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 "Jumpstarting" LBD? 
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Joined: Mon Mar 14, 2011 12:45 am
Posts: 17
Location: Birmingham, AL
Post "Jumpstarting" LBD?
Not sure where I should put this, but after reading some more things here I started to wonder about something. We are still waiting on a diagnosis for my mom, but I noticed the majority of her symptoms started somewhat suddenly after she had a terrible MRSA infection and was on IV antibiotics for 6 weeks. Could the stress of this illness have "jump started" the LBD? I'm not sure I'm asking this correctly...hopefully you all know what I mean!

Amanda


Mon Mar 28, 2011 1:54 pm
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Joined: Fri May 28, 2010 4:46 pm
Posts: 119
Location: Salem, Oregon
Post Re: "Jumpstarting" LBD?
I'm kind of curious about this, too. My mom had fairly minor surgery, but afterwards she had some complications with her digestive system shutting down for a couple of days due to the anesthesia. Afterwards, we really started seeing the symptoms we now know indicated LB. I've wondered if the surgery, the anesthesia, or the resulting complications could have triggered it.


Mon Mar 28, 2011 2:45 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: "Jumpstarting" LBD?
Both in the local support group and on the LBD-related Yahoo!Group we hear a lot about LBD symptoms coming to the foreground after a serious infection, hospitalization, surgery, anesthesia, or traumatic event (divorce, death of family member, etc). I believe the medical thinking is that the pathology was already in the background but something about these events brought the symptoms to the foreground such that the symptoms were visible to many people.


Mon Mar 28, 2011 4:00 pm
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Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post Re: "Jumpstarting" LBD?
For my LO, I've always thought that the operation when her pacemaker was installed five years ago hastened or suddenly worsened her LBD condition. Other than the anesthesia two other events happened during the operation; her heart stopped on the operating table from A-fib and she had fibrillation, and the surgeon punctured her lung.

To this day she regrets having the pacemaker installed and would remove it from her body if she could.

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Annie, daughter of brave Marie, dx 2007 and in ALF


Mon Mar 28, 2011 6:20 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: "Jumpstarting" LBD?
Robin, I find the traumatic event is interesting. Frank started having problems after my nephew back over my father in the driveway and he died 2 days later. I never had the chance to grieve because Frank was having so much trouble after dad's death that I had to focus on him. Everything about this diesease is a mystery.
Gerry

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Mon Mar 28, 2011 7:26 pm
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Joined: Mon Mar 14, 2011 12:45 am
Posts: 17
Location: Birmingham, AL
Post Re: "Jumpstarting" LBD?
Thank you for the replies. Whatever this turns out to be (I truly believe it is LBD), I think the stress during that time definitely exacerbated it. I agree it is all a mystery!


Mon Mar 28, 2011 8:03 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: "Jumpstarting" LBD?
Amanda -
As you may know, the *only* way to confirm a DLB diagnosis is to have the brain autopsied post-mortem. Diagnostic accuracy for DLB is less than 33%. (And that was with dementia centers doing the clinical diagnosis!) I encourage you to discuss brain donation with your family, or ask the neurologist to raise the topic. I believe UAB has a brain donation program. Arrangements must be made in advance.
Robin


Mon Mar 28, 2011 10:02 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: "Jumpstarting" LBD?
Gerry -
Have you told that story before and I missed it?! Wow - how traumatic for Frank! It was as if you lost several family members that day.
Robin


Mon Mar 28, 2011 10:04 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: "Jumpstarting" LBD?
Oh my God, Gerry, I am so sorry. One always thinks they have had a hard life, until they hear someone elses story. You are amazing to be still 'up and runnning'. You must be so strong. God Bless you and yours xxx

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cared for Dad who passed away on January 28th 2013 R.I.P.


