Comments for Lewy Body Dementia

Comment on Getting Worse by sue

sue — Fri, 30 Oct 2009 13:24:59 +0000

My mom has similar issues with hallucinations and paranoia. We are not going down the pharma med road – she sees a Naturopath Doctor who prescribes natural remedies that help her A LOT! She has way more good days than bad ones. We sleep through the night most nights.

Comment on Celebrating Three Years… Or Five by no1daughteroflewydad

no1daughteroflewydad — Thu, 29 Oct 2009 02:10:15 +0000

Hi Holly,

Happy, happy anniversary to you and hubby.

cheers

Comment on Word For Word by David Thomas

David Thomas — Fri, 23 Oct 2009 15:35:12 +0000

Holly………….truly a wonderful post! You describe so well what I feel inside with this crazy Lewy cycle.

David

Comment on Word For Word by no1daughteroflewydad

no1daughteroflewydad — Fri, 23 Oct 2009 01:52:06 +0000

Hi Holly,

Oh, I can’t agree more. The fluctuations! Dad had a conversation 2 nights ago on the phone with my brother (interstate brother…the one who phones every 6 weeks!), ‘how’s everyone, how’s the boat’…remembered everyone and what they were up to. That night wammy…Lewy and as for the following day…well!

I suppose the only positive way is to look at is…thank goodness for those good days/moments. But it sure is hard to keep up with…can do something…can’t do it…

Please tell your Mum I think she is wonderful and that I have a lot of respect for her. You all have done a great job and rallied together.

hoping all is great with you and hubby

Comment on Getting Worse by no1daughteroflewydad

no1daughteroflewydad — Fri, 16 Oct 2009 03:41:25 +0000

Hi holly,

It certainly is an evil disease. It’s so sad to read your Dad isn’t doing so good. My heart goes out to you all.

I hope you have settled into your new place and that your pregnancy is a happy joyous time for you and your hubby. It’s such a wonderous time, make sure you enjoy it.

hugs from Australia

Comment on Sleepless in the Desert by Holly

Holly — Fri, 16 Oct 2009 03:17:14 +0000

Thanks, no1. Hope all is well.

Comment on Getting Worse by Holly

Holly — Thu, 15 Oct 2009 21:12:12 +0000

Thanks for the comments, everyone.

Diane,
Dad does take some of his Seroquel in the morning and the rest of it at night. You could be right, we may need to try something new with the timing/dosage, although he’s already on a rather high dosage of Seroquel, in my opinion.

Leone,
My Dad is 75 and has been on Seroquel for some time now. He was “officially” diagnosed in April 2008 with LBD and probably started the Seroquel some time shortly thereafter and has been on it since. Dad’s hallucinations come in waves. He can go months and months without having any or just a few mild, harmless ones and then it swings in to full gear all of a sudden and it’s constant and long with-standing. I would say since this summer his hallucinations were increasing n number although rather mild. Now, it’s full escalated and can be quite an ordeal to deal with.

Marjorie,
It’s so nice to hear from you. I often wonder how you are doing. Wishing you all the best…

Comment on Getting Worse by Leone Barben

Leone Barben — Thu, 15 Oct 2009 20:49:51 +0000

My husband has Lewy Body Disease and although he has mild hallucinations, I believe Seroquel is very helpful. I’m curious to know how old your father is and how long he has experienced the hallucinations. My husband is 74 and the hallucinations have been with us since January.

Comment on Getting Worse by Marjorie Carmen

Marjorie Carmen — Thu, 15 Oct 2009 18:08:33 +0000

Holly dear..there is no better or worse with this miserable affliction..it IS WHAT IT IS, and only when your dear Dad is able to “let go..and go..” will your family be able to breathe and sleep..and feel proud that you have been able to give him this time with privacy and dignity. My heart goes out to you all, blessings, mmc

Comment on Getting Worse by Diane Petersmarck

Diane Petersmarck — Thu, 15 Oct 2009 16:32:53 +0000

I am so sorry to hear your Dad going through this (and your poor Mom). My Dad also has LBD and we tried rispiridal which didn’t help and then finally seroquel. The trick is to get the dosage right with the seroquel. Too much made him too sleepy, to little didn’t help. Even the time of day makes a difference. Dad is in a nursing home, so all this is easier, but they are now giving him his first dose of Seroquel when he first wakes up and his second dose after lunch. Talk to his doctor and find out if he has any suggestions on dosage and timing.

Comment on Sleepless in the Desert by no1daughteroflewydad

no1daughteroflewydad — Wed, 30 Sep 2009 00:09:44 +0000

Oh dear! I hate lewy so much.

My heart goes out to you all and especially to your Mum.

Holly, you must be on a personal roller coaster, happy and excited being pregnant and then sad for your folks. It’s ok to be happy. Please enjoy these wonderous months.

hugs to all

Comment on B-A-B-Y by daughter

daughter — Mon, 21 Sep 2009 12:39:17 +0000

Congratulations! You and your husband are going to have so much fun being parents together. Enjoy!