Guest guest Posted June 25, 2006 Report Share Posted June 25, 2006 , you are quite some distance from here. So glad to talk to you. Cost? Well, we had a bottle, no I take that back, we HAVE a bottle of Risperidone (Risperdal). It cost 110.00 and we can't use it. If they would prescribe just a small amount with refills available it would be so much better. It came close to doing my husband in. He has a bad heart. ( had two open heart surgeries, and has two stents) And, it gave him terrible pain for about two weeks. It turned him into a zombie. He could hardly talk to the Cardiologist, who was shocked at his condition from the medication. I had already started easing my husband off the medication, because all at once might have really done some real sudden harm. They try a medication, and if it doesn't work they try another. We changed Doctors, and found an excellent Geriatric/Psychatrist, who commended me highly for taking that medicine away from my husband. Right now, it doesn't even seem that my darling is sick. He is doing superbly well. We are very pleased with his new doctor. Imogene Caregiver for my True Texas Gentleman husband of 35 years. He has LBD with Parkinsonism. In a message dated 6/25/2006 10:47:09 PM Central Daylight Time, patriciab@... writes: I have recently joine the group and I find all messages enlightening. My father has recently been diagnosed with lbd and was given donepezil and risperidone. The latter made him even more anxious and made blood pressure higher. After a month and a half risperidone was suspended and he was given olanzapine 2,5 mg, which here in Argentina is called Midax commercially. Aparently this medicine is soothing him down and easing off his hallucinatons but it is bringing many side effects like considerably reduced mobility and tremors in his left hand when he attempts movements. Has anyone have any idea about how cost - effective this medication pattern turns out to be? Thanks------------------------------------------------- Brusco Buenos Aires - Argentina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2006 Report Share Posted June 25, 2006 Imogene and , What I use to do when prescribed a new drug, is to ask the MD for a sample until I knew it would work. (None of it worked for Mom, as she couldn't handle any of it.) Then if it worked, I would get a prescription filled. It saved a lot of money. Donna R Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in a nh. She was almost 89 when she died in '02 No dx other than mine. Re: Hello , you are quite some distance from here. So glad to talk to you. Cost? Well, we had a bottle, no I take that back, we HAVE a bottle of Risperidone (Risperdal). It cost 110.00 and we can't use it. If they would prescribe just a small amount with refills available it would be so much better. It came close to doing my husband in. He has a bad heart. ( had two open heart surgeries, and has two stents) And, it gave him terrible pain for about two weeks. It turned him into a zombie. He could hardly talk to the Cardiologist, who was shocked at his condition from the medication. I had already started easing my husband off the medication, because all at once might have really done some real sudden harm. They try a medication, and if it doesn't work they try another. We changed Doctors, and found an excellent Geriatric/Psychatrist, who commended me highly for taking that medicine away from my husband. Right now, it doesn't even seem that my darling is sick. He is doing superbly well. We are very pleased with his new doctor. Imogene Caregiver for my True Texas Gentleman husband of 35 years. He has LBD with Parkinsonism. In a message dated 6/25/2006 10:47:09 PM Central Daylight Time, patriciab@... writes: I have recently joine the group and I find all messages enlightening. My father has recently been diagnosed with lbd and was given donepezil and risperidone. The latter made him even more anxious and made blood pressure higher. After a month and a half risperidone was suspended and he was given olanzapine 2,5 mg, which here in Argentina is called Midax commercially. Aparently this medicine is soothing him down and easing off his hallucinatons but it is bringing many side effects like considerably reduced mobility and tremors in his left hand when he attempts movements. Has anyone have any idea about how cost - effective this medication pattern turns out to be? Thanks------------------------------------------------- Brusco Buenos Aires - Argentina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2006 Report Share Posted June 26, 2006 Imogene, I found out that the pharmacy will fill a portion of a prescription, so that you could have say 10 days of it filled and only pay for the 10 days and then if it works, you can have them fill the rest of it. I found that out on pain pills when my Father had oral surgery. The nurse is the one that suggested doing that to save money. I don't know if that works everywhere, but here in Texas it seems to work. in Dallas > > > > , you are quite some distance from here. So glad to talk to you. > Cost? Well, we had a bottle, no I take that back, we HAVE a bottle of > Risperidone (Risperdal). It cost 110.00 and we can't use it. If they would prescribe > just a small amount with refills available it would be so much better. > > It came close to doing my husband in. He has a bad heart. ( had two open > heart surgeries, and has two stents) And, it gave him terrible pain for about > two weeks. It turned him into a zombie. He could hardly talk to the > Cardiologist, who was shocked at his condition from the medication. I had already > started easing my husband off the medication, because all at once might have really > done some real sudden harm. They try a medication, and if it doesn't work > they try another. > > We changed Doctors, and found an excellent Geriatric/Psychatrist, who > commended me highly for taking that medicine away from my husband. Right now, it > doesn't even seem that my darling is sick. He is doing superbly well. We are > very pleased with his new doctor. > > > Imogene > Caregiver for my True Texas Gentleman husband of 35 years. He has LBD with > Parkinsonism. