View unanswered posts | View active topics It is currently Fri Sep 19, 2014 10:17 pm



Reply to topic  [ 11 posts ] 
 specialists recommendations please help!!! 
Author Message

Joined: Thu Dec 08, 2011 5:24 pm
Posts: 12
Post specialists recommendations please help!!!
Can anyone recommmend specialist in Lewy, my dad is in Lincoln, NE but we are willing to go where ever we need to to help him. We feel like the doctors here just want to medicate him to sedate him which may or may not be the best for him at this point? We just want to know we have done EVERYTHING for him b/c that is what he would do for us. Please help!


Wed Dec 21, 2011 11:04 am
Profile

Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: specialists recommendations please help!!!
One option is the Mayo Clinic. http://www.mayoclinic.com/health/lewy-body-dementia/DS00795 At the Minnesota location I highly recommend Dr. Brad Boeve.

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Wed Dec 21, 2011 12:05 pm
Profile

Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: specialists recommendations please help!!!
sorry, dont have any help here. as right now, we go to the VA... but just wanted to wish you strength and best wishes thru this difficult time..

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 Dec 21, 2011 12:41 pm
Profile

Joined: Sat Oct 06, 2007 4:28 pm
Posts: 736
Location: LA
Post Re: specialists recommendations please help!!!
Terry, please, please consider following Jeanne's advise. Good luck.

Dorthea

_________________
"See this lady she's 85 but she's nice" When I joined in 2007 this is the way Mr B. introduced me to the people only he knew,he added "You need to listen to her" he was 89 then, death due to Lewy Body Dementia/pneumonia in 2009.


Wed Dec 21, 2011 12:43 pm
Profile

Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: specialists recommendations please help!!!
Please go to the LBDA main page (click on the logo on this page) and under Professional click on the Comprehensive Approach article, by Brad Boeve. Or go directly to it here: http://www.lbda.org/node/205

I think you will find his approach a good indicator of his thoroughness in setting up a treatment plan.

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Wed Dec 21, 2011 1:32 pm
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: specialists recommendations please help!!!
I have two ideas for places/people to contact to get recommendations of Nebraska specialists on LBD:

Carol Nowka
Nowka at charter dot net
(We were on an LBDA committee together ages ago. If that email address doesn't work, contact the LBDA office in GA to see if they have updated contact info for her.)

Alzheimer's Association
You can find the nearest chapter in your area by going to alz.org.


Wed Dec 21, 2011 2:28 pm
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: specialists recommendations please help!!!
By doing a PubMed search on DLB and Nebraska -- to learn if anyone in Nebraska is publishing medical journal articles on DLB -- I came up with several names. This one looks particularly good:

Dr. William J. Burke
Dept of Psychiatry and Psychopharmacology Research Consortium
University of Nebraska Medical Center
Omaha, Nebraska
http://www.unmc.edu/prc/burke.htm

He published a paper 10 years ago on two DLB cases where the patient was sensitive to clozapine.


Wed Dec 21, 2011 2:34 pm
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: specialists recommendations please help!!!
One other place to ask is:

Parkinson's Center of Nebraska
Creighton University
Omaha, NE
www.parkinsonne.org

Their education coordinator is Lisa A. Brovold, labrovo AT creighton DOT edu. She might be able to offer suggestions for good LBD neurologists or psychiatrists in other parts of NE.


Wed Dec 21, 2011 2:37 pm
Profile

Joined: Thu Dec 08, 2011 5:24 pm
Posts: 12
Post Re: specialists recommendations please help!!!
You all are so helpful, thank you so much. I wish I could meet every one of you and hug your neck! I just saw my dad he is really, really bad, so hard to see him like this as you all know. They started him on clozapine to help relieve some of his discomfort with paranoia and hallucinations. Yesterday he was out of it all day, had really bad tremours would wake up screaming and crying he certainly wasn't peaceful or resting, it was my worst nightmare. It was like I was looking at the face of death, he looked to be in so much pain. Why doesn't anyone know about this disease? He is being followed by a psychiatrist in the hospital, I feel like that is not the right doctor? His neurologist he was using for his PD realsed him! They mentioned hospice care yesterday, do we keep trying or is it too late and we should just medicate to make him comfortable?


Thu Dec 22, 2011 11:54 am
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: specialists recommendations please help!!!
My two cents is that you keep trying to stabilize your dad...I don't think it's time for hospice yet. Hopefully the Clozaril (clozapine) will work.

Has he been checked for a UTI, other infection, or metabolic imbalance?

A psychiatrist is a perfectly fine MD to treat LB dementia.

Check out Dr. Brad Boeve's 2004 "Continuum" paper (on lbda.org - do a search) for a treatment regimen for LB dementia. Clozaril or Seroquel are the two antipsychotics preferred by most LBD experts. But they don't work in everyone, and can cause harm in some.


Thu Dec 22, 2011 1:58 pm
Profile

Joined: Sat Oct 06, 2007 4:28 pm
Posts: 736
Location: LA
Post Re: specialists recommendations please help!!!
Terry, a geriatric psychiatrist was wonderful for Mr Bobby [after he started following the Dr Boeve treatment plan]. He too, never made a definite clinical diagnoses but treated the symtoms. Just to let you know that it can be alright. The best plan is the plan that works.

Dorthea


Thu Dec 22, 2011 5:33 pm
Profile
Display posts from previous:  Sort by  
Reply to topic   [ 11 posts ] 

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group.
Designed by STSoftware for PTF.
Localized by MaĆ«l Soucaze © 2010 phpBB.fr