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Joined: Tue May 10, 2011 11:13 am
Posts: 2
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Hi, my husband has not yet been dx with DLB as yet but he has dementia and the other day when he visited his gp, he later told me that he was almost positive he has parkinson's, I started researching it and it all points to DLB, I asked if we needed to see the neurologist but he said there was no rush to wait til his apt. My husband is 52 we have been married for almost 35 yrs and he was dx with dementia 3 yrs ago, we noticed it that he wasn't talking as much as normal and he was having a really hard time trying to read the newspaper (which was something he done everyday at lunch), he had to retire on disability last June from a job that he had worked at for 21 yrs. and he could no longer remember how to run the machines (they feared for his safety). He has a lot of confusion, he can't write any longer, he can bearly read, and his speech is slurred and he can't quite get the right words out and he gets very upset, he has trouble eating (can't pick up food with fork), he shuffles when he walks, he has just started the incontience, he does have a shake to his hands. It is so sad to watch him go down hill so fast, I am still able to work full time and he stays at home by himself (daughter-in-law next door), he is so proud of the fact he can still walk to the mailbox and get the mail (that is his accomplishment for the day). Some days are really hard and I just want to cry, but I will not let him see me cry, I try to make everything as perfect for him as possible. It's hard.


Tue May 10, 2011 12:10 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: New to the forum
Welcome Tina. You are both pretty young to have to be dealing with this. He may never get a "sure" diagnosis, but hopefully the drs. can figure out some meds to help lessen his symptoms. If I were you, I'd want to see a neuro as soon as I could for that very reason. All the best, 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.


Tue May 10, 2011 1:26 pm
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Joined: Tue May 10, 2011 11:13 am
Posts: 2
Post Re: New to the forum
Thanks Lynn, he has been seeing a neurologist for the past couple of years, he is the one who dx him with dementia (could not pinpoint which kind), he has been on the Exelon patch and Namenda for 2 yrs., he saw a psychologist and had MMSE test done where he scored really low, he has had 2 MRI's (nothing showed up) and brain waves test (nothing) test for AD (nothing), it just aggravated me so much not knowing ( I once told the dr. that if I only knew what kind of dementia he had that it would make it easier, not so sure now) I realize eveyone is different and I think the not knowing what's going to happen next is the worse part of it. I just take it one day at a time and try to make it as pleasant as possible for him.


Tue May 10, 2011 1:51 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: New to the forum
Tina,

I went through a stage of being kind of fixated on what kind of dementia my mother had. Then I realized that, other than the medication issues with LBD, it didn't really matter that much after all. Two neurologists have diagnosed it as LBD, but one said she might also have AD. Either way, no one can predict accurately what the course of her illness will be. It is so hard not knowing what to expect. Hang in there!

Julianne


Tue May 10, 2011 2:23 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: New to the forum
Tina, this is a place where you can cry and vent and say what you need, to help you keep going. You need to let it out somewhere. Life is never perfect - with or without lewy.
Don't wear yourself out trying to make it perfect for your DH - you can only do your best - you can do no more than that. It is so difficult - and I am only caring for my Dad. It must be so much harder when it is your husband. You are both so young. Visit here often - it is a lifesaver.
My heart goes out to you both,
God Bless,
Ger xxx

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


Tue May 10, 2011 3:18 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
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Tina,
Welcome to the LBDA forums, I agree DX is not the most important thing but dealing with his illness is, I understand your wanting to cry, it is heartbreaking to watch our loved ones go through these type of illnesses, I do hope you find some comfort here and please join in often you will find some really kind, supportive people here !

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Irene Selak


Tue May 10, 2011 5:41 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
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Tina, We're all in this together, you'll get lots of support, and the occassional laugh form all these wonderful caregivers. Welcome, please vent, post your concerns and know there is always someone who understands.

Gerry

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


Tue May 10, 2011 7:43 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
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Hi Tina, too bad the site went down so soon after you joined. I hope you are back. We'd like to hear how things are going now.

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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 Jun 08, 2011 1:23 am
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Joined: Wed Mar 09, 2011 12:22 am
Posts: 75
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Tina, I could have written this about my husband. Sounds exactly like him only he is 64 and was dx, after many errors, in March 2011. You are in the right place. Sorry you have to be here, but so very glad you found us. This board is a treasure of information!

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~~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.
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Wed Jun 08, 2011 9:34 am
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: New to the forum
Tina,

I agree with Irene that you should try to get a more specific diagnosis. There are a lot of reasons to do so. On an emotional level, this is a choice you make, but I have found it helpful to know what I'm dealing with.

But on a clinical level, there are two big reasons you should know. The first is medication. But it isn't just a matter of what his doctor prescribes. If your husband goes into the hospital and you don't know what kind of dementia you are dealing with, he may be given the wrong medication. This happened to my mother before we knew what her dementia was. It send her downhill right away and she only partially recovered.

The second clinical reason is that some dementias are reversible. Really. Some are.

If you have access to a large medical center, perhaps at a university, you may find that they have a "memory clinic." Physicians at this clinic are usually neuropsychiatrists and have more specific knowledge and experience with dementia. A neurologist is a specialist, but only secondary, and they deal with all types of neurological problems. A neuropsychiatrist specifically works with dementia and can give you better information and a more directed treatment for your husband. I strongly recommend this approach.

You are young. It may surprise you to know that there are others who are the same age or even younger on this forum. I hope you can continue taking part and that our youngsters can help you. I know you are dealing with issues that are unique to your age.

Best wishes.

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Wed Jun 08, 2011 12:50 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: New to the forum
Tina,

I think Irene is right -- the diagnosis is not important as it's all about treating symptoms. Unfortunately the diagnostic accuracy for "pure DLB" is less than 33%, and even lower for the combination of DLB and AD. (As you may know, the only way to confirm a diagnosis is through brain autopsy.)

Certainly there is neuroleptic sensitivity with 50% of LBD patients but anyone with any disorder can be sensitive to any sort of medication. It sounds like you are already very closely monitoring your husband's symptoms and treatment. So, you are probably right that a diagnosis wouldn't change your behavior.

Robin


Wed Jun 15, 2011 11:32 pm
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