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2006 Report Share Posted June 26, 2006 Welcome, to the club no one wants to belong to. We have certainly become an International group. I can't answer your questions about the medication, but maybe some others can. I just wanted to welcome you. Myrna (68) in Missouri Caregiver for Husband Jerry (70) Diagnosed AD 1997, LBD 2004 Hello I have recently joine the group and I find all messages enlightening. My father has recently been diagnosed with lbd and was given donepezil and risperidone. The latter made him even more anxious and made blood pressure higher. After a month and a half risperidone was suspended and he was given olanzapine 2,5 mg, which here in Argentina is called Midax commercially. Aparently this medicine is soothing him down and easing off his hallucinatons but it is bringing many side effects like considerably reduced mobility and tremors in his left hand when he attempts movements. Has anyone have any idea about how cost - effective this medication pattern turns out to be? Thanks------------------------------------------------- Brusco Buenos Aires - Argentina mailto:patriciab@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2006 Report Share Posted June 26, 2006 Welcome , I was wondering if your Dad is taking other medication. I am not sure what your question is. How cost effective is this pattern? Are you referring to how much the meds cost, or do you mean is it helpful? One thing that has been talked about before is that PD (Parkinson) meds and other meds for dementia don't mix well and if you get rid of the dementia problem. with meds, you will often have worse PD problems like stiffness. I am sure some others here can help. I am not sure how many we have on the group from Argentina. Meds are really a big problem. My Mom could take none of them without reactions that were greater than the help of the meds. Come back and ask more questions and join us. Donna R Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in a nh. She was almost 89 when she died in '02 No dx other than mine. Re: Hello Welcome, to the club no one wants to belong to. We have certainly become an International group. I can't answer your questions about the medication, but maybe some others can. I just wanted to welcome you. Myrna (68) in Missouri Caregiver for Husband Jerry (70) Diagnosed AD 1997, LBD 2004 Hello I have recently joine the group and I find all messages enlightening. My father has recently been diagnosed with lbd and was given donepezil and risperidone. The latter made him even more anxious and made blood pressure higher. After a month and a half risperidone was suspended and he was given olanzapine 2,5 mg, which here in Argentina is called Midax commercially. Aparently this medicine is soothing him down and easing off his hallucinatons but it is bringing many side effects like considerably reduced mobility and tremors in his left hand when he attempts movements. Has anyone have any idea about how cost - effective this medication pattern turns out to be? Thanks------------------------------------------------- Brusco Buenos Aires - Argentina mailto:patriciab@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2006 Report Share Posted June 26, 2006 Thank you Donna R. I have done that, but our doctor didn't have any samples of this particular drug, so I feel in that case they should give partial orders, until the patient and doctor knows if it will work. I fully plan to go that route in the future. Imogene In a message dated 6/26/2006 1:05:52 AM Central Daylight Time, twomido@... writes: Imogene and , What I use to do when prescribed a new drug, is to ask the MD for a sample until I knew it would work. (None of it worked for Mom, as she couldn't handle any of it.) Then if it worked, I would get a prescription filled. It saved a lot of money. Donna R Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in a nh. She was almost 89 when she died in '02 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2006 Report Share Posted June 26, 2006 I am nearly jumping with joy! I did not know this, and now, I know what to do. Bless your lovely big heart, , for passing this information on. It will benefit many who read your post, as it will me. Imogene Caregiver for my True Texas Gentleman husband of 35 years. He has LBD with Parkinsonism. In a message dated 6/26/2006 8:42:40 AM Central Daylight Time, lauraf13@... writes: Imogene, I found out that the pharmacy will fill a portion of a prescription, so that you could have say 10 days of it filled and only pay for the 10 days and then if it works, you can have them fill the rest of it. I found that out on pain pills when my Father had oral surgery. The nurse is the one that suggested doing that to save money. I don't know if that works everywhere, but