National Neurological Diseases Surveillance System Act

Great news! Congress has heard your requests and the House of Representatives unanimously passed H.R. 1362, the National Neurological Diseases Surveillance System Act! This system will provide researchers and epidemiologists with a coordinated system of health data on neurological diseases and should fuel further research into neurological disorders like LBD. To make this data system a reality, the Senate must now take action on S. 1273. Please urge your Senators to support Senate passage of S. 1273 this Congress. Click here to tell Congress about LBD today!


My response to: Anyone have experience with Psychiatrists being used for LBD patient?

I received this email this morning from My response follows this copy of the email.

Anyone have experience with Psychiatrists being used for LBD patient   Posted by: "drh488" Wed Nov 18, 2009 3:17 pm (PST)

Today we had a Psychiatric nurse visit Mom. By the time she left, she had my mother so emotionally upset that she is ready to go back to a nursing home and die. She brought up things to my mother that happened 30 years ago and hasn’t been discussed in 20 years. Our battle with the outside caregivers has turned into a social worker telling us that WE have become Lewy body dementia. Our extreme efforts to make people understand the disease has taken the place of taking care our mother. Our mother does best when she has structured days. Up at 6, breakfast at 8, regis at 9, lunch at noon….etc. Anything out of that structure causes problems with her. This company sends occ. therapy, phys therapy, and a nurse. We have explained time and time again that our Mom needs structure. To no avail we wont here from them for 3-4 days then they call saying "We are on our way". Next thing you know, 3 people in one day unexpected. My sister is so frustrated. Psych nurse told my Mom that she has LBD, what it is and everything. Brought up old memories of my sister dying, my dad dying. Then she leaves with my mom all upset and my sister to deal with it. Psych nurse wont be back for 2 weeks. I’m calling my Mom’s neurologist tomorrow to see if she should be talking to this psycho nurse…no pun intended….It seems to me that it is more destructive than constructive.  Interested if anyone has had similar experiences Thank You

I felt appalled as I read this post. It goes to show that not all educated individuals use good old fashioned common sense. Even a small child realizes something isn’t right when they see someone being hurt and being in distress.

As an aside, I should mention that dementia is not only a neurological diagnosis but is also an official psychiatric diagnosis.

Unfortunately, in spite of being taught to first DO NO HARM to a patient, medical professionals don’t always have good common sense either. One doesn’t always learn certain things from medical, psychology and nursing books.

Having said this, there is not excuse for someone to get someone upset like this. Psychiatrists, psychologists and psychiatric nurses are taught that certain mental health diagnoses should not be treated with traditional psychotherapy such as schizophrenia and dementia. These disorders are treated with supportive psychotherapy, not with insight-oriented psychotherapy as described in the email.

What good does it do to dredge up the past with someone who has dementia? How can it be helpful? I certainly don’t know. However, if an individual unsolicitedly brings up past memories, that is fine. They can be dealt with in a supportive way whether positive or negative. And reminding someone of past positive memories can be therapeutic as well. But to stir up past memories in any of us against our will is certainly cruel in my opinion.

So, yes, this behavior is undoubtedly more destructive than constructive. Definitely confront the involved providers and request them to discontinue this type of communication and involvement. If it doesn’t stop, go to the next level, etc. If it continues, and if it is possible, go somewhere else! If it smells like a duck, quacks like a duck and walks like a duck then it is a duck………….

This makes me wonder. How many of all caregivers, professional and non-professional unwittingly aggravate and/or cause some of the argumentativeness, irritability and combativeness seen in the dementia population?

I’d be interested to hear of others’ thoughts and opinions.


Donna says, “I really hope that I am helping and not hurting him”

COMMENT from Donna on the “I’m forgetting to eat” post.

Submitted on 2009/10/12 at 12:54pm

I thank you for sharing!  I was researching DLB for information for my siblings when I came across your posting.  We lost our mother a year ago.  She had Alzheimers, but breast cancer is what took her Sept 2008.  Before she passed, our father was diagnosed with Lewy Body.  Since then, my husband and I have moved in with dad, so he wouldn’t be alone at night.  We all live realatively close to dad (all but one of 5 within 7 miles).  My husband and I both work full time, he is retired from the military and now teaches, I am in the Air National Guard working full time.
I see the fog that my dad is in, and it kills me that he is alone for the better part of the day.  I have done some research to educate me on what my dad is experiencing.  I am hoping that my siblings will step up to the plate and spend some time with dad, understand what he is going thru to help him.  When my dad halucinates, at night, I always anounce myself before I go into his room, and then I ask him to ask the people to leave, he usually says they are gone, only once has he said they are right there, when I say it is time to leave so we can go back to sleep.  Then I reasure dad that I have check the house and all the doors are locked and we are the only ones left in the house. I really hope that I am helping and not hurting him. Yesterday was the Race for the Cure, which my husband and I participated in.  Before we got back to dads house, he called and stated that he couldn’t find mother, but that she was there 5 minutes ago.  It really hurt for me to tell him that she has
been gone for over a year.
I have rambled enough.  Thank you for your explaniation of the fog that I have seen my father in.  God Bless you and keep you safe, I have added you to my prayer list as well.
Donna K

