Guest guest Posted December 27, 2004 Report Share Posted December 27, 2004 The diagnoses you got for your Dad sounds much the same as I started out with my mother........the patient keeps changing symptoms and some just are things (like the blank stares) you don't add up until you read all about LBD.......If you read most of the articles you can get from the LBD website or Google, I think you'll find that some say a good MRI and good reader can detect the protein bodies but there is no way to be absolutely certain until post mortem (sorry to be blunt)...the articles and our doctor agree it's usually process of elimination and good communication of all you are seeing to the doctor......when I changed doctors for her a few months ago I had used a highliter on several articles printed on LBD and was amazed at all the things I and our caregivers had noticed but never added up.....I took those in to the new physician and laid that out for him......he noticed his own cues after 2 visits and concurred.......I only found out about LBD after arguing over the side effects of drugs (antipyschotics) with the old doctor and coming up with all these remarks aboutLBD when I googled the drugs......we took Mom off those drugs and got some improvements in a few days...and switched doctors.....less is better...and even something like Sudafed can upset what is going on.......last ........if you can get your point across to the doctor to have him cnsider LBD...do you really want to put your Dad thru a lot of testing?????...good luck DLB My dad has been diagnosed with vascular dementia, however, I suspect that he has DLB as the symptoms are more closely alligned with that. I am getting the impression that both receive similar treatment, with the drugs being mostly a trial and error scenerio. So would it really be of any benefit to have a neurological done that might tell us if he has DLB? He is going very quickly downhill and I want to be informed of how to slow this degeneration and also about drugs. He is on an antidepressant, anxiety medicine, and anti-psychotic meds. The shaking is getting to be a huge issue as it is making even simple tasks difficult for him. But don't Parkinson meds sometimes make psychotic behavior worse? Thank you for any info on your personal experience. e Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2004 Report Share Posted December 27, 2004 I am fairly new to the group and have been learning so much from everyone else. Thank you all. I had to respond simply because this sounds very much like my situation with my grandmother. She was taking Ativan (lorazepam) along with antidepressant, heart, thyroid, bp meds, ect. She came down with a cold so the dr. said to give her sudafed. That was the beginning of our adventure. Her shaking became so bad that she, too, could no longer do simple tasks. She wound up in the er where her dr. told me to put her in a nursing home because she was never going to rebound. I brought her home and took her off the ativan and sudafed. The tremors subsided but do occassionally return. As far as the neurologist, I couldn't really see much point in it since the psychologist is very familar with LBD and I consult him regarding any change in meds. However, the family has now decided that she should be pre-enrolled in the brain bank program in our state. One of the criteria is a complete neurologic work up. I suppose I will now have to beg for a referral. Just my thoughts. Good luck. D. > > My dad has been diagnosed with vascular dementia, however, > I suspect that he has DLB as the symptoms are more closely > alligned with that. I am getting the impression that both receive > similar treatment, with the drugs being mostly a trial and error > scenerio. So would it really be of any benefit to have a > neurological done that might tell us if he has DLB? > He is going very quickly downhill and I want to be informed of > how to slow this degeneration and also about drugs. He is on an > antidepressant, anxiety medicine, and anti-psychotic meds. The > shaking is getting to be a huge issue as it is making even > simple tasks difficult for him. But don't Parkinson meds > sometimes make psychotic behavior worse? Thank you for any > info on your personal experience. e Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2004 Report Share Posted December 29, 2004 hello. my name is sharon m and my husband donnie and i caregive for my 70 year old gfather who has lbd. yes his neurologist finally agreed on that diagnosis since dad has reacted poorly to several medications including sinemet. dad is only on exelon and now has added namenda. he also takes a full aspirin, hctz (blood pressure/diuretic) and zoloft 100mg. we have only had him on namenda for one week so as of yet i cannot comment on its benefits. he did well on exelon but it seems to have plateaued so we added namenda. the hospice nurses said that they have seen namenda work well for up to one year and then the decline after that is very very quick, can anyone tell me if they have noticed such to be true????? dad parkinson smyptoms come and go, in severity and in frequencvy. his walking is very severe now, and his mood is very very someber and sad. he told me after we argued about him using bedside commode or urinal versus falling in the bathroom and hitting tile floor, or tub, sink or toilet as he falls. he told me he would rather die from a fall or complications from a fall then from this 'damn disease fo the little man in my head' (what he calls lbd) and whom am i to argue with that, when i was so sick after my failed surgeries i was in teh same frame of mind -- i am definetly my dads daughter!!!i finally got him to agree to call for help, but he will wait until i walk by and ask him and then i help him get up and go to the bathroom i stay close once he is up, but let him go by himself. medicines all react different, sinemet made 'the little man in his head' talk tooo much and about bad things, made dad and ogre a real a**hole too. he is now unable to remember how to cut his food so we give him everything chopped as he stuffs his mouth as full as he can,. and then tries to swallow and cant becuase his mouth is way too full. we keep snacks by his bed, he is losing weight although he still does have a healthy appetite. as long as he wants to eat, i will let him eat whatever he desires as long as it doesnt upset his stomach, we have found he cannot swallow apples even if cut in small pieces, and cant swallow lettuce so those are boht of his menu. and i now have hospice and they are wonderful, thye bathe him two times a week ad a nurse comes two other days a week. so nice to know he is being checked on. i recommend it to amyone who feels overwhelmed by this awful disease. good luck, sharon m pensacola, fl > > > Date: 2004/12/27 Mon PM 01:27:22 EST > To: LBDcaregivers > Subject: DLB > > > > My dad has been diagnosed with vascular dementia, however, > I suspect that he has DLB as the symptoms are more closely > alligned with that. I am getting the impression that both receive > similar treatment, with the drugs being mostly a trial and error > scenerio. So would it really be of any benefit to have a > neurological done that might tell us if he has DLB? > He is going very quickly downhill and I want to be informed of > how to slow this degeneration and also about drugs. He is on an > antidepressant, anxiety medicine, and anti-psychotic meds. The > shaking is getting to be a huge issue as it is making even > simple tasks difficult for him. But don't Parkinson meds > sometimes make psychotic behavior worse? Thank you for any > info on your personal experience. e > > > > > > > Welcome to LBDcaregivers. > > > Quote Link to comment Share on other sites More sharing options...
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