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 husband 59 with lbd 
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Joined: Fri Apr 06, 2012 10:23 pm
Posts: 5
Location: Sioux City, Iowa
Post husband 59 with lbd
My husband age 59 has been diagnosed with early onset dementia. He has had a lot of medical testing over the past year and has been referred to a neurologist specializing in dementia. He said he highly suspects LBD. Our insurance won't cover pet scans but he is now on disability social security. At the point of receiving medicare in two years the pet scan will be covered. We have been blown away by this diagnosis. My husband is depressed and I don't think I've ever been so stressed out in my life. Trying to deal with financial issues, worrying about his being alone when I am at work and everything else. Many days it seems like a different person has taken over his body. Then he'll have some days in a row where he is doing quite well. I get my hopes up then they are dashed when the bad days come. I have to learn how to take life a day at a time. I am very frightened of the future for both of us now. How do we go through this emotionally and financially. Thankfully we have two great sons who live near by and are very supportive. Also, his dementia came on quite suddenly after thyroid symptoms of muscle pain and fatigue. They went away after the thyroid was treated and his memory began to fail. The specialist said the thyroid condition probably triggered the LBD to come on earlier then it would have. I just wonder if it is common for this condition to come on out of the blue. I am glad I found this forum for the support we will need.

Jan


Mon Apr 30, 2012 9:54 am
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Joined: Sun Mar 11, 2012 7:43 pm
Posts: 19
Post Re: husband 59 with lbd
Hi Jan, I am very glad you found this forum, but very sorry that you needed to. I know it feels like the rug's been ripped from beneath you. Lewy is very cruel- one day you're up, the next day you're down. Sometimes it's hour to hour. My 51 year old husband was recently diagnosed and it's been life-changing for sure. The best advice I can give you is just to take one day at a time and be sure to take care of yourself. This forum is a fantastic resource. Use it for all it's worth and know that you are not alone.

Kim

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Kim-wife of Brent, 51 yrs old, newly diagnosed


Mon Apr 30, 2012 11:02 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: husband 59 with lbd
My heart just aches for both of you! Such a horrible disease. Glad you found the forum.

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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.


Mon Apr 30, 2012 11:30 am
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 190
Location: Portland, Or
Post Re: husband 59 with lbd
Welcome to the forums. My mom's LBD came on suddenly, too, after she had a terrible case of shingles 2 years ago. Looking back though, she had many symptoms years earlier that we thought were because of aging, surgery anestethia, etc. She's doing wonderfully well right now after a couple of scary downturns last fall. This is truly like a roller coaster ride with all of the twists and turns and ups and downs!! Good luck to you and your family.

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Ellen 59, caregiver for mom Marion 81,dx LBD Feb 2011


Mon Apr 30, 2012 11:59 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: husband 59 with lbd
Jan,

With our local LBD support group, many people report the sudden onset of dementia symptoms after some traumatic event (death of a spouse, car accident), surgery, or hospitalization. Many people report a more gradual onset.

I'm not sure what a PET would reveal. Are there any medical research centers near you where your husband could participate in research and gain access to some state-of-the-art imaging?

Robin


Mon Apr 30, 2012 5:55 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: husband 59 with lbd
Jan and Kim, did either of your husbands have sleep disorders?

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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


Mon Apr 30, 2012 6:22 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: husband 59 with lbd
jan .. welcome . so glad you found this site.... but so sorry for your need, to be here.

my husband started showing symptoms at 55 or a tad earlier.. it is scary, sad, heartbreaking and over whelming...

please stay , read, learn and plus take care of you...

so much info on here...
the folks are great and without them, cant imagine what i would have done??... know for sure, i would've made many more mistakes, than i have.. and not been able to ask the right questions, that i have, nor stood my ground, for my hubby.. and another huge thing is: i don't feel so alone!!

this place is the best!!
cindi

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sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Mon Apr 30, 2012 7:46 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: husband 59 with lbd
Welcome and so sorry for your need to be here. You are among people who really understand, as we CGs have either been there, done that, or are there now and can relate to what you are going through. It really was a soft place for me to land when my dad was still alive and declining. Big hug to all, 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.


Mon Apr 30, 2012 8:26 pm
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Joined: Fri Apr 06, 2012 10:23 pm
Posts: 5
Location: Sioux City, Iowa
Post Re: husband 59 with lbd
Thank you for all of your replies.

JeanneG, yes my husband used to have night terrors. He would throw me out of bed, run into walls, he even broke a window. They stopped about ten years ago after he had them most of his life. The doctor asked us about that and said that is related to Lewy Body.

Jan


Mon Apr 30, 2012 9:27 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: husband 59 with lbd
My husband's LBD did not start early but it did seem to be an extremely sudden onset. In May 2003 he was pronounced "normal" on a nuerological exam, and in early June he very obviously had dementia with severe symptoms. On the other hand, the reason he was having neuro exams about every 18 months was that he had had REM sleep behavior disorder for decades. If you consider that the beginning of the lewy body disturbances, then he had a very slow beginning. Both of our husbands seemed to jump into dementia "out of the blue," but maybe the pathology had been there for longer than we knew.

