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 Hi new to this 
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Joined: Wed Dec 22, 2010 12:42 pm
Posts: 5
Post Hi new to this
Hi I thought my husband had ad , early onset and now was told he has lbd, very confused, the Va nuerologist has determined this, but his reg. dr. says no. I have looked up the systoms and I think I agree with the va doc. He has had very restless and sleepless nights for the past year and half, A weight loss of about 20lbs. constipations , his voice is getting very low, and sometimes he thinks there is company in the house , when there is no one.
My mother recentley died and had parkinsons and some of her traits were the same. he has no tremmors.
He was in the vietnam war, are there anyone else that has this and was in vietnam?
No one in his family tree has ever had this, mine yes but not his.


Wed Dec 29, 2010 2:21 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: Hi new to this
hi set.. sorry for your need to be here.. but welcome

my husband was in vietnam, and sprayed with agent orange daily.. if not sprayed, walking thru the sprayed foliage all day!!

he was diagnosed with ad at 63, but the symptoms have been there since he was 55.. he has lots of the characteristics of lewy..the hallucinations, the delusions, the ablity to have nothing wrong one day and the next bad.. and then go back to fine again.. this has been going on for over 12 years.. and he can still get back to fine.. but the bad days are worse than they used to be.... he does shuffle .. not sure if its just being lazy. or?? he has had times when his legs give out.. he has always had restless sleep,, runs and moves all night... the reg doc suggested lewy with the last set of hallucinations.. but the nueroligist at the va is saying too soon, to call... so im here wathcing and learning what to look for and making sure he doesnt get the wrong meds.. just in case..

there are lots of folks here with so much knowledge, that they willingly share.. i hope you get some answers for you

take care..
cindi

_________________
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..


Wed Dec 29, 2010 3:34 pm
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Joined: Wed Dec 22, 2010 12:42 pm
Posts: 5
Post Re: Hi new to this
Thanks for answering, my husband must be the about the same age as your husbandand was originally diagnosed at age 62 with depression and then ad and now maybe lbd. Gee what a ride, not sure what group to join next. Did you apply for va comp. , I really think this has something to do with his time in Vietnam. Just looking for others with this same things happening to them.
What does your husband do all day? The dr. keep telling him to keep busy , but I have yet to come up with a solution, Any suggestions would be appreciated.
Sorry your are in the same place, I don't of course say that its hard to him and am very upbeat most of the time.
But very hard our social life is down to almost nothing when we used to go out every weekend.
Sorry to complain
Suzy


Wed Dec 29, 2010 3:51 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Hi new to this
Set,

You might like to introduce yourself in the Introductions area of the Forum. You can start a post here:
posting.php?mode=post&f=11

More people will probably read it than they would in the "Off-topic Posts" section.

You are probably aware that the VA has recently designated Parkinson's Disease a service-related disorder if someone was exposed to agent orange in Vietnam.

At which VA is your husband seen?

Does your husband have LBD symptoms other than parkinsonism? Does he have hallucinations or fluctuating cognition?

Robin


Wed Dec 29, 2010 4:36 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: Hi new to this
suzy.. i hear ya all around...

once he got the diagnoes i did start asking the va for somethings we should have asked for, years ago.. but hubby felt he got back, so he was lucky and didnt want to ask, for anything.. but with the ad diag.. i couldnt get any insurance for him and being self employed.. i started asking.. he has been diagnosed with ptsd and has a small benifit from that and his feet are terrible frorm walking in the swampy water for hours each day in vm!!... and that was a higher benifit.. i feel he does have ptsd and since he was point man and was in mai lai.. going back for a bit more.. the main thing is to make sure he has enough so hes taken care of for life, with medical...

i have read many articles, if you can get the ptsd.. then you cn go after the diagnoses of early onset ad..... ive been clipping news paper articles for a few years , with those statements and studies that prove the connection.. but taking one step at a time... they are all prorated back, so it worth it to try.. they make it very difficult.. and you want to stop and say no more of this... but he severed and it changed his life forever!, so ill keep fighting for him!!!

