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 Blue eyes crying 
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Joined: Tue Mar 29, 2011 3:13 pm
Posts: 6
Post Blue eyes crying
After months of searching for answers and any help possible I recently found your wonderful website. My sweet, loving husband of 37 years, age 73, has undergone 6 surgeries in the past 7 years (2 of which were open heart surgeries, one knee replacement and one to place a plate in an ankle he broke falling down). The doctors said his problems were related to anesthesia and his age. But for over 3 years we've fought memory issues, hallucinations, delusions and night time dreams that he is convinced are real, I knew there had to be more to this than just a reaction to anesthesia, especially since it's been almost 2 yrs since his last surgery. And then I found your site! We've tried so many doctors and we live in an area with some of the best doctors & hospitals in the country. But it wasn't until I contacted the support person listed for our area on this site that I finally feel there is some hope. We think we may have found help in finding the right doctor this time. The first available appointment wasn't until mid-May but the nurse is trying to get him in much earlier. At least I have more hope now. Although he has not been diagnosed with LBD, he has almost every symptom, even the runny nose, that so many of you write about. I've never joined a forum of any kind and really do not care much for Facebook or any other type of internet socializing; however, after days of reading your posts I've felt more connected to some of you and your stories than I have with my own family or closest friends lately. I now realize my husband's symptoms started more than 10 yrs ago with the REM sleep disorders and for the past 3 years the horrible nightmares that are so real to him. He is suffering from MCI, loss of words, sleeps off and on all day. He has lost so much weight. He is still determined to walk a mile every day, sometimes twice daily which is good. He has a strong determination...he's a real life original cowboy much like John Wayne. But his executive reasoning is all but gone lately. Things that always came so easy for him are now impossible. I'm so scared for him...and for myself.

Tue Mar 29, 2011 7:05 pm

Joined: Sat Oct 06, 2007 4:28 pm
Posts: 781
Location: LA
Post Re: Blue eyes crying
First: Try not to be afraid. Attitude is everything. You will have your limitations allow help in your world as needed. Continue searching for answers and study, study, study! There is no question too insignificant for you to ask on this forum. Someone has been there and can offer advice. I hope you have a thick skin, you will need it. I also hope you have lots of good humor. Friends are here.

And now I will back out and leave the help to others. My days have been spent but I still love the folkes on this forum. You will too. [Just so you know, I took care of Mr Bobby [My John Wayne} with the help of others until he was gone in November of 2009.

Good luck.,, Dorthea

"See this lady she's 85 but she's nice", This is the way my husband, Mr B., introduced me in 2006 to the people only he knew. Death due to pneumonia. Lewy Body Dementia diagnosed post mortem at Mayo Clinic in Jacksonville Florida.

Tue Mar 29, 2011 7:40 pm

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Blue eyes crying
A warm welcome, Ada! So sorry you have to be here but so glad you found this lifeline! God bless you.

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 Mar 29, 2011 8:11 pm

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Blue eyes crying
Welcome to the LBDA forums, not a place you want to be but I am glad you found. LBD can be a bit overwhelming but educating yourself is your best defense. Getting the correct Doctor can make a big difference, I hope you have found him , this is an illness if in fact this is what your husband has that you have to take one day at a time.
Good Luck and visit us often !

Irene Selak

Tue Mar 29, 2011 8:12 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Blue eyes crying
Ada, Welcome, you will find this forum to be a life saver, EVERYONE knows what you are going through. Questions are answered from someone who has been there, although it's not "one size fits all", everyone reacts differently to meds and situations. Hang in there and remember to breath and take care of yourself.

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

Tue Mar 29, 2011 8:50 pm

Joined: Tue Mar 29, 2011 3:13 pm
Posts: 6
Post Re: Blue eyes crying
Thank you all for your support. Even though we've been going through a lot of the problems for the past few years, I know our journey is only beginning and I am very grateful to have found this lifeline. You're so right...attitude is everything. Although I was once somewhat thin skinned, I think I've developed a much more leather like "complexion" these past few years. Last night my DH woke me at 2 a.m. to let me know there was an older couple (guess he thinks we're a couple of young folks) at the foot of our bed trying to give us a puppy. I agreed to take the puppy and smiling to myself thinking "thank goodness it's just a Lewy bred dog that I don't have to actually feed & take care of" :lol:

Tue Mar 29, 2011 9:31 pm

Joined: Wed Mar 09, 2011 12:22 am
Posts: 75
Post Re: Blue eyes crying
Ada...welcome...sorry you are here, but glad you found this group of wonderful caregivers! You will learn so much and read so many stories that will lift you up and break your heart all at the same time. This is truly a lifesaver place. Very funny about the Lewy puppy...I have Lewy mahogany furniture. :lol:

~~Debra, 52, wife to Chris, 64 DX Vascular Dementia 9/10; Alz 10 or 11/2010; Pseudo Dementia 01/11; LBD in 03/11..Was at home until 4/29, 2011, now in a Alz fac./dementia unit.

Tue Mar 29, 2011 10:04 pm

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: Blue eyes crying
Hi Ada - welcome, I'm glad you've found this wonderful site. Remember to fit in at least a little time to take care of yourself. This is a very stressful illness with all its issues that can crop up when you least expect them. You sound like a strong person, but even we strong folks need the support of others sometimes and need to take care of our own health too. Stop back here often for advice, to vent, ask for support, whatever. 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 Mar 29, 2011 10:52 pm

Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Blue eyes crying
Ada, welcome! Your husband's strong determination is a very positive factor. I hope he will continue to do what he is able to do.

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

Wed Mar 30, 2011 12:34 am

Joined: Tue Mar 08, 2011 12:34 am
Posts: 2
Location: Olympia, WA
Post Re: Blue eyes crying
Hello Ada and all who posted here,

I also have been reading the posts on this site and relate to all you are saying. My husband was diagnosed about 16 months ago with LBD/Parkinsonism. It didn't take us as long to get a diagnosis, but like you, we now realize the symptoms had been going on for much longer than we recognized. My husband takes Azilect, and it seems to be working quite well for him. Like your husband, Ada, my husband walks every day. He is obsessed with his daily walk, which I consider positive. Very determined; admirably so. We experience the nighttime problems such as acting out dreams, etc. but so far he does sleep most of the night (with the help of melatonin prescribed by the Dr.). I am so thankful for that. He also has lost weight as food has lost all importance to him. In fact, he is overwhelmed by anything other than very small portions. We do experience some anger problems that begin with the most unreasonable beginnings. It is difficult to remember that trying to reason with him is futile. His executive reasoning has been severely affected. Almost any social activity makes him terribly nervous and exhausts him. I am so thankful to have found this support group. Thank you for being here - may you be blessed. .....Cheryl

Wed Mar 30, 2011 12:54 am

Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Blue eyes crying
Ada and Cheryl, you are very welcome here. I am only a newbie myself, but have found great support and advice here. At long last I found people that know exactly what I am talking about, and can offer advice and a shoulder to cry on. Best of all, there is laughter here too, and laughter is, after all, the best medicine. Come here often, it is a lifesaver,
Ger x

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

Wed Mar 30, 2011 7:43 am
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