Hi. I am a new poster, but not new to this site. I have been visiting ths site for about a year when my husband's neurologist threw out the term Lewy Body Dementia. After a year of not having a diagnosis other than Dementia and the PD symptoms not being addressed, I decided to get a second opinion. On Wed. we visitid the VA in Seattle for another evaluation by a Psychiatrist. She thinks he does have LBD and said he was in a category called "Pure Lewy Body" in which only about 6% of LBD patients fall. I have never encountered this term before. The VA has a Movement Disorder Clinic and our next step will be an appointment there. Although the Dx is not what one would hope for it is what I was pretty sure we were facing. I made a copy of the "Lewy Body Stages" and I think we are probably nearing the beginnings of Stage III. No hallucinations or other psychotic episodes. Exelon patch has been used for 1 1/2 years and we did see an improvement although its effects seem to be diminishing. The Psych said she thought we could stop using it, but I think we will wait until we see the neurologists in the movement clinic before taking that step.
I feel like I already know you all from your postings. Thank you for sharing your lives with us "newbies" and God bless you all in all your struggles with this horrible disease.

"But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk and not faint." Isaiah 40:31

Jana

Oh, Jana! That verse from Isaiah is one of my favorites. Thank you for that wonderful reminder! And welcome to the 'active' side of the forum! --Pat
PS: I also live in WA.

Jana,

Welcome to the Forum.

Please share the name of the VA Seattle psychiatrist, if you don't mind.

I've never heard the 6% figure before. The figure I have often heard is 15%. Certainly it's a small percentage. Another Forum member -- who isn't here so much these days -- who dealt with pure DLB is Renata. There's an article about her and her late husband Jerome in Neurology Now magazine. I don't recall if the article talks about "pure DLB."

You might check past posts here (unless you are aware of them) about discontinuing an AChEI, such as Exelon. It can be risky business.

Good luck,
Robin

The Psychiatrist's name is Dr. Edlund. She is a Resident and is only at the VA on Wednesdays.

I have read previous posts about discontinuing the Exelon and that is why I want to wait and talk to the neurologists. Thank you for confirming my hesitation in doing this. Jana

Jana,
Welcome to the LBDA forums, glad you decided to participate but glad you have been reading all along, I too have never heard of the 6% pure LBD and I would be hesitant to d/c the Exelon as it was explained to me, we really don't know how it is helping them until we do stop it and restarting is not always a good idea as I believe it loses the orginal effects of the drug!

Dear Jana,
I too would be very hesitant to stop the Exelon. I believe Exelon and Namenda have been a huge help to my husband's cognition. My husband is 67. What is your husband's age? Where did you find the "stages" of LBD?
Blessings,
Roxanne

Over a year ago, my husband's Exelon patch was stopped and restarted about two months later and it seemed to work OK again. Of course, he had to begin with the 4.6 patch before going back on the 9.5. It was NOT a good decision to d/c it! He became much more agitated and had more hallucinations than previously and his memory was more impaired. It was one of several poor decisions by some physicians seeing him at the time. I have no way of knowing whether it is still effective, but, at least until he reaches the final stages of this disease, I intend to keep him on it.

Don't assume that these doctors--even neurologists and psychiatrists--know what they are doing. Most are quite inexperienced in dealing with LBD. They want to treat every dementia like Alzheimer's.

Roxanne, on the LBD Caregiver's forum [Yahoo] this document includes the Stages of Lewy Bodies Dementia.
You might consider joining that forum, too. I just joined the other day. --Pat


Sorry, I had to delete the link. It's a very useful pdf file that should be made available to both forums, IMHO.

Thank you Pat!

Jane, My husband was diagnosed post mortem as having Lewy Body [also beginning Alz.]. We used the Exelon patch for him to the very end. His illness exhibited all the bad symptoms discussed here throughout an eleven year illness, however, everyday there was a glimmer of knowledge that shone through. The final days were spent in the hospital for pneumonia but he spoke with us and one day the nurse offered his cup with seroquel which he routinely took himself. That time, he refused. I told the nurse to put it to his lips and he would take it... he took the tiny pill in his two fingers and with great authority laid it on the sheet saying, "Do not give me any more medicine". I nodded for the nurse to back off. Later that night he slipped into a coma and was treated as a Hospice patient. Days later, he passed away but he died knowing he was surrounded by love and care. He talked to me daily to the end... just come and go... but I live in thankfulness for the Dr Boeve medical suggestions and my doctors who did not really give a clinical diagnosis but were willing to follow his guidelines for threating the symptoms.

I am glad the doctors stayed with the Exelon patch. Having said that, I understand all of our loved ones are different but I needed to say how it was with Mr Bobby who lived with a clinical "possible LBD" and a pathology report of LBD. I believe the Exelon patch and Namenda also held the "beginning Alz" at bay so it was barely noticable.

Dorthea

I found it on this site. If you go to search and type in "sorry this is so long" and "neuro guy" down on the second line a whole page of posts comes up with a discussion of stages. The one by neuro guy is several posts down the page It is not scientific, but is a good framework from which to try and figure out what is applicable to your LO. Jana

I recommend Dr. James Leverenz in the Neuorology Dept. of the VA Puget Sound. He is very knowledgeable about LBD, he communicates well, and he is compassionate with both patient and family members. It is wonderful to speak with someone who has such confidence and experience with the disease. Of course, he is busy so I don't know how long it might take to get a consultation. Best of luck to you.

Right, the stages were posted here on the Forum quite a while ago. See:
http://community.lbda.org/forum/viewtopic.php?t=1357

AnnieN,
Thanks for the info about Dr. Leverenz. The appointment at the VA was made yesterday and it will be with Dr. Leverenz. So glad we will be dealing with someone who knows LBD well. Thanks, Jana

Welcome Jana! Hope the dr. appt. goes as well as it can. Lynn