as far as what he does all day .. nothing much... drives me bonkers, somne days.. cause i love to stay busy.. but im adjusting, the best i can... and finding lots of things to keep me busy at home.. the only thing i can get him intersted in, is jigsaw puzzles .. the 100 piece, very easy.. and the rest of the time he rereads articles or mail . or as i mentioned earlier, he hides everything in site.. so that keeps us both busy..

good luck and i sure hope others can help..

have you started with the va comp?? i know sher paid to have some one do it .. but they have folks there, that are not employed by the va.. but are past service guys and gals that will help you all the way thru... for free!!

holler if i can help you with any of that .. im sure its probably close to the same every where

take care,
cindi

_________________
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..


Wed Dec 29, 2010 4:43 pm
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Joined: Wed Dec 22, 2010 12:42 pm
Posts: 5
Post Re: Hi new to this
is lbd concidered parkensons?
Suzy


Wed Dec 29, 2010 5:13 pm
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Joined: Wed Dec 22, 2010 12:42 pm
Posts: 5
Post Re: Hi new to this
robin,
yes he has cognitions problems and is being seen at the VA in east orange nj
He also originally diagnosde with ad.
Thanks for any help
Suzy


Wed Dec 29, 2010 5:17 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3394
Location: Vermont
Post Re: Hi new to this
Hi Suzy & welcome! There are lots of people to support you here who know what you are going through and there's a lot of info. that will be helpful too.
Re: The VA - technically the rules should be the same everywhere, but people in some states seem to get great info. and service and people in other states/regions have a more difficult time. It is a huge bureaucracy and if you've tried getting them on the phone you know what I mean!
Many American Legion posts have knowledgeable, helpful people. Some are helpful but will tell you they don't have the info. about what forms to fill out, where to send them, etc. Your state may have some employees whose entire job is helping veterans and their families navigate through the VA processes. If you happen to live in Vermont or Maryland I can give you names and numbers of helpful people.
Also, there is some useful info. already on this forum. Go to:
viewtopic.php?f=12&t=1503 Good luck! 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.


Wed Dec 29, 2010 5:20 pm
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Joined: Mon Dec 27, 2010 11:34 am
Posts: 67
Location: North Carolina
Post Re: Hi new to this
Set,
You are here and this is a wonderful and informative place to begin. I'm new as well. Day 2 and the information found on these posts prevented a wrong move regarding mom's meds. The LBDA website will also save you time and energy regarding research.

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Katie (36) daughter of Marcia (70)


Wed Dec 29, 2010 5:49 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Hi new to this
Suzy,

"is lbd concidered parkensons?"

Lewy Body Dementia is an umbrella term that includes two diagnoses -- Parkinson's Disease Dementia and Dementia with Lewy Bodies. PDD is definitely Parkinson's Disease. Whether DLB is Parkinson's Disease or not is quite controversial: movement disorder specialists say it is, memory specialists and psychiatrists say it is not. (That's a gross generalization but anyway...)

Parkinsonism is a possible symptom of LBD, but it's not required. I have heard movement disorder specialists say that *everyone* with DLB will eventually develop parkinsonism.

For more info on this, I encourage you to read all about the symptoms of LBDA on lbda.org. This webpage is helpful:
http://www.lbda.org/category/3438&cfid= ... mptoms.htm

You didn't mention that your husband has hallucinations. So I assume he doesn't. It's pretty unusual to have an LBD diagnosis without hallucinations. On what basis was the LBD diagnosis given?

You may know that a confirmed diagnosis is only possible upon brain autopsy at death. I encourage you to make these arrangements. The SF VA and other VAs I know of don't have a brain donation program or brain autopsy. You might check with your particular VA. In general, I recommend brain donation to the Mayo Clinic as they are heavily involved in brain research in both AD and LBD.

