Guest guest Posted January 20, 2004 Report Share Posted January 20, 2004 Hi , Welcome, and as you said, you will be able to learn much from this group. In return, by sharing your experiences, we will learn from you as well. You asked about the advantages of one type of doctor over another. Both neurologists and psychiatrists who specializes in dementia are excellent choices, provided that they are educated and experienced in LBD. It is so encouraging to see more people diagnosed in the early stages now. My mom was diagnosed for ten years (1990-2000) with Alzheimer's and we learned of LBD through autopsy. As for clinical trials, I have seen only one in the last year that specifically listed LBD, and that was in combining (I think) Aricept and Seroquel. The difficulty in holding clinical trials is that every LBD person has their own distinct reactions to each drug or combination of drugs. In addition, what works at any given point can become ineffective and then a new combination will be required. Is your mom currently on any medicines for LBD? What are her symptoms? As your father and mother have concerns about moving, my family also worried about taking mom from her familiar surroundings of 20+ years. Thankfully, Mom's home was only one level, so there was not the worry about stairs that so many LBD people face. When she finally moved (mid stage of the disease), she adjusted fine. I'm sorry to hear that your father is having a difficult time. As the primary caregiver, he will need strong support from everyone around him. You might also mention to him that there is a spouse group for LBD caregivers: http://www.lewybodydementia.org/emailgroup.html You said " I feel somewhat desperate to protect myself from worry and fear of the future while struggling to prepare in a proactive way. Any tips? " ...... The best thing to do, proactively, is to learn all that you can and watch symptoms and medicines closely. Nothing can prevent the worry, but this site can help prepare you for what is down the road, with information and great support. Take care, Peggy > Hi All: > > I am not sure the proper protocol for joining this group but am anxious to > learn. My mother, age 66, was diagnosis with LBD in Aug. 2003 and though I > have read a lot and searched the internet I still have a million questions. > Wondering how to go about finding out more? > > I signed up for the Caregivers Group on Friday and have been overwhelmed by > the number of emails. There have been discussions about things I did not > know should be considered with LBD (i.e., B-12 shots, Neuroleptic Malignant > Syndrome, use of OT, etc.) Eager to learn what they are all about. I have > also noticed that many have referenced a Neurologist as the primary care > giver of there LOs but my mom is being treated by a Psychiatrist who > specializes in Dementias. Are there advantages of one over the other that > anyone knows about? Are there any LBD specific clinical trials or research > groups that you know of? Obviously, we are willing to try just about > anything. > > It appears that we are still in the early stages as my mom is still able to > care for herself and drive but is no longer able to work. Some of the > emails I have read are so frightening to me. I feel somewhat desperate to > protect myself from worry and fear of the future while struggling to prepare > in a proactive way. Any tips? > > My parents have been married for 45 years and my father is still working. > He, too, is desperate to hold on to the hear and now and is even more in > denial about what the future holds than the rest of us. He is very > resistant to make any plans for the future. We have been trying to get him > to sell their condo (2 story) and move to a single floor plan with wider > hallways but when my mother gets tearful he caves. > > I know all of you reading this know this place I am in and probably think I > should enjoy it while I can. I am trying hard to do that but would love to > pull from the pool of your having already walked through this part and from > your experience, mistakes and wisdom in hopes of lightening the load in my > family and for future families. > > Wondering also if you all will be watching the documentary on PBS on > Wednesday, Jan 21 The Forgetting: A Portrait of Alzheimer's or if any of you > have seen it already? Want to watch it but am nervous it will be too hard. > > Quote Link to comment Share on other sites More sharing options...
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