here in Texas it seems to work. in Dallas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2006 Report Share Posted June 26, 2006 Refilling partial prescriptions works here in Delaware as well. I believe with so many people on medication , the pharmacy business has become very competitive. Consequently, the pharmacists will go that extra mile to help help and maintain their clients. Gerry Daughter and caregiver of Dick Deverell, who died on 9/11/05 after a more than 4 yr. battle with LBD. Re: Hello Imogene, I found out that the pharmacy will fill a portion of a prescription, so that you could have say 10 days of it filled and only pay for the 10 days and then if it works, you can have them fill the rest of it. I found that out on pain pills when my Father had oral surgery. The nurse is the one that suggested doing that to save money. I don't know if that works everywhere, but here in Texas it seems to work. in Dallas > > > > , you are quite some distance from here. So glad to talk to you. > Cost? Well, we had a bottle, no I take that back, we HAVE a bottle of > Risperidone (Risperdal). It cost 110.00 and we can't use it. If they would prescribe > just a small amount with refills available it would be so much better. > > It came close to doing my husband in. He has a bad heart. ( had two open > heart surgeries, and has two stents) And, it gave him terrible pain for about > two weeks. It turned him into a zombie. He could hardly talk to the > Cardiologist, who was shocked at his condition from the medication. I had already > started easing my husband off the medication, because all at once might have really > done some real sudden harm. They try a medication, and if it doesn't work > they try another. > > We changed Doctors, and found an excellent Geriatric/Psychatrist, who > commended me highly for taking that medicine away from my husband. Right now, it > doesn't even seem that my darling is sick. He is doing superbly well. We are > very pleased with his new doctor. > > > Imogene > Caregiver for my True Texas Gentleman husband of 35 years. He has LBD with > Parkinsonism. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2006 Report Share Posted June 26, 2006 , No, for me the price was to high to give Mom the meds. There were just to many side effects and I just would have rather worked with her delusions and confusion rather than cope with having her half numb and out of it. I just quit all meds until later when I ended up giving her quarter of pills to keep her from becoming agitated. I gave her a quarter pill 4 times a day and it was a pill that is on the no-no list, but I didn't know it and it worked and at her age of 88, I wasn't concerned if she was addicted to it or not. It worked! Otherwise I gave her thyroid and Blood pressure pills that she had been taking for years. I did have to cope with lots of sleepless nights until I found melatonin which is OTC (over the counter) from the drug store. She still didn't sleep, but she rested on those nights she didn't sleep. But I am only one. Many here do take their MD advice and medicate them. I don't think the MDs really understand.. There is a new book out on LBD written by MDs for Doctors themselves. It is fairly expensive (over $!00.) but I would recommend any MD buy it if he were treating my Mom. I think you can find it on the LBDA site. (LBDA.org) Hope this helps and is really only my opinion. Some can take meds, and some can't. MDs will usually tell you that you have to wait 6 weeks to see the effects. I found by the first 2-3 pills, Mom reacted. Hugs to you Donna R Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in a nh. She was almost 89 when she died in '02 No dx other than mine. Re: Hello Welcome, to the club no one wants to belong to. We have certainly become an International group. I can't answer your questions about the medication, but maybe some others can. I just wanted to welcome you. Myrna (68) in Missouri Caregiver for Husband Jerry (70) Diagnosed AD 1997, LBD 2004 Hello I have recently joine the group and I find all messages enlightening. My father has recently been diagnosed with lbd and was given donepezil and risperidone. The latter made him even more anxious and made blood pressure higher. After a month and a half risperidone was suspended and he was given olanzapine 2,5 mg, which here in Argentina is called Midax commercially. Aparently this medicine is soothing him down and easing off his hallucinatons but it is bringing many side effects like considerably reduced mobility and tremors in his left hand when he attempts movements. Has anyone have any idea about how cost - effective this medication pattern turns out to be? Thanks------------------------------------------------- Brusco Buenos Aires - Argentina mailto:patriciab@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2006 Report Share Posted June 27, 2006 Hi , Everyone with LBD responds differently to drugs...what works for one, doesn't work for another. You will have to gauge your lo's reaction. The doctor put my father on Olanzapine(Zyprexa)for approx 4 weeks and he responded horribly to it, developing the parkinson's side effects and being pretty unresponsive. Once he was removed from it, he came back to a much better state. He also takes Donepezil(Aricept) and I think it has helped him cognitively. My father is super sensitive to the " antipsychotic " drugs. He did not respond well to Seroquel either, but I have read here that many do. So you never