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Joined: Fri Apr 15, 2011 1:54 am
Posts: 4
Post New/Old Member here
Hi, I'm savta, (username). My Husband, age 56, has had Lewy Body at least since 2002-3, was diagnosed in 2006, 2007 with appointments at Mayo, with Dr. Boeve. We had a perfect, and I mean perfect, marriage, from H.S. Sweethearts, to 25 plus years marriage (30+ now), despite so many unexpected tragedies, illnesses, etc., around us, and some as yet unidentified genetic autoimmune condition with me, causing me to develop a new autoimmune disease, in adulthood, every few years, since 1992. He was a (very PT in hours!) Loving Caretaker to me! And nothing got in the way of DH's incredible career, my full life of our raising two (now Adult) Wonderful Children, my work in a Hospital and as a PT educator, and Volunteering, travels, a blessed Life, I could never have dreamt.
Suddenly, w/ DH's (totally mysterious to me) personality changes, cognitive changes, and so on, everything went horribly wrong (with us). I was in shock, disbelief, and quietly read here, privately contacted Irene Selak and others here, plus the LBDA hotline, until able to "come out of my shell," and post. We, like many others, were alone, meaning at first, total disbelief among all generations of relatives (it was in my head), and absolutely no help. One best Friend got me through this, plus the two Support Group mtg.'s DH "allowed" us to attend. Otherwise, a Spouse internet group, and this site, w/ Irene Selak, the LBDA hotline, got me through, plus much, much reading.
My DH was just (fluctuating of course) a mean, unloving, ADD, you name it, kind of man some days, still kind, gentlemanly others. (Now ADLs are a problem.) In our first two days of interviews with Dr. Boeve, 2006, DH basically named me the "cause of all wrong," day #1, and the next day, the "best Wife one could have." In that same frame of time (2003ish), his first tremors and other PD type symptoms, began. Also, the late 90's brought the sleep apnea, other sleep involved, CPAP symptoms Dr. Boeve immediately recognized. Fortunately (or not so, given genetics) I recognized PD type symptoms, as I cared a small while for my paternal GF w/ Parkinson's Disease. As for the unexpected behavioral, and extreme medical/ drug sensitivities, I was totally in the dark. I also broke Rule #1: Don't argue, etc. unless very necessary.
We've come a long way, much has changed, but we've a long way to go, perhaps not in time given to us, but in the awful things I see, and am told will come. Every day he varies, often hour to hour with the behavioral, cognitive, etc., and he is exhausted, but so am I! At least we've made it through his "semi" (actual) early retirement, my 1st having to call the Police, and one Daughter, her Spouse (the accepting one, like a Son to me), and two Grandchildren, ages 3 and fewer than two mos., a real kind medicine for DH, actually us both, for sure, moving to be closer to us. And finally, finally, I've opened up to M.D.s (DH wouldn't "allow" it, never a trait in our non LBD marriage, plus I was being physically, always emotionally abused), and, with the Police call plus their threatening him w/ my getting a Court order, unless he "allowed" in Nursing care, for meds, etc., and help for messiness, hoarding, another of his problems I am just too tired to manage, plus to go and get the prescribed therapies he needs. On and on. He's complying, no court, thank goodness, yet......
I guess I've had no time to post.
I am so grateful to you all (Many Thanks to Irene and Robin, and all Volunteers!) , and I hope I can help as much as I've received help.

savta, age 54, S.E. FL
(I'll be composing, or quoting, a signature. For now, this is what I say to my DH: Everyday we wake up, sun shining or not, is a day with which we've been blessed.)

