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 New here- 51 yr old husband just diagnosed 
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Joined: Sun Mar 11, 2012 7:43 pm
Posts: 19
Post New here- 51 yr old husband just diagnosed
Hi my name is Kim. I have been married for 12 1/2 years to a wonderful man who has just been diagnosed with this awful thing. He is 51, I am 42 and we have seven children- one of which is ours together. He is 11.

My husband's symptoms started about 2 years ago but he tried to fight through and hide them from everyone(including me). In January, he could no longer do his job as Dean of Education at a therapeutic boarding school here in north Idaho. I thought he was having a nervous breakdown. He was having terrible anxiety attacks every night and was becoming very depressed. I took him to the doctor and he was put on antidepressants. I hadn't really noticed the way he was holding his right arm so stiffly or the way he shuffled when he walked sometimes. I dismissed these things as the results of old football and motocross injuries or perhaps his fall down a ladder on a submarine during his 20 years of service in the Navy.

He has been on disability since the second week of January and it has become clear that he won't be going back to work. One minute he's fine and the next he's anxious, shuffling through the house trying to figure out what he's supposed to be doing and falling. He can no longer drive. His spatial orientation is very distorted and he hallucinates frequently. He spends a lot of time sleeping or watching TV and I don't feel comfortable leaving him alone for fear he'll fall and hit his head.

The Neurologist prescribed Senimet for the Parkinson's traits and that seems to be helping, but the confusion is still prevalent. We are waiting for a 2 day battery of tests and hope to get some meds to straighten out his cognition.

I would love to connect with anyone who has been through this with such a young patient. I know everyone is different, but it would be helpful to know what I'm in for even if just slightly. Thanks.

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


Tue Apr 10, 2012 11:05 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: New here- 51 yr old husband just diagnosed
Welcome to this very helpful site that no one ever wants to need. I certainly hope the tests result in a treatment plan that helps restore some quality of life for both of you.

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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


Tue Apr 10, 2012 11:20 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: New here- 51 yr old husband just diagnosed
I'm so sorry for your situation! Please accept my warm welcome to this forum which has been such a comfort and source of information for me for several years. God bless you and your family!

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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.


Tue Apr 10, 2012 11:36 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: New here- 51 yr old husband just diagnosed
Kim,

Sorry you've had to join this Forum, but welcome.

Hopefully your husband will be prescribed something (Exelon, Aricept, Razadyne) soon that can help with the mental confusion and hallucinations.

You might benefit from reading the book "Life in the Balance" about a cardiologist who hid his LBD as well. Some families read it together; I don't know if that would benefit your husband.

There are several others here dealing with a young spouse with LBD. You might look through some past posts to see if you can find them. (There are two people here with LBD who are also young. You can look for their posts as well.)

Robin


Wed Apr 11, 2012 12:16 am
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: New here- 51 yr old husband just diagnosed
I am 57, now one year officially diagnosed….

Aricept has helped me tremendously in the brain processing arena….
started taking it last April….

At least I think so….

If I wanted to know……I think I would read my posts from a year ago….and then read them now……

I take 20 mg of Aricept daily…..
10mg immediately after eating breakfast
10mg immediately after eating lunch

immediately means immediately…..

the diareaha and nausea and muscle cramps as side effects were horrendous at first…..
but so much worth it to me to knuckle down and give it a fair try….

I want to cry when I read about someone taking their LO's off a medication after only a couple days for a side effect of diarehha……

Of course every person will respond differently to everythiing…….

I will be going on the Neupro Patch…..as soon as it is available for the Parkie stuff…..I just read it will be available in July….just in time for my next Mayo visit….

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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


Wed Apr 11, 2012 4:28 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: New here- 51 yr old husband just diagnosed
Welcome, and I am sorry for what you are all going through. There's a lot of info. and support here, so read, read, read. I think it may made the road a little less rough for you. Come back often! 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.


Wed Apr 11, 2012 7:10 am
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Joined: Sun Mar 11, 2012 7:43 pm
Posts: 19
Post Re: New here- 51 yr old husband just diagnosed
Thanks for the replies. I will definitely be doing a lot of reading and will ask about Aricept and the other drugs mentioned when we see the Neuropsych.

