Hello everyone,

I am new to posting to this site. My Mom was diagnosed with LBD back in 2005. After several years of my sister and I taking care of her at home we felt we had to place her in an Alzheimer's facility in 2008. I won't even get into the difficulties we had with that choice because I am sure you all know. We recently decided to bring her home and I am ecstatic and also in need of connecting with others. I am back to the 36 hour day. Even though I am a psychologist and I have worked extensively with geriatric patients and patients with Alzheimer's and their families I remain completely confused at times by this disease and what it is doing to my Mom. I look forward to making more connections with others who are coping, I know we can all come together and learn from one another.

Best regards,
Nancy

NancyC,

Welcome to the Forum though sorry you've had to join us.

If you are exasperated, I wonder if the rest of us even have a fighting chance...?

Robin

I am confused more than I am exasperated. I really have a lot of hope. Just based on our experience with our Mom, LBD is so distinctive from AD. When I read the posts from others, I don't feel so alone, many are going through the same thing. As you know, most research out there is done on AD and the findings are applied to LBD. I'm probably lucky in many ways, I knew where to go and I kept at it until we had a diagnosis. I also felt that she didn't have classic AD or a general case of vascular dementia. Mom's psychotic symptoms (hallucinations) were one of the most predominant features which occurred just prior to her motor symptoms. The people on this forum are providing the insight because none of these researchers or doctors experience or observe the disease on a daily basis. let's face it, even though LBD is the second leading cause of dementia, it has little recognition (I know what studies are ongoing, what studies are getting the funding and it isn't in LBD...it is in AD). The awareness of AD has only developed over the last 10 to 15 years and now it is a major area of pharmaceutical research.Until we continue to increase the awareness of the unique nature of this disease we will be confined to using the findings applied to AD. We are our LO's only advocates and we can do it through communication. Sorry I am off my soapbox now... and I was preachin' to the choir

No, you arn't just preaching to the choir. I feel the same way because over the years in my nursing and personal life I have encountered persons with AD and I hated it that everyone was put into the same catagory. At first several doctors said, "he has Alzheimers, get things in order and start looking for a nursing home". I knew this was not Alzheimers and kept reading, reading, reading, (through my tears) I came upon this thing called LBD and every symptom fit perfectly. The next visit with the neuro he said, "I did think it was AD but now I don't", I quickly said "is it Lewy Bodies and his look was priceless, like what? Then he went on to tell me he thought it was cortical basil degeneration. Then I was shocked because I hadn't read about that one, so back to my reading, reading, reading but I just felt that didn't fit my LO symptons as well. We were referred to a second neurologist, that spent a lot of time with us and he was so kind and finally said, "our working diagnosis is Lewy Bodies Dementia". Thats when I joined this forum and every since, to any one that will listen, including doctors, I tell them about Lewy Body Dementia. I feel we all have to try and make something good come out of this nasty illness. There now I can get off my soap box.
Mary

I am taking care of my LBD husband at home, too, and, as an RN, I feel I should be well qualified to do so. There is a big difference between seeing patients for a short period and the 24/7 physical, mental and emotional strain of dealing with the delusions, hallucinations, incontinence, anger, agitation and unpredictability of LBD.

Welcome to the forum. You will find much knowledge, support and encouragement here. --Pat

I forgot the worst of the scenario: Watching your loved one deteriorate before your very eyes and grieving for the lost relationship even as you care for the stranger he or she has become.

The first neurologist that we went to in Seattle mentioned LBD as a possibility for my LO. Now we are consulting with a neurologist with the VA hospital in Seattle who specializes in LBD and teaches me about the disease. I spoke with him recently and asked how he was doing. He said they recently received quite a few new grants for LBD research and he is busily participating in studies so that the VA can continue to contribute to the body of knowledge on the disease. In Washington State I have heard that the VA is the center for LBD research.

Annie,
How great that your state is working so hard on LBD research! We need more of that.
And Pat,
You have hit the nail on the head. The lost relationship is the worst for me. And I do miss Johnny so much. Even trying to remember past trips or fun things, just to talk to him about them, is heartbreaking, knowing we'll never go there again. Yesterday, for the first time in awhile, he said he wanted it to be like it was. "Me, too," I said. Just tears me up. It's all over, we just wait for the end.
Thanks to all for just sharing my pain.
Judy

AnnieN,
Unfortunately the SF VA doesn't have a brain bank or a brain donation program. Sadly the VA system as a whole doesn't have a brain donation program. I don't know if the Seattle VA has one. But the U of WA has published some brain research on PD and AD. As you know, the doctors do overlap.
Robin

Hi NancyC - you have found a soft place to land with all the LBD stuff you are and will be dealing with. There are great people here, lots of very valuable information, and I feel like I have a whole new community of people who understand now that I found this web site a couple of months ago. I am sorry for what you are dealing with. I have been grieving the loss of the father I used to have for about a year now. He has been in ALF for 9 months now, and continues to go downhill. It makes me so sad to see him with absolutely no quality of life - it makes it very difficult to visit him. I try to be positive, and then he yells at me for "lying" to him. This is not a disease which has any hope, but at least you have a shoulder to cry on, a friend to whine to hear when you need it! Consider getting on the chat too - there is usually a good discussion most nights with some very empathetic people. Welcome, Lynn

Nancy,
Welcome to the LBDA forums, here you will be able to connect with people who are walking the very same Lewy path, I think it is wonderful that were able to bring your Mom home!