Hi All,

John is having a rather bad week. Last week he complained about pains in his side, so I took him up to the VA ER. I was afraid that if he had a urinary infection this could be causing his down hill spiral. They checked him out and said all was ok. So at night I gave him an extra 1/2 of Seriquil so that he could get some sleep, ( he currently takes 25MG of Seriquil at night, along with Namanda and Aricept during the day.) This is what his Doctors said to do, but I remember when he was in the hospital for 3 months high dosages of Seriquil made him like a zombie. Yesterday he was a lot better, but then last night he was up several times and very confused again. Woke up this morning with him talking to the table and very aggravated with me, says I'm running a * house. E-mailed his doctors, but don't know what they can do or want to. In his confused state last night, John told me he thought the meds were not working, he could be right. He has an appointment with his Urology Doctor today, his PSA is slightly elevated, but then he had prostrate surgery 8 years ago, I gave the Doctor a heads up not to tell him because this would really send him into a deeper tail spin. I alerted his childeren to the fact that he is really bad, I see him at a point where he was a year and a half ago. To say the least I am at wits end and very concerned of what to do. I send him over to a Senior Adult Day Center during the day but the way he is today, thats not the place for him. Thank you for listening, I just don't know what to do anymore.

B. Myers

B Myers,

I'm sorry to hear about this. I think all you can do is keep pushing on the infection angle. Or maybe there's an imbalance in the blood?

Here are some thoughts to speak with the MD or his/her RN about... What about a sedating antidepressant, such as trazadone to help him sleep? What about melatonin to help him sleep? What about increasing the Aricept dosing? One neurologist in our area is willing to go as high as 25mg/day. What about trying Provigil? (See the Boeve "Continuum" paper.)

Good luck,
Robin

Reporting back on John, I got in touch with his Gereintologist today, only because his Neurologist didn't reply to me. I explained all that has been going on. He is just afraid that maybe we are over looking something medical since John has a history of cancer surgeries. His primary Doctor wants to do a Nuclieir (sp) bone scan, but John in the past has had bad reactions to any kind of dye injections or contrast, so the gereintologist said to see if maybe an MRI or regular CT Scan would sufice. I told him we gave him an extra 1/2 dosage of the Seriquil for three nights for his not sleeping, and since he is so bad with meds, who knows we could have sent him backwards. so he prescribed a very low dosage of Ambian to see if he can sleep through the night. John hasn't hallucinated in over 17 months, but I know he was seeing things today and also his depth perception was really off. Does it get any better????

B Myers

It may be that the increase in LBD symptoms have nothing to do with an infection or medication. It could just be that he's experiencing a decline (so there are new symptoms) or that medication is no longer working.

I hope the Ambien works. (I know you'll be watching your husband closely.) Did you ask the gerontologist about melatonin or trazadone?

Yes I asked about the two other medication, no response just agreed to try the ambien. He took it 2 hours ago, went right to sleep but was just up for a bathroom trip, of course we missed the bowl. Got him to go back to bed, lets hope for awhile. His neurologist just weighed in by e-mail wanting to know if he was talking in his sleep or thrashing around, feels it could be REM associated with maybe Parkinson. Told him I knew he talked in his sleep but couldn't answer about the thrashing around, since I have been staying in the den just to get some sleep.

B. Myers

I might've mentioned to you a sleep study before. RBD (REM sleep behavior disorder) is common in PD, LBD, and MSA. Dreams are acted out. If you have a video camera at home, you could do your own sleep study!

Your husband took Ambien* in October '07, according to this post:
http://lbda.org/forum/viewtopic.php?t=559
Did he do OK on it? Not everyone here has been happy with Ambien. On the other end, one person is very happy with Ambien but uses it to wake the person with LBD up, not put them to sleep!


*At least that's what I'm guessing he took. You said he was given "ambiant to sleep."

Yes that is what he took Ambien. I gave it to him last night around 8:00, he slept for 2 hours then was up, went to bathroom then went back to bed up at 12:30 sent him back to bed then up at 3:30 very upset, came looking for me because he said he had a dream that me and the dogs were dead, calmed him down put him back to bed. He got up at 7:30 was showered had all the bed linens off the bed said he didn't feel good. Right now he is sleeping, he still was confused when he was up but it didn't seem as bad if that is possible. I just don't know anymore, its rough when you have to rely on doctors and you mention other drugs and they just shrug you off. Yes I did mention the Bovie article several times in the past but the response I got was that they have been checking with Hopkins articles. I also referenced this site but no response. Johns kids of course are concerned but made it known in terms that they can't take him, of course I tell them that was never one of the options, I'm just happy if they take him once in awhile for a weekend and I have to always remind them when I need a break. I have told them that there is going to come a day when I will not be able to take care of him 24/7 not physically but mentally. The Adult Day center has been my God sent, but who knows how long he will be able to continue to go there.

