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 Doc appointment tues, for evaluation for lewy.. 
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Doc appointment tues, for evaluation for lewy..
Ideally, they would be kept under close observation night and day for about a week by trained professionals and THEN the neuros could take a stab at a diagnosis.

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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.


Wed Nov 17, 2010 11:51 am
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 318
Location: southern cali
Post Re: Doc appointment tues, for evaluation for lewy..
robin.. wow you are just a wonderful source of info.. i hadnt heard of the caregivers place here .. many were in san diego but there was one in fallbrook, which is much closer for me, that i will check out..

yes, having ptsd does add to the mix.. over the years he has always shown no emotion.. period. well now it sure is bubbling out all over the place.. some is good (laughter and enjoyment..) some not so good (anger and paranoia and inappropriate behavior and comments)

the doctors name was jeanne maglione.. young, wise and picks up quickly.. very personable and thinks out loud and shares her thinking with you!!!

the second opinion is with a nueroligist in encinitas.. he spoke at alzhiemer meeting a few years back and i was very impressed. every one raved about him and i really felt he cared and was VERY sharp and in touch with what is going on..... his name is dr lobatz.
thank you for your information and your willingness to share, so much!!

lynn, i think hubby has doing lots better in recent weeks, from if nothing else, the trazadone.. i have felt a lot of his sitting and staring was from depression.. and just in three weeks, a lot of that has lifted and given him a different look on things... im hoping the new meds will offer the same benefit!! thank you for your thoughts...

irene there is a long time between now and the appointment on the 18 of jan. i think i might wait till we are a bit closer and just see whats happening then.. i did like the lady at the va.. but if i can get the paper work to take with me and not take too much for the new docs time.. i think a second opinion might be good... thanks for your good wishes... and yes i am journaling..

yes it would be nice to have them view the patient for longer than a few minutes.. but unless hospitalized, not sure how to have that happen..

thanks again every one.. i cant tell you how much difference it made in my appointment .. with all the knowledge you have shared.. i hope i can help and encourage others as you have me..

_________________
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 5:32 pm
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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..
Thanks for the name of the highly recommended MD!

Speaking of Fallbrook, I handled a brain donation case there a few months ago. There's one local funeral home that is extremely cooperative with this. Have you discussed this with your husband at all? Or is this something you are planning to pursue? (Unfortunately, the VA doesn't have a brain bank! I still find that so hard to believe.)

I'd go ahead and see the second opinion neurologist, especially since you were impressed with him.


Wed Nov 17, 2010 6:49 pm
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Joined: Tue Aug 17, 2010 9:20 am
Posts: 184
Location: So Cal
Post Re: Doc appointment tues, for evaluation for lewy..
Cindi and Robin,
Here in San Diego you can call the Shiley-Marcus Alzheimer's research Center (just across the street from the VA, thru UCSD) regarding brain donation. I'm guessing you'll have to have an assessment appointment but may be worth the effort, they have clinical trials also and during the assessment you may get that 2nd opinion. The director is Dr. Douglas Galasko who is also the chief Neurologist at the VA hospital. He is the first who told us he believed Ken had LBD. In the least you will have more info and input from professionals regarding the difference in the dementias. It is all free, they'll even buy you lunch on the long appointment days, lol. As with everything it takes a while to get an appointment so I'd make that initial visit appointment if I were you, even if you decide later not to keep it. Good luck, Sher

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Sher (53) married 29 years to Ken (66) who was diagnosed with LBD in 2008, but it most likely began many years before.


Thu Nov 18, 2010 5:53 am
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: Doc appointment tues, for evaluation for lewy..
Cindi, trust your inner voice that tells you when you have made the right connection with the right doctors.

It sounds like you cannot go wrong seeking other opinions at this point. I would not burn any bridges with any doctors, but still seek out who may offer you and your husband the most support and help.

If it is LBD, the earlier interventions happen, the better.

Taking other family members with us to neurologist appts has been very helpful for us. Our son takes notes on his computer, so I can focus on the doctor's questions and comments and give him needed followup info. All of us give the doctor feedback as needed. More voices can act as a counterpoint to "showtime" as well.

John's doctor always has me fill out a caregiver status report to fill out that lets him know where John has remained stable, improved, or had more problems.

I always request a copy of the doctor's written report of the visit. It is helpful to see what is said and can also allow you to identify any item the doctor might have misheard that could alter his diagnosis or treatment choices.

Make sure you feel "heard" as the caregiver.

My thoughts and prayers are with you, Cindi.