Whether it comes on suddenly or creeps up slowly, LBD is cruel, cruel disease.

Enjoy every good day, every good hour as a gift. Don't get your hopes up, but live in the moment. Deal with the bad days as they come. Don't despair, for tomorrow may be better.

Hugs, and welcome to the forums.

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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


Mon Apr 30, 2012 9:58 pm
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Joined: Sun Mar 11, 2012 7:43 pm
Posts: 19
Post Re: husband 59 with lbd
Jeanne, yes my husband has had very vivid dreams and acting out in his sleep for as long as I've known him. I never had any idea that it would lead to this!

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Kim-wife of Brent, 51 yrs old, newly diagnosed


Tue May 01, 2012 11:06 am
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: husband 59 with lbd
Kim, exactly! I would never have dreamed that John's "dancing feet" as he dreamed would end up as a cognitive disease diagnosis later!
And, Jan, I would never have connected a thyroidectomy with a future LBD diagnosis either. Many LBD patients have surgeries as trigger events for an uptick in symptoms.
The fluctuation of the wide variety of symptoms that may occur still makes me shake my head in disbelief.
It is the most trauma any of us have likely ever known. It took me months to find my feet again and longer to feel the new "normal."
The two things that helped me most were finding the right doctors for our medical team and learning (still working on this) to stay in the moment. Our counselor wisely told us, "Yesterday exists only in your mind. Tomorrow may never come or be very different from your assumptions. Today, right now is real. And we can almost always handle what is right in front of us."
It also helps to be reminded that none of us is alone in this battle.
Take care,
Pat

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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]


Tue May 01, 2012 8:09 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: husband 59 with lbd
I didn't have any idea, either. We actually went to a marriage counselor when Coy began to hit me in his sleep. This mild-mannered man who didn't even raise his voice to me in the daytime was beating on me in the night? What's going on here? The therapist we went to happened to use hypnosis, and as soon as she said "just let yourself relax" he was immediately asleep! After six session she admitted she couldn't see any problem in our marriage. About that time Coy heard a radio interview about a newly-recognized sleep disorder that matched his symptoms perfectly! He has been seeing Dr. Carlos Schenck ever since.

The night problem was very effectively solved with klonopin. At each routine visit Coy had a very thorough exam. Seven or eight years into it Dr. S explained that researchers suspected a link between RBD and Parkinsons, and they watched carefully for any signs of that disease. A few years later, he said that Coy was probably past the age when Parkinsons would show up if it were going to. In 2003 when Coy had his sudden meltdown, inability to sleep was a huge problem. I called Dr. Schenck for help with that particular problem. Yes, he thought he could help, but more than that, he thought he knew what Coy had. I had never heard of Lewy Body Dementia before Dr. S said it on the phone, but now I know that RDB can be an early warning sign (often a VERY early sign) of Lewy bodies forming in the brain, which can result in Parkinsons and/or a particular kind of dementia.

Who knew? Fortunately, some researchers!

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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


Wed May 02, 2012 12:32 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: husband 59 with lbd
Hi Jan,
So glad you found the LBDA forums, 59 is young but certainly not unheard of, my husband was in his mid 50's when we started out on our LBD journey. Is there anyway he would qualify medicaid until he gets his medicare ? It is so much to think about with everything coming at you all at one time , if you could find a research , they might assist with a Pet scan.
Good luck with all of this and I hope you visit us often here.

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Irene Selak


Fri May 04, 2012 10:08 pm
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Joined: Mon Dec 05, 2011 8:53 pm
Posts: 4
Location: Southeast USA
Post Re: husband 59 with lbd
Hi Jan,
My husband was diagnosed with LBD in August 2011, but the recent PET scan shows dementia but not LBD. This new neurologist doesn't think it's LBD (hope he's right). I, too, am very scared and stressed out over the future, medical insurance, and finances. We both just married for the 1st time a year ago at the ages of 55 and 56. Three weeks later I was in a doctor's office discussing memory problems only to learn he has a dementia. I'm very worried that the stress and anxiety I'm experiencing will kill me first. I'm in this all alone. No one seems to know how to help me. One of the biggest problems right now is his frustration with his condition. It kills him that he had to quit his job (the supervisor called me and told me there was a problem) and that he can't drive. He doesn't like being "babysat" by anyone. He's really not in a bad way but I see the confusion and I'm afraid to leave him alone. He goes to a daytime program and then he's glued to my side whenever I'm not at work. He's not a burden, but I expected when we got married we would have some alone time. But that's not the case. I can relate to this being the most stressed you've ever been in your life. I'm sitting at work writing this email because I have no privacy at the computer at home. I don't want to frighten him any more than he already is. I'll say a prayer for you.

Lyn

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Lyn


Mon May 21, 2012 4:56 pm
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