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 Welcome to our Forums! 
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Joined: Wed Aug 06, 2008 2:24 pm
Posts: 40
Post Welcome to our Forums!
If you are a first time visitor, we are glad you are here! This is an excellent place to share your questions on LBD, and pass along any caregiving tips and LBD information that has helped you along the way.

We strongly recommend two key articles (written by members of LBDA’s Scientific Advisory Council) as excellent educational materials for caregivers. In fact, many of your questions about LBD may very well be answered in these two articles! You can read a comprehensive article on diagnosis and treatment of dementia with Lewy bodies by Mayo Clinic’s Dr. Brad Boeve here: http://www.lbda.org/feature/1347/diagnostic-review-and-medicine-management-of-dementia-with-lewy-bodies.htm. The second article, by Tanis Ferman, PhD and colleagues at Mayo Clinic, addresses managing the behavioral challenges of dementia, and can be found here: http://www.lbda.org/index.cfm?fuseaction=page.display&page_id=52.

Please remember that this forum is a caregiver-to-caregiver resource, and is NOT intended as a substitute for professional medical advice. Any suggestions you read here regarding diagnosis or treatment options (including those provided by LBDA volunteers) should be discussed with your doctor, to find out if it is appropriate for your particular situation.

The forum moderator is Irene Selak, who works hard to make all members feel welcome and keeps the forum free from spam. (Please do let her know if someone is posting links to commercial or inappropriate sites, so she can delete the post and notify LBDA.)

In hope,

Angela Taylor
Lewy Body Dementia Association
Increasing Knowledge, Sharing Experience, Building Hope


Last edited by ataylor on Tue Jun 09, 2009 9:12 am, edited 1 time in total.



Mon Aug 11, 2008 12:56 pm
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Joined: Sun Aug 26, 2007 9:44 pm
Posts: 118
Location: Nashville, Tn
Post haven't sent a message on this forum in a long time
My husband is 58, diagnosed with Parkinsons 5 years ago but now drs. say it's LBD. Pretty well knew it from the start. His Parkinson's symptoms are minor compared to the other problems we are having. We live in metropolitan area and have great medical help but it is still sooooooo difficult. My husband sounds good (if you don't really pay much attention to his responses), looks good, doesn't tremor is just stiff and tired all the time. BUT our conversations are like being in a bad dream.... his responses are not quite on track - I try to explain - he says I don't explain very well - and he doesn't completely get it when he is pretty confused..he realizes it somewhat but not the extent of the problem... it just goes on and on and on.... meds help for awhile - then don't do a bit of good - change his meds - that may or may not help. There are days when he is completely confused then days when he seems sort of normal. I never know who I have for the day or hour. He stays exhausted.. we even have a perk me up med for that - but it doesn't work. Even with constant attention to meds and uti possibilities - it is a roller coaster. I am at my wits end.... and getting away is so difficult. He thinks he is normal enough to not need anyone and he really can't figure out why I might want to get away. And I feel guilty. I do have help a couple of hours 2 days a week but that just isn't enough - what I really want is to go on a lovely holiday for about 2 months.... ha ha ha ha ha... I am not feeling positive or nurturing or warm and fuzzy about the whole thing right now. I am having lots of self-pity at the moment and not too proud of it but there it is. Cheryl


Tue Jan 20, 2009 3:53 am
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Hello Cheryl,

Glad to meet you but sorry it is under this circumstance. You have come to the right place for information and support. I joined one day when I was at my wits end also. Its been an immense help. You can vent to those who understand this cruel disease and it is comforting.
My LO has Parkinsons and LBD. It is a very sad, frustrating and trying journey. I know the feeling of wanting a 2 month vacation lol...and feeling guilty. Those are normal feelings. Taking a little time for yourself is good. Somehow our LOs do not understand the need for that.
A little self pity doesn't hurt now and then :)

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Dianne C.