PatS

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Fri Dec 03, 2010 9:02 pm
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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..
PatS,

What a good idea to have your son take notes! I'm sure he feels like he's part of the team.

And your husband's MD sounds wonderful! Can you remind us where Dr. Kaufer practices?

Robin


Sat Dec 04, 2010 4:58 pm
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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,

I saw this book recommendation today and thought of your husband with PTSD:

"A really good reference on the physiological process(s) of PTSD (as well as all the neuropsych) is: 'The Body Bears the Burden' by Robert C. Scaer, MD, whose primary emphasis is civilian trauma research."

Robin


Thu Dec 23, 2010 8:31 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 318
Location: southern cali
Post Re: Doc appointment tues, for evaluation for lewy..
thank you robin..

i really appreciate it... he has controlled his emotions/ feelings for over 40 some years.. by being shut down an flattened completley!! now he cant any more , they are bubbling up all over... this kind gentle man.. is untrusting, paranoid, angry etc etc.. not sure what is the dementia and what is the ptsd...
i will look this up and order right away.. thank you again, i can use all the info and help i can get!!

merry christmas!!
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 Dec 23, 2010 8:42 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Doc appointment tues, for evaluation for lewy..
Daniel Kaufer, M.D.
Associate Professor of Neurology
Director, UNC Memory Disorders Program
University of North Carolina at Chapel Hill
Chapel Hill, N.C., USA

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Irene Selak


Thu Dec 23, 2010 10:18 pm
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Joined: Tue Nov 23, 2010 12:20 am
Posts: 31
Location: Outer Banks, NC
Post Re: Doc appointment tues, for evaluation for lewy..
Hi Cindi, since I am new, many of my unread posts are not current. I just read of your appt with the psychiatrist in Nov. Since we are in the middle of the holidays, you might want to read this post in Jan. It is long and just contains some things to think about before your appt. I found this info helpful before we went for our follow-up after the neuro mentioned possible AD, PDD, and LBD. I know that you are also struggling with possible ptsd, this just isolates info on these 3 diseases. Even if you have read the continuum, this might be a good refresher.
You wrote:

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 spacial/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...
That made me remember the comparison of LBD, PDD, and AD in Boeve's Continuum (link found in resources):
http://www.lbda.org/feature/1347/diagno ... bodies.htm
which I read when trying to determine which seemed most like my mom's symptoms. What struck me was this:

...according to the CDLB criteria, the diagnosis of DLB cannot be applied to those who develop dementia greater than 1 year after the onset of parkinsonism. In other words, the diagnosis of DLB is appropriate for those who have visual hallucinations and/or fluctuations and develop parkinsonism (1) at any point after the onset of dementia, or (2) no more than 1 year before the onset of dementia; the term PDD is appropriate for those who develop dementia more than 1 year after the onset of parkinsonsim.
If I am reading this correctly, your husband could develop parkinson's symptoms "at any time" after the onset of dementia. That's scary; it seems that all dementia patients should be evaluated for a longer period of time in case parkinsonism just hasn't presented itself yet.
At least your doctor took a "come back in 8 weeks" approach which allows for dxs other than AD.
As for AD, the article stresses that:

The timing of the onset of visual hallucinations may also be important, as patients with DLB tend to experience visual hallucinations early in the disease course, whereas patients with AD tend to experience them late in the disease course.
Also, the dementia plus RBD group had worse impairment on measures of attention, visual-perceptual organization, and letter fluency, while the AD group had significantly worse performance on confrontation naming and verbal memory (Ferman et al, 1999).
Therefore, in the absence of visual hallucinations or parkinsonism, the presentation of dementia and RBD may indicate underlying Lewy body disease. Some authorities view cases with AD and LBD pathology not as two distinct pathophysiologic processes but as related processes;... this view has fostered the term Lewy body variant of Alzheimer’s disease (Hansen and Samuel, 1997), although it has been disputed (Dickson, 1990).


I think that I know first hand the damage that the wrong medication can do if your husband's dementia is connected to LBD. Before my mom was diagnosed with LBD, we missed her 6 mos followup for dementia with the neuro because she was in the hospital for a cardiac arrest. While there, she was treated for hallucinations and extreme agitation with haldol and risperadol. She has not walked since entering the hospital and her Parkinson's symptoms which we had just started seeing were off the chart. I have to wonder if those meds caused "irreversible Parkinsonism" that she now lives with daily.
Sorry to be so long winded about this, but I thought this might help as you prepare for your next appts.
Good Luck in the new year!
Debbie


All quotes are from: Continuum - Dementia with Lewy Bodies, 2004
By Bradley F. Boeve, MD

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Debbie 57 daughter of Evelyn 82
When you get to the end of the rope, tie a knot in it and hang on!