Tue Mar 29, 2011 4:31 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3316
Location: Vermont
Post Re: "Jumpstarting" LBD?
Gerry - I am so sorry to hear this story. You definitely have had your hands full, and you must be incredibly strong. Make sure you take care of yourself along the way so you can remain strong and healthy for both you and Frank. Lynn

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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 Mar 29, 2011 10:49 am
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: "Jumpstarting" LBD?
Amanda,

Each time my mom has had a serious illness, she's gone downhill. Kind of a jump-fall. But the first was a doozy and I attribute it to her being administered Haldol, before any of us knew (including the doctor involved) what we were dealing with and what to be cautious about. Be sure to review the medications listed on this site and be careful about them. Don't trust that a doctor knows about the issues involved - especially one assigned by a hospital for care during a stay for something else.

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Wed Mar 30, 2011 12:37 pm
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Joined: Tue Mar 29, 2011 3:13 pm
Posts: 6
Post Re: "Jumpstarting" LBD?
My DH seemed to change after each surgery (6 in less than 7 yrs) but his last open heart surgery 22 mos ago was the most difficult decline. Prior to surgery we informed the anesthesiologist & drs that he had some serious side effects from previous anesthesia & narcotics (they did not seem to believe us...& this was one of the best hospitals in the US). He is very sensitive to narcotics --sometimes I think a baby aspirin would knock him out. After surgery he was given high doses of pain meds (can't recall the name of the drug but the nurse said it was stronger than morphine). He cannot take morphine at all so I knew he was going to go into a wild reaction, which he did within 30 min. and the CCU had to call me to calm him. Then they gave him Haldol...and his reaction to that was a living nightmare. And sadly his mind never fully recovered. There have been times that I've thought he was actually getting better but sadly it turns again in the opposite direction. Each time a surgical procedure was required ...the gall bladder, heart attack during recovery from gall bladder, stint surgery, double bypass, knee replacement, broken ankle...and then the 2nd open heart...but each of those wreaked havoc on his mind & body. The last one when Haldol was administered was the most difficult. He has fought so hard to recover each time. Sorry...didn't mean to ramble on & on...I'm the newbie here and haven't felt comfortable talking to many people about this until now.


Wed Mar 30, 2011 8:32 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3316
Location: Vermont
Post Re: "Jumpstarting" LBD?
I hope you don't feel uncomfortable here on the forum. I think we were all a bit timid at first, but please just jump in and be part of this very accepting, empathic community of people who all came together around this disease. We are all equals here, just trying to help one another or asking for help from others. Lynn

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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 Mar 30, 2011 8:56 pm
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Joined: Tue Mar 29, 2011 3:13 pm
Posts: 6
Post Re: "Jumpstarting" LBD?
Thanks Lynn, guess I am feeling timid. Everyone here is so wonderful and my heart goes out to all. I did not want to start out my first forum talk sounding like a whiney baby. For several years I've been trying to talk to our sons & family but it's so hard for any of them to even consider this awful disease could be happening to our strong, stout, beautiful loved one. I'm the one that stays strong & keeps the smile going no matter what... but I've not been able to get this awful lump out of my throat. Part of me wants to cry, vent and just rant because this is happening to the one & only love of my life -- and the other part just wants to have an occasional laugh and remember how grateful I am for all the wonderful years we've had together.


Wed Mar 30, 2011 10:42 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3316
Location: Vermont
Post Re: "Jumpstarting" LBD?
Ada - how old are your sons? Have your family members observed your LO during his worst bouts of symptoms? You are going to need a lot of support as your LOs abilities decline. It might be a good idea to have a family meeting, suggest that they read some of the posts on the forum, and/or do some reading about this disease so they know what you and your husband are dealing with and what to expect for the future. You will not be able to do this alone after a while. You need to take care of yourself.
Many people are great at denial and don't want to believe things are as bad as they are. This may be what's going on for your family members. Education and observation (by them) should help them "get" what you are going through. I wish you all the best. Some will come around, and inevitably, there will probably be at least one person who will never get it, pretend there is nothing much wrong with your LO, and will not take responsibility for things that will need to be done. But, at least a few will get it and help you, and you'll need that. Keep us posted on how things are going and never, never, feel like you are a whiner! 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 Mar 30, 2011 10:54 pm
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