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 "Jumpstarting" LBD? 
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: "Jumpstarting" LBD?
Ada, you are welcome here. This is a woderful place to vent - don't ever be afraid to talk about your feelings. Everyone needs to let off steam, and no better place than here, where everyone has gone through, if not the same experience as you, then very similar ones. People here understand the constant pressure and are a great source of comfort and advice.

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

Thu Mar 31, 2011 4:16 am

Joined: Wed Sep 30, 2009 8:25 am
Posts: 227
Post Re: "Jumpstarting" LBD?
I take care of my mother-in-law and have done it for years. Her daughters are in complete denial and refuse to discuss their mother's disease or her care. Just had a brief visit from one (first time she had contact with her mother since Christmas) and she changed the subject every time I tried to bring up the subject. I feel alone and this is not even my own mother. I can empathize with you going it alone. As for the original topic - my MIL lost her sense of smell years before any cognitive symptoms. She also had the tell-tale runny nose for many early years. The loss of her husband triggered the steep and noticeable decline.

Donna (age 56) caregiver for mother-in-law Margaret (age 88).

Thu Mar 31, 2011 7:29 am

Joined: Tue Mar 29, 2011 3:13 pm
Posts: 6
Post Re: "Jumpstarting" LBD?
You have all been so wonderful & helpful. Donna, you are a truly special person to be taking care of your MIL. How sad her own daughters are not there to help out. I helped my SIL take care of my MIL years ago. I loved them both and my SIL and I formed the closest friendship after our years together of taking care of her sweet mother.

Lynn, I's time for a family discussion. Our sons are in early & mid-30s. Our DILs are very busy with their own children & families. I'm sure they will all help out occasionally when possible. I've probably been as much in denial as the rest of them if not more so. My concerns, which led me to this great site, for my LO became deeper these past couple of months. I've just recently found my way out of denial land. I will give them some time and hopefully be able to help them understand. I had asked them to look up LBD, read about it & let me know their thoughts. Don't think they've done that yet. But I will give them time.
Bless you all !

Thu Mar 31, 2011 9:13 am

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: "Jumpstarting" LBD?
I would like to make a suggestion, Family meeting is great and this is what we did and it worked well. I was given help I could count on . Every weekend one of my daughters came and they worked out the schedule themselves, if one had an issue for a certain Sat they never let me know, they just worked it out sometimes it meant one daughter would come 2 weekends in a row but that's the way it was and by them doing this I didn't have expectations, I knew what was happening and another point if you go to the "Welcome to our forums" and open it you will see:
Frequently Referenced Resources on LBD, you may want to printthem off and give to each child before a family meeting and at this meeting you have to be very open and honest in your needs because they won't know unless you tell them.

AS to outside of family help like friends and neighbor's if they offer or say call me if you need something at that moment you should say"Well I do need someone to say sit with Hubby while I run to the store" because if you just respond with Oh Ok you will never call them, its very hard for caregivers to except help, I think we often thing it shows a weakness and it doesn't at all, this illness will burn you out without help.

Good Luck!

Irene Selak

Thu Mar 31, 2011 11:23 am
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Joined: Thu Mar 12, 2009 1:23 am
Posts: 26
Post Re: "Jumpstarting" LBD?
I have often entertained this thought of "jumpstarting" in my LO case. My husband was young (45) at the time - almost 3 years ago - and was being treated for psychiatric issues that did not respond to any other treatment. He was given a long-acting injectable form of haldol called Haldol Decanoate. He had such a violent reaction he was in the ICU twice (though the doctor denied his reaction was from the med....) - it was the classic signs of NMS except he didn't run a fever. Once recovered from that horrific experience I began to notice significant cognitive decline and within 6 months (and several more attempts to manage the pysch issues) he was placed in a nursing home where he remains. The psych issues are more stable now, but the cognitive decline is immense. The most recent doctor has said she feels he has components of LB but also FTD. He has most of the symptoms of LB with the exception of Parkinson-like symptoms. According to the Boeve continuum, there are forms of dementia that is a variant of LB with the exception of Parkinsons.... it is a very sad mystery. I've often wondered if perhaps in time, my husb.would have developed LB (years down the road) but that perhaps it was jumpstarted much earlier due to the Haldol Decanoate. is that crazy to think?
-Jane Grace

Fri Apr 08, 2011 11:22 pm

Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: "Jumpstarting" LBD?
It doesn't sound crazy to me. :|

Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012

Fri Apr 08, 2011 11:35 pm

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: "Jumpstarting" LBD?
Ada, we are all heartbroken over this disease and its consequences. Don't ever worry about 'whining'. If you're like most of us we do our whining here on the forum because we can't do it in our everyday life and no one else understands, anyway. Try to find something every day to laugh or smile about as it will do your heart good. I have a box of funny cartoons and jokes I cut out of magazines [mostly The New Yorker] over the years that made me laugh. Sometimes I take it out and look at some of those. Crying is OK, too. God bless!

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 Apr 08, 2011 11:53 pm

Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: "Jumpstarting" LBD?
I am exploring this 'jumpstarting' idea also…

I think I may have been 'kickstarted' a couple of times and then 'jumped' or 'pushed' off the cliff…

in 96' while backpacking with scouts, I dehydrated on multiple trips…sweating out…no temperature control…the last episode with 'pancretitis' I was given phenegran…then a couple of weeks later my gallbladder removed and I was given phenegran multiple times over the next 3 months as I had unexplained fever and extra long and hard recovery from that laproscopic surgery…instead of the advertised 5 day recovery…

the stress of 9-11 kicked my butt cognitively for months….

04' the stress of my second divorce…started the numbness in the left side of my face that still is there…

07' I was given amitryptilene by a gastro doc...for the side effect of sometimes relieving unexplanined chest pains….I believe this is what kicked or pushed me over the cliff to where I probably could have been diagnosed had I seen someone who knew what they were looking at…

From this point…knowing I was running against an unknown clock…thinking it was MS…unable to get a diagnosis of something I could fight….I worked my job and my side business….missing everything else…every birthday….no fishing….no fun…trying to make a transition to something unknown that I knew was coming….I think the stress finally said to me enough…we are going to take you down….I literally worked my way down…till I had to be driven home one day…my last day…end of Sept 2010…

May of 2010…steady progression of everything started around this time….no let up since then…everyday...

Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years

Sat Apr 09, 2011 12:13 am

Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: "Jumpstarting" LBD?
BC... Your 'list' reminds me of so much that we've experienced in the past ten years. Thanks for writing.

I have been sorting through Dale's notes, his experiments with various medicines, his huge vitamin collection, and his books about everything from 'restless leg' to miracle cures .... and they all point to the torture that his symptoms must have been to him.

He kept looking for an answer. He was sure there must be some magic potent or some shaman who knew what he needed. It is so sad.

Was his car accident a cause or the result of his illness? Did several surgeries make it worse? We'll never know.

Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011

Sat Apr 09, 2011 1:22 pm
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