Guest guest Posted January 10, 2005 Report Share Posted January 10, 2005 hi merri my name is sharon m from pensacola, florida. my hubby and i caregive for my 70 year old father (we have been here since jan 2003)who was officially diagnosed in may 2004 but has had (looking back now ) for almost 10years, dad started with unexplianed falls and hallucinations. he was in hospital in may when he had the parkinsonian shakes so bad that he couldnt even hold a drink or even a fork. he was in hospital for 3 weeks, including 10 days of skilled nurisng and occupational therapy to help him learn the proper way to use his walker. which he didnt have before going into the hospitla, you didnt say if your hubby was in the hospital or has had surgery recently, lbd patients adversely react to many medications. and even common infections, such as urinary tract infections can make our loved ones turn into 'monsters' or 'bears' my dad is on exelon the max dosage of 6 mg 2 times a day and is now on namenda but isnt topped out yet, next week he will be topped out at 10mg 2 times a day. dad has declined the past 2 months quite rapidly, before that he had plateaud for about 5 months and then 2 months beofere that he crashed fast. but EVERY LBD PATIENT is different. what is not good for my dad, may be perfectly fine for your husband, and vice versa as well. lbd has a mind of its own. and does what ever it wants, no time frame to 'go by' my dad is now using a walker and has a hospital bed, he can walk only with supervision and is unable to get up out of bed wthout assistance. we now have to cut his food into bite size pieces as he eats like a 3 year old, how much food can i stuff in my mouth at one time. well you will go thru fast changes and then you will have plateaus everyone is dfferent and things change from minute to minute day to day. just remember that you have found a great site of people to talk to that undrestand what you are going thru. and taht each of us at one time or another can or wll relate to what you are talking about, you can yell, scream, cry, laugh, tell stories, share tears , whatever, for we all are here and are in your corner. hugs sharon m > > > Date: 2005/01/10 Mon PM 09:20:48 EST > To: LBDcaregivers > Subject: HELP > > > > My husband was recenly diagnosed w/lbd a few weeks ago; but things > are now progressing so rapidly Ican't keep up. Todat he insisted he > had no children (has two grown and one lives w/us) and has trouble > geting dressed, etc. This progression seems awfully fast; anyone > out there w/similar issues? I work fulltime and am scared to leave > him alone, even though keys to car are gone and we check on him very > often.I only work 2 miles away. He is on Namenda, but I don't see > any changes. > > > > > > > Welcome to LBDcaregivers. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2005 Report Share Posted January 11, 2005 Hello, and welcome. My father was diagnosed a couple of years ago, at age 64. Before anyone realized what was going on with him, he was really out to lunch, would have 'spells' where he'd want to leave his wife, didn't have any kids, etc. Once the doctors did figure it out, it took awhile for him to stablize, for us to figure out what drugs worked for us and what did not. Even now, if he goes on something new or we change the dosage of something, it makes him worse for a while until his body adjusts to the change. Hang in there Merri, you can get through. This disease requires a great deal of patience. The fast progression may be just his adjustment to the drugs. KD > > My husband was recenly diagnosed w/lbd a few weeks ago; but things > are now progressing so rapidly Ican't keep up. Todat he insisted he > had no children (has two grown and one lives w/us) and has trouble > geting dressed, etc. This progression seems awfully fast; anyone > out there w/similar issues? I work fulltime and am scared to leave > him alone, even though keys to car are gone and we check on him very > often.I only work 2 miles away. He is on Namenda, but I don't see > any changes. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2005 Report Share Posted January 11, 2005 My Mother went from functional to non-functional almost overnight. She had been having some memory problems and she had quit driving, but she was doing OK. With in two months, we had to put her into a nursing home. She became very agitated, she was having halucinations, she wasn't sleeping at night and my Father and I just couldn't handle her. She has since started on Seroquel and Exelon and both have helped a lot. I wouldn't leave him alone, many of our LO's feel the need to " get out of here. " I think they are trying to run away from their problems, but he might wander off. Check out the following link for the safe return program: http://www.alz.org/Services/SafeReturn.asp Look into a day center for people with dementia, some are not very expensive and include lunch. Also, you can hire someone to sit with him when he would be alone. Good luck, in Dallas > > My husband was recenly diagnosed w/lbd a few weeks ago; but things > are now progressing so rapidly Ican't keep up. Todat he insisted he > had no children (has two grown and one lives w/us) and has trouble > geting dressed, etc. This progression seems awfully fast; anyone > out there w/similar issues? I work fulltime and am scared to leave > him alone, even though keys to car are gone and we check on him very > often.I only work 2 miles away. He is on Namenda, but I don't see > any changes. