i think i mentioned a few weeks back, its was like we took a new path, and we are still on it... 4 weeks later...

we had the first hallucinations 5 yrs ago and they come and go..with no pattern, that i can see. and even thou ive noticed some problems for almost 12 years, since he was 55.. we've stayed a long a pretty even keel, with a few bumps in the road...

well a few weeks ago, we added delusions( first time) and trouble sleeping and an almost blank stare, kinda look. lots more confusion... the anger is building up and on the edge all the time. hearing seems to be more troublesome... and an over all lack of being aware.. speech is mumbled and words are not the right ones or not words at all... i had noticed some of these conditions before, a few times in the last ten years, but all of a sudden its every day or every hour ..

he is on galantimine,serequel, miraxapine and a cholesterol and a hbp med.. and a few vitamins.. is this just a new phase.. or something i need to be concerned about...??

going to take his bp for few days and see if its ok.. we did have a very low reading that caused a slip before.. it was 80/58.. and we took away lots of the cholesterol meds and hes only on 5 mlg now.. but wont hurt to check that...

any thoughts/ ideas would be appreciated..

thanks, cindi

My husband has been dealing with delusions and hallucinations for at least eight years now, starting with occasional episodes and becoming pretty much constant. Because he is on fairly high doses of Sinemet that might account for some, but not all, of these symptoms. He had both delusions and hallucinations even before taking Sinemet.

He was on antihypertensives for at least 30 years but a few years ago his BP was reading low [much like your husband's] so I had him taken off of the BP medication. His BP is usually normal now.

What does your husband's neurologist think? It sounds to me as though this is just Lewy. Not everyone exhibits the same symptoms but these are quite common.

pat, his doc appointments are every 6 months or so ..ill ask when we go.. i think its just lewy too.. it was just such a big change, in so many areas..overnight.... just making sure that its seems normal.. what ever normal is with lewy??

thanks
cindi

Sometimes infection, like a UTI, can cause a sudden, steep decline which often rebounds to baseline after a course of antibiotics.

I am thinking along the lines that Pat is, LBD declines but generally not suddenly and I am thinking it might be possible something else is going on with him ! I hope not but something to think about !
Good Luck !

thanks irene and pat, again.. keeping my eyes and ear open and trying to think of all suggestions and remarks that have been made... he seems a bit better today.. but we were up all night with him not sleeping.. so im not looking thru the clearest of eyes... yawn...
cindi

I hope tonight is a better night for you both, no fun this caregiving even more so when we are so darned tired !

How are things now?

Perhaps 6 months between appointments is too long for LBD?

Is "Miraxapine" really "Mirtazapine". I don't recall reading about Mirtazapine, when I was active on the list four years ago. I just looked at the Wikipedia article and note that it is an antidepressant, but even more interestingly, it is used to reduce the side effects of some of the drugs used for Parkinson's (and hence, LBD). Particularly, from what I deduce from the Wikipedia article, it may deal with some of the side effects of Seroquel.

What does the Doc think about Depakote?

The blank stare, is called "Masking", and is well known as LBD progresses into Parkinson's symptoms. Mumbled speech was one of the earliest symptoms of my Dad, but for your husband, it seems as if it is one of the later stages.

I also notice that there is Mirapex (Pramipexole), also used for Parkinson's.

the mirtazipine was first given to help with hallucinations or so i was told... they added the seroquel later and left the mirtazapine on the list.. i did question if we could remove it, if they were doing the same thing.. but the VA chose to leave it.

he has word confusion or mumbling of words, a lot more frequently, than say 6 months ago.... i think we have moved forward.. that time in dec, was the beginning of a new phase, as we never went back... he is seeing a few new symptoms and old ones, that are happening way more frequently..

as far as parkinsons.... VA is denying any relationship. (i am dealing with the va and agent orange benefits..) he does fall, he has, and has had, horrible muscle cramps in his right thigh for over two years and his legs just give out on him.... they have done an xray and say his knee is ok, but his back has some rough areas that they are blaming the muscle problems on.???.. he has been diagnosed with many parkinisums.... a slight shuffle, masking ect. etc... but the VA says pk and lewy are not related... even tho i have sent numerous studys, that tend to disagree .. so i think its a wait and see, and keep looking for info, that might help prove his case!!

thank you so much for your help....
cindi

Cindi,
Have them get in touch with this Physician in FL who is at the St Petersburg FL VA , he is well versed on LBD and knows that PDD is under the umbrella term of LBD. I have had the pleasure of speaking with him and I just wish I would have found him prior to my husband's passing !




Bay Pines VA Medical Center Jonathan T. Stewart, MD "Psychiatry Service
(116A) VA Medical Center Bay Pines" St. Petersburg FL 33744 (727) 398-6661

wow, irene thank you so much..... you sure he wouldnt mind me calling???

sadly the something of medicine, must feel this way to get the VA to move in their decision... but im trying to do everything i can to get them to understand.... there are just so many service folks tha have been denied.. it took till just afew years ago that they accepted pk.. and at the time the folks fighting.. put lewy body in the pkg.. and the VA removed it!!!

i have included over 30 articles with my claim and have another 27 i have found ,to say they are related.. etc... and he keep being denied... grrrrrrrrrrrrrrrrrrrrrrrrrr!!!

thank you again i will contact him first thing tomorrow!!
cindi

Cindi,
I am not sure how long it would take for you to get in touch with him , I really meant for the VA that you Now go to to have them contact him .

hmmmmmm?? ok..


i was actually thinking of calling is office and getting his email and sharing our problems, with him. and asking him for advice.... he could get hubbys records easily.. and maybe offer suggestions...

i dont think any va doc would take the step of calling him.. but i could be wrong.. it feels like its up to use to prove something.. even tho its supposed to be up to the va to show proof we are wrong...

i have found alot of his articles and will add them to our files..

thanks again irene((()))