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Joined: Sat Dec 13, 2008 12:52 am
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Location: BC, Canada
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Does LBD kind of come and go? Henry was with his walker on a daily basis and falling when he didn't have it. Lately he has been using his cane on and off and he doesn't seem to use his walker anymore at all. Is this just a deception of the disease or what is going on here. Also he, like this morning, told me that he was having trouble with confusion and it was really bad but later on it seemed to be gone again and tonight he is fine. He wants to go away for a few days when the snow clears but is it alright to take him out of his surroundings. He says that he will be fine because he will know that we are on holidays - anyone have any experience with this. I am tending to think that he will be fine because looking back now I can see that this has been ongoing for years and my sister can see it too - she is the RN in the family and she also had never heard of LBD before but has since done a lot of looking into it. She works in the OR in a hospital in Metarie (outside of New Orleans) and she said that most of the medical staff there that she works with also had never heard of it.

That was more than what I started to ask, sorry.


Mon Dec 29, 2008 1:50 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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I have not heard of the physical symptoms of LBD coming and going. Seems like one other person at some point over the last year asked the same sort of question; you might do a search.

Of course cognitive fluctuations are part of LBD.

Why not experiment and take him some place and see how he does?


Mon Dec 29, 2008 2:07 am
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Location: BC, Canada
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That's what I was thinking of doing with taking him away. We have some friends in Bremerton WA - about 2 1/2 hours away from us as long as there is no traffic tieup going through Seattle and we stay at a motel there that he is used to and so I told him that we would go away in early spring if he was up to it, the weather should be better at that time. I thought going there if we had to come home in the middle of the night we could do that. I do all the driving so that is no problem.

I will do a search for the other question. Thanks.


Mon Dec 29, 2008 2:12 am
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If you look on the LBDA website, there's nothing there about physical symptoms of LBD coming and going.

I forget if you have a good MD or not where you are now located. I would encourage you to review these new symptoms (or lack thereof) with the MD. Could be that your husband doesn't have LBD.


Mon Dec 29, 2008 2:19 am
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He was dx by a gerintologist and his team, my dil (who is an MD) was in on the session so she could answer any questions that were asked. First the social worker came to the house and did some testing and got all of Henry's background info and then the gerintologist came and did more testing and then the team of 5 doctors got together and the result that they all came up with was LBD. The only thing that I am finding different so far is this coming and going and the only thing that I have seen on here so far (and that was without doing a search) was one person saying that they had gone on a trip and he asked his wife everyday who she was and then when they came home again and I guess got back into routine things were pretty much back to normal. Sorry I can't remember who that was but it was a few weeks ago when I first joined and was reading so much that I was trying to absorb so much that at the end I had to step back and take a breath and sort out what I had already read. :?


Mon Dec 29, 2008 2:30 am
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Dear Jasper,

My mother-in-law's physical symptoms and cognitive symptoms fluctuated also. When her cognitive abilities were doing okay , her physical symptoms were bad. When her physical symptoms were good, her cognitive abilities were bad. I know it sounds crazy, but when she was walking around really well and with some speed in her step I knew a bad psychiatric episode was coming up. This is just a thing that we experienced. It does not mean your loved one will react the same way. That is what is so frustrating with this disease. There is no set schedule of events or symptoms we can gauge our loved ones to in order to be able to make the right decisions for them. Everything is on a day to day basis and you sound like you are doing the best for your loved one. You know this person better than anyone and you have to trust yourself. If you think Henry will do fine, he probably will.

Joyce K


Mon Dec 29, 2008 11:20 am
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Thanks Joyce that is about the same as Henry is doing but his cognitive symptoms don't even seem to be getting as bad when his walking picks up. They are still not alright though but I can talk to him about it. Maybe it is also just the fact that we have been in this new house and city for 4 months now and he is far better settled in and is now viewing this as home and not worrying so much about the other house not being sold yet. I am finding though that the tiredness seems to be really hitting him hard and maybe once he can get outside more when the spring comes then I am hoping to see an improvement in that.

Also I have been reading up a lot on vitamin B12 and I will be asking our new doctor about that. My sister said not to put too much stock in B12 pills alone, that the shots would probably work a lot better as they are bound with something like calcium, dil agreed. The reason that I am looking into this is because of Henry's concern over the darn pain meds, my dil told me to get a bottle of B12 and keep it on hand and when he asks for a pain med to give him one of these. I will start him off on the pills and see if there is any difference at all until we get to see the new doctor. The gerintologist suggested Exelon but he doesn't prescribe so the new doctor is away right now but will be back for January. Also our doctor years ago - and I believe now that this was already started way back when with Henry - used to give Henry a B12 shot and he would perk up within the hour. That doctor has since died and his files weren't kept up that well so we don't know what the B12 was combined with, but within myself I have to see how this affects Henry now and so I will start with the pills.