Bayou, I saw on another post of yours that you can still drive. Could you do that before you started taking Aricept? Did/do you have the visiospatial issues?

Kim

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


Wed Apr 11, 2012 10:25 am
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: New here- 51 yr old husband just diagnosed
I am very blessed to have less visual/spatial issues on my plate….

My tests indicate that also….My doctors are okay with my driving at this time…

There are early indications that this won't always be….

this is one of the hardest areas for me to talk about….(for everyone else, too)

losing ones independence is the scariest thing….one little bit at a time…

I am starting to have some visual issues…..

Low light…and first waking images…..interpretations of objects…..I have had a detailed talk with my doctor…..
I believe it is the early presentation of what Dr. Boeve describes as the classic…..chair being interpreted as a giraffe

Muscle freeze…..is a scary subject…..early……

Verbal Blocking…..is increasing

of course if we were to list all my symptoms……do you have a week?
I do….

it is hard…being young….and having this…..I know…..

I want you to think about this…..your husband has you…..
that is something that I don't have….
I can't get one of those in a bottle….

Thank you, for being there….

anyway I can help? don't hesitate….hopefully I won't add to your problems…..
remember anything I say….is suspect….great world I live in….isn't it?
Insight into everything….is increasing….insideous

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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


Wed Apr 11, 2012 10:47 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: New here- 51 yr old husband just diagnosed
Kim,
I too would like to welcome you to the LBDA forums and I am very sorry for your need to be here, I understand that only too well as my husband was in his mid 50's when he became ill and we had a young child at the time at home and it did complicate things a bit. But I will also say that our son was a Hugh comfort to my husband too!

I do hope they are able to get your husband on one of the memory type drugs as they are what might be helpful to him and try and learn as much as you can about this illness it for sure is a rollercoaster for not only the person who has it but the entire family, I do hope you have a good support system !

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Irene Selak


Wed Apr 11, 2012 11:54 am
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Joined: Sun Mar 11, 2012 7:43 pm
Posts: 19
Post Re: New here- 51 yr old husband just diagnosed
Thanks Irene, we do have a great support system. Would you be willing to share your story with me? I'd like to know where you are in this journey and how you've coped.

Kim

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


Thu Apr 12, 2012 10:59 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: New here- 51 yr old husband just diagnosed
Hi Kim,
Sadly my LBD journey has been over almost 7 yrs ago, my husband was sick about 9 yrs and DX'ed about the last 4 yrs he orginally was DX'ed with PD and I always knew that was incorrect. For my husband it was many physical issues with constant falls, the Blood Pressure issues which in turn caused most of the falls and as he progressed he would say he understood what you were telling him but he didn't for example I would say to him stay seated a moment untl I get the whatever and by the time I was back literally in a minute he was up and trying to walk and sadly it was this behavior that ended his life. I did my very best for him as I am a fixer but LBD was the one thing I couldn't fix, I was able to keep him home for the duration with the exception of a rehab visit after a fall and he was in the hospital many times.The end was very peaceful for him and he was surrounded with family and I know he felt loved. There are no special medals of honor to keep a loved one home, it is a great deal of work, planning and the time frame is 24/7. Each family has different reasons for different things they do in their journey, I learned early on not to judge anyone for how they handle their Loved ones illness, sometimes placement is the only safe option.My son was 13 yrs old when his Dad passed and he misses him everyday but he is fine and a wonderful young man of 21 now and the field he is in is Paramedic and I would like to believe that because of all that he went through with his dad's illness that helped form his future, that to me that is the silver lining in my husband's death at 65 yrs old ! I was only 52 yrs old when he passed.
I hope this answers a bit for you!

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Irene Selak


Thu Apr 12, 2012 11:31 am
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Joined: Sun Mar 11, 2012 7:43 pm
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Post Re: New here- 51 yr old husband just diagnosed
Thank you Irene. It helps to know that others have survived similar situations. I really appreciate you sharing that with me.

