Guest guest Posted March 30, 2006 Report Share Posted March 30, 2006 Hi Marilyn, Just introducing myself because I noticed you are in Chicago. We are in St. . As far as help, I can only recommend the information that you will find on this website as far as details are concerned. We use a Movement Disorder Specialist with the ian Bros. Hospital system located in Elk Grove Village. My husband has been under the care of Parkinson Disease specialists since his diagnosis. (We first went to Rush Presb.) This same doctor thought that my husband's symptoms sounded like a Lewy Body Disease. Actually, it is probably Parkinson Disease with dementia. You are ahead of the game in that you already have a caregiver for your mother. How did you find someone? If you stay tuned to this site, you will learn a lot and there are videos and DVD's to order to further give you information. I hope that you will find answers here and/or, if need be, just use this site to vent. Arlene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2006 Report Share Posted March 30, 2006 Hi Marilyn and welcome to our group. We hope we can give you support as you care for your mother. From what you described it does sound LBDish. You don't say what meds your mother is on. There are a few that do not work well with LBD. You will find that each LO (loved one) is very individual and reacts differently to meds. in Cresswell ON, Canada Long distance Caregiver to Margaret (Mum) aged 76 Marilyn Versten wrote: I joined your group this morning in hopes of finding out more information about LBD and for help in caring for someone with this disease. My mother who is 82 years old, has been showing many symptoms of LBD for several months. The doctors have been unable up til now to give us a positive diagnosis. She has gone through many tests and the answers we get is that the test results are not normal, but not abnormal enough to prove any diagnosis, however they have said that LBD is one of the possibilities. I have spent weeks on the internet investigating LBD and other similar diseases, and have settled in on LBD as the probable cause of my mothers current state. My mother lived in Las Vegas for many years, and about three years ago, started showing some signs of forgetfulness, along with some shaking, and difficulty with numbers. We moved her back to Chicago, and into our house, because I felt uncomfortable having her so far away. She has deteriorated slowing over the last few years (can't balance a checkbook etc., but was still able to drive and get around pretty well). In January of this year she began to really exhibit symptoms of LBD. She started falling down frequently. She has periods where she is extremely confused and forgets simple things like the names of her grandchildren. When she is at her worst she believes that my husband is her husband. She is having frequent hallucinations, involving people and animals. A few days ago her hallucinations also involved her sense of touch, She was convinced that one of our dogs was in her bed and wouldn't stop licking her. (The dog was sleeping in our bed at this time). Sometimes she has difficulty holding a fork and feeding herself. Other times she is perfectly lucid. The doctors did make some adjustments to her medicine last month after a particularly bad couple of weeks and that did seem to bring her back to almost normal. Then this past weekend, I saw her starting to slip again and over the past few days her symptoms have been pretty bad, although they do fluctuate throughout the day. We have brought in a caregiver for her during the day while we are at work. The nights are difficult for us, but when my husband is home they are bearable since he is able to pick her up when she falls. His job however, requires heavy travel, and he is normally gone several days a week. My brother and sister both live out of state so her care is totally in my hands. I have three grown children who no longer live at home, but I still have a 14 year old at home, and this has been very difficult for her as well. I would love to be able to get a positive diagnosis so at least I can be sure of what we are dealing with. Also, any suggestions as to how to be able to continue to care for her as she declines, short of putting her in a nursing home, which I promised her I would never do. I also need to try to keep things as normal as possible for the sake of my 14 year old. Any thoughts or ideas would be greatly appreciated. Marilyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2006 Report Share Posted March 31, 2006 Hi Marilyn, The doctor that we saw at Rush was Dr. Goetz, certainly outstanding in his field but extremely busy. He is the head of the Movement Disorders Dept. and there are several other doctors there that have a following. Our present doctor, Brandabur, was a student of Dr. Goetz and I think she mentioned that he was instrumental in her specializing in this field. If I understand correctly, she isn't an expert in LBD but is highly knowledgeable about it and understands the chemistry, etc. As I said, she