View unanswered posts | View active topics It is currently Mon Sep 22, 2014 6:39 pm



Reply to topic  [ 21 posts ]  Go to page 1, 2  Next
 new member, with possible lewy diagnoses for hubby. 
Author Message

Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post new member, with possible lewy diagnoses for hubby.
hi,
i'm so glad i found this forum.. :D i have so many questions and concerns...

i have noticed memory problems for almost ten years with hubby.. starting when he was around 55 .. but we had just built our house( he was the contractor and had his own business going at the same time..) so i thought he was just overwhelmed. after we moved in, he maybe got a bit better.. then he got worse..... !!!

about 4 years ago i mentioned it to the docs and they ran some tests and diagnosed him with dementia and probable AD. they put him on aricept, but he was unable to take it, because of low blood pressure problems and he started hallucinating.. so he has been on nothing, for 3 years...he lost his drivers license in jan and hasn't worked for 3 years.. since he was a workaholic. he feels lost and that everything has been wrongly taken away and is very angry , depressed and feels useless. he doesn't think any thing is wrong with him. he has some days that are ok and he has lots of days when he just sits.... hes starting to have bit of problems with words, and his ability to do things are very limited.. altho he loves wiping up the floor( even if its clean) and collecting papers...

about a month ago he started hallucinating.. every night.. he was angry, belligerent.. and i'm sure very scared... he remembers some of it in the morning... but not the total details.
we were going to the internist for something else last week and i mentioned the prob and the doc said, i think he has lewy body.. and he encouraged us to go the neurologist asap and not take any drugs..until we are sure what he has... or rule out lewy.. he did give us a sleep med that has helped and allowed us both more than 2 hours a night..thank goodness..

i will be reading here and trying to learn as much as i can, before our doc appointment on the 16th.. and hopefully will be able to ask some intelligent questions of the doc... we have been going to the VA for care, but since he just turned 65, i also have an appointment to see an outside doc in jan, for a 2nd opinion.

thank you all for being here.. my heart goes out to you all.. with what i've read here and what you are going thru... i also understand feeling tired, overwhelmed, sad, scared and very alone ..

i did notice a caregiver support group on here but im unable to get in..?? is there something special i need to join or do??

thank you all again...

cindi

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Sun Nov 07, 2010 6:21 pm
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: new member, with possible lewy diagnoses for hubby.
Welcome, Cindi! Your story could belong to most of us here. I'm sure Irene, the moderator, can help you gain access to the LBD Caring Spouses Yahoo forum. It's a blessing to many of us whose spouses have Lewy.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sun Nov 07, 2010 6:39 pm
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: new member, with possible lewy diagnoses for hubby.
Cindi,

Go here to petition to join the LBD_caringspouses Yahoo!Group:
http://groups.yahoo.com/group/lbd_caringspouses/join

It's moderated separately from the LBDA Forum.

I suggest reading Dr. Brad Boeve's "Continuum" paper from 2004 on treating LBD symptoms.

Surprisingly, most diagnosed with Lewy Body Dementia during life do NOT have Lewy Body Dementia upon brain autopsy. I encourage you to either speak with your husband about brain donation during his lucid moments, discuss it with the neurologist on 11/16, or pursue making the arrangements yourself.

Robin


Sun Nov 07, 2010 7:03 pm
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3369
Location: Vermont
Post Re: new member, with possible lewy diagnoses for hubby.
Hi Cindi - I'm glad you found this forum and hope you find it as helpful as I have. I am so sorry for your need to be here - being a caregiver is a very tough job, and if you can find the support and tools you need, that will help lessen the load some. Take care of yourself too, while being a caregiver to your husband, Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sun Nov 07, 2010 7:21 pm
Profile

Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: new member, with possible lewy diagnoses for hubby.
thank you all for your help i have joined, i think, the caring spouses.. thanks for the link.. is that the one you can get to from here??
that is called a support group for early lbd?? im not even sure where we are on this path!!

i will discuss the donation.. thank you...

hopefully i will be able to find info and be able to help others soon, as you are helping me..
thank you all!!
oh i did try and read the link in the welcome, but the first one with dr bovies info, did not work for me..?? ill try and reboot and see if its me.. thanks again...