Tue Jan 20, 2009 4:52 am
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Joined: Sun Aug 26, 2007 9:44 pm
Posts: 118
Location: Nashville, Tn
Post to Dianne C or anyone else!!!!
As I listen to the messages - I realize how different the symptoms are and the severity of the symptoms vary also. What are your husbands symptoms? My husbands symptoms are not the same from day to day. His confusion and exhaustion and stiffness are the main ones but I am telling you it is so difficult. It doesn't sound so bad when talking about it but I have never faced a challenge this difficult. THANKS FOR YOUR RESPONSE - I FEEL LIKE I AM "TANKING" TODAY........ Cheryl


Tue Jan 20, 2009 12:10 pm
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Hello Cheryl,

You are going through a very difficult time right now...we all do..so we understand. Go out for a walk, if you can leave him alone for a bit, go to a mall and window shop, to a gym to work out a bit, indulge in a hot fudge sundae or go to a library to read and enjoy the peace. Do something for YOU. Don't feel guilty, I used to but now realize we all need some time to ourselves. My LO gets very upset and jealous when I do things for myself but I need that time to keep my sanity.
My husband has most of the Parkinsons/LBD basic symptoms..although they do vary from person to person. Light tremor, shuffles when walking, poor balance, small handwriting, stiffness, confusion, incontinence (this is new in the past month or two), dementia...I could go on and on. LBD is like a roller coaster...up and down. The most difficult thing for me was to maintain my own sense of mental balance while on the coaster ride. Some days are terrible, arguing, shouting, etc. I try not to argue with him as I consider the source but sometimes it comes to that. If you read my prior posts...back to when I first joined it will tell the whole terrible story. When I read these posts, I realize how much worse some have it than I do. The people here are very informed and are a huge source of support. They will help you to get through the bad days...even if it is just another person to vent to, it all helps.
I really am trying to keep my LO at home as it was something we both promised each other we would try to do, not put him in a facility, but I do realize that it may come to that and I now feel strong enough to make that decision if need be.

Hoping today is a better day for you. Be proud of yourself as being a caregiver is a difficult task. Look in the mirror and give yourself a BIG smile. :)

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Dianne C.


Tue Jan 20, 2009 1:59 pm
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Cheryl,

I did forget to mention the hallucinations, delusions, etc. We took a tip from another caregiver: I ask him to describe the people, animals, etc. that he is seeing. We then laugh about them, how funny, stupid, etc. they look. It relieves his stress. Humor is our best friend. At times it doesn't work but I try whatever possible to make our life as bearable as I can.

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Dianne C.


Tue Jan 20, 2009 3:30 pm
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Joined: Sun Aug 26, 2007 9:44 pm
Posts: 118
Location: Nashville, Tn
Post to Dianne C or anyone else!!!!
Wow! symptoms sound so similar. boy you are right about the ups and downs. it is so strange.... you don't know how much you helped me today.... i have been angry, irritable, downright bitchy.... thanks Dianne so much - cheryl


Tue Jan 20, 2009 11:41 pm
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Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
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Dear Cheryl and Dianne ---

TWO MONTHS!!!! Heck, I'd settle for one afternoon to myself! In fact, it's been so long that I don't even know what I would DO with myself :lol:

I can go you guys one better ... we have a pretty large house, so I used to have plenty of space to take a break somewhere in the house. Three weeks ago, after a massive rain here, our insurance company determined that we have serious mold in some walls. So those rooms have been sealed off and we are pretty much contained to three rooms (and the bathrooms).

Yikes! There IS no escape!! My choice ... Lewy or mold. Mold is starting to sound pretty good right now. :wink:

Cheryl, look for the laughs in your situation -- trust me there are a lot there. You'll read some really amusing incidents on these forums as well as the heart-breaking, spirit-crushing stuff. More than anything, you will find a corps of very strong men and women who understand exactly what you are going through, but who will never be so consumed with their own situation that they won't stop to help another.