is at ian in Elk Grove. The center there is listed as a center of excellence by the National Parkinson Foundation and she is head of the dept. We would have stayed with Goetz but it was a hassle going to Chicago for appts. and he does have limited appts. at Oak Park Hospital, but I mean limited. He used to have an office in Oak Brook but I don't know if he still has it. Hope this info helps. I certainly know about the getting up all night. My husband now takes 12.5 mg. of Seroquel at bedtime and he usually sleeps until morning. Thankfully, or I'd be a basket case. Arlene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2006 Report Share Posted March 31, 2006 Marilyn, I forgot to mention that when taking medications, I have found that they must not be given by the handful and all together. I space all medications with 1/2 hour, 3/4 hours, or 1 hour intervals between. It seems that LBD people are extremely sensitive to meds. I don't know how much Seroquel your mother is on but the half my husband is on is given at bedtime. Arlene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2006 Report Share Posted March 31, 2006 Marilyn - welcome to the board - this board is very useful in finding facts and therapeutic for venting. Share with us the medications your mother is on currently. Take the time to view the files and databases on this board. Also visit www.lbda.org for even more information. The other caregivers will have to give you the advice you request in this post, since my mother is in a nursing home. ; loving daughter of Maureen of Boston, MA; finally diagnosed with LBD on 2/06 after also being diagnosed with everything from AD to Vascular Dementia caused by mini strokes to Binswengers...; was victim to rapid decline from Risperidone (or combination of Risperidone with other drugs OR possibly received another " bad drug " when she was observed/tested in a hospital in 10/05); in a NH since 11/05. > > I joined your group this morning in hopes of finding out more > information about LBD and for help in caring for someone with this > disease. My mother who is 82 years old, has been showing many symptoms > of LBD for several months. The doctors have been unable up til now to > give us a positive diagnosis. She has gone through many tests and the > answers we get is that the test results are not normal, but not abnormal > enough to prove any diagnosis, however they have said that LBD is one of > the possibilities. I have spent weeks on the internet investigating LBD > and other similar diseases, and have settled in on LBD as the probable > cause of my mothers current state. > > My mother lived in Las Vegas for many years, and about three years ago, > started showing some signs of forgetfulness, along with some shaking, > and difficulty with numbers. We moved her back to Chicago, and into our > house, because I felt uncomfortable having her so far away. She has > deteriorated slowing over the last few years (can't balance a checkbook > etc., but was still able to drive and get around pretty well). In > January of this year she began to really exhibit symptoms of LBD. She > started falling down frequently. She has periods where she is extremely > confused and forgets simple things like the names of her grandchildren. > When she is at her worst she believes that my husband is her husband. > She is having frequent hallucinations, involving people and animals. A > few days ago her hallucinations also involved her sense of touch, She > was convinced that one of our dogs was in her bed and wouldn't stop > licking her. (The dog was sleeping in our bed at this time). > Sometimes she has difficulty holding a fork and feeding herself. Other > times she is perfectly lucid. > > The doctors did make some adjustments to her medicine last month after a > particularly bad couple of weeks and that did seem to bring her back to > almost normal. Then this past weekend, I saw her starting to slip again > and over the past few days her symptoms have been pretty bad, although > they do fluctuate throughout the day. > > We have brought in a caregiver for her during the day while we are at > work. The nights are difficult for us, but when my husband is home they > are bearable since he is able to pick her up when she falls. His job > however, requires heavy travel, and he is normally gone several days a > week. My brother and sister both live out of state so her care is > totally in my hands. I have three grown children who no longer live at > home, but I still have a 14 year old at home, and this has been very > difficult for her as well. > > I would love to be able to get a positive diagnosis so at least I can be > sure of what we are dealing with. Also, any suggestions as to how to be > able to continue to care for her as she declines, short of putting her > in a nursing home, which I promised her I would never do. I also need > to try to keep things as normal as possible for the sake of my 14 year > old. > > Any thoughts or ideas would be greatly appreciated. > > Marilyn > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2006 