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 another newbie ? 
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Joined: Tue Feb 17, 2009 1:38 am
Posts: 10
Location: Wisconsin
Post another newbie ?
My husband was dx'd with dlbd 4 years ago. We have him on 4.5 of exelon now. He has some days that are so good that he has taken the memory assesment tests and passed with flying colors this last summer. The insurance requested the test because they send out a social worker every month and an r.n. and they doubted what i said and ordered the test done by a second dr. He said Larry did not have lewy because he should be pretty bad now after 4 yrs. and said he did not know what Larry had. He did admit maybe some kind of dementia but early stage. Thankfully he recommended we stay on the exelon. I felt like a big LIAR!
A couple of weeks ago we seen his reg. nuerologist (connected with Mayo Clinic) and he listened to what I said. My husband actually looked at the dr and said that everything I said was true. The dr. said he believes Larry has lewy because of the parkanisms and the cognitive problems and paranoia and depression and anxiety and all the fluctuations. My hubby is also type 2 diabetic and cannot understand at all any concept of carbs versus protien ect.
I have one question right now does anybody have problems now during winter with their LO having problems staying warm. My hubby has the thermostat at 76 and wears layers of clothes and still covers up with blankets and wears a stocking hat in the house,
:?:

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Cathy age 52 Hubby Larry LBD dx'd 2005


Tue Mar 03, 2009 11:59 pm
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Joined: Thu Feb 19, 2009 12:45 am
Posts: 103
Location: St.Paul
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Hi Cathy,
So sorry about your husband. It is a very sad disease. Glad you are here with us. I know this site will help you as it has me.
Yes, my LO is freezing all the time. We live in Minnesota so it is cold here, as you know living in Wisconsin. I dress him with long underwear every day, heavy socks and an undershirt, long sleeve shirt and a heavy sweatshirt. Plus our gas fireplace is on constantly along with the heat set at 74. Doesn't help my hot flashes at all! I usually have just a t-shirt and light weight pants on as I am so hot in the house. When he falls asleep I turn things down to get some relief. Sometimes I stand outside just to cool off.
LBD is a tricky thing. In the beginning, I too, thought I was imagining some of the symptoms. The fluctuations drive one crazy. That's why people think they are okay and you are making it up because in the early stages they can mask alot of their symptoms. My LO was very good at that when the kids would come around. I know they doubted what I was telling them. Now they don't. My LO is in stage 4. Very bad spells at times. I figure he has has this since around 2002-03. Each month now he is getting a bit worse and not recovering like he use to.
Hang in there. Again, access this site all the time and read all the posts. It sure helped me get a much better insight and be able to deal with the stress of this horrible disease. It is heartbreaking and very difficult to witness and experience. We are here for you - don't ever forget that.
I will pray for you.
Connie

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In & out of stage 4.


Wed Mar 04, 2009 12:45 am
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Joined: Sat Dec 13, 2008 12:52 am
Posts: 118
Location: BC, Canada
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Yes my LO also freezes most of the time and then once in awhile he will get hot and ask me why the heat is up so high! Go figure. LOL - you have to laugh to keep from crying. I also go through the hot flashes and the heat goes down when he goes to sleep. I use the dog lots of times to get outside into the cooler air for a bit of a breeze. We live in southwest Canada and our winters, except for a few weeks are relatively warm and right now, on the days that it's not raining I just wear a sweater outdoors. Also with the diabetes Henry can't understand the concept of the carbs vs proteins either and he figures if something says that there is no sugar added - it is game and you can eat as much as you want. I can control it as long as I am here and haven't stepped out or haven't fallen asleep on the couch and he is up wandering. Other than those two things though we are going through some pretty good times this last little bit. It is such a relief to be this stress free for awhile.

Cathy I agree with Connie, we are all here for you and you can access anytime. Even if just one thing that we say helps then this whole site is well worth being here.


Wed Mar 04, 2009 2:02 am
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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Jasper,
If not understanding proteins, carbs, sugar, and fat is a sign of dementia, I guess you'll have to include me. I'm completely inept.
Robin


Wed Mar 04, 2009 3:46 am
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Joined: Fri Feb 29, 2008 7:02 am
Posts: 537
Location: MI
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My Mother initially had just the Parkinson's diagnosis- but has had cognitive problems since about the same time. Doctor's blamed it on age. The LBD was very gradual for a long time. We didn't get the LBD diagnosis till she got the hallucinations and a really quick, steep decline. Her regular doctor still said age. A neuralclinical psychologist did the testing and diagnosis. He was found by her pain management doctor (the only one who took us seriously!)
She'll either be freezing or roasting. -seems like something in her really varies. either I'm roasting or freezing(opposite of her)
Sharon

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Wed Mar 04, 2009 8:25 am
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Joined: Fri May 11, 2007 12:54 pm
Posts: 115
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Dear Cathy,

So sorry to hear about your husband, but you are in the right place for good advice and support. My mother-in-law was freezing all the time too. It didn't matter if it was winter or the hottest day of summer. It was so strange to see her like this because when she was well, she was always too hot. In fact she and her husband used to always have "thermostat wars". He was always cold and she was always hot. I have read that Lewy Body patients "internal thermostats" do go haywire. I just tried to keep mom as comfortable as possible and tried not to overheat her even when she complained she was cold. This is a tough journey, but we are all here for you and will try to help.

Joyce K


Wed Mar 04, 2009 10:25 am
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Hello Cathy,

Boy could I ever relate to THIS subject :) We have the "war of the thermostats" year round. He wants the temp at 78...or higher. I told him lets compromise at 72...right...for an hour! :lol: He is cold all of the time. His fingers and hands are like icecubes. We laugh about it sometimes...say he passed away 2 weeks ago...just kidding. We have pretty mild winters here and hot summers..no matter, he wears sweatsuits all year. Told the neurologist about this. He stated this is seen in a lot of these patients.