Mon Dec 29, 2008 4:04 pm
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Jasper --
A couple of thoughts that might help...

1. With B12, many elderly no longer produce the enzyme that allows the body to absorb B12. That is why the B12 pills are useless -- the body can't absorb the B12. The shots, on the other hand, go directly into the blood stream, bypassing the absorption issue and working directly on the blood. So the B12 shots would be beneficial (Jerome has been getting them for several years -- they really do wonders).

2. With the walker/cane issue ... it may be as simple an explanation as that the cognitive process of "working" a cane is simpler than "working" a walker. Jerome is very comfortable with his cane, but when he's tried to use a walker it seems to discombobulate him.

3. Your idea to take a short trip to a familiar place is a good one. The few times Jerome and I have traveled, it really did provoke a lot of anxiety and he needed lots of time for naps and just being physically close to me -- like an anchor of familiarity. My advice would be to not make a big deal of the planning and preparing - that can start to "loom" in our LO's mind. Just quietly pack and prepare, and the day before, or the very day of the trip, suggest that you two go for the little trip you two have been talking about -- "how about today?" Make it as unthreatening an outing as possible.

Good luck!

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Renata (and Jerome-in-Heaven)


Mon Dec 29, 2008 4:46 pm
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Hi Jasper,
Just because 5 MDs believe your husband has LBD doesn't mean he has LBD. It's important to let the main MD know when there are new symptoms.
Robin


Wed Dec 31, 2008 1:23 pm
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I know what you are saying Robin but looking back I have watched the progression of this disease over a period of at least 20 years - it was a very slow progression and I could always see a 'reason' for what was going on. It was when we moved in September that so much more was happening with his mind and with his body. The doctor that examined him was very, very thorough and it wasn't a snap decision that was made, it was done over a few weeks. This gerontoligist was a pharmacist and when he got tired of always hearing that it was either Altzheimer's or Parkinsons he went back to school and got his degree - even I knew it wasn't either Parkinson or Altzheimer's but until I was given the words Lewy Body and the two sites to look up on the net I didn't know what it was but it all fits now. Even I had told our doctor and the psychiatrist that it wasn't Altzheimers or Parkinsons when he was being diagnosed before the gerontoligist got into it.


Wed Dec 31, 2008 3:46 pm
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It's just that I recvd another reminder a few hours ago of someone whom EVERYONE was sure had LBD and upon autopsy it turned out there wasn't a single Lewy body to be found. And the folks involved are perhaps the smartest I know in the LBD caregiver community.


Wed Dec 31, 2008 4:42 pm
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Robin,

I made a new post under symptoms and diagnosis and I should have posted it under behavorial issues. Tried to copy and paste but it is not working. How can I get it under the proper heading?

Thanks

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Dianne C.


Sun Jan 04, 2009 12:27 pm
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Dianne C -
I don't exactly understand the problem. You can delete any post you've created as long as someone hasn't responded to it. You can create a new post under any sub-forum you want.
Robin


Sun Jan 04, 2009 6:51 pm
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Will rewrite it under the proper topic and delete the other one.

Thanks

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Dianne C.


Sun Jan 04, 2009 10:30 pm
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Post Re: More questions
I have found with Mom that if she is stressed and it doesn't take much to
stress her, even the thought of getting ready to go to the grocery store will
make her mentally & physically worse. I thought I would help her out with birthdays, anniversaries, etc of her children, grandchildren & great gc's, so in
"06, I bought her an '07 calendar and wrote the occasions in their proper locations. We also put her doctor appointments on this calendar. Poor Mom
can't keep the days straight, even though we have an erasable board next to the phone with the day of the week, month & date on it, she still thinks that she has to get ready for something most of the time. Needless to say,
her new "09 calendar is blank and I don't tell her if she has an appointment until it is almost time to leave the house. I took her to Augusta to see my sister, who is autistic and was badly burned in October "08. I rented a motel room and her regular caregiver even went with us for 3 days, but it was such a hard trip (3.5-4 hrs in vehicle),I don't think I would ever try to do something like that again. She is much better in her environment. I felt like it was my fault that she was affected so physically
but I felt that she needed to see that her baby (44) was alive albeit burned. I think I was wrong.


Tue Jan 13, 2009 3:58 pm
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