know. Good luck with your dad's treatment..it is very frustrating. Daughter of Bill, 91 > > Donna > Thanks for the welcome > > When I say how cost effective it is, I mean if side effects of olanzapine or > donepecilo make his general phisical condition worse with more tremors > and stiffness, how far is it worthwhile to submit him to a treatment that > condemns him to be less active and less agile? I also dont know if > parkinsonism that is growing is due to the illness itself or the medication > itself. He is not receiving medicine for parkinson, only baby aspirine, > carvedilol and enalapril to keep blood pressure steady. > We'll keep in touch > > > Welcome , > > I was wondering if your Dad is taking other medication. I am not sure what your question is. How cost effective is this pattern? Are you referring to how much the meds cost, or do you mean is it helpful? > > One thing that has been talked about before is that PD (Parkinson) meds and other meds for dementia don't mix well and if you get rid of the dementia problem. with meds, you will often have worse PD problems like stiffness. > > I am sure some others here can help. I am not sure how many we have on the group from Argentina. > > Meds are really a big problem. My Mom could take none of them without reactions that were greater than the help of the meds. > > Come back and ask more questions and join us. > > Donna R > > Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in a nh. > > She was almost 89 when she died in '02 > > No dx other than mine. > > > Re: Hello > > Welcome, to the club no one wants to belong to. We have certainly become an International group. I can't answer your questions about the medication, but maybe some others can. I just wanted to welcome you. > Myrna (68) in Missouri > Caregiver for Husband Jerry (70) > Diagnosed AD 1997, LBD 2004 > > Hello > > > I have recently joine the group and I find all messages enlightening. > My father has recently been diagnosed with lbd and was given donepezil > and risperidone. The latter made him even more anxious and made blood > pressure higher. After a month and a half risperidone was suspended and > he was given olanzapine 2,5 mg, which here in Argentina is called Midax > commercially. Aparently this medicine is soothing him down and easing off > his hallucinatons but it is bringing many side effects like considerably > reduced mobility and tremors in his left hand when he attempts > movements. Has anyone have any idea about how cost - effective this > medication pattern turns out to be? > Thanks------------------------------------------------- > Brusco > Buenos Aires - Argentina > > mailto:patriciab@... > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2006 Report Share Posted June 27, 2006 Welcome to Lewyville, Sorry, that sounds terrible. I know you don't want to be here anymore than I do, but it is necessary. I am glad to hear that your Dad is weaning your mother off Risperdal. It made a zombie out of my husband in just a couple of weeks, and he had terrible chest pains. He has very bad heart trouble and I was fearful of it killing him. i was up many nights with him having unstable angina. Some can take it and some can't. Appearantly your mother can't. If I had waited for the Doctor to call me back it would have been forever. I saw we needed to do something now, and I did it. He is back to his normal self now. The doctor can find a medication that won't effect her that way. It is most dangerous for LBD patients to take many medications. The same meds that and ALZ's patient can take can kill a LBD patient. That is why trial and error are the way the ball bounces. Best wishes on care for your Mom and may the right med be found. Imogene Caregiver for my True Texas Gentleman husband of 35 years. He has LBD with Parkinsonism. In a message dated 6/27/2006 4:25:53 PM Central Daylight Time, caminocamaro@... writes: Hi all, I am new to the group and am also looking for answers. My mother in-law was diagnosed with LBD and has been given rispedol(sp?) as well as aricept. . The symptoms have gotten worse rather rapidly, almost like full blown Parkinsons. (My Grandfather passed away from parkinsons after about 20 years of suffering) The doctor believes it is because of the rispedol and is weening her off of it. she has gone from mild hallucinations, and totally self sufficient, to basically an invalid. Is this a normal progression? everything we have been able to find on the internet states that this should progress in about 5-7 years. Any information would be greatly appreciated. Thanks Phil from New York. Imogene Caregiver for my True Texas Gentleman husband of 35 years. He has LBD with Parkinsonism. