom is recently diagnosed with LBD, for the past > > 2 yrs I thought we were dealing with AD. I need to know of a good DR. > > anywhere on the east coast, NYC etc.I know she's on all the wrong > > meds., constant anger, hallucinations, then I giver her Serequel and > > shes snowed. > > Please help me! > > > > Kathleen and McElroy wrote: > > Hi, > > > > I agree completely with here, we had the same medication > > problems with my dad. > > > > In year one he was on all the wrong stuff as he was thought to have > > Valcular Dementia, when the diagnosis was changed to LBD and he was > > put on different medication the difference was night and day. He went > > to being a shambling barely coherent wreck to back like something of > > his old self - if a bit more frail. > > > > Always worth double & triple checking the medications work for your > > loved one. > > > > kathleen - Scotland. > > Re: meds > > > > > > Hi Lori > > At the top of the document it says it is compiled from caregivers. > > I > > understand that we are not doctors, but sometimes the proof is right > > > > before us. I won't go into detail again about MIL's problems while > > on these drugs, but it was like night and day. I believe we were > > not > > only damaging her quality of life, but driving her downhill very > > quickly to the point that she probably would have died within the > > year. > > > > > > > > > > > > Hi , > > > > I printed it off as soon as I got there. > > > > Exactly what I have been trying to find! > > > > Have a wonderful, caring Family dr for Mum but don't think he > > > knows a lot about LBD. > > > > Does any General Practitioner? > > > > I think we expect far too much from our doctors but I wish some > > > were more open to our input! > > > > Can be a little touchy about things that are not his idea. > > > > Have been amassing tons of information from the group just have > > to > > > figure out how to present it to the dr. > > > > The latest neuro exam was great - informative and sensitive. > > > > Waiting for the promised report with meds suggestions to get to > > > the G.P. before getting into the ring!!!! > > > > I go in with each parent to all appointments ( their idea) so I > > > know what is happening. > > > > Thanks for your help. > > > > > > > > > > > > > > > > > > > > --------------------------------- > > > > Yahoo! Sports > > > > Rekindle the Rivalries. Sign up for Fantasy Football > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2005 Report Share Posted June 21, 2005 --- sandra_dil wrote: > Hi Lori > At the top of the document it says it is compiled > from caregivers. I > understand that we are not doctors, but sometimes > the proof is right > before us. I won't go into detail again about MIL's > problems while > on these drugs, but it was like night and day. I > believe we were not > only damaging her quality of life, but driving her > downhill very > quickly to the point that she probably would have > died within the > year. > > > > > > > Hi , > > > I printed it off as soon as I got there. > > > Exactly what I have been trying to find! > > > Have a wonderful, caring Family dr for Mum but > don't think he > > knows a lot about LBD. > > > Does any General Practitioner? > > > I think we expect far too much from our doctors > but I wish some > > were more open to our input! > > > Can be a little touchy about things that are not > his idea. > > > Have been amassing tons of information from the > group just have > to > > figure out how to present it to the dr. > > > The latest neuro exam was great - informative > and sensitive. > > > Waiting for the promised report with meds > suggestions to get to > > the G.P. before getting into the ring!!!! > > > I go in with each parent to all appointments ( > their idea) so I > > know what is happening. > > > Thanks for your help. > > > > > > > > > > > > > > > --------------------------------- > > > Yahoo! Sports > > > Rekindle the Rivalries. Sign up for Fantasy > Football > > > > > > [Non-text portions of this message have been > removed] > > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2005 Report Share Posted August 16, 2005 Mara- I go very cautiously with all new drugs. I cut prescribed tablets in half and then watch and wait. I am glad that Haldol is working for your Dad, but continue with care because it my take several doses to get a blood level of the drug in his system. Gerry Meds My dad has taken 2 doses so far. What you guys are saying is really scary. He's taking .25 mg of Haldol. The fantasies are much less. He had a more sound sleep than without it. I didn't give him the Tylenol PM. The meds say every 6 hours (which would be 4 times a day). I figure I'll give it to him twice a day since he is sensitive to medicine. Hopefully I'm not doing the wrong thing, but it seems to be helping. Has anyone's l/o tried an anti-anxiety medicine, like Xanax? Blessings, Mara `````````````````````````` * Embrace Life When Mother arrived in the United States, the first thing she did was pick up a baby in her loving arms. She held the baby close and asked, " Why are they so afraid of you? " Baby Picture Project/Contest No baby is rejected in this baby picture contest!!! <http://www.itsalife.net/memorial.html> http://www.itsalife.net/memorial.html Email me & get my faith-based/pro-life/political e-newsletter mara@... * ''''''''''''''''''''''''''''''' Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2009 Report Share Posted April 4, 2009 Hi Shar, Have you seen a rheumatologist? If not, perhaps you should make an app't just to see what's going on with the joint pain. If arthritis has begun, there are meds that can assist in slowing down the destruction. I can't say for certain what meds would be suited for you --that would be something you would need to decide with your doctor-- but if you feel that you need to be checked for some additional meds, then follow your instincts. We are our own best advocates. No one knows our bodies better than we do. If, by chance, you happen to find a doctor who doesn't listen to you (or brushes you off), then seek another doctor. Chris snickrdoodls@... " Those who do not learn from history are condemned to repeat it. " Meds I everyone, I have a question about meds...I'm only on pain meds and have been for over a year now I was thinking that i should been on something else to help with the disease I have chronic joint pain so what about further joint damage. Any info would be great. Thanks Shar . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2009 Report Share Posted April 4, 2009 Hi Shar ( another Canuck) I have chronic joint pain, but I too am on only pain meds. My disease isn't too active these days. Perhaps you should have a talk with your Rheumy and see what he has to say. Are you flaring?Or is the joint destruction from the disease prior to now? Regardless, talk to your Doc, and find out what's up. Regards CAT May the Dragon miss you and the Angels find you! ________________________________ I everyone, I have a question about meds...I'm only on pain meds and have been for over a year now I was thinking that i should been on something else to help with the disease I have chronic joint pain so what about further joint damage. Any info would be great. Thanks Shar Quote Link to comment Share on other sites More sharing options...
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