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2005 Report Share Posted January 11, 2005 i really feel for as the moments of being lucid become rarer. the discion to put my mum into a NH was an awful one, i still feel guilt ever day, but try to think it was best for her. not saying u should do the same, but take up any offers of help u can. my father would scatch his head with some of the things mum was saying and doing. he too was accused of not giving her tablets on time and wanted to hit her. mum went from managable to un managable in a space of a wk. it is certainly a shock. my heart goes out to u. Helen > > My husband was recenly diagnosed w/lbd a few weeks ago; but things > are now progressing so rapidly Ican't keep up. Todat he insisted he > had no children (has two grown and one lives w/us) and has trouble > geting dressed, etc. This progression seems awfully fast; anyone > out there w/similar issues? I work fulltime and am scared to leave > him alone, even though keys to car are gone and we check on him very > often.I only work 2 miles away. He is on Namenda, but I don't see > any changes. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2008 Report Share Posted August 27, 2008 My apologies, Marta. His email is bsg45225@.... Thank you very much. Katz > > > > Okay, > > So how do we sign him up??? Katz > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2009 Report Share Posted February 17, 2009 Kym With just the description of removing 6' of bowel it's impossible to know if it is 6' of Bilopancreatic or alimentary channel. We have approx. 20 plus feet of small intestines. If she is too short on any of the small intestine lengths that can be adjusted to give her more absorption. So take heart, she can survive and hopefully she won't require anymore surgeries. I'm not really sure if there is a minimum length for the bilo channel. I've never thought to ask. It has to be hard to be so far away when mom is in a crisis...but the doctors are getting her out of crisis...just take one step at a time. I will hold her and you in my heart...keep us informed. Hugs Jo I'm assuming it isn't her Large bowel as we only have approx. 5-6 feet on average. ==================== > Tonight... my mom went in for an emergency surgery for blockage. I am > in Seattle...she is in FL. I don't have the whole story... but > apparently they removed SIX FEET of neucrotic bowel. I assume...this > is from the side that brings down the bile? The doctor couldn't tell > us for sure? (This is my worst nightmare) > > Anyway... does their have to be a certain number of inches for the > BILE side? As long as the food side and the common channel is intact > are we ok? > > I'm terrified. > > Ginger.. if you are out there reading this... this is I am > talking about. You can email me at: kymberly@... I'm > looking for tickets to florida right now. > > --Kym in Seattle > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2009 Report Share Posted February 17, 2009 Oh Kym I wanted to add..if you get to go to be with your mom...take a diagram of the DS to help you explain it to the Doctors and hopefully nail down what segment they removed. Hugs Jo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2009 Report Share Posted February 18, 2009 However this idiot didn't take the time to really > understand which part he was cutting... but rather just saw necrotic > bowel and apparently just " cut " . I guess to him it didn't make > much difference. > This is where it becomes really frustrating. You would think that the doctors would come with some BASE knowledge that would help them to understand the significance. My logic tells me that if it was the bilo channel that was removed then she is probably ok. Was Dr. K her Doctor? Call or email him. Put him on notice that when you get there you are going to want him to discuss this with her doctors there. Ask Dr. K what number he whats those Doctors to call him at where they aren't place on hold for too long. If they aren't sure which channel they removed then I " think " they can run test with contrast and track the food and " know " without surgery. Dr. K can advise them on what to look for. I understand your being scared...but take a deep breath...the Idiots have at least saved her life..yea! From here you just have to Take the next step. She is alive. The rest can be figured out. Hugs Jo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2009 Report Share Posted February 18, 2009 I emailed Dr. K. and asked him about the minimum bowel length for the bilo and the alimentary channel to sustain life/health...and if we could live with a very short bilo channel. I Gave a brief explanation that the question was coming due to a patient having 6 feet of necrotic bowel removed without the surgeon being aware of which channel he shortened. I suggested this could be addressed in a newletter. That way it would be available to all patients and it would afford the opportunity to answer the question in more detail. I know this doesn't help you NOW. You need to discuss your mom's specific case with him to get specific answers. But it brings up an opportunity for Dr. K to Teach us on a subject me may have need of someday! Hug Jo Quote Link to comment Share on other sites More sharing options...
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