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 vietnam vet with lewy 
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Joined: Fri Jul 13, 2007 4:50 pm
Posts: 2
Location: Wisconsin
Post vietnam vet with lewy
My husband was diagnosed with probable Lewy body four years ago at age 59. I have been reading the posts on your forum and it seems most of the people with this disease are much older. He is seeing a neurologist and a geriatrics doctor. He is a Vietnam veteran and was diagnosed with PTSD before the lewy diagnosis.

I am interested in knowing if there are are Vietnam vets who have been given this diagnosis.

I am also interested in knowing if there are any research projects in our area.

Thanks for any insight or information.

Sharon


Sun Jan 03, 2010 11:30 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Sharon,
A risk factor for LBD is age so, yes, most are older. Was your husband exposed to Agent Orange? You are probably aware of all the recent activity associated with the VA covering those with PD who had Agent Orange exposure.
Robin


Sun Jan 03, 2010 1:40 pm
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Joined: Fri Jul 13, 2007 4:50 pm
Posts: 2
Location: Wisconsin
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Robin,
Thanks for your response. I have spent a lot of time today reading posts on this forum. I have learned a great deal, but I also have many questions. Some of the experiences seem similar to what I am dealing with, but many seem different. I am feeling very stressed right now, because I need to decide if I should retire from teaching and stay home with Dick full time. Four years into this and for the most part he is doing very well...I think. He has changed so much since this journey began, that sometimes I forget the Dick that was. He is still functioning and self sufficient, but there are times I know he just isn't there.

Dick was exposed to Agent Orange....he was infantry in the jungle. I believe that has a lot to do with what is happening to him now, and I would like to know more. The VA was helpful when all this first started, but they never diagnosed Parkinsons or LBD. The diagnosis was made by a neurologist at the hospital after I admitted him to a Psych ward. I would like other vets to know about LBD... the VA is not going to tell them. I think Dick is doing as well as he is because he was diagnosed early and started Excelon and Namenda early. His anxiety and delusions are non-existent at this time. Although his nightmares..night terrors I call them continue.

I am sorry I am rambling...there is just so much..and it is so unfair.
Thanks for listening
Sharon


Sun Jan 03, 2010 3:00 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Sharon,

Is there a VA care facility you can place your husband?

If at all possible, I'd encourage you to hang on to your job for both the benefits, income, and sanity (respite) it provides.

I'm sure every major PD organization has the new info about Agent Orange on their websites. I've posted some of the info here:
http://forum.psp.org/viewtopic.php?t=8186

I suggest you take your husband to one of the PD research centers that are part of the VA system, and ask if they think your husband may have PD or LBD. For a PADRECC near you, see:
http://www.parkinsons.va.gov/New_Front_Page.asp

Good luck,
Robin


Sun Jan 03, 2010 3:52 pm
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Joined: Fri Feb 06, 2009 9:25 pm
Posts: 69
Location: N Ala
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Sharon, my husband is a Nam Vet and was diagnosed with LBD over a year ago. He has had symptoms for 3 or 4 years. pop is 62 and was in Nam 68-69.
We thought that at this age we would be able to travel and do things but pop won't leave the house except to go to his Dr appointments. He is still able to take care of himself but we have trouble keeping up with his teeth, glasses and small things.
The VA is sending home health 6 hours a day 2 days a week to help me in the house and later to stay with pop for me to get out.
This is such a frustrating disease!
nanny


Tue Jan 05, 2010 1:46 am
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