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2006 Report Share Posted June 27, 2006 Thanks for your answer. Your experience with your dad gives me hope my dad's neurologist can adjust treatment in his appointment next week, and then he can regain mobility and independence. I' ll let you know Patrici Daughter of ,77 Date sent: Tue, 27 Jun 2006 11:37:05 +0000 Subject: Re: Hello To: LBDcaregivers Send reply to: LBDcaregivers [ Double-click this line for list subscription options ] Hi , Everyone with LBD responds differently to drugs...what works for one, doesn't work for another. You will have to gauge your lo's reaction. The doctor put my father on Olanzapine(Zyprexa)for approx 4 weeks and he responded horribly to it, developing the parkinson's side effects and being pretty unresponsive. Once he was removed from it, he came back to a much better state. He also takes Donepezil(Aricept) and I think it has helped him cognitively. My father is super sensitive to the " antipsychotic " drugs. He did not respond well to Seroquel either, but I have read here that many do. So you never know. Good luck with your dad's treatment..it is very frustrating. Daughter of Bill, 91 > > Donna > Thanks for the welcome > > When I say how cost effective it is, I mean if side effects of olanzapine or > donepecilo make his general phisical condition worse with more tremors > and stiffness, how far is it worthwhile to submit him to a treatment that > condemns him to be less active and less agile? I also dont know if > parkinsonism that is growing is due to the illness itself or the medication > itself. He is not receiving medicine for parkinson, only baby aspirine, > carvedilol and enalapril to keep blood pressure steady. > We'll keep in touch > > > Welcome , > > I was wondering if your Dad is taking other medication. I am not sure what your question is. How cost effective is this pattern? Are you referring to how much the meds cost, or do you mean is it helpful? > > One thing that has been talked about before is that PD (Parkinson) meds and other meds for dementia don't mix well and if you get rid of the dementia problem. with meds, you will often have worse PD problems like stiffness. > > I am sure some others here can help. I am not sure how many we have on the group from Argentina. > > Meds are really a big problem. My Mom could take none of them without reactions that were greater than the help of the meds. > > Come back and ask more questions and join us. > > Donna R > > Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in a nh. > > She was almost 89 when she died in '02 > > No dx other than mine. > > > Re: Hello > > Welcome, to the club no one wants to belong to. We have certainly become an International group. I can't answer your questions about the medication, but maybe some others can. I just wanted to welcome you. > Myrna (68) in Missouri > Caregiver for Husband Jerry (70) > Diagnosed AD 1997, LBD 2004 > > Hello > > > I have recently joine the group and I find all messages enlightening. > My father has recently been diagnosed with lbd and was given donepezil > and risperidone. The latter made him even more anxious and made blood > pressure higher. After a month and a half risperidone was suspended and > he was given olanzapine 2,5 mg, which here in Argentina is called Midax > commercially. Aparently this medicine is soothing him down and easing off > his hallucinatons but it is bringing many side effects like considerably > reduced mobility and tremors in his left hand when he attempts > movements. Has anyone have any idea about how cost - effective this > medication pattern turns out to be? > Thanks------------------------------------------------- > Brusco > Buenos Aires - Argentina > > mailto:patriciab@... > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2006 Report Share Posted June 27, 2006 Phil, Welcome aboard to the greatest group that no one wants to belong to. The one rule for LBD is that there are no rules. There are no stages, no " usual, " no norms, nothing. Some of us call it the Lewy rollercoaster because of all the ups and downs. People in this group can tell you of similar rapid declines followed by surprising recoveries. Other experience slow declines and plateaus with no real up turns. The 5-7 years you found is a statistical average--it doesn't tell you anything about what will happen to your MIL. Many in the group would tend to agree with your MIL's doctor and suspect the risperdal. Many of our Loved Ones (LO) are very sensitive to it. You might look on the website http://health.groups.yahoo.com/group/LBDcaregivers/ under Files at the Medications folder. There are serveral helpful articles in there. Once again, Welcome. Feel free to ask anything or just unload. Caregiving is stressful as we can all atest. Margee -- LO--Dad Passed away 12-2-05 ---- phil thompson wrote: ============= Hi all, I am new to the group and am also looking for answers. My mother in-law was diagnosed with LBD and has been given rispedol(sp?) as well as aricept. . The symptoms have gotten worse rather rapidly, almost like full blown Parkinsons. (My Grandfather passed away from parkinsons after about 20 years of suffering) The doctor believes it is because of the rispedol and is weening her off of it. she has gone from mild hallucinations, and totally self sufficient, to basically an invalid. Is this a normal progression? everything we have been able to find on the internet states that this should progress in about 5-7 years. Any information would be greatly appreciated. Thanks Phil from New York. