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 Searching for Diagnosis 
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Joined: Sun Nov 11, 2012 11:34 am
Posts: 10
Post Searching for Diagnosis
My name is Bonnie (caregiver) and my husband is Chuck (patient). Chuck is a 100% permament disabled Viet Nam vet with Post Traumatic Stress Disorder and several war wound injurites (he was awarded 3 Purple Hearts). Within the last 12 months my husband has gone from being active (as much as his body would let him) and bright to being droopy and confused with tremors and shaking. We started noticing physical and processing problems this past spring and told his primary care doctor at the Veteran's Hospital. His primary doctor seemed to pass these new problems off as being caused by past issues. I could tell they were different but the doctor seems to be irritated that I would questions him. Finally he ordered testing. My husband has been seen by a psychiatrist, psychologist, neuro-psychiatrist and a neutologist. He has had a CT scan and EEG but no MRI. We have repeated asked for a diagnosis but have been told "we don't know." Many of his symptoms match LBD so I want to learn as much as possible about possible answers. Thank you for letting me joing.

Sun Nov 11, 2012 5:07 pm

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Searching for Diagnosis
We're glad to have you aboard, Bonnie! I hope you read all the information on the LBDA web site for a start [if you haven't already]. They update it often. As another new member has noted, it is, indeed, frustrating to have no diagnosis when we are desperately searching for answers and treatment options. God bless!

Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.

Sun Nov 11, 2012 6:51 pm

Joined: Fri Nov 05, 2010 11:30 pm
Posts: 318
Location: southern cali
Post Re: Searching for Diagnosis
hi bonnie..

so sorry for what you and your hubby are going thru..

my hubby was in vietnam as well and has ptsd, depression, and been diagnosed with lewy body..( after 3 years of being diag. with alzhiemers ) and has been showing some signs of parkinsons... has any one mentioned parkinsons to you..?? the dementia can come before or after the diagnoses.. sadly, a lot of the guys that were sprayed with agent orange have been having these problems.. so it might be something to consider asking about.

i hope you find some answers quickly.. please look around and see if any of the signs and info sound like, what your husband might be going thru.... it helps so much to be armed with knowledge when going to bat for your husband...

i found the folks are here to be lifesavers.... on this journey...

best of luck to 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..

Sun Nov 11, 2012 9:55 pm

Joined: Sun Jun 24, 2007 5:35 pm
Posts: 349
Post Re: Searching for Diagnosis
Welcome, Bonnie.
I want to encourage you to keep searching for a doctor who can define what is going on AND offer some hope of treatment possibilities. Also do not settle for a doctor who dismisses you as your husband's caregiver. You deserve to be respected and listened to. Doctors with god complexes should be avoided. They are likely to be ignorant of LBD (I think this disease humbles them as well as us). You may want to try a university hospital clinic.

My husband John was diagnosed with LBD in 2007, but it took us 12 doctors to find a correct diagnosis and compassionate treatment. It was worth the journey. His symptoms are being addressed and, though he is showing clear progression of LBD, he is still doing fairly well. The right neurologist at UNC gave us our lives back for a long season.

If your husband does get an LBD diagnosis, you may also want to connect with a forum for LBD spouses at this link:

Take care,
Pat Snyder

Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url][/url]

Tue Nov 13, 2012 8:06 pm

Joined: Sun Nov 11, 2012 11:34 am
Posts: 10
Post Re: Searching for Diagnosis
Thank you all for welcoming me. Sounds like so many of us are in the same boat, but the boat keeps changing from a luxury liner to a row boat and then to a tug boat. I am thankful to find so much information and I plan on speaking strongly to his primary VA doctor. I can tell now that he needs to be more pro-active in finding a treatment plan. I also think I need to be very careful about the upcoming surgery they have planned for his shoulder, it might cause more harm than good. Thanks again and I will be on here lots !!

Tue Nov 13, 2012 11:00 pm

Joined: Tue Apr 24, 2012 5:00 pm
Posts: 78
Location: Fayetteville, NC
Post Re: Searching for Diagnosis
Ask the VA folks about Parkinsons treatment centers? I know there's something called PADRECC (sorry, I'm not sure what the acronym stands for exactly, but it's for Parkinson's research) at the Richmond, Virginia VA, for example. I'm not sure if that would help, but definitely you could see if there's anything near you and maybe ask about a consult. I was fortunate in that my outside primary care neurologist became a VA-contracted and then full-time VA neurologist. He has always been a kind, caring and knowledgeable port in this storm for us. Several years ago (with the full support of my VA neurologist who always said he welcomed us exploring all of our options so we could learn of new things that may help) I also emailed and then received appointments to the Jacksonville, Florida Mayo Clinic. The Jacksonville Mayo Clinic enrolled Ted into an Alzheimer's study. Between our kind VA neurologist and their care, we were able to get better treatment plans and some better days for Ted. Now, I still struggle with having to educate a myriad of physicians and other care givers on what Ted has, but those two entities have been such a blessing to us in this whole journey. I have reached for their lifelines more than I can count. It's unfortunate that we also must suffer the providers who do not listen to our concerns. Keep on questioning and know that you are doing the right thing.

Wed Nov 14, 2012 5:59 am

Joined: Sun Nov 11, 2012 11:34 am
Posts: 10
Post Re: Searching for Diagnosis
The VA has scheduled a second appointment with the neurologist, the first week in January. My husband is also going for additional blood testing. I am hoping there is a better diagnosis coming, something we can start to "treat." My husband gets very confused at times and at other times he is either rigid or shaking. He as always been easy-going but not knowing what is happening is really starting to get to him. I have done lots of on-line research but I haven't told him what all I have found since we don't have a diagnosis. Any suggestions on how much I should tell him?

Wed Nov 21, 2012 8:24 pm

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Searching for Diagnosis
I would like to welcome you to the LBDA forums, I am sorry for your need to join us but glad you found the forum.

As to tests for LBD , there really are none, most test help eleminate others things that could be a possible, if it were me I would mention LBD, I am not sure of your location but there is a Dr Stuart in the St Petersburg FL VA who has done a lot of work with LBD patients.e visit the

Good Luck !

Irene Selak

Sun Nov 25, 2012 4:31 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: Searching for Diagnosis
Bonnie - I used to say to my dad when he'd get upset and say "well, what's wrong with me. Why is such-and-such happening?" I'd just say " There's something going on in your brain and I'm working very hard with the doctors to find out what is going on and to get help for you." That would calm him down (at least for a little while). If I'd told him that he had a possible diagnosis of LBD, FTD, whatever, that would have just upset him. Reassuring him that people were trying to help him made him feel a little better. Perhaps something like this will work for your LO. 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.

Sun Nov 25, 2012 6:38 pm

Joined: Sun Nov 11, 2012 11:34 am
Posts: 10
Post Re: Searching for Diagnosis
Thanks for all the welcomes and suggestions. Chuck has started talking to me about hallucinations, he is beginning to accept that he has to depend on me more and that's a good thing, I think. It isn't easy for him to ask for help, especially me, since he has always been the stronger one. He keeps apologizing for the way he is. I tell him it isn't his fault and that we will tackle it together. I think we are closer to each other emotionally then we have been before, I like that at least. We have only had one good day in the past week, looking forward to more soon.

Sun Nov 25, 2012 11:30 pm
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