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 confused on diagnoses: lewy?? parkinsons?? both?? 
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post confused on diagnoses: lewy?? parkinsons?? both??
as i have mentioned before my hubby was in vietnam and sprayed with agent orange daily.. we have gone from an AD diagnoses 3 years ago, to now lewy body, 10 months ago. after last doc appointment , someone mentioned ( robin??) i need to get the doc to say exactly what he was calling this, to file a claim with the VA. dementia with lewy body or lewy body disease???

i called the doctor, i asked him what he was calling my hubbys diagnoses.. he said he was calling it dementia with lewy body VARIANT.. ut oh..?? not one of the names i was familiar with??? kinda close to, dementia with lb...???.. i mentioned about the agent orange/ the parkinsons tag to file?? then he went on to say, he has noted and mentioned many Parkinism's thru out his chart. the shuffling gait, the flat face look, some rigidity, the slow to start etc etc..

so im confused, he was rushing and i wasnt thinking fast enough to ask him.. so, im asking you guys... is this the beginning of parkinsons.. or??? is this just another part of the lb???
thank you again for your time ... and help!
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..


Thu Nov 17, 2011 11:07 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: confused on diagnoses: lewy?? parkinsons?? both??
Yes, it was me who suggested that you need to get the MD to give you a diagnosis and to suggest a diagnosis of "Parkinson's Disease Dementia." Did you ask the MD if he'd be comfortable with that diagnosis?

I've never heard of "dementia with lewy body VARIANT" I've heard of "Lewy body variant of Alzheimer's disease." Maybe you can get an ICD-9 code? (See: http://lbda.org/content/lbd-spectrum)

Can you ask the MD if he thinks your husband has a case covered by the Agent Orange "program"?

I'm sorry but I don't understand this question: "is this the beginning of parkinsons.. or??? is this just another part of the lb???"

You can make an argument that Lewy body dementia *is* Parkinson's Disease!


Thu Nov 17, 2011 11:19 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: confused on diagnoses: lewy?? parkinsons?? both??
I understand your confusion, Cindi. I find it confusing, too.

Dr. Lewy discovered, recorded, described, etc. clumps of protein in the autoposied brains of Parkinson patients about a hundred years ago. As I understand it, some people with these Lewy Bodies in their brains exhibit full fledged Parkinson's disease (PD). Some exhibit Parkinsons and also dementia symptoms (PDD). In some, the dementia symptoms appear first and strongest and the Parkinson symptoms come later and may be less pronounced (DLB). These three different combinations are given different names, but they all involve the clumps named for Dr. Lewy.

If Agent Orange can cause one of these conditions I think it is absurd to claim it can't cause the others. I personally would have no ethical qualms in asking the doctor to present the diagnosis in a way most favorable to your claim. I would not ask him to lie (and he probably would not agree to), but if there are various ways to present the truth as he knows it, it ought to be presented to benefit the victim.

Is this the beginning of Parkinsons? Well, the Parkinson characteristics might become more pronounced, but since your husband has dementia I would think the name choices are Parkinsons with Dementia or Dementia with Lewy Bodies.

Sigh. Personally I think the confusing array of names is just a historical accident. If Lewy had had in his research bank brains of Parkinsons victims with and without dementia, some of whose dementia came first and some who developed Parkinsons first, we would not be thinking of them as three separate diseases today.

Good luck to 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


Fri Nov 18, 2011 1:14 am
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: confused on diagnoses: lewy?? parkinsons?? both??
thank you both, so much ,,,

robin.. the doc works for the va and i'm not sure how much he can offer suggestions towards filing a claim??? as far as the question about parkinsons, up till now i knew we had been watching for signs of parkinsons.. but the small things i have noticed, didnt seem conclusive, but to hear him say he has been writing it down parkinisims for the past two and and noticing a decline.. was a surprise and had never been mentioned up till now?? so i wondered was this a start of parkinsons?? or just another side effect of lb??

jeanne.. thank you.. i always appreciate your comments.. you appear so level headed and calm... and comforting at the same time, thank you!! i agree if agent orange can cause one of these conditions, how can it not be responsible for all?? i believe robin mentioned at autopsy, its all one disease....

not sure va is going to see it that way... BUT...??? the va is rough.. which is horrible!!!. for these men and women who have given so much and then to have to fight and relive the atrocities to get help later.. is flat out crazy.. but it sounds like its worth a shot, to try and get him, what he deserves.. thank you both!! i will keep good notes and let everyone know how it goes, it might help others, in the future!!

again thank you!!!

_________________
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..


Fri Nov 18, 2011 11:16 am
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: confused on diagnoses: lewy?? parkinsons?? both??
Parkinsonism is typically (but not always) part of Dementia with Lewy Bodies. Parkinsonism is always part of Parkinson's Disease Dementia.

Can you find someone at the VA who can explain these terms to you? (parkinsonism, Parkinson's Disease, Dementia with Lewy Bodies, Parkinson's Disease Dementia) And, more importantly, help you determine if you can file an Agent Orange claim?


Fri Nov 18, 2011 4:24 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: confused on diagnoses: lewy?? parkinsons?? both??
robin.. we have a an appointment in feb.. and i'll definitely ask more questions at that time... i think im beginging to understand better the terms, but there seems to be such a fine line between them.. if i wasnt going to file a claim, i think what ever was was.. and i'd just ride with the punches.. but i dont want to put hubby thru all of this, if its not even vaguely, a possibility. in talking to the gal at the va, you recommended, it sounded as though if it wasnt parkinsons. or pdd... dont waste your time.

but in reading and reading.. i keep seeing more and more places, that the line is not drawn quite so strongly as the VA's. there is lot more blurring !! i do have a claim now and on it i'm doing all the work and have taken over for hubby, when ever i can.. so i might just go for it !!!

it would mean a lot in the over all care he will receive later on and how much the va participates in that care!! its worth the time spent, if i can get him that help.. just want to go in knowledgeably and with enough info to back my claim..

there are veterans advocates, who work in the va building, but not for the va... and there are willing to help.. i didnt like the last guy.. , he started filing this and that.. that wasnt even close to what i was asking, it made me uncomfortable. it was like throw in everything and see what sticks?? i dont want to ask for anything that isnt right and i especially dont want to muddy the water on the claim on ptsd, that we already have going ..

again thanks robin for your time an help

_________________
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..


Fri Nov 18, 2011 8:32 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: confused on diagnoses: lewy?? parkinsons?? both??
I think that was what I had said to you in email as well: "If the MD can't say it's Parkinson's Disease, Lewy Body Disease, or PDD, don't bother." The ICD-9 codes would resolve immediately exactly *what* disorders the MD thinks your husband is dealing with.


Fri Nov 18, 2011 9:39 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: confused on diagnoses: lewy?? parkinsons?? both??
we have an appointment in feb. i'll take your post with me, if thats, ok??

i might go ahead and file the claim,( if i can get in).. since it takes such a long time to get a response .. and by then i might know more...

thanks again...

_________________
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..


Fri Nov 18, 2011 11:46 pm
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