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2006 Report Share Posted June 27, 2006 What is the name of the book? Would like to recommend it to several people in the medical profession!!! --- Donna Mido wrote: > , > > No, for me the price was to high to give Mom the > meds. There were just to many side effects and I > just would have rather worked with her delusions and > confusion rather than cope with having her half numb > and out of it. I just quit all meds until later > when I ended up giving her quarter of pills to keep > her from becoming agitated. I gave her a quarter > pill 4 times a day and it was a pill that is on the > no-no list, but I didn't know it and it worked and > at her age of 88, I wasn't concerned if she was > addicted to it or not. It worked! Otherwise I gave > her thyroid and Blood pressure pills that she had > been taking for years. I did have to cope with lots > of sleepless nights until I found melatonin which is > OTC (over the counter) from the drug store. She > still didn't sleep, but she rested on those nights > she didn't sleep. > > But I am only one. Many here do take their MD > advice and medicate them. I don't think the MDs > really understand.. There is a new book out on LBD > written by MDs for Doctors themselves. It is fairly > expensive (over $!00.) but I would recommend any MD > buy it if he were treating my Mom. > > I think you can find it on the LBDA site. > (LBDA.org) > > Hope this helps and is really only my opinion. Some > can take meds, and some can't. MDs will usually > tell you that you have to wait 6 weeks to see the > effects. I found by the first 2-3 pills, Mom > reacted. > > Hugs to you > > Donna R > > > Caregave for Mom (after I brought her from WI to MI) > for 3 years and 4th year in a nh. > > She was almost 89 when she died in '02 > > No dx other than mine. > > > Re: Hello > > Welcome, to the club no one wants to belong > to. We have certainly become an International > group. I can't answer your questions about the > medication, but maybe some others can. I just > wanted to welcome you. > Myrna (68) in Missouri > Caregiver for Husband Jerry (70) > Diagnosed AD 1997, LBD 2004 > > Hello > > > I have recently joine the group and I find all > messages enlightening. > My father has recently been diagnosed with lbd and > was given donepezil > and risperidone. The latter made him even more > anxious and made blood > pressure higher. After a month and a half > risperidone was suspended and > he was given olanzapine 2,5 mg, which here in > Argentina is called Midax > commercially. Aparently this medicine is soothing > him down and easing off > his hallucinatons but it is bringing many side > effects like considerably > reduced mobility and tremors in his left hand when > he attempts > movements. Has anyone have any idea about how cost > - effective this > medication pattern turns out to be? > > Thanks------------------------------------------------- > Brusco > Buenos Aires - Argentina > > mailto:patriciab@... > > > > > > [Non-text portions of this message have been > removed] > > > > > [Non-text portions of this message have been > removed] > > > > > Welcome to LBDcaregivers. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2006 Report Share Posted June 27, 2006 June, The name of the book is: Dementia with Lewy Bodies And Parkinson's Disease Dementia Edited By: O'Brien Ian Mc Ames Edmond Chiu and Francis Group (Ian Mc is on the LBDA Scientific Advisory Board) If you go to the LBDA email address, they have the book listed there. It is a little more difficult to find now than it was, but you find it and read parts of it there, if that is still working. Put LBDA in your search engine and it should be one of the ifrst to come up. Donna R Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in a nh. She was almost 89 when she died in '02 No dx other than mine. Re: Hello > > Welcome, to the club no one wants to belong > to. We have certainly become an International > group. I can't answer your questions about the > medication, but maybe some others can. I just > wanted to welcome you. > Myrna (68) in Missouri > Caregiver for Husband Jerry (70) > Diagnosed AD 1997, LBD 2004 > > Hello > > > I have recently joine the group and I find all > messages enlightening. > My father has recently been diagnosed with lbd and > was given donepezil > and risperidone. The latter made him even more > anxious and made blood > pressure higher. After a month and a half > risperidone was suspended and > he was given olanzapine 2,5 mg, which here in > Argentina is called Midax > commercially. Aparently this medicine is soothing > him down and easing off > his hallucinatons but it is bringing many side > effects like considerably > reduced mobility and tremors in his left hand when > he attempts > movements. Has anyone have any idea about how cost > - effective this > medication pattern turns out to be? > > Thanks------------------------------------------------- > Brusco > Buenos Aires - Argentina > > mailto:patriciab@... > > > > > > [Non-text portions of this message have been > removed] > > > > > [Non-text portions of this message have been > removed] > > > > > Welcome to LBDcaregivers. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2006 Report Share Posted July 12, 2006 judy, i am sorry you had to look us up, but i am glad you found us, welcome to our family. lbd is an ugly beast, for teh patient our lo (loved one) and for the family. my dad was a helicopter pilot for teh us navy for 23 years and yet as his lbd progressed he dint know how ot operate a phone. dad had terrible hallucinations and he was one of hte few that had scary hallucinations, he frequently thought the kgb or the cia was after him or after me to get to him. it was so sad to see this smart man be scared of seeing his neighbor in the yard, bedcuase they are spying on me. dad's decline came quickly after his fall and breaking the hip ball joint. he eventually died after 2 bouts of aspiration pneumonia, one lung blood clot, and 1 surgery on his hip. he died when his blood pressure whcih fluctuated alot, started dropping again and didnt bounce back up. see my descriptoin after my name, telling you alittle more history on