Good luck to you
Dianne

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Dianne C.


Wed Mar 04, 2009 11:32 am
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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Dianne C.,
This is called thermoregulatory dysfunction. It's very common in PD and PD-related diseases such as LBD. Can your husband wear longjohns? You might get a space heater for him.
Robin


Wed Mar 04, 2009 11:36 am
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Robin,

From your lips to LOs ears :) ! I wanted to purchase a space heater for the bathroom as when he showers he turns it up to 80. He won't hear of having one for fear of fire. We have tried to explain that the new ones have automatic shut offs if tipped over,etc. No way, not in his house! That would solve half of the problem.

Have not tried the long johns as he already has plenty of problems getting his pants down in time to go without having an accident. Its a good thought though and will give it a try. I told him to wear mittens/gloves just till his hands warm up but he refuses to. And therein lies our biggest problem...he is very opinionated and obstinate regarding many things which makes it more difficult caring for him. If only he would/could work with us more. I just continue trying and looking for solutions that are acceptable to him.

Thanks for all of the information and support you provide.
Dianne

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Dianne C.


Wed Mar 04, 2009 1:18 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 743
Location: LA
Post Things change
There comes a time when you will be making the decisions and as you move into that time I find less talk about things the better. If you can just let things "happen" without asking questions. Example: Holding his hands to help them be warm, slip his hands into the gloves while still caressing his hands... or, you know how warm and comfy the blankets in the hospital feel when they get them from the microwave? Make that step two before you ease him into the gloves. I know it takes more time but it will eventually make him happy [and you also]. AND... just as you can't ask a child a question; the answer will always be "No". Just begin quietly doing things. sometimes it may work.. Hey, one out of three is better than none. and anything is better then an obstinant hubby.

Just a thought. Maybe not for the gloves, just remember doing with kindness without asking.

DrP

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"See this lady she's 85 but she's nice" When I joined in 2007 this is the way Mr B. introduced me to the people only he knew,he added "You need to listen to her" he was 89 then, death due to Lewy Body Dementia/pneumonia in 2009.


Wed Mar 04, 2009 2:34 pm
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Joined: Thu Aug 30, 2007 6:15 pm
Posts: 231
Location: Charlotte, NC
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We have the themperature thing going....alll the folks in the facility think it is cold all the time, but them my LO will all of a sudden say it is HOT, face gets red, etc. I have decided to put him in shorts, short sleeve shirts and a sweat shirt that zips up the front. That way he seems to be warm enough and the sweat shirt can be easily removed when he gets HOT. They keep the facility VERY WARM, I walk around in short sleeve shirts all winter...when giving him his shower I break out in a sweat. This is a very strange disease indeed.


Wed Mar 04, 2009 2:37 pm
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Location: Henderson, Nv.
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Oh, Dorthea...you are wise beyond words. Why didn't I think of warming a towel like the hospitals do???? Didn't see the trees through the forest...or is it the other way around?? :)

I try to do things without asking, have had to for some time now, but he can get very upset at times when I do that..."Not in MY house" He will go and check the thermostat if he is cold and then raises a fit if he finds I have lowered it. (sometimes he is pretty smart) I try to take it with a grain of salt...or five pounds of salt. :) Whatever it takes to make him comfortable and our life as simple as possible.

Does Mr. B ever get upset and nasty with you or does he remain quite calm and even tempered? I think that is the most difficult part for me to deal with. When a wonderful happy person becomes something they never were before. Its like dealing with a total stranger you know nothing about.

I do believe you are about one of the kindest people I have met. I try my best but don't know if I will ever make it to your status.

I do believe like you...if you get one out of three ... or one out of ten...we are ahead of the game.

Kind thoughts to you
Dianne

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Dianne C.


Wed Mar 04, 2009 3:26 pm
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Joined: Sat Dec 13, 2008 12:52 am
Posts: 118
Location: BC, Canada
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Robin I did not say that 'not understanding proteins, carbs, sugar, and fat is a sign of dementia' all I was saying was that I was agreeing with Cathy and could appreciate where her LO was with the carbs vs proteins. I think that this is something, that for some reason, is hard for men to comprehend.


Wed Mar 04, 2009 3:59 pm
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Joined: Sat Oct 06, 2007 4:28 pm
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Location: LA
Post Kind??? Wise???
Dianne, brief answer here because this is about the Christmas gift I/we prepared for Mr B. and I need to discuss that completely in the Respite section. Let me just say if you could have seen our house last night in the middle of the night after I had shown and read everything repeatedly for two hours with Mr B begging me to turn on the lights and finally wanting me to get him all 24 of his medal boxes when I only had five [the true number] and him talking with his head buried in in his chest so I could hardly hear him and I could not fulfill his requests where he finally said, "JUST THROW THE %)&%$# THINGS IN THE CORNER". With that he pulled the covers over his head and went to sleep. He slept all night and so did I, This morning, he was his sweet self. Believe me, I know those temper trantrums. I know who has always been boss, etc.

I also want to turn on the lights for him.

I remember a school Tshirt my grandson wore inscribed with the motto, "We do our best and the Lord does the rest". That's all you and I are doing here.

DrP

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"See this lady she's 85 but she's nice" When I joined in 2007 this is the way Mr B. introduced me to the people only he knew,he added "You need to listen to her" he was 89 then, death due to Lewy Body Dementia/pneumonia in 2009.


Wed Mar 04, 2009 4:50 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Jasper,
I was joking! Guess I should've used a smiley. :oops:
Robin


Wed Mar 04, 2009 5:31 pm
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