Guest guest Posted June 11, 2011 Report Share Posted June 11, 2011 Hi Jim, I apologize if I misinterpreted the drug which helped your wife Anique. Your book was loaned to me the first day mom entered the dementia facility by the director. I was very overwhelmed at that time trying to come to terms with not only the diagnosis of LBD and its treatment, but the emotional turmoil of putting mom in a dementia facility. I had never even heard of most of the drugs before. I'm sorry if I misread your information. Yes, mom's psychiatrist now is a GERIATRIC psychiatrist and the staff geriatric psychiatrist at her facility. He made the diagnosis of LBD a few weeks ago. Up until that point the formal diagnosis was " Atypical dementia with periods of delirium " . That title made me continually feel as if mom's diagnosis was a mystery to everyone. She even spent a week in an elderly behavioral unit in the fall without being diagnosed properly by the psychiatrists there. But in their defense - Mom seemed to have this uncanny ability to control her behavior if she wanted to - I've been so frustrated how she seems to " snow " the doctors when she sees them. It was another relief reading in your book that it's common with LBD - the peaks as well as what you call " show time " . Anyway, the zyprexa seems to have made a noticeable difference in her mental status. Another factor is the wonderful staff of the dementia facility. They are very familiar with LBD and give her amazing care. We're all amazed at how well she's doing - but we also know too well that change is the only constant in this disease. We're just grateful she seems happy and at peace for now which is my constant prayer for her. Thank-you for sharing all the information in your wonderful book. It is such a comfort knowing that all these terrible, seemingly unrelated symptoms come under the umbrella of one disease. Marcia _____ From: LBDcaregivers [mailto:LBDcaregivers ] On Behalf Of Jim Sent: Thursday, June 09, 2011 7:36 PM To: LBDcaregivers Subject: Re: New Member Hi Marcia, Thank you for reading our book. And I am so sorry to hear that you have joined the ranks of LBD caregivers. We know this is not an easy job! I hope our book helps you as others have told us that it helped them. However, I'm very concerned that you may have misread what we wrote about Zyprexa. Our only reference to that drug is on page 103, where we report that " caregivers have reported more negative than positive experiences with Abilify and Zyprexa. " I wonder if you confused that sentence with one in a paragraph on the same page where I said that Anique reacted poorly to Risperdal but had good results with Seroquel? Seroquel is still many physicians' drug of choice for acting out behaviors and hallucinations, by the way, although it has its problems too. You didn't say if that was a drug that your specialist had tried. I notice that you mentioned a psychiatrist. Please read about choosing a specialist in Chapter Two. The problem with psychiatrists is that they are most comfortable prescribing the same kind of drugs our loved ones have the most difficulty with-Zyprexa, for instance. Now if your specialist is a GERIATRIC psychiatrist, that's different-they are usually more aware of the LBD issues. Otherwise, you might want to get a second opinion. Jim Jim and Helen, The Whitworths of Arizona www.lbdtools.com > > Hi Donna, > > > > Hi everyone. Yes, I'm another newbie - signed up June 1st. I'm feeling > very overwhelmed this past week from the move of my 81 yr old mom to a > dementia care facility and the diagnosis of LBD. Emotionally I'm feeling a > lot of guilt right now, as well as relief which I hate to admitl It's a > relief that all her symptoms now have a name too, but finding my way through > all the new drug recommendations is more than I can handle. Mom is > already on so many drugs. We avoided drugs for as long as possible - my Mom > never took more than aspirin most of her life. Her problems are so many > that I don't know where to begin. Her first major problem was severe back > pain from a myriad of spinal issues. She's now on the Fentanyl patch - > morphine almost did her in - ended up in the ER. In the beginning we went > the " natural route " - she had a wonderful chiropractor who she saw for > several years and we tried many " safe and natural pain remedies " . But her > condition has really deteriorated in that area. She is so stooped over and > her head faces the ground now. We had lots of occupational and rehab > therapy, which has helped. We went up the ladder on pain medications. > Everything is a trial and error, but the Fentanyl patch has given her the best relief. > > > > Mom hardly sleeps, (hasn't for many years - but is sleeping more in the > daytime now). She shuffles more than walks and some days we only use the > wheel chair. She is incontinent and has trouble with her bowels. She is > on blood pressure medication, Lasix for water retention, and potassium to > keep her levels normal. She has been on several anti-depressants for her > behavior. We've had several trips to the ER - but these trips are > worthless because all they do is administer Haldol. Ativan doesn't help any > longer. The psychiatrist has now recommended zyprexa which I was against > until I read " Lewy Body Dementia " by the Whitworths last week. Jim > Whitworth said that it worked quite well for his wife. Mom also has > constant UTI's and the only anti-biotic that works now is Leviquan which > they only use as a last alternative. I just don't understand why she has > to take 6 rounds of other anti-biotics that don't work before they give her > Leviquan - something about the rules and insurance they say. The urologist > has her on a maintenance program of a low dose anti-biotic (MacroDentin and > Vit. C) which only works in 20% of cases. I would need a book to list everything but I think these are the basics. > > > > In the past she's been on Requp for restless leg syndrome and Vesicare for > incontinence. She's off these now. One specialist said that when you're > 81 and incontinent, no drug is going to change that. At least that's two less medications she takes. > > > > My Mom was such a vibrant, active person. She was a teacher, then college > professor, with many activities including ballroom dancing. She exercised, > ate healthy, etc. It doesn't seem fair that any elderly person should be > expected to deal with not only overwhelming physical problems, but mental as well. > > > > So, that's where I am in my journey with my Mom. The thought of another > series of specialist visits at this point seems daunting. In the beginning > of this journey I was so " on top " of everything and always trying to find > the best treatment. I guess I'm plain tired now. But I will start my > calls today trying to locate a knowledgeable neurologist. Thanks for listening. > > I really appreciate reading all your stories. > > Marcia > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2011 Report Share Posted August 9, 2011 Just registering as requested. My husband has just been diagnosed with LBD after 18 months and three consultants. He is 66 years old. Sent from my iPad Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2012 Report Share Posted January 4, 2012 Welcome Jo Ann, we will consider that your 1st posted messege. i am gary (wife kay, 59-possible LBD). hard battle since feb. 2010 but probably symptoms back a few more tears ( oops , i mean years). anyway- listening and/or sharing will help YOU. take care....gary Subject: new member To: LBDcaregivers Date: Wednesday, January 4, 2012, 1:53 PM  I am a new member to the LBDcaregivers group. I don't have any messages to post right now. I would rather listen in for awhile. pjaj Quote Link to comment Share on other sites More sharing options...
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