Hi Donna…………….I am sorry about your father. If it were me, I think I’d want you to do the same thing. Simple reassurance is a marvelous treatment! Even if the hallucinations persist when you go into the room, I would suggest that you don’t argue. Sometimes simple distracting comments help. Thumbs-up

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Reply to Laura Fisher, M.D.

Dear Dr.         Have you tried the coconut oil Dr. Mary Newport has described as a miracle treatment for her husband? Do you take fish oil (three or more caps per day)? Do you take testosterone replacement (skin gel)? Do you take selegiline or rasagiline? What if any vitamins and other supplements do you take? It is not completely clear to me how you were diagnosed. Was it based on an MRI coupled with some behavioral and subjective changes?
My father died in his eighties of combined LBD and Alzheimer’s disease and I am trying not to follow his example.
Laura Fisher

Hi Dr. Fisher……………No, I have not tried the coconut oil. I need to study more about it. I am on Aricept 10-mg daily, Namenda 10-mg twice daily, 9 capsules of double strength fish oil, testosterone replacement therapy along with trazodone (for sleep). I take multivitamins, calcium and magnesium supplements along with vitamin D and B-complex daily. When I think about it, I take a vitamin E capsule as well. I’ve not gone overboard with all that’s recommended out there. Ah, yes. I do like my coffee in the morning and the good old home made iced tea!

I am now on a steady plateau with the above combination and am permitted to drive as long as I have a co-pilot with me. I’ve noticed the biggest difference since adding the Namenda to my regimen. I do find I slip backwards if I don’t use the testosterone replacement therapy. I’d love to be able to practice medicine again but have not totally come back to my base level. I still have enough deficits to keep me from totally functioning normally. I do well with regular activities of daily living as long as there is little pressure. Hobbies, crafts, gardening, TV, etc. Short term memory and immediate recall are still some problems for me as well as word finding difficulties.

I was diagnosed at the University of California, San Francisco’s Memory Clinic after being hospitalized for the entire evaluation. I following an LBD expert neurologist in Pittsburgh, PA. Pet scans of the brain have also shown the pathological changes as well.

I’ve never specifically been treated for my Parkinsonian symptoms. Azilect would certainly be something to discuss with my neurologist. During my last visit, he did mention starting an anti-Parkinsonian agent but I would like to hold off on that as long as possible.

Hope this helps……


LBDA Commercial to be Seen by Millions

A message from the Lewy Body Dementia Association:


Hut, Hut, Hike!

Join with us this month to watch a special message from the Lewy Body Dementia Association during the television broadcast of the Pro Football Hall of Fame Enshrinement Festival’s Timken Grand Parade Aug. 8 in Canton, Ohio.

This special 30-second commercial on Lewy body dementia is the first of its kind to be shown nationally. The parade will be
available in more than 81 million households throughout the
month of August – click the link below for information on your local station’s airdates and times:

Thank you to the Bankert family and all who have helped make
this incredible opportunity possible, and to you for joining with us as we Increase Knowledge, Share Experience and Build Hope for all those affected by LBD in more ways than ever before!

To CAREGIVERS — Live Webinar: Betwixt and Intermixed—Dementia With Lewy Bodies


I wanted to pass along an exciting announcement about an upcoming webinar on dementia with Lewy bodies, by the Alzheimer’s Research Forum.  This is free to the public, so please pass the word!

Live Webinar: Betwixt and Intermixed—Dementia With Lewy Bodies

By some estimates, some one to two million people in the U.S. alone are suffering from dementia with Lewy bodies (DLB), a disease that combines features of AD and of PD with additional symptoms that arise from their combined protein pathologies. All this adds up to a double whammy of a neurodegenerative disease, and researchers from both AD and PD proper are developing an active interest to understand it, diagnose it better and earlier, and find molecular or imaging biomarkers. Join DLB experts Ian McKeith, Brit Mollenhauer, James Galvin, James Leverenz, and Walter Schulz-Schaeffer for a discussion of the large and often overlooked overlap between Alzheimer and Parkinson diseases. Join us on Monday, 15 June 2009, noon to 1 p.m. EST for this Webinar on dementia with Lewy bodies.


Angela Taylor


A good article on LBD written by a caregiver

Lewy Body Dementia What is it? by Grace A. Holcombe, wife to Donald L. Holcombe

A well written article worth reading—



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