B. Myers

B. Myers,
My two cents... If you can't make them use the Boeve article and if you can't change to an MD willing to accommodate you, get a copy (from them) of the Johns Hopkins articles and hold them to whatever treatment is indicated. Looking over your post from 2007, it doesn't seem that things have gotten much worse. But they haven't improved either.
Robin

Your input is greatly appreciated. Please don't feel that we haven't went the other route with doctors. We wanted him on the drug Clozapan(sp) rather than Seriquil. The VA did not approve of this drug but said if we got the recommendation from another doctor they would get it. They felt that Seriquil was the later of the drugs and better. So we took John to a specialist in NY (Dr. Devi) who came highly recommended. she said he had the Lewy Bodies and concurred with the VA. She wrote a recommendation for the VA to use the Clozapan but also said if the Seriquil was working maybe consider staying with it. So the VA got the approval for the drug but felt why change at this point when the dosage of the Seriquil was finally working. We could not contiune using Dr. Devi because of where she was in the city and her cost. Two visits cost over $1400, she dropped out of Medicare and John's supplimental insurance would not pick up any of the bill. Johns Neurologist just e-mailed me saying he was sending out the med Klonopin to use rather than the Ambian to just start off with 1/2 pill of 5mg.

B. Myers

B. Myers,
Both Klonopin (clonazepam) and Ambien (zolpidem) are on Boeve's recommended list. Melatonin (available OTC) is too.
Robin

mm,

You certainly are NOT whining...sleep deprivation is not good for your health and yes, it does make one impatient and cranky...not to mention there are countries who use sleep deprivation as torture..and LBD does torture all of us at times. Look at it as "venting"...something we all need to do to protect our sanity through all of this. Its not too difficult to deal with when the LOs are in a manageable mode...but when the Lewies dip and start marching it is very difficult to cope. No, you are not whining.

mm,

Movies are always a good way of escape for all of us. They keep our minds working, wondering, dreaming. My LO always enjoyed movies of all kinds, especially the old ones. When he is in an up mode we will still watch them on a Saturday morning once in a while.
You are so right in the evaluation of the situations many of us are in. I have no help. I am here 24/7 unless a neighbor comes in while I go to pick up prescriptions, go to the doctor or store. When my hubby is in the up mode of Lewy I take him with me everywhere I go. Its not by choice but what our lifestyle and budget dictates. It is a shame that our healthcare system does not provide aid for all of us. Our insurance did cover it until a year and a half ago but now when I need it...too bad.
We saw the neurologist today. Had a good long visit with him about LBD. He is going to try to get me respite care once a month for 4 or 5 days. Don't know how my LO will like being away from home but we will try it and see. He is comfortable in our home surroundings and I hope the change will not be detrimental to him. They are also going to have a social worker call on us to see if there is something she can offer. We do not qualify for many programs due to income. Its not that our income is so huge...they just don't consider the fact that we are sitting on a house in Ca that has been for sale for 2 years...plus this one. With the economy tanking we all have a story. We all have our own story but bottom line...we all need help no matter what our circumstance. The world needs to know about LBD. What really astounds me is the number of new people signing up everyday. We are growing in numbers by leaps and bounds.
So no, we are not whining, we are tired, sleep deprived, worn out. We love our DOs and are doing our personal best to care for them.
Take care...you state it so well...it is what it is.
Dianne

I wish I could get my Mother to sit long enough to watch a movie or even a TV show- have missed the ending of more things than I want to remember. She has almost zero attention span and when she is moving around I have to be right with her. I'm like you Dianne- except instead of a neighbor I have a brother. He does work 6 days a week and has his own family. He tries to come 1 night a week so I can get groceries or prescriptions and some on Sunday. The isolation does get to one-
I'd love just an afternoon to go take pictures along the waterfront or do something not required. Sleep deprivation does take its toll- she has slept most of the morning so we'll be in for a long night. We are continueing on a slow downturn- we see doctors next week but don't think we'll get many answers from them.
Take care
Sharon

Sharon.. It must be very difficult for you as you cannot leave her side for a minute for fear of what might happen...a fall, etc. Its that constant pressure that we experience daily. If only we had a little help to relieve the stress of it all. You are fortunate to have your brother there for a little break. Its a wonderful, kind, loving thing you are doing (both of you) for your mother. I am lucky in that my LO still falls asleep relatively easy. He rarely sees the end of a movie but for an hour or so .. he is quiet.
Yes, it would be nice if you had the time to take some spring photos at the lake...yours are beautiful!

mm...whats going on here with the start of a "wet" day? Same thing here!Wakes me to help direct him to the bathroom but the sheet is already wet. Thank goodness I had already put the "pads" under his side of the sheets so the mattress is protected. Then back up to go an hour later...then a half hour after that. Oh for a good nights sleep. The mental picture of your LO, Tommy...then you. It was catching Thank goodness our humour remains intact through our sleepless, bleary eyes.

Wishing a good day for all.