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 Doc appointment tues, for evaluation for lewy.. 
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Doc appointment tues, for evaluation for lewy..
hi...
not sure we have lewy.. i know something is going on.. i had never heard of lewy until the doc mentioned it a few weeks back , at an appointment..when he mentioned the problems with the wrong meds.. if it was lewy, ive been reading up a storm.. and these diseases really intertwine and make it tough to know what is going on...??

we have had the memory problems, for maybe 10 years.. but had lots of stress going on at the same time. but as the stress reduced, the memory problems got worse.. he was diagnosed 3 years ago with probable alzhiemers. he lost his driver lic last year and hasnt worked in 2+ years... we have had a few times with hallucinations over the last few years but..in the last month.. they are every night.. some very angry, paranoid, scary and long lasting...and some just mentioning the folks in the house or people sitting at the table for dinner.. i havent seen any shaking or problems like that. BUT he was in vietnam and sprayed with agent orange, for over year!.

however i have seen some walking issues in the last two months.. getting up from watching tv and falling . saying his foot had gone to sleep.. his inability to get up from a stooping position.. needing to have help and walking any distance causes his legs to tire easy.. and he needs to sit down??!! also lots of muscles cramping, that we thought was the statins of high cholesterol.. but now i wonder.??. he has good days that are really good and he has days he just sits....people probably think im losing my mind.. cause that is not what they see,.. a neighbor has mentioned that he is missing expression in his face .. and seems to be not there!! and other days.. hes back...

i'm petrified of what we will find out on Tuesday, at the meeting with the neurologist ... when i read your stories.. my heart is breaking for each and everyone of you and your lo's

are there any suggestions of tests, or questions, or anything i should pay special attention to, on Tuesday ??? any advice, any thoughts, anything??? since its the va, it takes forever to get back in and i want to give as much info as i can, to get as many questions answered as possible..

thank you all again, so much for being here.. and im so glad i found 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 14, 2010 10:11 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3311
Location: Vermont
Post Re: Doc appointment tues, for evaluation for lewy..
Hi Cindi - I'd made a concise list of all the unusual behaviors, physical issues, etc. that you have noticed (and timeline if possible), and give the dr. a copy at the beginning of the appt. She/he can look through the list and perhaps gain some insight from seeing all the changes that have happened, and how long they've been going on. That was always a help when I did that with my dad and his dr.
Also, if your LO (is this your husband?) is still able to do "showtime" the things you write will be very helpful to let the dr. know what is REALLY happening. An ex. from my dad - he was telling his drs. that he still read 4 newspapers a day, even after the subscriptions had run out and he couldn't even HOLD a newspaper any longer. Until I corrected things like this at the end of the appt. without my dad there, the drs. thought he was just doing marvelously, and why was he even there?
We still don't know what all the diseases and conditions are that my dad has, and at this point it is no longer an issue. But, in the early stages, if it is LBD, there are meds and PT and other things that can help your LO for a while, so it is worth pursuing a diagnosis. As you can tell with many of the postings, people have had to go to mulitiple drs. to try to get an accurate diagnosis, and many of us never do get one! Don't be discouraged, just keep pushing for good drs. who can hopefully figure it out and figure out a plan to treat the symptoms for as long as possible.
Keep us posted on how it goes, and good luck to both of you. 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 14, 2010 10:26 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Doc appointment tues, for evaluation for lewy..
Another important issue with Dr appointments is having a doctor that will partner with you in the care of your LO, as mentioned earlier a timeline is very helpful and if you aren't already now would be a great time to start a daily journal because after awhile many things jumble together and it really helps looking back to when something perhaps started or a reaction to a medication.

Good Luck with the appointment!

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Irene Selak


Sun Nov 14, 2010 11:17 pm
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Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post Re: Doc appointment tues, for evaluation for lewy..
Hi Cindi. I suggest that you take a notebook with you and take notes during the appointment. If you think that you can't do that while still participating, perhaps there is someone else to take notes. In the beginning, there were often three of us in an appointment with a dr., my mother (the patient), myself, and my sister. The Dr. may ask for the chart notes from your loved one's primary care physician and the reports (or films) of any cat scans, MRI's or blood tests.

In WA State where we live, the VA doctors have the best reputation for Lewy Body specialists. I am told it is because they have the funding for dementia research.