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Sun Nov 07, 2010 9:44 pm
Profile

Joined: Sun Oct 04, 2009 10:18 am
Posts: 276
Location: Washington State
Post Re: new member, with possible lewy diagnoses for hubby.
Hi Cindi. To find Dr. Boeve's Continuum, you will have to get off the discussion forum and onto the home page of the Lewy Body Dementia Association. The address is: www.lbda.org. In the upper right hand corner of the homepage there is a search function. When I entered these keywords: Boeve Continuum, I found his 2004 paper as the second listing. It is titled "Diagnostic Review & Medicine Management of Dementia with Lewy Bodies". After clicking on the link you will have to download it as it is quite large and chock full of good information. It is so important to me that I've printed out a copy and I keep it in a notebook with my LO's medical records in case we have to make an emergency trip to the hospital. Please note that there is also a Boeve Continuum that came out in 2007. No doubt it is also good, but the 2004 Continuum is the one that people are steering you to.

Good luck and welcome to the forum. Annie

_________________
Annie, daughter of brave Marie, dx 2007 and in ALF


Sun Nov 07, 2010 10:45 pm
Profile

Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: new member, with possible lewy diagnoses for hubby.
thanks annie i found it,,, will print it out and read..

i hate to ask another question already... but is there a place i can read about symptoms, and what to look for and expect?? i realize every one is different.. but im just not sure where we are.. and maybe what should i be preparing for and getting in place. ive done trusts, he has some medical thru the va, but i have had to fight for that and ss disability in the last year. so ive been really busy trying to get that stuff in place and reading all that i can, in my spare time,(LOL) on alzhiemers.. other than the hallucinations, we are now expierancing nightly.. not sure what this possible new diagnoses means..

thank you all again and hope your night is peaceful..
cindi

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Sun Nov 07, 2010 11:23 pm
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: new member, with possible lewy diagnoses for hubby.
Cindi,

The area for early LBD is a sub-forum here on the LBDA Forum. The group for early LBD is for PATIENTS recently diagnosed. So your husband could join there, or perhaps your husband through you. No one has posted there in quite a long time. Usually the newly diagnosed come here, find each other, and then leave, often continuing one-on-one conversations privately.

FYI - Many of the links here broke when the LBDA re-did its website (lbda.org). Glad you found Dr. Boeve's document. It's one of the best.

There's a very good list of symptoms on lbda.org along with the diagnostic criteria. Look at this yourself to determine if YOU think your husband meets the diagnostic criteria. Besides progressive dementia and visual hallucinations, your husband will need one additional symptom -- either fluctuating cognition or parkinsonism -- to be diagnosed with probable LBD.

Robin


Sun Nov 07, 2010 11:39 pm
Profile

Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: new member, with possible lewy diagnoses for hubby.
hi robin, thank you.. i did find the area with the criteria...they do cross over alot and sure hard to know...???

what does the fluctuating cognition mean??? i know hubby has ok days.. not perfect.. but ok.. and then he has crummy days,, where he just sits and hours go by.. maybe starting at the same page.. then later, or the next day he back to ok.... he might take interest in something.. raking or feeding the birds... i thought it was like taking a step forward and then two back.... but there is a huge difference on those days or just from morning till night... its been confusing, but i thought it was just the way this went... i know when he gets anxious,( ie: something new, dmv test, doc visit) he is way worse than crummiest days.. but when we do our daily routine.. he does mostly ok.. except for the crummy parts that pop in and out.. is that what they are talking about???

as far as the parkinson.. im not sure...??? he has had three times his leg has just given out.. and hes almost fallen, but caught himself and we just went thru a time where he was having what we thought was a reaction to high cholestrol statins.. muscle pain, couldn't walk , lots of pain... he does shuffle his feet recently.. thought it was the depression.. but maybe not.????. guess i need to do some more reading... but if nothing else .. good questions to ask the doc!!! thanks again.

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Mon Nov 08, 2010 12:24 am
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: new member, with possible lewy diagnoses for hubby.
There's a good explanation on lbda.org of fluctuating cognition and parkinsonism. Scroll down to "Symptoms Explained"!


Mon Nov 08, 2010 12:58 am
Profile

Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post with possible lewy diagnoses for hubby
cdw wrote:
"about a month ago he started hallucinating.. every night.. cindi


Dear Cindi:

You've written about so much that is familiar. The 'every night' hallucinations that were acted out for hours were the reason I knew that we needed a more definitive diagnosis for Dale. Prior to that, he was often dizzy. He went to six neurologists looking for a solution. He also had a car accident and totaled his car. It was his fault. I wouldn't ride with him and he willingly gave up driving.

