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 Is it really LBD or what 
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Joined: Sat Oct 27, 2012 11:12 am
Posts: 10
Post Is it really LBD or what
At last dr visit a couple of weeks ago, the dr told my husband he was going down, but to keep up as much activity as he could to postpone his decline, and then when the time comes there is always Hospice. I could not believe he said this to him, as I do not think he is close to being ready for Hospice. On the way home he stated that he did not think he had LBD nor Parkinsons and does not think his dr thinks that. I did ask the dr in private at this last visit and he said only time will tell, but I cannot imagine what made the dr say what he did and I really did not appreciate it. My husband has a 30 yr history with this dr, who is an IM doc, and we have only seen a neurologist at the hospital when he diagnosed in July. Frankly, I am not sure what he has. His mind seems very clear. The dr said he has had so many things in his lifetime, that it may be a result of all that. He does talk in his sleep a lot, but does not seem to be acting out anymore. He does have periods when he does not talk to me, and sits with the frown on his face. Sometimes he does not get dressed for several days in a row, but he says he is not depressed and really does not seem to be. If he is, he is hiding it very well. He never complains about anything that is wrong with him, and he certainly has enough things going on that he has a right to. I ask him if he was worried about what the dr said, and he said no. He said the thought about it, but if you dwell on it it will get you down, so he will not do that. He is 78 and been through a lot, so I wonder sometimes if maybe the 2 light strokes he had in Sept may be what is keeping him from regaining his strength for so long. He is a very good patient, and is very patient. Any ideas?


Sun Nov 18, 2012 10:17 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Is it really LBD or what
Wow, my husband saw a neurologist who said those things three years ago! My husband was confused but understood that this guy was writing him off. We changed to another, more tactful and knowledgeable, neurologist who continues to treat him. Fact is, there is no way to tell how long someone has. My husband has declined but is still not 'circling the drain'.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sun Nov 18, 2012 10:55 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: Is it really LBD or what
wow.. i would be in shock!!!

i think i would get a second opinion.. and or a third!!! my first thought would be to get rid of the doc if hes that crass and unfeeling...but it seems you have some time invested in him.. if it were me, i think id read everything i could on lb and go in and ask lots of questions.... one of the main ones being .. what did he see, that made him say, what he said...

even if its true.. i think the wording was terrible.. its like the hope was ripped right out from under your feet.. and some times , comments like that, can become change the whole direction of the patient cause he/she gives up...

lots of doc know nothing about lb... i hope you can find one that can answer all your concerns...

wishing you luck, !!

cindi

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sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Mon Nov 19, 2012 12:43 am
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Joined: Thu May 31, 2012 6:51 pm
Posts: 60
Post Re: Is it really LBD or what
My husband's neurologist in Florida told us in March that he should go into a nursing home right away. This was the same day that he diagnosed my husband with LBD. He said these words right after I handed him the VA Aid & Assistance application to fill out. That really threw my husband for a loop, and when we were back in the doctor's office lobby waiting for the rehab nurse to come and help us with his wheelchair, my husband took off his wedding ring and handed it to me, telling me he wouldn't need it where he was going, and we both began to cry. The next day he had an anxiety attack, which led to another emergency room visit. I don't get doctors. Sometimes they don't engage their compassionate bedside manner before they open their mouths, causing emotional damage as a result.

My husband's current neurologist is much the same. Sigh!

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Beth


Thu Nov 22, 2012 4:56 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Is it really LBD or what
I know just what you mean, Beth! It took five neurologists to find one with tact and compassion and now he is closing his practice at the end of the year! :cry: I think, rather than break in a new one, we'll just muddle through with the primary care doctor.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Thu Nov 22, 2012 7:18 pm
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Joined: Wed May 02, 2012 8:26 pm
Posts: 55
Post Re: Is it really LBD or what
I received a post from you, rdanm3, but don't know how to send the reply to you. When I tried to send it I couldn't tellif it was sent or not. Please let me.

Susieg


Fri Nov 23, 2012 5:45 pm
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Joined: Sat Oct 27, 2012 11:12 am
Posts: 10
Post Re: Is it really LBD or what
susieg wrote:
I received a post from you, rdanm3, but don't know how to send the reply to you. When I tried to send it I couldn't tellif it was sent or not. Please let me.