my dad. feel free to ask anything, scream cry, laugh, whatever you need we are here, hugs, sharon m -- Daugher of Leonard, diag May 2004, had lbd since 1993, had hip surgery from fall 7/05, aspiration pneumonia 7/05 with pulmonary embolyis, had aspiration pneumonia and uti 8/05, died of blood pressure drop on 9/25/05, may he rest in peace with his mom and dad, a smile a day keeps the meanies away ---- Judy Knobloch wrote: I am a new member as of today - and am curious to see if this gets to right place. My dad has had Lewy Body for at least 5 years but was misdiagnosed as PD for the first several years. He is now in a nursing home and is almost completely disabled physically and mentally. He sleeps about 18 out of 24 hours, which is a blessing, because when he is awake, he is mumbling, whispering, nervous, and worried. Sometimes he has periods of hours to a couple of days where he is mostly unresponsive. My mother lives in assisted living just across the parking lot and goes every day to " care " for him. Her biggest worry is what is going to happen in the end and how do people with this disease finally die. We have a big family and they have a lot of support, but it is hard on all of us, as Dad was the rock of the family and an ambitious, successful businessman. I'm anxious to read all of your entries to gain some new insights........Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2011 Report Share Posted September 6, 2011 Hello All, I’m Edith a newbie here and I was diagnosed with Hashimoto’s in 2006 and I was told about it January of this year. I am having A LOT of problems dealing with this because my doctor in 06 wasn’t the caring doctor I believed him to be and never told me what kind of blood test I was getting and never told me the results. So my gland wasn’t getting treated until now. The other reason why I’m having problems with this is I believe that my mother also had this disorder but was never diagnosed and now she has RA ( it’s in her spine ) because of the hashimoto’s. I do not want to be like her. This is so hard for me. I want treatment for this hashimoto’s not the gland, treat the cause not the symptom it’s logical, but these doctor’s refuse to even try to treat hashimoto’s. I hate them all. Now I might have Psoriasis which can be caused by hashimoto’s among many other diseases. My body is attacking me, my immune system is running wild and everywhere I look I see immune boosters and I need an immune suppressor. The only good thing out of this is I rarely get sick, big whoop I am so angry at these doctors I don’t even want to take this synthetic T4 crap and since the dosage it low I just might stop I wasn’t on anything before and my TSH was normal. I’m sorry I dumped on you guys but like I said I’m having a hard time and I have no one to talk to. Stay Healthy Everyone Edith Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2011 Report Share Posted September 7, 2011 Hi Edith, I just joined this group and was diagnosed a little over a week ago and trust me when I say I share your frustration!!! I had symptoms of Hashi's 7 years ago and they all said that my fatigue and weight gain was because of bad diet and no exercise, although I was running every other day and ate all natural foods. I didn't know what tests I had to take, and to be honest, I didn't know I had to supervise my doctor who was supposed to know what she was doing. I'm hoping to find some support here because although millions of americans have this, apparently it's undiagnosed. I wonder what doctors think about that. Nina > > Hello All, > I’m Edith a newbie here and I was diagnosed with Hashimoto’s in 2006 and I was told about it January of this year. I am having A LOT of problems dealing with this because my doctor in 06 wasn’t the caring doctor I believed him to be and never told me what kind of blood test I was getting and never told me the results. So my gland wasn’t getting treated until now. > The other reason why I’m having problems with this is I believe that my mother also had this disorder but was never diagnosed and now she has RA ( it’s in her spine ) because of the hashimoto’s. I do not want to be like her. > This is so hard for me. I want treatment for this hashimoto’s not the gland, treat the cause not the symptom it’s logical, but these doctor’s refuse to even try to treat hashimoto’s. I hate them all. Now I might have Psoriasis which can be caused by hashimoto’s among many other diseases. My body is attacking me, my immune system is running wild and everywhere I look I see immune boosters and I need an immune suppressor. The only good thing out of this is I rarely get sick, big whoop > I am so angry at these doctors I don’t even want to take this synthetic T4 crap and since the dosage it low I just might stop I wasn’t on anything before and my TSH was normal. > I’m sorry I dumped on you guys but like I said I’m having a hard time and I have no one to talk to. > Stay Healthy Everyone > Edith > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2011 Report Share Posted September 7, 2011 Hi Edith, Welcome! I take it that you never tried the Nutri-Meds. I found them to work wonderfully during the Armour shortage. We have all had pitiful experiences with biased doctors. I went into a Myxedema Coma in 2004 and am lucky to be alive. We cannot let our anger define us. Please try to redirect your anger into getting answers and your health back. UN and under treated Hashis can cause other diseases. When the