I hope your appointment on the 16th goes well and that you have the answers you are hoping for. Dale's night time hallucinations have been minor since he started taking Seroquel. Some do well on that; others don't. Everything about this disease is a puzzle we'll all trying to solve.

Hugs to you both.....

_________________
Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Mon Nov 08, 2010 7:55 am
Profile

Joined: Tue Aug 17, 2010 9:20 am
Posts: 184
Location: So Cal
Post Re: new member, with possible lewy diagnoses for hubby.
Hi Cindi,
As others have said, many of us could have authored your posts. I know that you can find symptoms papers written by Docs but one thing that I always want when a new stage comes up for us is to hear about it from others who have gone through it, so I'm going to share a little.....
My husband, Ken, will turn 65 this week. He was also a builder, by the way. I am finding repairs that he did after "Lewy" set in where he did not use the proper materials, but only realizing now that they are failing (a toilet, a roof job) how he had really hidden his symptoms from us for far longer than anyone realized.
Regarding Ken's fluctuating cognition: more than once I would see such a change from one day to the next that my first thought was "did he have a stroke?". Regarding Ken's Parkinson's symptoms: besides the shuffling gait he has muscle rigidity to the point where he cannot bend to sit sometimes. He has lost expression in his face (masked facies) and does not blink often, just stares, for which we use eye cream to prevent dryness. He has now developed swallowing issues, cannot eat anything that has little "bits" in it. He also has slight tremors, his hands and mouth. The latest symptoms are myoclonic jerks; uncontrolled spasms.
Please do not take the depression lightly. I thought Ken's sitting and staring were all a part of his diagnosis of probable Alzheimer's and found out only after a serious injury (a fall onto a concrete patio from a 6-foot retaining wall) that he would later tell us was a suicide attempt. It was after that hospital stay that he was diagnosed with LBD.
I'm so sorry for your need to be on this site, although you will find it tremendously comforting to know you are not in this alone. Remember to ask for help. And remember to laugh whenever you can. Sher

_________________
Sher (53) married 29 years to Ken (66) who was diagnosed with LBD in 2008, but it most likely began many years before.


Mon Nov 08, 2010 9:17 am
Profile

Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: new member, with possible lewy diagnoses for hubby.
thank you both so much...

my heart goes out to you both and in reading i realize even tho i already feel overwhemed and scared and sad.. there is so much more to come..

but i also feel like ive found a place i can share and others underrstand... i hate to unload on friends ... even tho they are sooooo understanding.. but i also like to have that time to try and have fun and giggles.. its helps so much to make it thru the rest of the day..

again thank you for being here and for all your help.. i already dont feel so alone..

sher, i see you are from so cal.. me too.. not sure wehre to add it but ill look around and see if i can find out...LOL

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Mon Nov 08, 2010 11:15 am
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: new member, with possible lewy diagnoses for hubby.
Before I found these forums I was also 'unloading' on friends and family. They were very patient but I'm sure they got a little weary of it. People who are not in this position cannot possibly understand!! I realized that when I attended some dementia support group meeting while in AZ. I broke down and cried when I heard the others talking about their LOs. In fact, I did nothing but cry [quietly :| ] through the first meeting. it was such a relief to hear that others were experiencing the same trials, had the same self-doubts and frustrations that I had.

The forums are not face-to-face but are more convenient, as we can come here when we want--or need--to learn, to listen, to unload.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Mon Nov 08, 2010 11:41 am
Profile

Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: new member - support
I want to add my resounding 'amen' to what Pat (Mockturtle) wrote. There is absolutely no better place for sharing the day to day experience of Lewy! Doctors are busy or uninformed. Friends have their own lives. Relatives don't understand since all they see of our loved one is 'showtime.' I am totally indebted to those who contribute to the postings here. It's my hope that more who share this experience will join into the conversation.

Before the diagnosis, I found help from these forums in the task of finding an appropriate neurologist. I knew the right questions to ask only because I had been here first. He had been to 6 neurologists and I had conversations with 2 others ... All 8 seemed to be in dark about this disease. I was ready to give up and go miles out of town when I had a recommendation from a friend of another neurologist to contact. Bingo! We both cried in his office. It was so much relief to know the enemy we were facing.

My heart goes out to all those who are on this road!

_________________
Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Mon Nov 08, 2010 12:08 pm
Profile
Display posts from previous:  Sort by  
Reply to topic   [ 21 posts ]  Go to page 1, 2  Next

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group.
Designed by STSoftware for PTF.
Localized by Maël Soucaze © 2010 phpBB.fr