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!

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.

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

Terry, please, please consider following Jeanne's advise. Good luck.

Dorthea

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.

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.

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.

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.

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?

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.

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