Guest guest Posted November 30, 2004 Report Share Posted November 30, 2004 Welcome D, DOCTOR: It's encouraging that your grandmother's doctor said she would look up the disease. A good technical article to print out for her can be found at the LBD web-site www.lewybodydementia.org under Links To Other Sites. It's entitled Dementia With Lewy Bodies by Bradley F. Boeve. MEDICATIONS: I've not heard about Trazadone being given for hallucinations. Normally it's for depression, anxiety, and for sleep. We tried it for sleep on my Dad and he was too foggy and befuddled during the day so we stopped it. Many LBD patients (my father too) have done well on Exelon (Rivastigmine) for hallucinations and cognitive problems. As far as Paxil (anxiety/depression), I've heard some don't like it but my Dad has been on it for quite awhile. Be careful when changing meds...don't make more than one change at a time or you won't know what's working and what's not. Keep notes on everything (including over-the-counter) for reactions, doses, etc., as this will be invaluable later on. Withdrawal from one med can impact the effectiveness of another. CHILDREN: We didn't have children at home when we cared for my Dad but I can't see how it wouldn't impact them. Perhaps someone else with this experience can chime in. Your grandmother is lucky to have you and your husband to care for her and be her advocates. Take it a day at a time. Hugs...Jan in Sacramento Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2004 Report Share Posted December 1, 2004 , I am pretty sure that my grandpa is in the later stages of the disease. They say that anti-deppresents and anti-psychotic medication can be very harmful to those who suffer from LBD. Things like Adavan and Haldol can onset symptoms very quickly. My grandpa has tried many of the medications out there. The only one that seemed to help his hallucinations is Aricept. Although it just seems that every individual who suffers from the disease is so different. Adelle > >Reply-To: LBDcaregivers >To: <LBDcaregivers > >Subject: Re: Introduction >Date: Tue, 16 Nov 2004 20:32:49 -0600 > > > Introduction > > > > > > > >Hi everyone. I am new to the group and desperate for any info > >regarding this illness. I am caring for my husband's 83 year old > >grandmother. Fortunately we already live together so that is one > >adjustment that is already in place. She has many health problems > >but a little over a year ago I notice major lapses in memory. I > >brought this to the primary care doc. attention and she was > >diagnosed with dementia. No other info was given and at the time I > >was trying to deal with her deep depression so I really didn't give > >it anymore thought. My husband and I had noticed the memory issues > >continuing to worsen so he let his father and aunt know. They both > >commented that grandma sounded wonderful on the phone so they were > >not concerned. ( They live in Tenn and we live in Fl) In early > >Sept.2004 Grandma began with tremor. It became so bad she could no > >longer walk without assistance and also needed help feeding > >herself. Once again primary dr. was not concerned and said it may > >go away. By the end of Sept. she was more confused than I had ever > >seen. She could not dress herself properly and was not tending to > >hygene very well. This woman was very proper so I knew there was a > >big problem. I took her to the ER and she was admitted for 3 days. > >They did CT scans and tons of blood work only to find nothing > >wrong. Dr. told me this was as good as she would get and I should > >place her in NH. I declined and brought her home. Thankfully she > >has rebounded some. She has episodes of deep confusion and > >hallusinations. They usually last 4 days or so and then she snaps > >out of it with no memory of the previous days. She just had another > >episode but it lasted 8 days. During this time she was much more > >coherent but the hallusinations were much more intense. Her > >psychiatrist finally mentioned Lewy Body last week. I had figured > >it out 2 weeks prior but have learned to let them do the > >diagnosing. I think her original episode in Sept. was caused from > >ativan. She found the bottle I had hidden and took about 4. That > >seemed to start it all. There also could be a link with sudafed. > >That most definitely contributed to the tremor. I informed the > >primary doc. about the potential diagnosis from the psych. and she > >did admit she has never heard of Lewy Body but promised to look into > >it. I will be phoning her in a few days to see if she did. > > > >I have many concerns with regard to Grandma. I also have 2 small > >children ( 5 and 7) and am concerned about how this will affect > >them. I have been fortunate to have some respite help. However it > >certainly is a major change in life style. So far Grandma is not > >too difficult. She doesn't sleep well at night and we do not leave > >her alone. I don't want to place her in a nursing home. She was so > >much worse in the hospital, I just can't imagine her living very > >long outside of the home. I would love any advice you all have for > >me. I do have the legal aspects taken care of, and she is on > >minimum amount of meds for other illnesses. She is taking Paxil for > >depression and trazodone for hallusinations although neither seems > >to be making an impact. > >Thank you. > > D > > > > > > > > > > > > > >Welcome to LBDcaregivers. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2008 Report Share Posted November 24, 2008 Hey there, My name is Terrie and I have just joined this group. I have a surgery date of January 6, 2009 for GRDS. I am VERY excited and a little nervous. I thought it would be great to participate in some group conversations - and so I asked to join. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 25, 2008 Report Share Posted December 25, 2008 Sheila Happy Holidays and welcome to the group. You are certainly going about things in the right way...doing some research and getting a feel for things. I'll keep my fingers crossed that you can get insurance approval to see Dr. K. Thanks for the introduction, it is fine if you wish to be a little quite...but the more you post, the better we get to know you, and you can direct any post towards learning what you would like to know. Welcoming hugs Jo 8 years post-op Quote Link to comment Share on other sites More sharing options...
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