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 New Member in Texas 
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Joined: Wed May 02, 2012 8:26 pm
Posts: 55
Post New Member in Texas
My husband has recently been diagnosed with LBD. He is 78 years old and his health has deteriorated tremendously over the past few years, & especially this past year. He is having a great deal of difficulty sleeping at night but wants to sleep most of the day. One of his many issues is a restlessness making it hard to sleep or even be comfortable during the day. I am doing my best to keep him awake during the day. It breaks my heart to see him so frail. He is having hallucinations and is on medication for that and memory loss. I sent my doctor an email recommending he refer caregivers of LBD patients to this website. Thank you for being there.


Sun May 06, 2012 3:17 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: New Member in Texas
Susie,
Sorry you've had to join the Forum, but welcome. Have you and your neurologist considered something sedating at night to help your husband sleep, and/or something stimulating during the day to keep your husband awake?
Robin


Sun May 06, 2012 4:00 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: New Member in Texas
So sorry you have to join us but glad you did. I know exactly what you are going through. 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.


Sun May 06, 2012 4:04 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3396
Location: Vermont
Post Re: New Member in Texas
Welcome Susie. You are among knowlegeable and caring friends here who are either in the midst of being CGs or some of us who have been CGs in the past. Stop by any time. 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.


Sun May 06, 2012 7:22 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: New Member in Texas
Welcome here susieg! To echo what Robin said, my husband needs 2 meds to sleep through the night, and one for alertness during the day. It makes a big difference in quality of life.

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


Sun May 06, 2012 9:49 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: New Member in Texas
Susie,
Welcome to the LBDA forums, I hope you find this a place for information and will be a comfort to you as you have questions along the way !

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Irene Selak


Sun May 06, 2012 10:15 pm
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Joined: Wed May 02, 2012 8:26 pm
Posts: 55
Post Re: New Member in Texas
Wow!! So many welcomes. It truly warmed my heart. Since my last post my husband went on Seroquel (generic) and Aricept (generic). He is sleeping better, not great, but certainly better. He has not had any hallucinations in the past 3 days but he did not have them frequently even before the Seroquel. We can increase the Seroquel weekly if hallucinations continue but I don't know if I should just for sleeping issues. I have contacted the neurologist about his restlessness when he is not sleeping. It seems like restless leg syndrome but throughout his body not just his legs. Thanks for any feedback you may have.


Wed May 09, 2012 8:21 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: New Member in Texas
My husband experienced the same kind of restlessness. If I sat him in a chair, he would want up in about five minutes. If he went to bed, he'd wake up in about two hours, thinking it was morning, would want breakfast, etc. Wish we had discovered Seroquel earlier.

_________________
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.


Wed May 09, 2012 9:06 pm
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Joined: Wed May 02, 2012 8:26 pm
Posts: 55
Post Re: New Member in Texas
Heard from the doctor and he wants us to wait until our visit in less than a month before adding any more medication which does make sense since sleep and restlessness has improved.


Thu May 10, 2012 1:01 pm
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: New Member in Texas
Welcome, Susie. You should find much help and support here and I am glad you told your husband's doctor to send others here for help, too.
My husband's neurologist, an LBD specialist, had to teach me to slow down in my expectations and not change too many things too fast. It took a while for me to settle down and accept his approach, but once I did, John and I both got better. His rule of thumb was to do one thing at a time and move slowly and methodically with LBD. John has done well with that approach and I have learned to be a calmer, more effective caregiver.
Pat

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Fri May 11, 2012 12:40 am
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Joined: Wed Apr 11, 2012 9:32 pm
Posts: 61
Post Re: New Member in Texas
Welcome Susie. As many have said, you've found the club that we really didn't want to join, and are now taking the trip through lewy land that has lots of peaks and valleys, starts and stops, and is entirely different for each patient. My husband is also 78, and has had what his neurologist called "a-typical" Parkinsons for 10 years (no tremors but very slow movements, soft voice, visual-spatial problems etc.) He began having hallucinations 2 years ago and the other lewy symptoms came soon after. He also takes seroquel in the evenings to help him get restful sleep, but he still haves hallucinations. We all learn so much from each other, ideas and advice. Welcome. Carol

_________________
Carol (67) caring for husband Norris (78) diagnosed PD in 1998, dx cognitive changes 2009, dx PDD/LewyBody variant 2011, still at home.


Fri May 11, 2012 12:46 pm
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Joined: Tue Aug 30, 2011 1:36 pm
Posts: 48
Post Re: New Member in Texas
Hi Susie. Welcome. Sounds like your doctor favors a go low and slow approach to meds, which I think is great, especially after reading here of others' good experiences with that approach. Sorry you have to be here, but hope you learn as much as I have.

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Donna G, 52, helped Dad take care of Mom, who died at home surrounded by family in June 2012.


Fri May 11, 2012 5:55 pm
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