Kim

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


Thu Apr 12, 2012 4:28 pm
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Joined: Tue Aug 24, 2010 1:45 pm
Posts: 35
Post Re: New here- 51 yr old husband just diagnosed
Hi Kim. My dear husband Tom was diagnosed at 59 but showed symptoms years earlier. There are definitely unique challenges in dealing with a younger LO. My advice to you would be, make sure you have a doctor(s) that is totally familiar with LBD and is willing to work with you on its changing aspects. Second, I recommend when problems and questions arise definitely turn to this site for information, help and support. As you already know, the progression of this disease is different for each person, but as you scan these pages chances are you'll find a post that closely fits your particular situation. Last, ask questions and trust your own judgement. If some thing or some one doesn't "feel" right, keep looking for answers. Sending you and your family love and strength ...Kathy

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Kathy, 63, wife & caregiver of Tom, 64 dx 2007 (later stage) lives in dementia care facility in Durham,NC


Sun Apr 15, 2012 10:16 am
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Joined: Sun Mar 11, 2012 7:43 pm
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Post Re: New here- 51 yr old husband just diagnosed
Thank you Kathy. I see your husband is in the "middle stage" of LBD. What exactly, does that mean? What does a "regular" day look like for you? I'm wondering how his symptoms compare to Brent's? I am trying to get a grip on where we are. I know everyone is different. It just seems like once the initial anxiety and depression from trying to hide it wore off, his LBD symptoms became much more prevalent.

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


Mon Apr 16, 2012 10:41 pm
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Joined: Tue Apr 24, 2012 5:00 pm
Posts: 78
Location: Fayetteville, NC
Post Re: New here- 51 yr old husband just diagnosed
Kim,

I am also new here. My husband was diagnosed about 7 years ago and just turned 57. I will be 53 in May. We have 3 girls, now 18, 20 and 22. I can tell you that Aricept did help with the confusion. We were fortunate to be placed into an Alzheimer's study through the Mayo clinic in Jacksonville, Florida about 3 years ago. I can't say enough about how they were able to give us a few more years of improved quality of life through the medication management. At the time we first saw them, Ted had been having severe hallucinations & delusions. He was also military and had tried to pull the car over at one point because he thought there were people with guns in the vehicles around us as we were traveling (at that point, I had NOT yet been to Mayo). He was only on Mirapex at that time, which had worked for awhile, and the local psychiatrist had recently added Seroquel. Turns out the Seroquel dosage was too aggressive for Ted (I guess that LBD drug sensitivity thing). The Mirapex was also no longer covering like it used to. He'd had a trial of Sinemet early on, but had some problems with fainting, so the local doc worked with increasing dosages of the Mirapex. However, when it was clear we needed to do some changes, he was totally on board with us contacting Mayo and Chapel Hill. He is one of those gems who has no problem with uncovering every avenue available to find any research that may help.

We got to Mayo clinic when they responded to an email I'd sent to their website. They did a very thorough (2-day) workup and, through much assistance with our local doc, titrated him down off of the Mirapex and on to the Sinemet. We also safely came off of the Seroquel at that time. I have to tell you, the changes were great. Ted was even able to play some golf at times for awhile. I cherish the extra time this gave us.

We continued with visits to Mayo in Jacksonville in addition to a couple more forays to the Movement Disorder clinic at Chapel Hill for any new information that might be helpful. We also attended a couple of seminars/lunches that gave us good info to try (wrist bands for drooling, etc). But, it was clear that LB was becoming worse, even with our continued tweaks. On our last visit to Mayo, they recommended we begin hospice care. That was also a blessing. I was able to get more help for Ted and also myself. I also was able to get a specialized wheelchair, bed, and ramp through the VA. The rollator has been especially helpful since Ted's visio-spatial awareness is horrible.

It can take your breath away at times to see the changes in ability and cognition from moment to moment. But, I live for those smiles and hugs. I struggle to "redirect" - I kind of actually hate that term, but it is the recommended action--Ted when he sees the little people, the mechanical dogs, the "things" in the corner. I also have been right next to him when he looks for the "other Jeannie". Those hurt, but you do your best.

They've recently added Namenda--seems to be helping also for now. And, a few months ago we added Seroquel back in. I was terrified of using it for 2 years because of the earlier reactions. However, smaller dosages and only at night to help sleep (in addition to some Ativan and Clonazapam) seemed also to improve things somewhat.

I can only emphasize that you keep asking questions, see what's right for your husband. My heart truly goes out to you.


Wed Apr 25, 2012 11:59 am
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