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 LDB and VA benefits - any advice? 
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Joined: Fri Mar 08, 2013 10:15 pm
Posts: 2
Post LDB and VA benefits - any advice?
Hello All,
I am new to this forum but very glad it is here.

I am caring for my Dad who has LDB. Looking back, I think it may have begun many years ago, but we did not recognize it until about 18 months ago. First he was diagnosed with Alzheimer's, the Front-Temporal and now LBD. I believe we've finally found the right diagnosis.

My Dad is currently living independently about 2 miles from me and my family, but I am not sure how long this will last. We have taken some precautions and limited his ability to injure himself, but I am seeing some signs of deterioration with the ADLs. He has had some rapid but subtle deterioration in cognitive functions and mobility in just the past 2 months.

He is a Vietnam Vet and was definitely exposed to Agent Orange while there. He is getting all his care now though the VA and I have been very impressed with them. I am awaiting paperwork to apply for whatever benefits may be due to him through the VA and understand that there should be some (A&A?) since Parkinson's is a recognized disease caused by Agent Orange. I am hopeful that by using the ICD-9 codes (referenced here http://www.lbda.org/content/lbd-spectrum) and with the support of his doctors that this process will go smoothly.

I would be very grateful for any advice or information about this process or in dealing with the VA in general. We live in New York and have been dealing with the Albany VA. As I say, so far our experience has been very good.

Thanks in advance for any help.

Best,
Jenn


Sat Mar 09, 2013 10:47 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: LDB and VA benefits - any advice?
hi jenn...

i agree the medical care for my hubby thru the va has been superb..how ever fighting for benefits has been a looooooooooooooong drawn out process!!! very aggravating to say the least!! my hubby was in vietnam, and sprayed on daily with agent orange.... he has ptsd, feet problems from the waters he had to walk in daily and he has lewy body and signs of parkinsons... we have been fighting for benefits for years and have appealed and are still appealing on the ptsd.. and lewy body.. if your dad has been diagnosed with parkinsons, he shouldn't have any problem getting benefits.. most of the folks i have spoken to have 100% or better!! but lots are still waiting after years of filling some have only been given 30% -40% and are still fighting to get what is fairly due them..

there is a group, on the internet that i follow, that is made up of all the folks that took that parkinsons claim and got it passed thru the VA, a few years back... they were very disappointed that many of the parkinson related diseases were turned down like lewy body.... if you have parkinsons and the lewy body comes second it will be recognized by the va ..as parkinsons related dementia.. but if the lewy body comes first, it will be turned down by the va.. altho i have co responded with many wives who have had the docs, say it was parkinsons and they got it thru.. or one used lewy body parkinsons disease.. how ever i cant get any of the docs out here to agree that they are related close enough, to get benefits... with out a parkinsons diagnoses... im still trying an contacting as many as i can and sending all the info i can find to the va to try and get them to agree.. but i believe its going to take a change thru the institute of medicine.. that va takes its guidelines from.. i understand they will be giving further guidelines, in a few years.. but not sure if anything with lewy body will be addressed.

good luck .. hope some of this was helpful.. will be watching to hear how you do... wishing you 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..


Sun Mar 10, 2013 4:41 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: LDB and VA benefits - any advice?
Not sure if this link will help any, I hope so !

http://www.veteranaid.org/

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Irene Selak


Mon Mar 11, 2013 8:15 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3363
Location: Vermont
Post Re: LDB and VA benefits - any advice?
I hope things work out for you with the VA. For some reason VA benefits seem to vary state to state and they have also apparently changed in the last few years so make sure you get current info. from VA professionals in the state your LO lives in. I have heard that they have drastically reduced, AKA, cut out A&A funding, but that may just be in VT. Seems like if you served in the US Armed Services the benefits should be the same anywhere in the US but they aren't. Hope all goes well. 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 Mar 11, 2013 9:30 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: LDB and VA benefits - any advice?
Dear Lynn,
Not only are the services not the same from state to state same goes for supplies too.
I remember someone from out west was getting the pull up's for thier hubby and I couldn't get them in FL, they tried to order them but we never were able to get them !

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Irene Selak


Tue Mar 12, 2013 11:24 am
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Joined: Fri Mar 08, 2013 10:15 pm
Posts: 2
Post Re: LDB and VA benefits - any advice?
Hi there,
Thanks to you all for inout and advice. My dad's diagnosis has been revised/clarified to be Parkinsons Plus (or PPD). I'm hopeful, but a bit doubtful that he may qualify for Agent Orange benefits.

Wondering if anyone has any advice, resources or input to share on this.

Thanks in advance,
Jenn


Thu Jun 13, 2013 5:05 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3363
Location: Vermont
Post Re: LDB and VA benefits - any advice?
Hi Jenn- what specific things are you looking for info. and advice on at this point? Do you have a knowledgeable person who works for the VA with whom you have good rapport? Have you spoken with several different VA folks? I found that different VA staff gave me different info. so it was helpful to talk with several people. Does he have a good memory care dr. who is knowledgeable about LBD? 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.


Sat Jun 15, 2013 6:38 am
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: LDB and VA benefits - any advice?
a few folks on here have gotten VA benefits with parkinsons... i ve talked to a few that have gotten benefits with lbd.. try as i may, i just cant get them to accept the lbd... they are waiting for clarity from the iom.

BUT>>>we just got a 100% on ptsd, after a 6 year struggle.. and im going to continue to keep trying on the lbd... it wont make any difference in benefits for us, but it might be helpful for someone else and i truly believe, the parkinsons and lbd have a much closer link than the va is willing to admit... how can you say agent orange is the culprit in parkinsons but not in lbd....??? too many similarities.. and too much unknown.. plus its up to the VA to prove it hasnt happened and and i dont think there is enough info to prove that(, either way..) so my goal is to get them to accept lbd...

the the iom makes yearly (or so), new rulings, depending on what they learn.. but it doesn't feel right, that some are getting it, depending on the doc's belief in that area, or how it is written and others are being turned down.

there are many studies that prove that the folks with ptsd, have a much greater chance of getting dementia... but they wont pay on dementia either and many folks that were sprayed with AO.. have come down with dementia....

so i will keep fighting.. and hoping to help them see the light...

i know some folks have gotten attorneys, gone to their congress men... and many different ways to get what is due .. i went to the person at the va that is the representative for, the vets.. and i used the internet and sent page after page of info, proving my point on the ptsd and even tho it was a struggle and took 6 years and paper 4 feet high, and turned down 5 times with me appealing each time.. WE MADE IT!!!!... so go for it.. and good luck!! let us know how you are doing!! and how it goes with using the pdd...
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..


Sat Jun 15, 2013 9:57 pm
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