Susieg

Susie,
I am still trying to figure out how to navigate this website. If this goes as a post maybe you can just reply to it. I just am not sure. I had to take my husband to the ER at 3:00 a.m. and he was admitted today - throwing up and was dehydrated. Did chest xray to see about pneumonia but radiologist had not read it. I have had l hour sleep since last evening and am about to go to bed. I think he was resting well most of the afternoon after I left him. Sandra


Fri Nov 23, 2012 8:16 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Is it really LBD or what
Sandra, I'm sorry your husband isn't doing well. IV fluids should perk him up. Hope it's not pneumonia but at least if he's already admitted, they can put him on antibiotics right away. Hope you'll get plenty of rest while he's in there.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Fri Nov 23, 2012 8:58 pm
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Joined: Thu May 31, 2012 6:51 pm
Posts: 60
Post Re: Is it really LBD or what
Pat:

My husband's current neurologist isn't happy about the fact that I can no longer get my husband to his office, so he doesn't want to prescribe anything else for him to stabilize his behavior. So I guess I'm going to have to go with having the palliative care doctor come and see him and then communicate with his PCP about any medication changes.

Oh well, I'm not that fond of the neurologist anyway. So it's no big loss.

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Beth


Sat Nov 24, 2012 12:55 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Is it really LBD or what
I can only get my husband to the neurologist's because his office is just a couple of blocks from the nursing home and I can wheel him there in the wheelchair. We actually don't have any neurologists here in town but a few of them visit here one day a week. Since his neuro is closing his practice he will only see his PCP, who visits at the SNF, after this year.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat Nov 24, 2012 2:02 am
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Joined: Sat Oct 27, 2012 11:12 am
Posts: 10
Post Re: Is it really LBD or what
mockturtle wrote:
Sandra, I'm sorry your husband isn't doing well. IV fluids should perk him up. Hope it's not pneumonia but at least if he's already admitted, they can put him on antibiotics right away. Hope you'll get plenty of rest while he's in there.

Pat, please let me know if I am doing this right when I respond to something.

Thanks for your comments. The dr said today that he would be there a couple of more days. I was not there when he came in yesterday or today. My husband was doing really well today. I helped him get a bath. He had not slept all night because of the breathing treatments and high doses of steriods. They reduced all that today. I had asked them not to give him the breathing treatment at 10 last night but they gave it to him at 11, so he did not sleep and did not sleep all day today. Maybe he will sleep tonight.


Sun Nov 25, 2012 10:26 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Is it really LBD or what
rdanm3 wrote:
mockturtle wrote:
Sandra, I'm sorry your husband isn't doing well. IV fluids should perk him up. Hope it's not pneumonia but at least if he's already admitted, they can put him on antibiotics right away. Hope you'll get plenty of rest while he's in there.

Pat, please let me know if I am doing this right when I respond to something.

Thanks for your comments. The dr said today that he would be there a couple of more days. I was not there when he came in yesterday or today. My husband was doing really well today. I helped him get a bath. He had not slept all night because of the breathing treatments and high doses of steriods. They reduced all that today. I had asked them not to give him the breathing treatment at 10 last night but they gave it to him at 11, so he did not sleep and did not sleep all day today. Maybe he will sleep tonight.

Did it turn out to be pneumonia?

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sun Nov 25, 2012 10:43 pm
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Joined: Sat Oct 27, 2012 11:12 am
Posts: 10
Post Re: Is it really LBD or what
mockturtle wrote:
rdanm3 wrote:
mockturtle wrote:
Sandra, I'm sorry your husband isn't doing well. IV fluids should perk him up. Hope it's not pneumonia but at least if he's already admitted, they can put him on antibiotics right away. Hope you'll get plenty of rest while he's in there.

Pat, please let me know if I am doing this right when I respond to something.

Pat, I am still having trouble trying to figure out how to respond, etc. So not sure this is working right.

Charles came home today. No, he did not have pneumonia, but the dr said he did right thing by heading it off and going to the hospital when he did. He was very dehydrated from throwing up so much and very weak. They pumped him full of steriods and he said he feels better than he has in weeks. The dr is going to keep him on 10 mg of prednisone daily. He has been taking 5 mg for years for his RA and had not had any problems with his bones thus far. He already does not have an immune system, so guess the higher dose won't matter there. They will just have to give him even higher doses when he gets sick. He has been in the hospital for almost every holiday for the last year and a half. Either on the day or the day after. I really feel bad for him, but he has such a good spirit. He never complains about anything. Not sure I could be that way myself. I just pray God will give me the grace to see him through this without getting short with him sometimes as I do when he does not respond to me. I have to keep reminding myself he cannot help it. He just will not answer sometimes when he is so sick and I am trying to determine what I need to do, so it leaves me to guess.


Mon Nov 26, 2012 10:24 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Is it really LBD or what
Quote:
Pat, I am still having trouble trying to figure out how to respond, etc. So not sure this is working right.


I'm not sure I understand what you mean. Your posts are just fine. Are you referring to Private Messages?

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Tue Nov 27, 2012 12:16 am
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