Robin


Wed Dec 29, 2010 7:23 pm
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Joined: Tue Aug 17, 2010 9:20 am
Posts: 184
Location: So Cal
Post Re: Hi new to this
Hi Suzy,
My husband Ken was also in the Vietnam war, also 'in country' during the qualifying years of getting sprayed with agent orange, which will be a 100 percent disability if the VA finds that he has Parkinson's. Our paperwork was filed in August and we've heard nothing except an acknowledgement that they received it. He is now 65 and has LBD, although he was also originally diagnosed with early AD. We started seeing the odd behaviors when he was 60, but in retrospect he was showing sleep disorders and some other symptoms before that. He has taken two drastic spirals downward in the past year and a half (both times from injury) from which he never recovered. He is at a point now where I have to have a caregiver get him from and into bed, do showers, help with the incontinence care and walk with him (he can walk only on tippy toes, with assistance now). He also has some swallowing issues, but actually regained ground with that and can again enjoy many of the foods he loves. He doesn't talk very much now but he definitely knows me and who I am to him. I'm sorry you have to be here but this forum is such a wealth of knowledge and commaraderie (sp?). It's amazing the comfort that is to be had from knowing someone else knows just what you are going through, not to mention the info that is shared and tips that are passed. Welcome. Sher

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Sher (53) married 29 years to Ken (66) who was diagnosed with LBD in 2008, but it most likely began many years before.


Wed Dec 29, 2010 10:52 pm
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Joined: Mon Dec 27, 2010 11:34 am
Posts: 67
Location: North Carolina
Post Re: Hi new to this
Sher,
Welcome. I just joined a few days ago and must admit I have already found a great deal of solace. Filing paperwork in August and still waiting? I cannot imagine. Read through the posts and forums- you'll find a wealth of assistance. Take care, Katie

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Katie (36) daughter of Marcia (70)


Wed Dec 29, 2010 11:54 pm
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Joined: Mon Dec 27, 2010 11:34 am
Posts: 67
Location: North Carolina
Post Re: Hi new to this
:lol: Sher sorry- I keep looking at the post dates and thinking they are the join dates. Time for me to get some rest.

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Katie (36) daughter of Marcia (70)


Thu Dec 30, 2010 12:06 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3394
Location: Vermont
Post Re: Hi new to this
Tiny - yes, the VA can take many months to get back to you. In Aug., Sept. and Oct 2009 I filled out all kinds of forms, under the direction of several different VA employees. When I finally got the correct form I met with another VA employee in MD and drove the form to her. (I'd been given several WRONG forms and addresses during this time, only to have the forms returned or be told they were the wrong form.) She was very competent, helped me get the proper form properly filled out and SHE sent it to the right place. That was mid-Oct. 2009. Every mo. I got a letter saying they have it, they'll work on it when they get to it. Their letter back to me was sent in March 2010 - 5 months! They told me my dad's claim was denied, and I had a certain amount of days to respond. This letter came when I was on a winter escape and didn't get back until after the amount of time I had to respond.
At that point I read on this forum that a veteran has to have less than $80,000 in cash assets or they will get denied. Well, if I'd ever been informed of that (I didn't know about this forum when I was going through all the paperwork) by one of the VA folks to begin with, I wouldn't have spent over 100 hours in meetings and phone calls and filling out 26-page forms! (as well as waiting 5 frustrating months only to get their letter after I was gone for a while.)
Anyway, that's why I recommend that new folks read every topic as soon as you can that might pertain to your situation. You never know what gems you might find that will save you time, money and energy. All the best, 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.


Thu Dec 30, 2010 9:52 am
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: Hi new to this
tiny i flled at the same time lynn filled over a year and a half ago and they did make a partial decsion a year later.. and we are stil in the works for the other.. its takes forever... however the last guy got moved up and new guy came.. i met with him last month and he put a cover sheet on the paper work and it said expiate and dang if i havent hear back already and they said we'd have a hearing later this month.. we'll see??


lynn i went to the link you offered above and it didnt work.. it was supposed to send me to place where there was va info.. and i got error!!

also when we got the diagnoses..one of the first things i was told to do was get a trust. i wanted to do it early so hubby cold be involved. now when the time comes i can, with a short visit, change everything into my name and hubby will only be recieving his va and ss and that way he can qualify for some help .she also said that way i wouldnt be living in the streets when this was all said and done.. her hubby was a pow for many years and she was a weath of information and help for me

cindi

_________________
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..


Last edited by cdw on Fri Dec 31, 2010 11:13 am, edited 1 time in total.



Thu Dec 30, 2010 11:01 am
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