Good luck to you and as Irene said, it is important to establish a relationship with the Dr. so that he/she becomes part of the team caring for your loved one. If you are introduced to the Dr.'s assistant, note that person's name and phone number or get a card from them. The assistant may become your link to the Dr.
Annie

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Annie, daughter of brave Marie, dx 2007 and in ALF


Sun Nov 14, 2010 11:33 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: Doc appointment tues, for evaluation for lewy..
thank you all so much... i do have a list/ time table, for them but never thought of a notebook while there, or a journal... GREAT ideas... yes it is my hubby, he is 65... we are also going to an outside doc for a second opinion in jan.. the notes and journal, and copies of what the va does will hopefully help there too .... not able to get a third person at this late, but maybe for the 2nd opinion....

again i appreciate your thoughts and ideas.. i'm so new at this and very scared.
thank you~~~
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..


Mon Nov 15, 2010 12:26 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3311
Location: Vermont
Post Re: Doc appointment tues, for evaluation for lewy..
I can only imagine how scary this is when you are dealing with a spouse, and a young one at that. You are lucky that you can transport him to the drs. appts. My dad became so incapacitated so fast that I was never able to get him to specialists in Baltimore or DC, and he lives where there are no geriatricians, no neurologists specializing in dementia, etc. Good luck Tues. Cindi. 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.


Mon Nov 15, 2010 12:35 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Doc appointment tues, for evaluation for lewy..
Perhaps you can take along a tape recorder to record the conversation.

As Annie mentioned, some VAs are excellent. Which VA are you going to on Tuesday?

You probably know that the VA recently designated Parkinson's Disease as a possible effect of Agent Orange exposure. (I probably didn't word that perfectly.) So veterans who have PD and have boots-on-the-ground Agent Orange exposure can receive benefits.

The VA in Reno is the center dedicated to this effort. See:
http://org2.democracyinaction.org/o/569 ... m_KEY=2312

To review the eligibility for benefits for those veterans who served in Vietnam from 1962 to 1975, see:
www.publichealth.va.gov/exposures/agent ... nefits.asp

I'd suggest you list the diagnostic criteria (found on lbda.org) and organize your list of symptoms and behaviors around that.

Is your husband taking Aricept, Exelon, and Razadyne for treatment of his dementia symptoms? Is he taking anything for the hallucinations?

Robin


Mon Nov 15, 2010 12:59 am
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Doc appointment tues, for evaluation for lewy..
Except for a yearly visit to the GP Frank only sees his geriatric psyc. We have a good relationship with him, the day before our visit I email him to let him know any changes since our last visit. He takes Frank in first and then Frank comes out and I go in. He goes over his conversation with Frank, sometimes I have to correct some of it and lets me know if he thinks we need to change or increase meds. He also encourages me to bring in more help to get out for a break.

Many times when I have had questions about Frank's meds or his actions I email him and within the hour I have an email back.

I've always kept a journal and thankful that I did, because my memory, oh, wait, what memory.

_________________
Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Mon Nov 15, 2010 7:42 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Doc appointment tues, for evaluation for lewy..
2 excellent points made by Robin, with the tape recorder, my daughter uses one in her classes and the other being that the VA is now listing PD for service related disabilities, not only will it help your LO but it will also create benefits for you down the road if I am not mistaken. We lived in FL during my husband's illness and we had excellent Doctors in the Tampa VA, I wish I had been able to get my husband in the St Pete VA as Dr Jonathan Steward is there but by the time I found him we were in latter stages of the illness.
Again Good luck!

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Irene Selak


Mon Nov 15, 2010 9:01 am
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: Doc appointment tues, for evaluation for lewy..
wow you guys are wonderful..

let see if can remember your questions...

we are going to the va in la jolla, california.. they are good with demetia and havea wonderful teaching college right across the street...at ucsd.. we have been once before three years ago.. that is where he was diagnosed, but because of the war expierance.. he is not a va fan.. but the hallucinations are concerning him when they happen, so i talked him into going back... fingers crossed! they also turned him in to the dmv.. which theyhad to when they diagonosed him..... and hes still VERY angry about that...

we are dealing with the va now, on benifts for pstd.. i read a few years back, if you can get them to open the door for ptsd, (which they have for us, a crack so far..) then they will also look at being responsible for early onset alzhiemers.. so that is that the path we are pursuing now for the ptsd and will wait and see what they come up with for a diagnoses, before looking at the pd.. the whole process of looking into getting these benifits have been very difficult for him and having to relive all of that, so i am now the fiducuary and can go to meetings without him and not have to bring back those horrible memories..

will get a small tape recorder today and a journal and note book.. and great ideas on the emailing before hand.. i will ask tuesday if that is possible....
well ive blabbered too much again... thank you sooo much for your insight and ideas... even tho i am still very scared of the outcome, i honestly dont feel quite as alone.. 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..