immune system becomes out-of-balance and in the case of Hashis it not only attacks the thyroid, but can also damage other organs, too. How can we help? Best wishes, ~Bj > > Hello All, > I’m Edith a newbie here and I was diagnosed with Hashimoto’s in 2006 and I was told about it January of this year. I am having A LOT of problems dealing with this because my doctor in 06 wasn’t the caring doctor I believed him to be and never told me what kind of blood test I was getting and never told me the results. So my gland wasn’t getting treated until now. > The other reason why I’m having problems with this is I believe that my mother also had this disorder but was never diagnosed and now she has RA ( it’s in her spine ) because of the hashimoto’s. I do not want to be like her. > This is so hard for me. I want treatment for this hashimoto’s not the gland, treat the cause not the symptom it’s logical, but these doctor’s refuse to even try to treat hashimoto’s. I hate them all. Now I might have Psoriasis which can be caused by hashimoto’s among many other diseases. My body is attacking me, my immune system is running wild and everywhere I look I see immune boosters and I need an immune suppressor. The only good thing out of this is I rarely get sick, big whoop > I am so angry at these doctors I don’t even want to take this synthetic T4 crap and since the dosage it low I just might stop I wasn’t on anything before and my TSH was normal. > I’m sorry I dumped on you guys but like I said I’m having a hard time and I have no one to talk to. > Stay Healthy Everyone > Edith > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2011 Report Share Posted September 7, 2011 Hi, BJ I did try Nutri-Meds but I would have to take several tablets to bring up my TSH and it dropped my T3 to low so I’m compromising I take 1 tablet .50 of the synthetic T4 tablet and a half of the Nutri-Meds to normalize my T3 I don’t know if that is working for me until I go for blood work next week the orders are of TSH and FT4 I won’t know about my T3 until the next time I go for blood work at the end of October. I’ll post the results I do know about the other disorders that can be the result of Hashimoto’s Type 1 Type 1 diabetes, celiac disease, heart disease, High cholesterol, lupus erythematosus, pernicious anemia, rheumatoid arthritis, Gout Hypothyroidism, gout often coexist and may have biologic mechanisms in common. 's disease, Myasthenia, gravis, Polycystic ovarian, syndrome. syndrome, Sjorgen syndrome Alopecia areata ( my mother has this ) Fibromyalgia, and more. http://outsmartdisease.com/associated-diseases-hashimotos-thyroiditis/ This link has more information about it. Have also read 3 books on the subject I wanted to get as much information as I can on the subject and from what I’ve read and what my doctors are telling me makes me angry. I can’t believe that after 100 years of it’s discovery they ( doctors and scientisis ) have yet to come up with a treatment for this that after 100 years there have been absolutely NO advancements in medical science. The only thing I can think of is that so long as they treat the gland who cares about the cause Dr. Hashimoto must be rolling in his grave over this. If you have any questions about Hashimoto’s lemmie know I love to do research. Stay Healthy. Edith To: Thyroiditis Sent: Wednesday, September 7, 2011 5:10 PMSubject: Re: Hello Hi Edith,Welcome! I take it that you never tried the Nutri-Meds. I found them to work wonderfully during the Armour shortage.We have all had pitiful experiences with biased doctors. I went into a Myxedema Coma in 2004 and am lucky to be alive. We cannot let our anger define us. Please try to redirect your anger into getting answers and your health back. UN and under treated Hashis can cause other diseases. When the immune system becomes out-of-balance and in the case of Hashis it not only attacks the thyroid, but can also damage other organs, too.How can we help?Best wishes,~Bj >> Hello All, > I’m Edith a newbie here and I was diagnosed with Hashimoto’s in 2006 and I was told about it January of this year. I am having A LOT of problems dealing with this because my doctor in 06 wasn’t the caring doctor I believed him to be and never told me what kind of blood test I was getting and never told me the results. So my gland wasn’t getting treated until now. > The other reason why I’m having problems with this is I believe that my mother also had this disorder but was never diagnosed and now she has RA ( it’s in her spine ) because of the hashimoto’s. I do not want to be like her.> This is so hard for me. I want treatment for this hashimoto’s not the gland, treat the cause not the symptom it’s logical, but these doctor’s refuse to even try to treat hashimoto’s. I hate them all. Now I might have Psoriasis which can be caused by hashimoto’s among many other diseases. My body is attacking me, my immune system is running wild and everywhere I look I see immune boosters and I need an immune suppressor. The only good thing out of this is I rarely get sick, big whoop> I am so angry at these doctors I don’t even want to take this synthetic T4 crap and since the dosage it low I just might stop I wasn’t on anything before and my TSH was normal.> I’m sorry I dumped on you guys but like I said I’m having a hard time and I have no one to talk to.> Stay Healthy Everyone> Edith> Quote Link to comment Share on other sites More sharing options...
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