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 Newby from Alaska 
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Joined: Sun Feb 24, 2013 12:00 pm
Posts: 7
Location: Anchorage, Alaska
Post Newby from Alaska
Hello, everybody. I'm a retired 65 year old special ed teacher married for 41 years (this week) to Bruce, a 68 year old retired engineer who's had LDB symptoms since 2007. This week he's in the hospital with a few major problems. His LDB balance problems got suddenly worse (as they've done before, but they went away), and he fell down a dozen or more times in 4 days, even when using a walker. So I called the doctor to get a wheelchair and an evaluation for home care help. He decided to have Bruce admitted to the hospital for a week or so. Bruce has had a lung infection for a year or more, and they've found that it's caused by Nocardia, a kind of bacteria that in adults only develops in people with compromised immune systems, and I guess LDB has done that to him. Later this week a team of experts will come up with a plan for home care after his hospital stay. I was really surprised at the sudden downturn in Bruce's health, having thought that LDB would be more gradual. His confusion is the worst symptom. I'll be spending lots of time here getting familiar with you all. I enjoy meeting new people!


Mon Feb 25, 2013 1:49 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3305
Location: Vermont
Post Re: Newby from Alaska
LBD patients seem to have steep declines, and sometimes they regain SOME of their former abilities, but rarely ever go back to where they were. If you read postings here and books about LBD, you'll see that that is a pattern. Welcome, and I'm sorry for your need to be here. Hopefully the info. and sense of community on this forum will help you through this difficult journey. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Feb 25, 2013 8:41 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Newby from Alaska
Welcome to the forum! We are glad you have found us but sorry for the reason you have to be here.

Infection is often at the root of steep declines and sometimes the person can return to baseline after the infection is resolved. Our experience has been that declines are quite sudden, followed by plateaus of relative stability.

_________________
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.


Mon Feb 25, 2013 11:01 am
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Joined: Sun Feb 24, 2013 12:00 pm
Posts: 7
Location: Anchorage, Alaska
Post Re: Newby from Alaska
Thank you for the welcome and the info, Lynn and Mockturtle. I will be reading up on LDB. Today at the hospital I will be learning whether a new infection under Bruce's chest skin is the same as his lung infection. If so, then he may need surgery to remove his lung lobe and any dead ribs. He wasn't making any sense yesterday, saying things like, "We have to see about getting rid of the bubbles." It's a shock seeing our LO's decline, isn't it.


Mon Feb 25, 2013 11:32 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3305
Location: Vermont
Post Re: Newby from Alaska
Yes, it's shocking, scary, sad and frustrating. You just do the best you can do to advocate for your LO, so any reading you can do about this awful disease, the more informed you will be. Since many health care professionals know little or nothing about this disease, educating them about it will help your LO. Hang in there, it's a tough road. Please take care of yourself too. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Feb 25, 2013 11:06 pm
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Joined: Sun Feb 24, 2013 12:00 pm
Posts: 7
Location: Anchorage, Alaska
Post Re: Newby from Alaska
Thanks for the advice, Lynn. I'll definitely have to do more reading. It was a surprise to have the hospital discharge nurse tell me today that my choice for him is between an ALF or a 24/7 in-home aide. Yikes. Then the doctor came to Bruce's room and mentioned possible placement in an extended care facility for a few weeks. That sure sounds better for a 68-year-old man. I know more will be needed real soon, but extended care would help us ease into the idea.


Tue Feb 26, 2013 2:39 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3305
Location: Vermont
Post Re: Newby from Alaska
By "extended care" - is that like a skilled nursing rehab facility? And if so, Medicare will cover up to 90 days in one of those, but they try to get the person out after 2 or 3 weeks in my experience. If that is the case, that might be the best thing at the moment. Try to find one with really good PT & OT so they can do intensive work to get some of his ADLs, walking, etc. better before he comes home or goes to an ALF. Best, Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Tue Feb 26, 2013 1:25 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Newby from Alaska
Ruth,

Welcome to the LBDA forums, seems you have been doing this a while and that's a shame, I hope this place is a place you can gets some comfort and helpful information!

_________________
Irene Selak


Tue Feb 26, 2013 7:33 pm
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Joined: Sun Feb 24, 2013 12:00 pm
Posts: 7
Location: Anchorage, Alaska
Post Re: Newby from Alaska
Lynn, I know of only one extended care facility in Anchorage. It's pretty new, but has a good reputation so far, according to the doctor. Bruce would be getting IV antibiotics, plus PT and OT there. The referral has been made and we're waiting to be accepted. Bruce had another steep downturn today. They said he didn't sleep last night, and today he hasn't put together even one sentence that makes sense. His first to me today when I went to the hospital to see him was, "We have no food, except for the rose' in the backyard." He asked about Dad, and his dad died 20 years ago. He keeps trying to get out of bed--dangerous for him. My daughter who now lives with us totaled her car this morning, sliding on an ice road into another car. It's our anniversary, so I went and bought flowers. What an up and down day.


Tue Feb 26, 2013 7:55 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Newby from Alaska
Ruth,
Seems like you are having a day most wouldn't want and I am sorry for that but I did want to say Happy Anniversary and I hope your daughter wasn't hurt in the accident, Ice is a scary thing !

_________________
Irene Selak


Tue Feb 26, 2013 8:23 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3305
Location: Vermont
Post Re: Newby from Alaska
Oh Ruth, what a day you have all had. I'm so sorry. Hope your daughter is OK, and happy anniversary, even though it wasn't a very happy day for you all. Hopefully today things will be more stable. Now is a good time to reach out to friends and relatives for support. It's surprising how many people are going through something similar and even if they aren't, just getting some moral support from a caring person helps in these rough times. The nonsensical sentences and inability to comprehend time (like LOs who have died, their home is not where they lived 50 yr. ago, etc.) are part of the symptoms that come and go. Hopefully he will have lots of lucid periods in between. Big hug to you today, Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Wed Feb 27, 2013 10:15 am
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Joined: Sun Feb 24, 2013 12:00 pm
Posts: 7
Location: Anchorage, Alaska
Post Re: Newby from Alaska
Got the word today that Bruce will be transferred via ambulance to the extended care facility tomorrow at midday. They say it's homey, and the room will have a beautiful view of either the mountains or the woods. Estimates on the length of stay range from 2 to 6 weeks or more.

Question--I got a message from an lbda member that says it's through my account, but how do I access it? I haven't found the word "account." I'd like to answer the message.


Fri Mar 01, 2013 1:30 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Newby from Alaska
Do you see at the top where is says you have a private message? If so click on that !

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Irene Selak


Fri Mar 01, 2013 1:09 pm
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