Mon Nov 15, 2010 12:35 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Doc appointment tues, for evaluation for lewy..
The not knowing is the hard part, Knowing you can at least deal with it !

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Irene Selak


Mon Nov 15, 2010 5:21 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: Doc appointment tues, for evaluation for lewy..
today was our appointment... the appointment was an consultation with a psychiatrist .. it was a two hour appointment.. i really liked her, she was very quick and competent!! !! she went back to the begining and had us tell stories on how we got here.. i mentioned the lewy body, the hallucinations and the muscle problems that were possible statin(?) caused or??.. she felt our story and his changes seemed more like alzhiemers...but she also felt that the hallucinations and the personality changes were a bit out of sync for alzhiemers... she felt he was missing some main traits of lewy,, the spacia/visual, the rigidty and the shuffle.. he didnt shuffle there, but he does at home. which i mentioned... he was pretty alert there today, for sure!! but she wants us to come back in 8 weeks and see how he is doing.. she gave him a small test (which he did better than usual on..) and felt he has definatley moved from mild dementia /possible alzhiemers, to very clearly alzhiemers... its been 2 years since we have been there and tested by them.... she ordered a low dose anziety /antidepresident( sorry cant remember the name right now, renuial?? it will be delivered in a few days) and renewd the the trazadone if needed...

so now what...??

do i accept this and just keep my eyes open for any changes?? and make sure he gets no scary meds that would really hurt him if it is lewy????

do i continue with the 2nd opinion, in jan or wait awhile longer??

thank you all so much, i knew so much more this week, than i did last,, i was able to understand and ask questions i wouldn't have known with out you.... it made this appointment so much easier.. and i knew you were there.. thank you!! for sharing your knowledge and for your good wishes and encouragement...

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 Nov 17, 2010 12:16 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Doc appointment tues, for evaluation for lewy..
Cindi -

Sounds like the psychiatrist you saw was on the ball. (Was it Michelle Banta, MD? I've heard her name before.) Glad that your suspicions about dementia generally were confirmed. Next time you go back, you might mention the "show time" that can occur in LBD. Or you might try to videotape your husband shuffling.

Who is the second opinion with? Do you mean the second appt with the same psychiatrist? I would definitely go back to see her.

UCSD has a terrific Alzheimer's Disease Research Center. I don't know much about that VA. Presumably they share some MDs.

There was an eye-opening article in the New York Times recently about the level of stress caregivers experience when the care recipient is a vet with PTSD on top of some other issue:
http://newoldage.blogs.nytimes.com/2010 ... -veterans/

If I haven't mentioned it before, are you familiar with the Southern Caregiver Resource Center that serves San Diego County? See:
http://caregivercenter.org/

It's a top-notch organization that is devoted to helping caregivers. We are lucky to have these centers throughout California.

Robin


Last edited by robin on Wed Nov 17, 2010 12:31 am, edited 1 time in total.



Wed Nov 17, 2010 12:27 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3311
Location: Vermont
Post Re: Doc appointment tues, for evaluation for lewy..
Cindi - with all the reading I've done on the Forum, all the people in the support groups I've belonged to, and my dad's situation, most health care professionals don't know squat about LBD. If I were you and my LO could go to an appt. with another dr., I'd certainly try to get another opinion. If you let people on here know where you live, there's bound to be someone on the Forum who can help direct you to a dr. who knows about LBD.
It sounds like your LO was big on showtime today. My dad was able to do that last summer and early fall. THen he got bad enough that he couldn't cover up anymore. It's important to let the dr. know what is actually happening since the showtime thing can go really "well" in the beginning.
I wish you 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.


Wed Nov 17, 2010 12:29 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Doc appointment tues, for evaluation for lewy..
Cindy,
To go for the second opinion really depends on how satisfied you are with this past apppointment, I am not a medical person at all and much of my thoughts are purely personal but when we were going through the ordeal of getting a DX and we had several prior to LBD non of them seemed to fit just right and I knew in my heart of hearts the DX'es were not right and I had to look futher. If it were me I would journal every day and as mentioned even videotape.

Good Luck!

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Irene Selak


Wed Nov 17, 2010 11:41 am
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