Report Share Posted March 31, 2006 Hi Arlene, Thanks for the response. We lucked out on our caregiver. She was taking care of my friends mother until they needed to go to 24 hour care recently. The timing was perfect as my mother was just starting to deteriorate, so we hired her as soon as she became available. Unfortunately, she normally only works five or six hours a day, and we are starting to find that we can not leave my mother alone at all. She does stay if I can't get home on time, but she has children at home and sometimes just can not stay. My husband feels that the time is approaching quickly that we need to get someone in the house overnight, since mom gets up six or seven times a night and therefore, we are not getting any solid sleep since we're running into her room all night long to take care of her. Our current neurologist is throwing up his hands and saying he can't help us any further but has recommended someone else who we're trying to get an appointment with. Can you tell me the names of the doctors at Rush and at ian Brothers as I'm looking for as many resources as I can get since there seems to be so few doctors that have a lot of experience with it. Marilyn ________________________________ From: LBDcaregivers [mailto:LBDcaregivers ] On Behalf Of Zweibeers@... Sent: Thursday, March 30, 2006 5:10 PM To: LBDcaregivers Subject: Re: Looking for help Hi Marilyn, Just introducing myself because I noticed you are in Chicago. We are in St. . As far as help, I can only recommend the information that you will find on this website as far as details are concerned. We use a Movement Disorder Specialist with the ian Bros. Hospital system located in Elk Grove Village. My husband has been under the care of Parkinson Disease specialists since his diagnosis. (We first went to Rush Presb.) This same doctor thought that my husband's symptoms sounded like a Lewy Body Disease. Actually, it is probably Parkinson Disease with dementia. You are ahead of the game in that you already have a caregiver for your mother. How did you find someone? If you stay tuned to this site, you will learn a lot and there are videos and DVD's to order to further give you information. I hope that you will find answers here and/or, if need be, just use this site to vent. Arlene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2006 Report Share Posted March 31, 2006 - Here are some of the medications they have tried: Resperdal, seroquil, and sinemet. All of these seemed to make her worse. They then started her on Lamictal. That started at 25 mg daily and was slowly brought up to 100 mg daily. On the lower dosages it seemed to help her a great deal for several weeks. At the 100 mg dose she seems to be worse than before. I'm talking to the doctor today about lowering the dosage back down a little to see if that helps. In the one day that I've been on this board, I've already found a great deal of information and help. Thanks all. Marilyn ________________________________ From: LBDcaregivers [mailto:LBDcaregivers ] On Behalf Of octoryrose Sent: Friday, March 31, 2006 6:06 AM To: LBDcaregivers Subject: Re: Looking for help Marilyn - welcome to the board - this board is very useful in finding facts and therapeutic for venting. Share with us the medications your mother is on currently. Take the time to view the files and databases on this board. Also visit www.lbda.org for even more information. The other caregivers will have to give you the advice you request in this post, since my mother is in a nursing home. ; loving daughter of Maureen of Boston, MA; finally diagnosed with LBD on 2/06 after also being diagnosed with everything from AD to Vascular Dementia caused by mini strokes to Binswengers...; was victim to rapid decline from Risperidone (or combination of Risperidone with other drugs OR possibly received another " bad drug " when she was observed/tested in a hospital in 10/05); in a NH since 11/05. > > I joined your group this morning in hopes of finding out more > information about LBD and for help in caring for someone with this > disease. My mother who is 82 years old, has been showing many symptoms > of LBD for several months. The doctors have been unable up til now to > give us a positive diagnosis. She has gone through many tests and the > answers we get is that the test results are not normal, but not abnormal > enough to prove any diagnosis, however they have said that LBD is one of > the possibilities. I have spent weeks on the internet investigating LBD > and other similar diseases, and have settled in on LBD as the probable > cause of my mothers current state. > > My mother lived in Las Vegas for many years, and about three years ago, > started showing some signs of forgetfulness, along with some shaking, > and difficulty with numbers. We moved her back to Chicago, and into our > house, because I felt uncomfortable having her so far away. She has > deteriorated slowing over the last few years (can't balance a checkbook > etc., but was still able to drive and get around pretty well). In > January of this year she began to really exhibit symptoms of LBD. She > started falling down frequently. She has periods where she is extremely > confused and forgets simple things like the names of her grandchildren. > When she is at her worst she believes that my husband is her husband. > She is having frequent hallucinations, involving people and animals. A > few days ago her hallucinations also involved her sense of touch, She > was convinced that one of our dogs was in her bed and wouldn't stop > licking her. (The dog was sleeping in our bed at this time). > Sometimes she has difficulty holding a fork and feeding herself. Other > times she is perfectly lucid. > > The doctors did make some adjustments to her medicine last month after a > particularly bad couple of weeks and that did seem to bring her back to > almost normal. Then this past weekend, I saw her starting to slip again > and over the past few days her symptoms have been pretty bad, although > they do fluctuate throughout the day. > > We have brought in a caregiver for her during the day while we are at > work. The nights are difficult for us, but when my husband is home they > are bearable since he is able to pick her up when she falls. His job > however, requires heavy travel, and he is normally gone several days a > week. My brother and sister both live out of state so her care is > totally in my hands. I have three grown children who no longer live at > home, but I still have a 14 year old at home, and this has been very > difficult for her as well. > > I would love to be able to get a positive diagnosis so at least I can be > sure of what we are dealing with. Also, any suggestions as to how to be > able to continue to care for her as she declines, short of putting her > in a nursing home, which I promised her I would never do. I also need > to try to keep things as normal as possible for the sake of my 14 year > old. > > Any thoughts or ideas would be greatly appreciated. > > Marilyn > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2006 Report Share Posted March 31, 2006 Marilyn. You might want to click on the LBDA Site after my name It has lots of the basic info and the new newsletter too. You can find the previous newsletters too Donna R Do you want to read more about Lewy Body? You can also read the Thistle, the LBD Newsletter. Just click on: http://www.lewybodydementia.org RE: Re: Looking for help Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2006 Report Share Posted March 31, 2006 Thanks for the information Arlene. The neurologist we were told to see is out of Glenview, but his earliest appointment is in September. Our personal doctor is going to make some phone calls and see what he can do. If he doesn't come up with something by early next week, I'm going to try to get in with the doctor you mentioned out of Rush, although I guess that's going to be difficult also. If that doesn't work, I may try the doctor you mentioned out of ian Bros. Marilyn ________________________________ From: LBDcaregivers [mailto:LBDcaregivers ] On Behalf Of Zweibeers@... Sent: Friday, March 31, 2006 9:54 AM To: LBDcaregivers Subject: Re: Looking for help Hi Marilyn, The doctor that we saw at Rush was Dr. Goetz, certainly outstanding in his field but extremely busy. He is the head of the Movement Disorders Dept. and there are several other doctors there that have a following. Our present doctor, Brandabur, was a student of Dr. Goetz and I think she mentioned that he was instrumental in her specializing in this field. If I understand correctly, she isn't an expert in LBD but is highly knowledgeable about it and understands the chemistry, etc. As I said, she is at ian in Elk Grove. The center there is listed as a center of excellence by the National Parkinson Foundation and she is head of the dept. We would have stayed with Goetz but it was a hassle going to Chicago for appts. and he does have limited appts. at Oak Park Hospital, but I mean limited. He used to have an office in Oak Brook but I don't know if he still has it. Hope this info helps. I certainly know about the getting up all night. My husband now takes 12.5 mg. of Seroquel at bedtime and he usually sleeps until morning. Thankfully, or I'd be a basket case. Arlene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2006 Report Share Posted March 31, 2006 marilyn, welcome to our family but i am soo sorry you had to look for us. lbd is an awful disease, my then fiance and ihad to move from tennessee to pensacola florida to take care of my dad it was very very diffiuclt, dad had the severe fluctuations and his dr jekyll moods were almost always difrected towards me yet donnie could do no worng. at all. it was a very hard 2.5 years from the time we moved here until he died in sept 2005. dad went from slow functioning to needeing a walker after a severe parkinsionisn episodes. we had to hire cg to stay with him so donnie and i could get out once a week together, donnie didnt work the first 1.5 years here in order to ehlpe me care for daddyl. donnie had his hands full as i