Fri Dec 24, 2010 1:09 am
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 318
Location: southern cali
Post Re: Doc appointment tues, for evaluation for lewy..
wow thank you debbie...

as much as ive wanted to read Boeve's Continuum .. so far its been in bits and pieces .. hoping after the holiday to really sit down and read.. thank you so much for taking the time to do this..

the hallucinations and delusions.. happened pretty early on our trian trip two years ago and then stopped till a few months ago.. then happened again.. till we got the trazadone and have been very mild since.. almost non exsistant.. so that paragraph scares me..

since he was in vietnam and sprayed daily with agent orange.. the parkinsons is a huge possibility.. so i am definatley keeping my eyes open and trying to look at all possibilties..
the memory problems are increasing.. and he is having problems with words. using different words and a hard time finding the right ones.. waaaaaay more often...

she gave him a new med to replace the trazadone and i dont think its a good .. so something we need to talk about in jan.. they are also changing his blood pressure meds right now, so he can get on a memory helping drug.. so we'll see how tha goes too.. he hasnt been on anything since they took him off arricept 2 years back!!

any how i wanted to thank you, so much, for taking the time to share ...

hope you have wonderful christmas!!

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..


Fri Dec 24, 2010 11:28 am
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Joined: Tue Nov 23, 2010 12:20 am
Posts: 31
Location: Outer Banks, NC
Post Re: Doc appointment tues, for evaluation for lewy..
You're so welcome Cindi
It took me awhile to get through the continuum, too. But I was so focused on trying to determine the differences between the 3 possibilities that I took good notes. I'm glad if it helps you as you prepare for your appt.

The whole agent orange factor is a real fly in the ointment for diagnosis, but as I'm realizing, there are so many variants of each disease that it's easy to find symptoms in our loved ones for each one. Meds are my biggest concern since the hospital; I don't want her unwittingly to get the wrong thing. Hospice wanted to try haldol for her delusions and without this website, I would never have known of its potential problems for lbd.
Hope you and yours have a restful and peaceful holiday!!
Debbie

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Debbie 57 daughter of Evelyn 82
When you get to the end of the rope, tie a knot in it and hang on!


Fri Dec 24, 2010 12:09 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 318
Location: southern cali
Post Re: Doc appointment tues, for evaluation for lewy..
well yesterday was the day.. we met with the new doc i had heard speaking at the Alzheimers asc. he is everything a doc should be.. caring, knowledgeable , listens well and is comforting and smart!!

he asked so many good questions and took his time and made hubby feel so comfortable....

right before we got the we took a short walk as it was a beautiful sunny day and we were early.. and just as we got back to the car.. he grabbed the door for support and went down.. thank goodness it hadn't happened i minute earlier.. he leg just went numb .. so i was able to tell the doc of that and all my notes and concerns..

the doc did some rigidity tests and well as the mini cog tests and a fe others.. yesterday was a really good day, for hubby.. but i think he got a 16 on the test, which i read online, was moderate alzhiemers..

the doc felt at this point he could not rule out lewy.. as he noticed some tremors as well.. but he didnt feel he had enough info yet, to change the diagnoses from ad.. but he wants me to bring in all the paper work from the va and the mri and the test results from 3 years ago that started this diagnoses and we can meet again in a few weeks and he can be more clear about what is happening!!

for any one looking for a referral, his name is dr micheal lobatz, he works in the neurology center in encinitas, cal and their phone number is 760-942 1390
at the Alzheimer meeting, he gets unbelievable raves and reviews and everyone there that has been his patient/ caregiver.. cant say enough good things.. he will be speaking at the meeting next week again and normally its standing room only with 100's of folks to hear .. i do plan to attend that too!!

thanks for all the good suggestions , you all have offered. i was really prepared for this appointment .. and it was mainly because of this forum and all your kind sharing of info .. that made that happen
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..


Sat Jan 15, 2011 1:24 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Doc appointment tues, for evaluation for lewy..
How wonderful to find a great doctor!

_________________
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.


Sat Jan 15, 2011 1:28 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Doc appointment tues, for evaluation for lewy..
I'm glad for you, Cindi. Nothing makes living with any form of dementia easy. But it is a great comfort and help to hook up with medical professionals you can have confidence in!

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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


Sat Jan 15, 2011 1:49 pm
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