You can do this ... really.

Best,

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Renata (and Jerome-in-Heaven)


Wed Jan 21, 2009 12:33 am
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Cheryl,

Glad you are feeling a bit better :)

At times I feel the same as you. This is the hardest thing I have ever had to deal with and at the same time feel so sorry for my hubby that he has to go through this.

Perhaps tomorrow will be a happier one for you. :D

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Dianne C.


Wed Jan 21, 2009 12:39 am
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Joined: Sat Dec 13, 2008 12:52 am
Posts: 118
Location: BC, Canada
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Hi Cheryl, glad to meet you and like the others sorry it is under these circumstances. There is also another site that I find very helpful and it is for married couples dealing with LBD. http://groups.yahoo.com/group/LBD_caringspouses/

I have found it kind of hard manouvering around in there but once you've got it then it is no harder than this one.


Wed Jan 21, 2009 3:03 pm
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Joined: Sun Aug 26, 2007 9:44 pm
Posts: 118
Location: Nashville, Tn
Post response to Renata
You are right - there are things that can be really funny. Ron and I laugh sometimes at our "conversations". I think I "go over the edge" after a really confusing, nuts time period and just feel so overwhelmed. I do get that "is this all there is???" feeling. Of course, then that is followed by the guilt because my husband has Lewy - not me..... We are going to DC tomorrow (Thursday) and I don't know whether I am looking forward to it or dreading it. He isn't doing so well right now in the confusion area.... but he realllly wants to go so we are going to go and have a good time and be glad we can still go sometimes...... of course, I am the dresser, reminder, helper person but it will be enjoyable for me too. I am grateful that we can still go and that we can afford it..... That's my "what I am thankful for" comment. Now I need to go and make sure we have all the pills, boarding passes, hotel stuff, clothes, belts, etc.... so that we can make it to the plane on time tomorrow!!! THANKS YOU GUYS - ABSOLUTELY NO ONE "GETS IT" BUT YOU!!! WISH WE COULD HAVE A "GIRLS TRIP".... UHHHHHH YEAH SURE......


Wed Jan 21, 2009 3:14 pm
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Have a great time!!! Yep, a caregiver vacation might be nice. :)

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Dianne C.


Thu Jan 22, 2009 1:41 am
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Joined: Sun Aug 26, 2007 9:44 pm
Posts: 118
Location: Nashville, Tn
Post ugh - trip not so good
supposed to go home tomorrow but leaving dc today - husband too disoriented and confused and wierd... sad, sad, sad... exhausting - cheryl


Sun Jan 25, 2009 1:21 pm
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Cheryl,

Sorry the trip didn't go as well as planned. Your LO probably does better in his own familiar surroundings. Change can do strange things to them.
We rarely travel anymore as my LO gets confused in hotels and it creates a lot of stress for him. More stress equals changed personality. Much as he would like to travel he just doesn't do well away from home. One night would be the max for him.

Look at the bright side..at least you had a couple of days away and that is much better than none. :)

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Dianne C.


Sun Jan 25, 2009 3:52 pm
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Joined: Thu Apr 18, 2013 7:43 pm
Posts: 2
Post Re: Welcome to our Forums!
This is my first login. I've been reading many comments and situations and it's like someone is looking in my window. My husband was diagnosed about 6 mos ago, although as I look back this has been coming a long time. We too are planning a trip. He's very excited about it and I'm very nervous. Will be gone (staying with my sister in her home) for 6 days. I just hope we does well. The meds are working good for now. He has days of being tired and quite confused. Sometimes sobs, almost uncontrollabley, for a short while then is okay. He gets confused as to where he lives and if I always stay with him. I live in the country away from all my family. I don't know how long I can stay here. It just depends on how he does. I also wonder how long before I can no longer care for him alone. Well, enough for now. It's so good to "talk" with others that can maybe shed some light and understanding.


Sun Apr 21, 2013 10:28 am
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