have severe kidney issues and then dadd's lbd donnie had it very vrery tough. first of all cal your primary care doctor, explain the situaion to him/her . hospice may be a consideration hospice is different for each state, here in florida, they do not have to be termianl but have health issues that wont get better , and are not candidates for surgery to prolong life etc. dad had hospce for over 1 year here. they kept him bathed and his hair cut adn beard trimmed and shaved, i called the council of aging and elders affairs both of which have programs for help for caregivers even having people come in to your home to give you respite care. some of them are government funded so you dont have to pay. meals on wheels is a good program dad was eligible for one meal a day to be delievered so i had the lunch meal delivered and i knew even if i was sick dad would have a good meal until donnie or a caregiver came to feed him dinner. donnie found a wonderful job 1 year before dad died. a very understanding boss who truly believes family first. also call the alz assoc sometimes they have local support groups even tho it isnt lbd they have wonderful ideas that may help you too and they will provde a caregiver for you whileyou attend the meetings. are you or she active in a church, ask teh church for help many times htey have volunteers that come sit with the elderly to chat with them, i dont know how much attention span you are dealing with, but sometimes playing cds for soothing can help, or older short cartoons that really dont have any plot to say my dad couldnt follow movies. but felix the cat, casper or the really old disney movies where the cartoons are only 10 minutes like steamboat willie etc. or maybe the old silent movies. just a thought good luck and keep knockoing on doors asking for help, it is out htere, you just have to look and ask, hugs sharon m Date: 2006/03/30 Thu PM 01:41:38 EST To: <LBDcaregivers > Subject: Looking for help I joined your group this morning in hopes of finding out more information about LBD and for help in caring for someone with this disease. My mother who is 82 years old, has been showing many symptoms of LBD for several months. The doctors have been unable up til now to give us a positive diagnosis. She has gone through many tests and the answers we get is that the test results are not normal, but not abnormal enough to prove any diagnosis, however they have said that LBD is one of the possibilities. I have spent weeks on the internet investigating LBD and other similar diseases, and have settled in on LBD as the probable cause of my mothers current state. My mother lived in Las Vegas for many years, and about three years ago, started showing some signs of forgetfulness, along with some shaking, and difficulty with numbers. We moved her back to Chicago, and into our house, because I felt uncomfortable having her so far away. She has deteriorated slowing over the last few years (can't balance a checkbook etc., but was still able to drive and get around pretty well). In January of this year she began to really exhibit symptoms of LBD. She started falling down frequently. She has periods where she is extremely confused and forgets simple things like the names of her grandchildren. When she is at her worst she believes that my husband is her husband. She is having frequent hallucinations, involving people and animals. A few days ago her hallucinations also involved her sense of touch, She was convinced that one of our dogs was in her bed and wouldn't stop licking her. (The dog was sleeping in our bed at this time). Sometimes she has difficulty holding a fork and feeding herself. Other times she is perfectly lucid. The doctors did make some adjustments to her medicine last month after a particularly bad couple of weeks and that did seem to bring her back to almost normal. Then this past weekend, I saw her starting to slip again and over the past few days her symptoms have been pretty bad, although they do fluctuate throughout the day. We have brought in a caregiver for her during the day while we are at work. The nights are difficult for us, but when my husband is home they are bearable since he is able to pick her up when she falls. His job however, requires heavy travel, and he is normally gone several days a week. My brother and sister both live out of state so her care is totally in my hands. I have three grown children who no longer live at home, but I still have a 14 year old at home, and this has been very difficult for her as well. I would love to be able to get a positive diagnosis so at least I can be sure of what we are dealing with. Also, any suggestions as to how to be able to continue to care for her as she declines, short of putting her in a nursing home, which I promised her I would never do. I also need to try to keep things as normal as possible for the sake of my 14 year old. Any thoughts or ideas would be greatly appreciated. Marilyn Quote Link to comment Share on other sites More sharing options...
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