Tue Apr 19, 2011 7:30 am

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: New/Old Member here
I'm glad you are posting here - this is such a warm community of caring people who know what you are going through. Your own health situation must make daily coping & functioning much harder. I'm so sorry for what's going on in your life but glad you now have a dx for your husband so you can put what he's doing in context. Hope you come here often. 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 Apr 19, 2011 7:40 am

Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: New/Old Member here
Dear savata, you are welcome to a new family who understand and will help you so much with all your care and worries. I would be lost without them, and don't ever hesitate to vent, ask for advice, or just look for a shoulder to lean/cry on. This is a lifesaving place to be - I know without everyone here, I would not be able to continue caring for my Dad. God Bless, and visit often,
Ger xxx

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

Tue Apr 19, 2011 8:35 am

Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: New/Old Member here
Welcome Savata, This is the only place that I can say or ask anything and it will be understood. Everyone is very caring, they have made my life easier, knowing that you're not alone is a blessing. My husband of 49 years, was a kind, mild mannered man, but I find myself thinking he's gone and I have a mean, nasty, resistant man living with me. We just have to figure out how to deal with this life we've been handed. I hope to keep Frank home, but when he constantly resists, it's physically exhausting, so we'll see.

I hope you get glimpses of the man you married, such a sad way to live.

Take care and hope you post often.

Fondly, Gerry

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

Tue Apr 19, 2011 10:01 am

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: New/Old Member here
Welcome, Savta. It is a comfort to know that we are not alone in our painful situations. To see the wonderful man we love turn mean and abusive is a nightmare and, no matter how well we try to handle the situation, it hurts. It almost reminds me of that old sci-fi thriller, Invasion of the Body Snatchers where likenesses were made by alien forces that replaced the real people. It probably varies from person to person but, with my husband, it was like a whole personality transplant. I'm sure it has a lot to do with the part of the brain that controls personality being affected by the disease. It's so sad. Glad you found this forum and may 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 Apr 19, 2011 11:21 am

Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: New/Old Member here
I add my welcome to all the others. As a wife who has had to have the police come twice, I know what you are going though. My husband is now in an Adult Family Home. He is not happy at being there but he reserves his anger for me. He is, at this time, still acting appropriatly with the staff there.

This site was a lifesaver for me. I found others who KNEW what I was going though and who had experienced the same things I was going though. We are all a support to each other. In a sense, you have come home. Again, Welcome. Smiles, Nan

Tue Apr 19, 2011 11:26 am

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: New/Old Member here
Thanks for introducing yourself, Savta. It's always nice when people momentarily come out to be welcomed though sorry you've had to join us here.

Tue Apr 19, 2011 1:06 pm

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: New/Old Member here
Welcome! I am so glad you found your way here as I know you will receive much support and great information from our members that are more than willing to share.

Irene Selak

Tue Apr 19, 2011 1:46 pm
Profile WWW

Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: New/Old Member here
I am so glad you posted.

Your post has very helpful for me. I am going to print it for my wife. We are struggling with all of this, right now.

This is all so very hard, for everyone.

I really don't know what to say. Except, thank you.

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

Tue Apr 19, 2011 2:33 pm

Joined: Fri Apr 15, 2011 1:54 am
Posts: 4
Post Re: New/Old Member here
Dear All,
I would be remiss if I did not extend my deepest gratitude to all who welcomed me here, thanks again to Irene and Robin, and best wishes and prayers to BayouCajun (hope I have that right) and your wife. To all of you who opened up this horrible wound of watching (yes, it is a lot like one of my -former- thriller favorites, Invasion of the Body Snatchers) your spouse change into someone who is angry, abusive, and sadly, all the other characteristics we watch creep in, blessings, and Thank You.
It's hard enough to live it, and then to repeat it; but I was riveted yesterday and this morning, by your warm welcome, and all the new information provided here.
All I know is I grab the times my DH is clear thinking (though he is just completely different now, even at his best), and I remind him how I Love him, would never hurt him, never do or think all he accuses me of; I ask him to please try to give me benefit of doubt, and to ask himself, did I do or think the way he accuses me before the illness came into our lives.
To myself I think "For better or worse, in sickness and health." I remind myself of all he's done for me in the past. But in another Spouses Group I once read "My Marriage and Husband, as I knew them, are gone." Somehow this helps me, though I'd never, ever wish this on anyone. Thank You All for not letting me be alone.
Again, I hope I get much private time to read, then to help. I owe it to you all. Be well. Again, Thank You.
I'm with you all in my heart,
Everyday we awake is another day with which we've been blessed.

Wed Apr 20, 2011 8:08 am
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